Christmas (aka Close Encounters of the Holiday Kind)
More than several people have e-mailed to find out how mom is doing and how the holidays were for her. Christmas was a poignant time for us all. Each one of us was deeply moved and affected by mom's presence at home with us this year. Quite honestly, the holiday was a wonderful, difficult, vulnerable, and magical time for each of us, each in our own way and from our own perspective. It's been a long haul these last 18 months but all worth the while.
We all spent Christmas Day and Christmas Eve at mom and dad's as we usually do. We decided to order in on Christmas Eve and brought the food Christmas Day. Mom and Dad's house is tiny and cramped to say the least, so there are people in every nook and cranny!! Over the course of the two days, Claudia played Christmas carols on her guitar and we sang with mom, we watched Christmas movies, while others watched ball games or played video games in a different room, and we ate and played board games as well. A typical family holiday once again.
We went to church all together on Christmas Eve and found a beautiful surprise in the bulletin. One of mom's dear friends wrote a column which would be present in the bulletin for the entirety of the holiday weekend. Here is what she wrote:
Let's Talk by Flo
Dorothy (Dotty)
This is a season of faith, love, and yes, even miracles. today i bring you a story about one of our parishioners, Dotty, who in June of 2010 suffered a brain aneurysm followed shortly thereafter by a stroke. Dotty's medical journey began at [a local hospital]; and from there, she has gone on to be a patient at [a local skilled nursing facility].
Dotty and Jean and their four children, Kathy, Terry, Anthony and Claudia have been very active parishioners since the inception of our parish. prior to becoming ill, Dotty had taken an active role in our church choir as a choir member and as a cantor. Dotty had also been a lector. Both Dotty and Jean have taught Religious education classes, and Jean ushers at the 8 a.m. Mass on Sunday.
As you can see, Dotty and Jean have always led by example; and their children have followed in their footsteps working and praying for the success of our parish. as an example, Claudia and her husband have enjoyed working with the younger parishioners by helping them put on plays while Terry was an active volunteer at Christa House.
In the early stages of Dotty's medical problems, doctors were uncertain as to her outcome. For a few months, Dotty was in a coma; and she was on a ventilator in order to breathe. fortunately for Dotty, her family has never given up hope. They adorned her room with family pictures, spiritual quotations and many educational activities that would prove to be advantageous to her recovery. every night Dotty's children would e-mail relatives and friends about her daily progress. In turn, those loved ones would send out the e-mail to so many of you who continually pray for her speedy recovery.
I must say that Dotty's family has taken the word ['advocacy' to a new level. they question her care, document her progress and they have learned how to work with her physically and mentally. The [family], including the grandchildren, are always at her side encouraging her and filling her heart with so much love. I once told her daughter that "We don't know what life has in store for us; however, you have all certainly stepped up to the plate dedicating your time, talents and love in order to ensure a bright future for your wife, mother, grandmother."
Although Dotty has gone through many ups and downs on her journey, today she is able to stand, to speak, to recognize people and to feel the love that surrounds her. Dotty's family is now praying that in the not too distant future they will be able to bring her home.
This family is truly an inspiration for all of us to emulate. We must continue to trust in God, keep the faith and never give up hope. Remember, 'Don't quit five minutes before the miracle happens."
The pastor spoke about many topics in his homily and mentioned mom and her story among them. It was a deeply touching moment for us all. It was wonderful to be sitting with mom at church again and singing hymns and praying together with her. There was no other great feeling like it. We all thanked God that mom with us. She was home at last...with us...together again. What a blessing it was.
Thank you all for your continued support in prayer. We pray for you all as well. On this eve of the New Year, we offer you the prayer of our family that we used to offer every evening at the dinner table: May God keep you and yours "happy, healthy, and holy" in the year to come.
‘“The LORD bless you and keep you; the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace.” Numbers 6:24-26
Saturday, December 31, 2011
Friday, December 23, 2011
Mom Update, December 23, 2011, Friday
“You are the God
Who performs miracles;
You display Your Power
Among the peoples.” Psalm 77:14
As I reflected about the upcoming holidays and the time to write this year’s reflection came closer and closer, all that came to me were 2 words: ‘miracle’ and ‘grace.’ Somehow, in my mind, these 2 words didn’t appear to go together, and that confused me a bit. To me, grace is something that God gives you to get you through something, and a miracle, well, that’s something you hope for, not something you need help to get through. At times, over these last weeks of contemplation, I thought that perhaps I didn’t hear God correctly…or that perhaps, He actually meant for me to write about only one of these 2 things and not both. I, of course, was wrong; God had a message. These last 18 months have been very difficult for our family, full of many ups and downs…honestly, more downs than ups at best. When we lost the mom we once knew to an aneurysm that burst and then a stroke and a slow, drawn-out recovery from the brain injury that followed, it was devastating. God taught me, for one, how to focus on the moment, and in so doing, He taught me about the many ‘wonders’ that surround us each day that go unnoticed. I wrote about these wonders last holiday season (http://dottysupdates-kgranelli.blogspot.com in one of the December blog posts).
We walked a long and uncertain path over these last 18 months…but mom is home at last with all of us! The miracle happened! It was a most difficult journey for our family to get to this point, but we made it at long last. And so, it is here with all this in mind, that I began to write this year’s reflection. I decided to trust that God had a plan when He gave me the words ‘miracle’ and ‘grace’ to chew on over these last few weeks, and He did. As always, I began by looking up the definitions of these 2 words, and that’s where God ‘wowed’ me once again!
Before I define the 2 words, let me back up a bit. At a Hanukkah party that Lenny and I attended the other night, we learned that Hanukkah is called the Feast of Dedication. Dedication, here, means to freely and openly give over to God---with arms outstretched. Our family had to do this in the first moments of the crisis we faced together…we needed to give everything over to God before we could do anything for mom. Perhaps, most importantly, we even needed to give mom over to God as well. We had to let go of our fears and trust God…trust in the fact that He Alone knew best. That He had a plan for us, even in, and despite, the circumstances surrounding us. As time went on during this journey, we learned to refocus our wishes for mom’s recovery and to turn our attention to simply making mom’s life the best it could be at any given moment. God taught us how to let go, give it all to Him, and then give His Love to someone we love.
The word ‘miracle,’ in the scripture verse at the top of this reflection, means ‘marvelous thing, wonder’ and it comes from the root word, ‘pala’ (paw-law) which means ‘to be or to make great, wonderful…(and here comes the ‘WOW’ part)…or to make difficult.’ To be or to make difficult??? Aren’t we talking about a miracle here??? Something great and wonderful and joyous?!!! The word miracle, or miracles, depending on the scripture verse, means ‘to accomplish, be busy, commit to…’ the list goes on. The point being: Miracles are hard work. Whether the miracle is performed solely by God Alone, or whether through Him, we get to take a small part in the miracle. Who knew that something wonderous also required difficult work?
Hanukkah is also called the Festival of Lights. And so, as I sat and thought about the past year and a half, and this season of miracles, another of my favorite scripture verses came to mind:
“The people walking in darkness have seen a great light; On those living in the land of the shadow of death a light has dawned.”Isaiah 9:2
Surely, over these last 18 months, our family (and, I am sure, many of you) has walked in the darkness as well as in the shadow of death. But… we have also bore witness to seeing the “great light” that Isaiah the prophet spoke of so many years ago. Yes, we certainly have seen God’s Light manifest in so many ways over the last 18 months. God’s Light is His Life, His Character, His Strength, His Power, His Love. Indeed, God’s Light has dwelled among and in us during this journey. It is here, at this personal revelation that the word ‘grace’ made sense to me. Here, where the 2 words with such seemingly diverse meanings connected together; went hand in hand.
The menorah is the symbol of God’s Light and what keeps that light burning is oil. Oil represents God’s Holy Spirit. And God’s Holy Spirit is sometimes poured on us in the form of ‘grace’ for the moment. The word ‘grace’ means many things; among them, it means: “To bend or stoop in kindness to an inferior; to bestow; to lend honor to by one’s presence of manner or act; especially the divine influence upon the heart and its reflection in the life.” Wow. I couldn’t help but think, “Isn’t this the very thing that God did for us along our journey?” God bent in His Kindness to an inferior (our family) to lend honor to us by His Awesome Presence in a manner that bestowed us with His Divine Influence upon our hearts so that we could endure this journey…this difficult miracle, if you will. Sometimes, God seems to ‘magically’ perform a miracle that changes lives forever. Other times, He allows us to take part in the making of that miracle…it is this type of miracle that presents itself at first as a difficult journey in some way or other before the joy comes. And even the time of joy itself serves to mark the beginning of yet another difficult journey forward. Our family experienced this type of miracle.
Our focus, as a family facing the past year and half’s tragedy in mom’s life, could never be about raising mom up from her illness…not in the moment anyway. God showed me that our focus was always to be about shining God’s Light brightly upon mom so that her life, no matter what the condition was, could be better…more peaceful, joyous, content, surrounded by love. By God’s Mercy as well, we just happened to experience the added bonus of seeing God’s miracle manifest in our deepest desires and wishes—mom came home again to us.
Our family has much to be grateful for this year. Only God, Himself, knows what miracle you are hoping for today. Sometimes the miracles are quick to happen. Sometimes they are not. One thing I know for certain: I have learned that miracles aren’t always easy to come by. Sometimes, miracles can lead down the road of a difficult journey, so “Don’t quit 5 minutes before the miracle happens.” I thank God that, through His Grace, we didn’t.
Wishing you and yours much joy, peace, love and the many miracles of God.
Love Kathy and Lenny
Who performs miracles;
You display Your Power
Among the peoples.” Psalm 77:14
As I reflected about the upcoming holidays and the time to write this year’s reflection came closer and closer, all that came to me were 2 words: ‘miracle’ and ‘grace.’ Somehow, in my mind, these 2 words didn’t appear to go together, and that confused me a bit. To me, grace is something that God gives you to get you through something, and a miracle, well, that’s something you hope for, not something you need help to get through. At times, over these last weeks of contemplation, I thought that perhaps I didn’t hear God correctly…or that perhaps, He actually meant for me to write about only one of these 2 things and not both. I, of course, was wrong; God had a message. These last 18 months have been very difficult for our family, full of many ups and downs…honestly, more downs than ups at best. When we lost the mom we once knew to an aneurysm that burst and then a stroke and a slow, drawn-out recovery from the brain injury that followed, it was devastating. God taught me, for one, how to focus on the moment, and in so doing, He taught me about the many ‘wonders’ that surround us each day that go unnoticed. I wrote about these wonders last holiday season (http://dottysupdates-kgranelli.blogspot.com in one of the December blog posts).
We walked a long and uncertain path over these last 18 months…but mom is home at last with all of us! The miracle happened! It was a most difficult journey for our family to get to this point, but we made it at long last. And so, it is here with all this in mind, that I began to write this year’s reflection. I decided to trust that God had a plan when He gave me the words ‘miracle’ and ‘grace’ to chew on over these last few weeks, and He did. As always, I began by looking up the definitions of these 2 words, and that’s where God ‘wowed’ me once again!
Before I define the 2 words, let me back up a bit. At a Hanukkah party that Lenny and I attended the other night, we learned that Hanukkah is called the Feast of Dedication. Dedication, here, means to freely and openly give over to God---with arms outstretched. Our family had to do this in the first moments of the crisis we faced together…we needed to give everything over to God before we could do anything for mom. Perhaps, most importantly, we even needed to give mom over to God as well. We had to let go of our fears and trust God…trust in the fact that He Alone knew best. That He had a plan for us, even in, and despite, the circumstances surrounding us. As time went on during this journey, we learned to refocus our wishes for mom’s recovery and to turn our attention to simply making mom’s life the best it could be at any given moment. God taught us how to let go, give it all to Him, and then give His Love to someone we love.
The word ‘miracle,’ in the scripture verse at the top of this reflection, means ‘marvelous thing, wonder’ and it comes from the root word, ‘pala’ (paw-law) which means ‘to be or to make great, wonderful…(and here comes the ‘WOW’ part)…or to make difficult.’ To be or to make difficult??? Aren’t we talking about a miracle here??? Something great and wonderful and joyous?!!! The word miracle, or miracles, depending on the scripture verse, means ‘to accomplish, be busy, commit to…’ the list goes on. The point being: Miracles are hard work. Whether the miracle is performed solely by God Alone, or whether through Him, we get to take a small part in the miracle. Who knew that something wonderous also required difficult work?
Hanukkah is also called the Festival of Lights. And so, as I sat and thought about the past year and a half, and this season of miracles, another of my favorite scripture verses came to mind:
“The people walking in darkness have seen a great light; On those living in the land of the shadow of death a light has dawned.”Isaiah 9:2
Surely, over these last 18 months, our family (and, I am sure, many of you) has walked in the darkness as well as in the shadow of death. But… we have also bore witness to seeing the “great light” that Isaiah the prophet spoke of so many years ago. Yes, we certainly have seen God’s Light manifest in so many ways over the last 18 months. God’s Light is His Life, His Character, His Strength, His Power, His Love. Indeed, God’s Light has dwelled among and in us during this journey. It is here, at this personal revelation that the word ‘grace’ made sense to me. Here, where the 2 words with such seemingly diverse meanings connected together; went hand in hand.
The menorah is the symbol of God’s Light and what keeps that light burning is oil. Oil represents God’s Holy Spirit. And God’s Holy Spirit is sometimes poured on us in the form of ‘grace’ for the moment. The word ‘grace’ means many things; among them, it means: “To bend or stoop in kindness to an inferior; to bestow; to lend honor to by one’s presence of manner or act; especially the divine influence upon the heart and its reflection in the life.” Wow. I couldn’t help but think, “Isn’t this the very thing that God did for us along our journey?” God bent in His Kindness to an inferior (our family) to lend honor to us by His Awesome Presence in a manner that bestowed us with His Divine Influence upon our hearts so that we could endure this journey…this difficult miracle, if you will. Sometimes, God seems to ‘magically’ perform a miracle that changes lives forever. Other times, He allows us to take part in the making of that miracle…it is this type of miracle that presents itself at first as a difficult journey in some way or other before the joy comes. And even the time of joy itself serves to mark the beginning of yet another difficult journey forward. Our family experienced this type of miracle.
Our focus, as a family facing the past year and half’s tragedy in mom’s life, could never be about raising mom up from her illness…not in the moment anyway. God showed me that our focus was always to be about shining God’s Light brightly upon mom so that her life, no matter what the condition was, could be better…more peaceful, joyous, content, surrounded by love. By God’s Mercy as well, we just happened to experience the added bonus of seeing God’s miracle manifest in our deepest desires and wishes—mom came home again to us.
Our family has much to be grateful for this year. Only God, Himself, knows what miracle you are hoping for today. Sometimes the miracles are quick to happen. Sometimes they are not. One thing I know for certain: I have learned that miracles aren’t always easy to come by. Sometimes, miracles can lead down the road of a difficult journey, so “Don’t quit 5 minutes before the miracle happens.” I thank God that, through His Grace, we didn’t.
Wishing you and yours much joy, peace, love and the many miracles of God.
Love Kathy and Lenny
Thursday, December 22, 2011
Mom Update, December 22, 2011, Thursday
Mom’s update December 22nd 2011
In the past week I have the same experience over and over… “If I don’t see you before the holidays have a Merry Christmas, oh yeah, where are you celebrating the holidays?”
How can I answer that question in under an hour? It is more than just saying, we are spending the holidays with my mom.
Roll back to last year at this time. A few days before Christmas, I was the farthest west that I travel as a consultant. I was at a CSE. I kept my phone on vibrate. It vibrated and it was a call from my sister, who calls every morning, so it didn’t seem unusual. I pressed the ignore button and then I received another call from my sister. Now, I received a call from my son (who was waking my mom that morning). OK this is serious, I need to take this call. Mom was “decanulated” and we all needed to get to the hospital in a hurry, it was life threatening. So what did I do next? I froze. I sat down and calmly explained to the group of people sitting at the meeting what had happened and that I needed to leave. (I was still sitting and NOT moving). I then got up and started for the hospital.
We spent Christmas Eve, Christmas Day, News Years Eve and New Years Day at mom’s bedside in ICU. I look back and realize now that I was numb. I was in a deep depression. I would wake up, stay in bed until I had to drive dad (my brother and I took turns) to the hospital and came back home and went to bed again (in the middle of the day) and then repeated the process in the evening. I think I wore the same clothes for a week. The thing I remember the most was that I didn’t FEEL anything. I didn’t feel angry, I didn’t feel happy, I didn’t feel sad. I just didn’t feel at all.
Mom recovered from this incident and as you know, “Don’t quit 5 minutes B4 the miracle happens” was our new mantra! We needed a saying, something to help us start over again.
I guess my holiday wish for everyone this Christmas is to FEEL something! Feel excited that Christmas morning will soon be here. Feel angry with the crowds at the stores. Feel sad thinking about Christmas’s past. Just FEEL.
I guess the feeling I feel the most this year is…GRATEFUL. I am grateful for the obvious, my mom, but I am also grateful for my dad. I am grateful that I was able to bear witness to my parent’s unconditional love for each other and their family. I am grateful for my husband for visiting with mom every week and working with her to help her get better. I am grateful for my children, my brother and sisters and nieces and nephews who worked tirelessly for the good of mom. I am grateful for my cousins who came to work with mom.
In this beautiful Christmas Season, be grateful for all the good you have in your lives and………..feel the love of Christ!
~Claud
In the past week I have the same experience over and over… “If I don’t see you before the holidays have a Merry Christmas, oh yeah, where are you celebrating the holidays?”
How can I answer that question in under an hour? It is more than just saying, we are spending the holidays with my mom.
Roll back to last year at this time. A few days before Christmas, I was the farthest west that I travel as a consultant. I was at a CSE. I kept my phone on vibrate. It vibrated and it was a call from my sister, who calls every morning, so it didn’t seem unusual. I pressed the ignore button and then I received another call from my sister. Now, I received a call from my son (who was waking my mom that morning). OK this is serious, I need to take this call. Mom was “decanulated” and we all needed to get to the hospital in a hurry, it was life threatening. So what did I do next? I froze. I sat down and calmly explained to the group of people sitting at the meeting what had happened and that I needed to leave. (I was still sitting and NOT moving). I then got up and started for the hospital.
We spent Christmas Eve, Christmas Day, News Years Eve and New Years Day at mom’s bedside in ICU. I look back and realize now that I was numb. I was in a deep depression. I would wake up, stay in bed until I had to drive dad (my brother and I took turns) to the hospital and came back home and went to bed again (in the middle of the day) and then repeated the process in the evening. I think I wore the same clothes for a week. The thing I remember the most was that I didn’t FEEL anything. I didn’t feel angry, I didn’t feel happy, I didn’t feel sad. I just didn’t feel at all.
Mom recovered from this incident and as you know, “Don’t quit 5 minutes B4 the miracle happens” was our new mantra! We needed a saying, something to help us start over again.
I guess my holiday wish for everyone this Christmas is to FEEL something! Feel excited that Christmas morning will soon be here. Feel angry with the crowds at the stores. Feel sad thinking about Christmas’s past. Just FEEL.
I guess the feeling I feel the most this year is…GRATEFUL. I am grateful for the obvious, my mom, but I am also grateful for my dad. I am grateful that I was able to bear witness to my parent’s unconditional love for each other and their family. I am grateful for my husband for visiting with mom every week and working with her to help her get better. I am grateful for my children, my brother and sisters and nieces and nephews who worked tirelessly for the good of mom. I am grateful for my cousins who came to work with mom.
In this beautiful Christmas Season, be grateful for all the good you have in your lives and………..feel the love of Christ!
~Claud
Monday, December 19, 2011
Mom Update, December 19, 2011, Monday
Hello Everyone!
Mom continues to progress at home but the progress is slow...much slower than when she was at the facility receiving therapies on a daily basis. She did walk a few steps both Friday and today with the physical therapist. She does better with the therapists than she does with us. She tends to "blow us off" a bit or tell us she can't do something but not so with the therapists. Speech hasn't started yet (the therapist is sick), OT and PT are twice a week. It is largely our responsibility, as her family, to rehabilitate her ourselves now that she is home. We need to get into a real schedule. Right now, it's whoever is around is around---we need to get more structure.
Mom's friends continue to faithfully visit and the choir from church came to sing Christmas carols to mom in the back yard on Sunday afternoon. This touched mom greatly. She misses choir.
Generally, mom sleeps through the night. She has days, here and there, when she cries alot though. She feels badly about not being able to do the things she used to do pre-head injury. For the most part though, she is content. We continue to work on her physical exercises as well as the mental ones. We still do Life Skill work sheets and puzzles and crosswords and play dominoes with her too. The physical work takes about 1 hour a day to do each day if done fully and correctly. Mom does leg lifts by bending her knee and extending her leg out from the knee up and down 10 times each leg. Then mom extends her leg out straight from the hip and lifts each leg up and down to a count of 10. Mom also lifts her legs 10 times from the hip with knee bent. She does stretching types of exercises on her arms---reaching across the center of her body and stretching up, down... We also work on getting mom to stand alone (without lifting her bottom from the chair) and then standing straight up tall...dad and I tell her to look up to God!
Dad is overwhelmed. I know I mentioned before that having mom back at home is much like bringing home a new baby and it is. The biggest hurdle for him and mom is getting a steady aide....in 11 days (Mondays through Fridays only), we have gone through 9 aides..........this lack of consistency is not good for getting into a routine. I thought we found a "keeper" aide on Friday, but she didn't show today.... It can take a very long time to find a steady aide and get the right match.
We all plan to attend the 5 p.m. Mass at Our Lady of Grace Church in West Babylon on Christmas Eve---if anyone wants to come, you are welcome. It will be the first time that mom is back in church since June 2010.
"Your love, O Lord, reaches to the heavens, your faithfulness to the skies." Psalm 36:5
Mom continues to progress at home but the progress is slow...much slower than when she was at the facility receiving therapies on a daily basis. She did walk a few steps both Friday and today with the physical therapist. She does better with the therapists than she does with us. She tends to "blow us off" a bit or tell us she can't do something but not so with the therapists. Speech hasn't started yet (the therapist is sick), OT and PT are twice a week. It is largely our responsibility, as her family, to rehabilitate her ourselves now that she is home. We need to get into a real schedule. Right now, it's whoever is around is around---we need to get more structure.
Mom's friends continue to faithfully visit and the choir from church came to sing Christmas carols to mom in the back yard on Sunday afternoon. This touched mom greatly. She misses choir.
Generally, mom sleeps through the night. She has days, here and there, when she cries alot though. She feels badly about not being able to do the things she used to do pre-head injury. For the most part though, she is content. We continue to work on her physical exercises as well as the mental ones. We still do Life Skill work sheets and puzzles and crosswords and play dominoes with her too. The physical work takes about 1 hour a day to do each day if done fully and correctly. Mom does leg lifts by bending her knee and extending her leg out from the knee up and down 10 times each leg. Then mom extends her leg out straight from the hip and lifts each leg up and down to a count of 10. Mom also lifts her legs 10 times from the hip with knee bent. She does stretching types of exercises on her arms---reaching across the center of her body and stretching up, down... We also work on getting mom to stand alone (without lifting her bottom from the chair) and then standing straight up tall...dad and I tell her to look up to God!
Dad is overwhelmed. I know I mentioned before that having mom back at home is much like bringing home a new baby and it is. The biggest hurdle for him and mom is getting a steady aide....in 11 days (Mondays through Fridays only), we have gone through 9 aides..........this lack of consistency is not good for getting into a routine. I thought we found a "keeper" aide on Friday, but she didn't show today.... It can take a very long time to find a steady aide and get the right match.
We all plan to attend the 5 p.m. Mass at Our Lady of Grace Church in West Babylon on Christmas Eve---if anyone wants to come, you are welcome. It will be the first time that mom is back in church since June 2010.
"Your love, O Lord, reaches to the heavens, your faithfulness to the skies." Psalm 36:5
Wednesday, December 14, 2011
Mom Update, December 14, 2011, Wednesday
It's been a few days since the last update so I thought I'd write you all again this morning. We'll start with the fun stuff first! On Sunday, we all took mom to her favorite neighborhood restaurant, Cafe Gio!!! Our dear friend, who works there, was soooooo thrilled to see mom again and mom was just as thrilled to see him too. Mom made a toast saying, "I am so happy to be here at Gio's with everybody again!" Mom's meal was "on the house."
We had a great time together (but missed Ava, who is at college, and Lenny, who was studying/writing papers for college, and John, who was sick).
Mom also saw her doctor from the neighborhood too (her regular G.P.) on Monday. He was amazed to see her and to find her in such good shape, all things considered!! He was shocked. She was thrilled to see him!! However, she alternately confused his name with the name of the pediatrician that we kids went to when we were little. She knew the name of both doctors, but kept confusing her doctor's name with ours on and off. He gave her a clean bill of health and wants to see her in a month.
Back at the "ranch," we are still getting into a "home" routine. We aren't there yet though...still working on it. The biggest thing to remember, now that mom is home, is that we can't "let up" on being there with her and working with her. This is for a variety of reasons. Number one: dad needs breaks. He is faithfully there, by her side, every day, every hour of every day....cooking, doing the chores... (dad is a great cook!! He made barley soup the other day!!! yum!!). But dad has to do a lot of lifting now that mom is home because she is a "2 person assist" which means that mom needs 2 people to lift her or to help her get to a standing position or to transfer from one seat to another. Because she is a "2 person assist," someone from our family needs to be present with the aide who comes at all times. Hopefully, this is only "for now" and mom will regain her strength and ability again soon. But we have to persevere with forcing her to move, stand, walk... Anthony does this a lot with mom, doing the exercises that Barry showed us.
I was with mom the other day, Monday, for the afternoon. I let dad go gallivant for 3 hours. During that time, mom needed to use the toilet, so it took us both 1 hour and 15 minutes, but she got there and the mission was accomplished! Not without complaints from mom though. The whole time I was trying to help her, she doubted my ability to do so. She also doubted her own ability as well. A lot of her recovery, at this point, involves "mind over matter" to a great extent. Mom needs to believe that she CAN do things like stand and walk, in order to do them. I tried many approaches during that hour and 15 minutes to get mom to stand and transfer from one place to another...some times it was gentle coaxing, other times it was a passionate pep talk--like a football coach would give... Mom didn't respond well to my prompting and prodding at all for the most part, not until we were done...then she was glad and confident and thankful. During our attempts, she said, "Oh why did dad leave me with YOU?!!!" in an angry, crying fit of frustration, "You are so mean!!!" Wow, that hurt, but she soon realized that I wasn't being mean, just persistent (my forte!! HAHAHA!!).
This is "crunch" time at school and also in view of the upcoming holidays (I haven't even shopped yet at all!!! Yikes!) but we all are getting into the groove of mom being at home. Claudia and I are devising many more "visual aides/charts" for dad, mom and the aides. There is a daily log of intake and output (haha!) and one for making mom's breakfast. There is also a chart in the bathroom that goes through the steps of how to help mom grab the bar on the wall, pull to stand etc. We need to make a 'morning routine' chart as well as an afternoon and evening chart as well so mom isn't spending all her time sitting around looking at TV.
Claudia worked for hours doing Life Skill activity sheets on Sunday. Mom did great!!! They are all about how to deduct information by reading, how to use a calendar to plot and remember events, how to write a check...
Mom had OT this week finally. Dad said the OT left activities for mom to complete. The OT will only come 2 times per week....for only 4 weeks....then outpatient OT. I met the Speech Therapist on Friday and the person is GREAT!! and even has experience with people with head injuries!!!!! The PT and Speech people should start this week too. We need a chart/schedule for that too.
Operation Basement and Back Room are under way too! Dad and I are slowly turning the back TV room into an office for him replacing the "Dining Room Table Office" he has now....not good, we often can't find mom having a meal among all the "piles" of papers...!!!! "Houston we have a problem. We seem to have lost mom. Visibility may be an issue here!!!" This is a hard task to do because it involves getting rid of things... but dad is a trooper. Dad and I are also cleaning out the basement as well. We are 1/8 of the way through this project too. We need to clean the basement to make room for all the things from upstairs that he isn't ready to part with yet. Dad keeps saying that mom will begin to ask for things so he wants them there for her. He said that, to some degree, she does this already. We came across the top to mom and dad's wedding cake.....dad initially said, "When I die you kids can take this, not now" but he later relinquished it to my safe keeping.
Now for the "PCA/Aide" challenge.... Our weekend aide is FABULOUS!!!! However, in 7 days, we have been through 4 (FOUR!!!) aides.....they drop like flies. Pray for a good one from Monday through Friday, please. Also, mom has a new red mark on her tail bone area. PRAY this isn't a bed sore!! please!!! Last weekend (her first weekend home), she and dad tried to get to the bathroom and mom slid to the floor. Maybe this is why the red mark is there, hopefully so.
Thanks for all the prayers so far! Please continue to pray for us all. xxxooo
"Patient endurance is what you need now, so that you will continue to do God's will. Then you will receive all that he has promised." Hebrews 10:36
We had a great time together (but missed Ava, who is at college, and Lenny, who was studying/writing papers for college, and John, who was sick).
Mom also saw her doctor from the neighborhood too (her regular G.P.) on Monday. He was amazed to see her and to find her in such good shape, all things considered!! He was shocked. She was thrilled to see him!! However, she alternately confused his name with the name of the pediatrician that we kids went to when we were little. She knew the name of both doctors, but kept confusing her doctor's name with ours on and off. He gave her a clean bill of health and wants to see her in a month.
Back at the "ranch," we are still getting into a "home" routine. We aren't there yet though...still working on it. The biggest thing to remember, now that mom is home, is that we can't "let up" on being there with her and working with her. This is for a variety of reasons. Number one: dad needs breaks. He is faithfully there, by her side, every day, every hour of every day....cooking, doing the chores... (dad is a great cook!! He made barley soup the other day!!! yum!!). But dad has to do a lot of lifting now that mom is home because she is a "2 person assist" which means that mom needs 2 people to lift her or to help her get to a standing position or to transfer from one seat to another. Because she is a "2 person assist," someone from our family needs to be present with the aide who comes at all times. Hopefully, this is only "for now" and mom will regain her strength and ability again soon. But we have to persevere with forcing her to move, stand, walk... Anthony does this a lot with mom, doing the exercises that Barry showed us.
I was with mom the other day, Monday, for the afternoon. I let dad go gallivant for 3 hours. During that time, mom needed to use the toilet, so it took us both 1 hour and 15 minutes, but she got there and the mission was accomplished! Not without complaints from mom though. The whole time I was trying to help her, she doubted my ability to do so. She also doubted her own ability as well. A lot of her recovery, at this point, involves "mind over matter" to a great extent. Mom needs to believe that she CAN do things like stand and walk, in order to do them. I tried many approaches during that hour and 15 minutes to get mom to stand and transfer from one place to another...some times it was gentle coaxing, other times it was a passionate pep talk--like a football coach would give... Mom didn't respond well to my prompting and prodding at all for the most part, not until we were done...then she was glad and confident and thankful. During our attempts, she said, "Oh why did dad leave me with YOU?!!!" in an angry, crying fit of frustration, "You are so mean!!!" Wow, that hurt, but she soon realized that I wasn't being mean, just persistent (my forte!! HAHAHA!!).
This is "crunch" time at school and also in view of the upcoming holidays (I haven't even shopped yet at all!!! Yikes!) but we all are getting into the groove of mom being at home. Claudia and I are devising many more "visual aides/charts" for dad, mom and the aides. There is a daily log of intake and output (haha!) and one for making mom's breakfast. There is also a chart in the bathroom that goes through the steps of how to help mom grab the bar on the wall, pull to stand etc. We need to make a 'morning routine' chart as well as an afternoon and evening chart as well so mom isn't spending all her time sitting around looking at TV.
Claudia worked for hours doing Life Skill activity sheets on Sunday. Mom did great!!! They are all about how to deduct information by reading, how to use a calendar to plot and remember events, how to write a check...
Mom had OT this week finally. Dad said the OT left activities for mom to complete. The OT will only come 2 times per week....for only 4 weeks....then outpatient OT. I met the Speech Therapist on Friday and the person is GREAT!! and even has experience with people with head injuries!!!!! The PT and Speech people should start this week too. We need a chart/schedule for that too.
Operation Basement and Back Room are under way too! Dad and I are slowly turning the back TV room into an office for him replacing the "Dining Room Table Office" he has now....not good, we often can't find mom having a meal among all the "piles" of papers...!!!! "Houston we have a problem. We seem to have lost mom. Visibility may be an issue here!!!" This is a hard task to do because it involves getting rid of things... but dad is a trooper. Dad and I are also cleaning out the basement as well. We are 1/8 of the way through this project too. We need to clean the basement to make room for all the things from upstairs that he isn't ready to part with yet. Dad keeps saying that mom will begin to ask for things so he wants them there for her. He said that, to some degree, she does this already. We came across the top to mom and dad's wedding cake.....dad initially said, "When I die you kids can take this, not now" but he later relinquished it to my safe keeping.
Now for the "PCA/Aide" challenge.... Our weekend aide is FABULOUS!!!! However, in 7 days, we have been through 4 (FOUR!!!) aides.....they drop like flies. Pray for a good one from Monday through Friday, please. Also, mom has a new red mark on her tail bone area. PRAY this isn't a bed sore!! please!!! Last weekend (her first weekend home), she and dad tried to get to the bathroom and mom slid to the floor. Maybe this is why the red mark is there, hopefully so.
Thanks for all the prayers so far! Please continue to pray for us all. xxxooo
"Patient endurance is what you need now, so that you will continue to do God's will. Then you will receive all that he has promised." Hebrews 10:36
Friday, December 9, 2011
Mom Update, December 9, 2011, Friday
Hello everyone!! First, let me say thank you to everyone who continues to pray for us all. Second, I am sorry that we haven't written sooner then now--I have heard from many of you about how much you miss the daily e-mail. We are touched deeply by this. Soooo.....As promised, here is one of our periodic updates on mom.
Mom arrived home exactly a week ago! She was full of joy. That's the only way I can describe her reaction to being home. I expected alot of tears from her...but there were few, if any. She was mostly joyful. Remember, to her, she wasn't gone 18 months...her head injury prevents her from remembering the worst of what she's been through, including how long she was away from home.
OK...so what is it like to have mom back home? It's wonderful. Magnificent. Awesome. But...it is also alot of work. Much more work than you could know. Mom is now in a wheelchair (hopefully, not forever) for now. Her skill abilities are inconsistent too. This is due to her head injury. For example, some days, she can just stand up while holding onto the bar on the wall in the bathroom with one hand!! Ta da!! While other days, she can't stand at all and so, on these types of days, it takes 3 of us to lift her to a standing position in order to transfer from the wheelchair to another seat---alternate chair, bed, toilet... It's hard to gather 2 or 3 of us when mom needs us to be there sometimes.
The cause of her skill inconsistency is twofold. Sometimes the two reasons are combined at the same time, and sometimes they are separate reasons that happen separately. Sometimes, mom is unable to stand or perform a task (though usually it is in relation to standing) because she is unsure and frightened that she will fall. At these times, the reason for the fear is a lack of trust in us and our ability to help her. The solution to this problem---she'll get used to us helping her and gain confidence with time.
Sometimes, mom is unable to stand or perform a task because her brain injury prevents her from remembering what to do---even though she has completed the task (standing let's say) a thousand times before in exactly the same way we are asking her to do it now. This is because the brain injury prevents her from both remembering what to do, and also from generalizing the skill to a new situation. It works like this: Change the location or the variety of the tools used (like the type of bar to hold onto...or even the color of the bar...) and the task becomes a whole new, never experienced before type of situation. In the field of special education, we see this type of occurrence with children who have mental retardation (NO!! I'm not saying mom has mental retardation!! She doesn't!! It's just the clearest way to understand the situation). OK. You have a child with MR and you teach the child to count to 3 by counting small, red, plastic bears, let's say. You work for weeks using the exact same 3 red bears, and finally, the child knows how to count to 3!! You just give the child the bears and viola!! He counts to 3. But now, one day, you give the child 3 blue bears or maybe 3 red balls and you ask the child to count --- but suddenly, the skill is gone. The child can't count anymore--even though he's counted to 3 using those red bears for weeks or months!! Here's why the skill disappeared. For a typically developing child who's brain is intact, counting involves maybe one center of the brain. But, for the child with the compromised brain (MR), the act of counting to 3 involved a broader spectrum of the brain---many parts of the brain...not just one area. So, when you change one of the variables in the act of counting, like the color of the objects being counted, the skill is perceived as something unknown. There's no familiarity attached to it that triggers the memory of what to do. OK...anyway, that's what happens to mom sometimes. The solution to this problem---mom will make new associative connections in her home surroundings and eventually, the "things of home" like the color and type of bar that is in her bathroom vs. the one in the facility, will become familiar and replace the memory of what tools she used in the facility. She may also learn how to generalize skills again as her brain becomes whole and fully functioning again. (long paragraph...sorry Nance! didn't know where to break it up!!hahaha!)
The last reason that mom can't always perform skills she had in the facility involves her own confidence level and emotions. She sometimes says, "Oh, I can't do that!" and gets angry. Other times, she says, "I AM DOING THAT!!" but she isn't (confusion in her brain).
Sometimes the reason that she can't perform is a combination of any or all of these factors!! BUT....the main point is that WE WILL HELP HER GET THROUGH THIS...................!
OK...the aide saga. We get 2 aides per week---one on the weekend (Saturday and Sunday) and one during the week (Monday through Friday). The weekend aide is really nice. It turns out that this aide has worked in a local convent with some of the nuns who Claudia and I work with at the college we teach in now! Small world. I like this aide. I think mom likes this aide too.
The weekday aide changed 3 times in less than 48 hours. We started with one aide on Monday morning, then had another aide Monday night, and then another aide Tuesday morning. The first aide appeared to have transportation issues. The second aide was a substitute. The third aide appears to be consistent all week now.
It took the aides some time to acclimate to mom and dad's house and to mom. Of course, these poor people had to also deal with the bombardment of all of us there as well--telling them what to do and how to do it. We have come so far, we don't want to go backwards now. Claudia, ever the behaviorist on the go (God bless her), already made several laminated charts for mom, dad and the aide. She and I came up with the idea to make a chart for breakfast---what to make and how to make it (following what we did in the facility). It's a high fiber breakfast and one that is full of protein as well. Claudia also made a chart for the bathroom wall---I thought that a visual aid would help mom, dad and the aide---it involves pictures of a bar with 2 hands holding onto it, then a person's feet (where and how to place them on the floor for optimal standing), then a person standing.... We also made a chart that records what mom ate, bathroom events, and her 2 medications (not serious ones). We put skid tape on the floor in front of the shower, the toilet and mom's bedside so she doesn't slide when she tries to stand.
People ask what it's like to have mom home. To me, it is very, very similar to having a new baby in the house. There are suddenly items there that weren't before. There is the need for a schedule--when to eat (mom hadn't eaten breakfast until 11:00 a.m. on several days!! haha! neither did we!!), what to eat, how to prepare it, how much to eat... Schedules for getting ready for bed or a bath or the toilet.... I'm not saying mom is like a baby--she's not!! Far from it!! But...there are many parallels between the two. Who can be there to do what and how often and when.... I have confidence though, that it will all get worked out, and rather quickly too.
Services for mom....like OT, PT, Speech and visits from a nurse. Right now, mom has seen 2 different nurses since Saturday. One on Saturday and one on Wednesday. A nurse comes once or twice a week to check vital signs etc. Nothing major. The nurse checks on the overall health condition. The nurse told us that the supplies we need for mom like the bandages for the stoma on her neck (which Claudia initially bought and it cost $10 for 5 bandages!!!YIKES!!) and the Depends she wears in case of bathroom accidents (she doesn't have any during the day unless we can't help her fast enough to get to the toilet...or at night sometimes) are all covered by insurance. YAHOO!!
The OT came and said mom qualifies for OT. The OT did an evaluation this week on Tuesday. Then, the OT said mom will get OT 3 times a week for an hour for 2 weeks, then 2 times a week for 2 weeks, then 1 time a week for 2 weeks. Then I think there will be another re-evaluation.
The PT came to evaluate mom and told dad that PT will be 2 times a week for 4 weeks and, if no improvement, no more PT. We haven't seen the Speech Therapist yet.
I think in some ways, for some of us in the family (dad, for one), we are now feeling the aftershock of what we've been through finally. It's like, "But mom's home and it's over now, so why am I feeling overwhelmed and crying so much?" It's like we have reached a place, for now, where maybe it is finally safe enough to cry and let it out. It's like, now the reality of what we almost lost (not that we ever forgot it for a minute in the facility) is smacking us square in the face... and it's scary. When mom was in the facility, it stunk, for sure. It was awful but we buckled down and put our noses to the grindstone and did what we needed to do in order to help her---and there wasn't much time to experience all that we felt underneath the surface. Now...there is time to feel. Now...there is time to exhale. Now...there is time to heal....but for now. Life goes on, doesn't it? There will, unfortunately, be more downs with the ups.
Keep dad in prayer please. He is doing so much. So much. I worry about him. He is dealing with alot. Many changes. He isn't as free to "run around" the way he used to either. Dad is a gallivanter!! He likes to do things and go places and run errands. That's dad. He hasn't been to daily Mass all week, I think. That's a part of his life so far. So just pray that God will give dad peace in all dad does and in all the ways that his life has changed. Dad's "girl" (as he lovingly refers to mom) is home. My prayer is that dad can relax into a new routine and enjoy his time with mom in new and renewed ways.
Mom needs prayer too. She is now realizing all that she can't do. She cries about it at times as well, which is healing and good. Pray that mom continues to get better and stronger. Pray that she, too, accepts where she is now and learns to relax in it and enjoy every second of her life...even as it is. Overall, mom is sharp in her thinking....except when she gets tired, which is natural and normal. She can have conversations. She and dad did some "work" yesterday...they completed some Life Skill worksheets that Claudia left for her to do.
BUT!!!!! MOM IS HOME!!! YIPPEEEEEEEE!!!!!! Her friends come to see her, Maureen, Flo, and Florence. Anthony and Sammy come to snuggle with her at night. So does Claudia. John comes to see her.... Anthony and Claudia are there faithfully each day to help in the bathroom and transfers to the wheelchair or bed. Mom is a 2 person assist which means that, even the aide is not allowed to transfer her from one place to another alone. Mom was pretty much a 1 person assist in the facility--but she'll get back there and even better (alone!!!) I am sure some day soon. Con and the kids visit mom throughout the day on the weekend and at night. Jo Ann came to be with mom on Monday while dad and I went to postpone the Medicaid hearing we are working on (the agency we used to file the paperwork appears to have filed too late and now we may owe money-----we don't really owe it though so we have to prove that at the hearing). Anthony continues to work on mom's legs and do PT with her. He could get a job doing this---he's great at it! He does many of the exercises that Barry showed him how to do. Terry is with mom each night too. Claudia and I are busy setting up the house, going through the boxes from the facility, coordinating services, appointments, charts, schedules...figuring out a cognitive therapy routine and organizing her tools and supplies to that end... But... Mom is home....and it is just magnificently glorious!!!!!!!
Will continue to keep you all posted. Love and prayers to and for you all!!! xxxooo
"But if we live in the light in the same way that God is in the light, we have a relationship with each other." 1 John 1:7
Mom arrived home exactly a week ago! She was full of joy. That's the only way I can describe her reaction to being home. I expected alot of tears from her...but there were few, if any. She was mostly joyful. Remember, to her, she wasn't gone 18 months...her head injury prevents her from remembering the worst of what she's been through, including how long she was away from home.
OK...so what is it like to have mom back home? It's wonderful. Magnificent. Awesome. But...it is also alot of work. Much more work than you could know. Mom is now in a wheelchair (hopefully, not forever) for now. Her skill abilities are inconsistent too. This is due to her head injury. For example, some days, she can just stand up while holding onto the bar on the wall in the bathroom with one hand!! Ta da!! While other days, she can't stand at all and so, on these types of days, it takes 3 of us to lift her to a standing position in order to transfer from the wheelchair to another seat---alternate chair, bed, toilet... It's hard to gather 2 or 3 of us when mom needs us to be there sometimes.
The cause of her skill inconsistency is twofold. Sometimes the two reasons are combined at the same time, and sometimes they are separate reasons that happen separately. Sometimes, mom is unable to stand or perform a task (though usually it is in relation to standing) because she is unsure and frightened that she will fall. At these times, the reason for the fear is a lack of trust in us and our ability to help her. The solution to this problem---she'll get used to us helping her and gain confidence with time.
Sometimes, mom is unable to stand or perform a task because her brain injury prevents her from remembering what to do---even though she has completed the task (standing let's say) a thousand times before in exactly the same way we are asking her to do it now. This is because the brain injury prevents her from both remembering what to do, and also from generalizing the skill to a new situation. It works like this: Change the location or the variety of the tools used (like the type of bar to hold onto...or even the color of the bar...) and the task becomes a whole new, never experienced before type of situation. In the field of special education, we see this type of occurrence with children who have mental retardation (NO!! I'm not saying mom has mental retardation!! She doesn't!! It's just the clearest way to understand the situation). OK. You have a child with MR and you teach the child to count to 3 by counting small, red, plastic bears, let's say. You work for weeks using the exact same 3 red bears, and finally, the child knows how to count to 3!! You just give the child the bears and viola!! He counts to 3. But now, one day, you give the child 3 blue bears or maybe 3 red balls and you ask the child to count --- but suddenly, the skill is gone. The child can't count anymore--even though he's counted to 3 using those red bears for weeks or months!! Here's why the skill disappeared. For a typically developing child who's brain is intact, counting involves maybe one center of the brain. But, for the child with the compromised brain (MR), the act of counting to 3 involved a broader spectrum of the brain---many parts of the brain...not just one area. So, when you change one of the variables in the act of counting, like the color of the objects being counted, the skill is perceived as something unknown. There's no familiarity attached to it that triggers the memory of what to do. OK...anyway, that's what happens to mom sometimes. The solution to this problem---mom will make new associative connections in her home surroundings and eventually, the "things of home" like the color and type of bar that is in her bathroom vs. the one in the facility, will become familiar and replace the memory of what tools she used in the facility. She may also learn how to generalize skills again as her brain becomes whole and fully functioning again. (long paragraph...sorry Nance! didn't know where to break it up!!hahaha!)
The last reason that mom can't always perform skills she had in the facility involves her own confidence level and emotions. She sometimes says, "Oh, I can't do that!" and gets angry. Other times, she says, "I AM DOING THAT!!" but she isn't (confusion in her brain).
Sometimes the reason that she can't perform is a combination of any or all of these factors!! BUT....the main point is that WE WILL HELP HER GET THROUGH THIS...................!
OK...the aide saga. We get 2 aides per week---one on the weekend (Saturday and Sunday) and one during the week (Monday through Friday). The weekend aide is really nice. It turns out that this aide has worked in a local convent with some of the nuns who Claudia and I work with at the college we teach in now! Small world. I like this aide. I think mom likes this aide too.
The weekday aide changed 3 times in less than 48 hours. We started with one aide on Monday morning, then had another aide Monday night, and then another aide Tuesday morning. The first aide appeared to have transportation issues. The second aide was a substitute. The third aide appears to be consistent all week now.
It took the aides some time to acclimate to mom and dad's house and to mom. Of course, these poor people had to also deal with the bombardment of all of us there as well--telling them what to do and how to do it. We have come so far, we don't want to go backwards now. Claudia, ever the behaviorist on the go (God bless her), already made several laminated charts for mom, dad and the aide. She and I came up with the idea to make a chart for breakfast---what to make and how to make it (following what we did in the facility). It's a high fiber breakfast and one that is full of protein as well. Claudia also made a chart for the bathroom wall---I thought that a visual aid would help mom, dad and the aide---it involves pictures of a bar with 2 hands holding onto it, then a person's feet (where and how to place them on the floor for optimal standing), then a person standing.... We also made a chart that records what mom ate, bathroom events, and her 2 medications (not serious ones). We put skid tape on the floor in front of the shower, the toilet and mom's bedside so she doesn't slide when she tries to stand.
People ask what it's like to have mom home. To me, it is very, very similar to having a new baby in the house. There are suddenly items there that weren't before. There is the need for a schedule--when to eat (mom hadn't eaten breakfast until 11:00 a.m. on several days!! haha! neither did we!!), what to eat, how to prepare it, how much to eat... Schedules for getting ready for bed or a bath or the toilet.... I'm not saying mom is like a baby--she's not!! Far from it!! But...there are many parallels between the two. Who can be there to do what and how often and when.... I have confidence though, that it will all get worked out, and rather quickly too.
Services for mom....like OT, PT, Speech and visits from a nurse. Right now, mom has seen 2 different nurses since Saturday. One on Saturday and one on Wednesday. A nurse comes once or twice a week to check vital signs etc. Nothing major. The nurse checks on the overall health condition. The nurse told us that the supplies we need for mom like the bandages for the stoma on her neck (which Claudia initially bought and it cost $10 for 5 bandages!!!YIKES!!) and the Depends she wears in case of bathroom accidents (she doesn't have any during the day unless we can't help her fast enough to get to the toilet...or at night sometimes) are all covered by insurance. YAHOO!!
The OT came and said mom qualifies for OT. The OT did an evaluation this week on Tuesday. Then, the OT said mom will get OT 3 times a week for an hour for 2 weeks, then 2 times a week for 2 weeks, then 1 time a week for 2 weeks. Then I think there will be another re-evaluation.
The PT came to evaluate mom and told dad that PT will be 2 times a week for 4 weeks and, if no improvement, no more PT. We haven't seen the Speech Therapist yet.
I think in some ways, for some of us in the family (dad, for one), we are now feeling the aftershock of what we've been through finally. It's like, "But mom's home and it's over now, so why am I feeling overwhelmed and crying so much?" It's like we have reached a place, for now, where maybe it is finally safe enough to cry and let it out. It's like, now the reality of what we almost lost (not that we ever forgot it for a minute in the facility) is smacking us square in the face... and it's scary. When mom was in the facility, it stunk, for sure. It was awful but we buckled down and put our noses to the grindstone and did what we needed to do in order to help her---and there wasn't much time to experience all that we felt underneath the surface. Now...there is time to feel. Now...there is time to exhale. Now...there is time to heal....but for now. Life goes on, doesn't it? There will, unfortunately, be more downs with the ups.
Keep dad in prayer please. He is doing so much. So much. I worry about him. He is dealing with alot. Many changes. He isn't as free to "run around" the way he used to either. Dad is a gallivanter!! He likes to do things and go places and run errands. That's dad. He hasn't been to daily Mass all week, I think. That's a part of his life so far. So just pray that God will give dad peace in all dad does and in all the ways that his life has changed. Dad's "girl" (as he lovingly refers to mom) is home. My prayer is that dad can relax into a new routine and enjoy his time with mom in new and renewed ways.
Mom needs prayer too. She is now realizing all that she can't do. She cries about it at times as well, which is healing and good. Pray that mom continues to get better and stronger. Pray that she, too, accepts where she is now and learns to relax in it and enjoy every second of her life...even as it is. Overall, mom is sharp in her thinking....except when she gets tired, which is natural and normal. She can have conversations. She and dad did some "work" yesterday...they completed some Life Skill worksheets that Claudia left for her to do.
BUT!!!!! MOM IS HOME!!! YIPPEEEEEEEE!!!!!! Her friends come to see her, Maureen, Flo, and Florence. Anthony and Sammy come to snuggle with her at night. So does Claudia. John comes to see her.... Anthony and Claudia are there faithfully each day to help in the bathroom and transfers to the wheelchair or bed. Mom is a 2 person assist which means that, even the aide is not allowed to transfer her from one place to another alone. Mom was pretty much a 1 person assist in the facility--but she'll get back there and even better (alone!!!) I am sure some day soon. Con and the kids visit mom throughout the day on the weekend and at night. Jo Ann came to be with mom on Monday while dad and I went to postpone the Medicaid hearing we are working on (the agency we used to file the paperwork appears to have filed too late and now we may owe money-----we don't really owe it though so we have to prove that at the hearing). Anthony continues to work on mom's legs and do PT with her. He could get a job doing this---he's great at it! He does many of the exercises that Barry showed him how to do. Terry is with mom each night too. Claudia and I are busy setting up the house, going through the boxes from the facility, coordinating services, appointments, charts, schedules...figuring out a cognitive therapy routine and organizing her tools and supplies to that end... But... Mom is home....and it is just magnificently glorious!!!!!!!
Will continue to keep you all posted. Love and prayers to and for you all!!! xxxooo
"But if we live in the light in the same way that God is in the light, we have a relationship with each other." 1 John 1:7
Saturday, December 3, 2011
Mom Update, December 3, 2011, Saturday, The Adventures of the First Day at Home
On the way to mom and dad’s this morning, I called dad to see how mom’s night went. He said they both fell asleep at about 9 p.m. and, when he woke briefly at 2 a.m., mom opened her eyes, looked around and went back to sleep. It was a good night.
Mom sat at her own dining room table for breakfast this morning (it wasn’t until 11 a.m., but hey, she’s home!). She sat at the table and kept saying, “Oh, there’s no place like home…” over and over. Claudia and I arrived with the visiting aide (called a PCA personal care aide) who came promptly at 8 a.m. and seems very nice. A nurse from the same agency came too to evaluate mom. Mom did well. All her services are in place regarding the aide. A visiting nurse came later in the day to evaluate her too. Mom did well and we were told that she would have an OT, PT, and Speech evaluation this week sometime (we were told that each person would call to tell us when they’d be coming to see mom the morning they were coming—spur of the moment).
We have phone calls to make to various places like the hospital bed company (the bed doesn’t lock), the Medicaid SILO program for additional information on more types of support for mom, JEEP for help in a disaster like a hurricane, blizzard…
Claudia came up with the idea that we will keep a black, marble notebook for mom so that we can record what she eats, drinks, and any other things that are important to mom's health. We also made charts for dad and the aide to follow---meal charts, phone numbers... Mom didn't remember how to use the cordless phone at home, so Claudia is going to make a chart of that as well.
The PCAs just do care for mom. They don't dispense medication or run errands or do anything for dad--just for mom. The PCA can prepare meals for mom, cook for mom, clean (to a degree---keeping bathroom and kitchen sanitary) for mom, dress, groom, toilet mom etc. Mom is a "2 person assist" so there always needs to be another family member present to help move mom when the aide is there.
Anthony, Con, and Sammy came to see mom early before Sammy had a track meet this morning. It was great to have mom back home!!!
Mom was so much more “with it,” alert, and aware!!! She was louder when she talked. She was conversational. We used to be able to talk and say things in front of her without her knowing—no more!!! She hears, knows and responds to everything we say now!!!! She also makes comments about what is said too!! Claudia and I were joking with each other and I made a face at Claudia behind her back and mom said playfully,” She made a face at you!!”
We were sitting at the dining room table when mom looked down and suddenly said, “Hey wait a minute here…Who made a hole in my plastic table cloth?!!!” She then looked around the room and told me, “OK, let’s get everything in order here now!! Straighten up that table over there—get rid of all dad’s piles.”
We also plan to write or call the company who manufactures the toilet bowl in mom and dad’s house. It’s one of those supersonic ones that can flush a small animal or child—well they really do work! Yesterday, in all the confusion over getting mom to the bathroom for the first time, somehow her new pair of eyeglasses fell into the toilet bowl—unbeknownst to anyone in the room. The person manning the bowl thought something was in there that looked like it didn’t belong—but too late, the toilet was flushed!! Mom’s glasses were gone!!! Swoosh!!! Those bowls really do what they say they do!!! Hahahaha!!! (We ordered her a new pair and she has a backup pair thank God!). On the good side, there’s a rat in some random sewer running around with a pair of eyeglasses, now able to see!!!
Mom talked on the phone to Uncle Ray, Aunt Lucy, Angelo, Madeline, Jo Ann, Maureen, Carmine, and the grandkids. And speaking of talking, we now do a new therapy at home. It’s called “Doorbell speech therapy.” The doorbell at mom and dad’s rings whenever someone laughs or talks loudly. Don’t ask. So mom and I practiced yelling loudly to make it ring!! She has to raise her voice to make it ring!!! We laughed and tried over and over.
I took off her bib after eating and placed it on the kitchen counter and mom said, “Oh no Kathy, the bib has to be put away – folded and in the drawer. And that empty glass and the other upsidedown dish on the counter has to be put away too. Hey, look, I’m just telling you what has to be done now.”
Claudia and I brought her to the bathroom and I had to stand in the shower area in order to assist her and mom said, “Hey watch out—you’re dirtying my floor!”
Mom and Dad were sitting at the dining room table when mom said to dad, “Jean, what chicken broth did you buy?” Dad’s reply, “It’s the paperwork for the bed, hon.” Dad doesn’t hear too well!!! We are buying mom an old school marm’s bell to ring whenever she needs dad when the aide isn’t there. Between mom’s low volume voice, and dad’s hearing loss, communication between them should be interesting!!! Hahahaha!!!
When she was on the phone, she began talking about putting up the tree and decorating---she said, “Oh but you know, no one will do it as good as I” and laughed.
We told her we have to continue to work with her now that she is home and she asked, “Why, what part of my cognition isn’t working?"
We laughed and joked all day!!
Anthony Michael came to visit mom this afternoon. He and mom and I had lunch together. Anthony Michael prepared an apple for mom!! We 3 reminisced about when mom used to prepare an apple for him and how now, here he is cutting up an apple for her.
Samantha came to be with mom this afternoon as well. She brought her homework and she and Anthony sat at the dining room table with mom to keep her company. The kids would stop working to go to mom and squeeze her tightly and whisper, “I love you.”
Mom did great but became sleepy around 3:15 p.m. She napped a bit at the dining room table. When she woke, we 3 helped her to the living room reclining chair where she sat and relaxed and visited with Maureen and Dad. Mom and Dad’s friend, Maureen, came to visit this afternoon too. Dad had left to shop this afternoon and, the more tired mom became, the more she began to cry for dad.
By the time the PCA came back at 4 this afternoon, mom was ready to just have dinner and get ready for bed. Mom became really frustrated around 4:30 p.m. and cried saying that she can't do anything for herself. Dad gave her a pep talk and then they sat and watched TV in the living room for a while. I left to go home around that time.
All in all, it was a wonderful day.
“…joyful and glad in heart for the good things the LORD had done…” 2 Chronicles 7:10
Mom sat at her own dining room table for breakfast this morning (it wasn’t until 11 a.m., but hey, she’s home!). She sat at the table and kept saying, “Oh, there’s no place like home…” over and over. Claudia and I arrived with the visiting aide (called a PCA personal care aide) who came promptly at 8 a.m. and seems very nice. A nurse from the same agency came too to evaluate mom. Mom did well. All her services are in place regarding the aide. A visiting nurse came later in the day to evaluate her too. Mom did well and we were told that she would have an OT, PT, and Speech evaluation this week sometime (we were told that each person would call to tell us when they’d be coming to see mom the morning they were coming—spur of the moment).
We have phone calls to make to various places like the hospital bed company (the bed doesn’t lock), the Medicaid SILO program for additional information on more types of support for mom, JEEP for help in a disaster like a hurricane, blizzard…
Claudia came up with the idea that we will keep a black, marble notebook for mom so that we can record what she eats, drinks, and any other things that are important to mom's health. We also made charts for dad and the aide to follow---meal charts, phone numbers... Mom didn't remember how to use the cordless phone at home, so Claudia is going to make a chart of that as well.
The PCAs just do care for mom. They don't dispense medication or run errands or do anything for dad--just for mom. The PCA can prepare meals for mom, cook for mom, clean (to a degree---keeping bathroom and kitchen sanitary) for mom, dress, groom, toilet mom etc. Mom is a "2 person assist" so there always needs to be another family member present to help move mom when the aide is there.
Anthony, Con, and Sammy came to see mom early before Sammy had a track meet this morning. It was great to have mom back home!!!
Mom was so much more “with it,” alert, and aware!!! She was louder when she talked. She was conversational. We used to be able to talk and say things in front of her without her knowing—no more!!! She hears, knows and responds to everything we say now!!!! She also makes comments about what is said too!! Claudia and I were joking with each other and I made a face at Claudia behind her back and mom said playfully,” She made a face at you!!”
We were sitting at the dining room table when mom looked down and suddenly said, “Hey wait a minute here…Who made a hole in my plastic table cloth?!!!” She then looked around the room and told me, “OK, let’s get everything in order here now!! Straighten up that table over there—get rid of all dad’s piles.”
We also plan to write or call the company who manufactures the toilet bowl in mom and dad’s house. It’s one of those supersonic ones that can flush a small animal or child—well they really do work! Yesterday, in all the confusion over getting mom to the bathroom for the first time, somehow her new pair of eyeglasses fell into the toilet bowl—unbeknownst to anyone in the room. The person manning the bowl thought something was in there that looked like it didn’t belong—but too late, the toilet was flushed!! Mom’s glasses were gone!!! Swoosh!!! Those bowls really do what they say they do!!! Hahahaha!!! (We ordered her a new pair and she has a backup pair thank God!). On the good side, there’s a rat in some random sewer running around with a pair of eyeglasses, now able to see!!!
Mom talked on the phone to Uncle Ray, Aunt Lucy, Angelo, Madeline, Jo Ann, Maureen, Carmine, and the grandkids. And speaking of talking, we now do a new therapy at home. It’s called “Doorbell speech therapy.” The doorbell at mom and dad’s rings whenever someone laughs or talks loudly. Don’t ask. So mom and I practiced yelling loudly to make it ring!! She has to raise her voice to make it ring!!! We laughed and tried over and over.
I took off her bib after eating and placed it on the kitchen counter and mom said, “Oh no Kathy, the bib has to be put away – folded and in the drawer. And that empty glass and the other upsidedown dish on the counter has to be put away too. Hey, look, I’m just telling you what has to be done now.”
Claudia and I brought her to the bathroom and I had to stand in the shower area in order to assist her and mom said, “Hey watch out—you’re dirtying my floor!”
Mom and Dad were sitting at the dining room table when mom said to dad, “Jean, what chicken broth did you buy?” Dad’s reply, “It’s the paperwork for the bed, hon.” Dad doesn’t hear too well!!! We are buying mom an old school marm’s bell to ring whenever she needs dad when the aide isn’t there. Between mom’s low volume voice, and dad’s hearing loss, communication between them should be interesting!!! Hahahaha!!!
When she was on the phone, she began talking about putting up the tree and decorating---she said, “Oh but you know, no one will do it as good as I” and laughed.
We told her we have to continue to work with her now that she is home and she asked, “Why, what part of my cognition isn’t working?"
We laughed and joked all day!!
Anthony Michael came to visit mom this afternoon. He and mom and I had lunch together. Anthony Michael prepared an apple for mom!! We 3 reminisced about when mom used to prepare an apple for him and how now, here he is cutting up an apple for her.
Samantha came to be with mom this afternoon as well. She brought her homework and she and Anthony sat at the dining room table with mom to keep her company. The kids would stop working to go to mom and squeeze her tightly and whisper, “I love you.”
Mom did great but became sleepy around 3:15 p.m. She napped a bit at the dining room table. When she woke, we 3 helped her to the living room reclining chair where she sat and relaxed and visited with Maureen and Dad. Mom and Dad’s friend, Maureen, came to visit this afternoon too. Dad had left to shop this afternoon and, the more tired mom became, the more she began to cry for dad.
By the time the PCA came back at 4 this afternoon, mom was ready to just have dinner and get ready for bed. Mom became really frustrated around 4:30 p.m. and cried saying that she can't do anything for herself. Dad gave her a pep talk and then they sat and watched TV in the living room for a while. I left to go home around that time.
All in all, it was a wonderful day.
“…joyful and glad in heart for the good things the LORD had done…” 2 Chronicles 7:10
Friday, December 2, 2011
Mom Update, December 2, 2011, Friday, Home at Last
MOM IS HOME AT LAST!!!!!!!!
Claudia and I began the day with mom early this morning. As soon as I woke this morning, I prayed and prayed that for God's Divine Will for mom and prayed against all obstacles in her path. Then, a song I love came to me and I sang it all morning long...singing it at the top of my lungs in my car on the way to mom...singing it the whole way up the elevator and through the halls to her room...dancing and singing it with mom and Claudia all morning:
"Look what the Lord has done
Look what the Lord has done
He healed my body, He touched my mind
He saved me just in time
I'm gonna praise His name
Each day is just the same
Come on and praise Him
Look what the Lord has done
It's a peppy, happy, lively song!! Some of the CNAs knew it too and sang with me on the way to mom's room. Indeed...LOOK WHAT THE LORD HAS DONE!!
Hallelujah!!!! PTL.
I knew one way or the other that today would be a blessed day, whether mom came home today or not. We were determined to make lemonade out of lemons...and we did so every step of the way today.
We didn't get the final word until 11:30 or so. Laura and Billy, our cousins (mom's niece and nephew), came to be with us today!! Mom was sooooo surprised to see them both. She shook with joy when she saw them!! I couldn't help but remember the last time Billy came to be with us and mom----mom was still in the hospital at the time, in summer of 2010, and I had received that call from Claudia to get there fast because mom had taken a turn for the worse....what a looooonnnngggg way she has come.
Mom had a shower and got dressed. Then, Mom, of course, asked me to put her make up on!! Anthony had joined us as well just before the shower. We were down in the lounge when mom's nurse (who we love) came to tell us...."Dotty, guess what? YOU ARE GOING HOME TODAY!!!" The nurse told mom then dropped hands to each side with fingers spread and screamed!!! Then we all screamed too!!! Mom couldn't believe it!! She was so happy!!!
We began to make the rounds in the building next so mom could tell everyone her great news and say good-bye (though the whole building knew already!!). We went to the vent unit first, of course. Mom announced her happy news to each person, smiling broadly and speaking loudly, "I'm going home today!" We all hugged and cried and reminisced with all the CNAs and nurses there. One of the nurses asked mom what would be the first thing she'd do when she got home. Mom replied, "Grab my husband!!!" They all laughed and mom's reply was, "Well I'm not dead!!" The love mom and dad have for each other after 54 years is amazing and awesome indeed. Mom thanked each person individually and commented on how wonderful each one was to her. She kissed and hugged each person and each one cried and asked us to stay in touch.
When we left the vent wing, we visited the Therapists to say good-bye. They all blessed mom, wished her well and asked her to come back to visit them too.
Jo Ann, Angelo, Madeline and Nancy came to be with us too. We all laughed and talked. Angelo and Madeline brought mom mini-American flags, a huge, gorgeous bouquet of flowers, and Jo Ann bought mom a Coach leather key ring (the leather was a piggy!!!) and had a house key put on the ring.... Dad, Terry, Lenny, Jean, Ava, and Aunt Carol all joined us too.
Some of us went upstairs to pack mom's room up...we made many trips using a luggage cart. When the room was finally empty, Lenny, Jean and I did the once over one last time, and then the 3 of us joined hands and prayed in praise and thanks to God. Lenny and Jean prayed so beautifully...each one thanking God for returning our "Nonny" to us and thanking God for the family we have and the strength He gave us to all persevere through it all.
We said good-bye to the building administrator next. The building administrator showed Claudia and I a framed picture that was made of the "thank you" letters I wrote to the vent wing staff and told us that it was going to be hung in that wing as an inspiration to the staff and all the families there forever. What an honor. The administrator thanked us for teaching them all so much about love and dedication and how to take care of someone in mom's condition...and thanked us for challenging them all to stretch to the limits of their professionalism in ways they didn't know were possible. How awesome. What happened to mom touched so many lives.
We made one last round on the new floor mom was on and said our good-byes there...and then...we went downstairs to leave to go home!!!
Our huge group of family, friends and staff paraded through the halls singing to the tune of "New York New York" a song that Angelo made up for mom, "Start spreading the news. Our girl Dotty is leaving today!!!...." We actually sang and everybody clapped as we left...people who worked in the offices on the first floor by the entrance to the building were looking out their windows all around watching mom get in the car and waving too. It was a day made in heaven.
Mom got in the car with the help of Anthony, dad and Lenny... Lenny played a song loudly from the car called, "Coming Home" by a group called "Ditty" and we all laughed and cried. Finally, Mom gave us the thumbs up...and away we went....
Some place during the whole thing, I became numb...it was surreal....I couldn't process what was happening (Claudia said she felt the same way). Mom drove in the car with Anthony, Dad, and Ava. Ava said that mom remembered her street and how to get home once they were near.
They pulled into the driveway and mom couldn't believe it!! She was home. She made it back home!!! Eighteen months later....home at last. We all surrounded her and wheeled her into the house and she squealed, "Oh my God. I'm in my house!!!" she only cried briefly. She remembered the house. We took her on a tour of the house...every room. She loved that she was home. As we rolled her past a cabinet in the dining room, she lifted the table scarf on it and ran her finger along the table to CHECK FOR DUST!!!!!!!!!!!!! She is too much!!!
We all gathered in the living room and talked and laughed some more. Anthony Michael came to see mom and so did Rie and Gina. At one point, in the middle of all the noise and confusion and running around that was going on around mom, mom turned to Madeline and said, "Well, I guess my vacation is over." Vacation?!!!
Jean told us that mom's nurse told him that having mom and our family around reminded them all of the importance of their jobs as health care providers and that the love our family shows to each other is an inspiration to them all and a reminder to love their families in the same way.
It was a challenge with the bathroom, but we'll get the hang of it soon, I'm sure. It took 4 of us to help her. Using the skills she has learned in the facility now in her house is a new task. There is little generalization of skills. She didn't remember how to stand holding the bar dad put on the wall for her, or how to pivot her feet.... It was all new to her. She'll get there again though...we'll see to that.
After we all ate and had fun, Claudia, dad, Lenny, Ava, John and I helped get mom ready for bed. She was exhausted...but oh, so happy. We tucked her into her own bed tonight...snug as a bug. We were all spent (it was only 6:00!!!).
Lenny and I stopped at the facility to pick up his car tonight and it was so weird to be there and know that mom was no longer there....thank God.
Thank you all SO MUCH for your faithfulness in praying for mom and for us throughout this trial..this journey...without all of your support and prayers, we could not have done this. We love you all greatly. Peace and Be Well.
"The LORD has done great things for us, and we are filled with joy." Psalm 126:3
PS...just so you know...soon...I don't know when exactly...we will be cutting back on the daily e-mail/blog entries....we will be writing on maybe a weekly basis...and then maybe once a month or so....but we will keep you all posted.
Claudia and I began the day with mom early this morning. As soon as I woke this morning, I prayed and prayed that for God's Divine Will for mom and prayed against all obstacles in her path. Then, a song I love came to me and I sang it all morning long...singing it at the top of my lungs in my car on the way to mom...singing it the whole way up the elevator and through the halls to her room...dancing and singing it with mom and Claudia all morning:
"Look what the Lord has done
Look what the Lord has done
He healed my body, He touched my mind
He saved me just in time
I'm gonna praise His name
Each day is just the same
Come on and praise Him
Look what the Lord has done
It's a peppy, happy, lively song!! Some of the CNAs knew it too and sang with me on the way to mom's room. Indeed...LOOK WHAT THE LORD HAS DONE!!
Hallelujah!!!! PTL.
I knew one way or the other that today would be a blessed day, whether mom came home today or not. We were determined to make lemonade out of lemons...and we did so every step of the way today.
We didn't get the final word until 11:30 or so. Laura and Billy, our cousins (mom's niece and nephew), came to be with us today!! Mom was sooooo surprised to see them both. She shook with joy when she saw them!! I couldn't help but remember the last time Billy came to be with us and mom----mom was still in the hospital at the time, in summer of 2010, and I had received that call from Claudia to get there fast because mom had taken a turn for the worse....what a looooonnnngggg way she has come.
Mom had a shower and got dressed. Then, Mom, of course, asked me to put her make up on!! Anthony had joined us as well just before the shower. We were down in the lounge when mom's nurse (who we love) came to tell us...."Dotty, guess what? YOU ARE GOING HOME TODAY!!!" The nurse told mom then dropped hands to each side with fingers spread and screamed!!! Then we all screamed too!!! Mom couldn't believe it!! She was so happy!!!
We began to make the rounds in the building next so mom could tell everyone her great news and say good-bye (though the whole building knew already!!). We went to the vent unit first, of course. Mom announced her happy news to each person, smiling broadly and speaking loudly, "I'm going home today!" We all hugged and cried and reminisced with all the CNAs and nurses there. One of the nurses asked mom what would be the first thing she'd do when she got home. Mom replied, "Grab my husband!!!" They all laughed and mom's reply was, "Well I'm not dead!!" The love mom and dad have for each other after 54 years is amazing and awesome indeed. Mom thanked each person individually and commented on how wonderful each one was to her. She kissed and hugged each person and each one cried and asked us to stay in touch.
When we left the vent wing, we visited the Therapists to say good-bye. They all blessed mom, wished her well and asked her to come back to visit them too.
Jo Ann, Angelo, Madeline and Nancy came to be with us too. We all laughed and talked. Angelo and Madeline brought mom mini-American flags, a huge, gorgeous bouquet of flowers, and Jo Ann bought mom a Coach leather key ring (the leather was a piggy!!!) and had a house key put on the ring.... Dad, Terry, Lenny, Jean, Ava, and Aunt Carol all joined us too.
Some of us went upstairs to pack mom's room up...we made many trips using a luggage cart. When the room was finally empty, Lenny, Jean and I did the once over one last time, and then the 3 of us joined hands and prayed in praise and thanks to God. Lenny and Jean prayed so beautifully...each one thanking God for returning our "Nonny" to us and thanking God for the family we have and the strength He gave us to all persevere through it all.
We said good-bye to the building administrator next. The building administrator showed Claudia and I a framed picture that was made of the "thank you" letters I wrote to the vent wing staff and told us that it was going to be hung in that wing as an inspiration to the staff and all the families there forever. What an honor. The administrator thanked us for teaching them all so much about love and dedication and how to take care of someone in mom's condition...and thanked us for challenging them all to stretch to the limits of their professionalism in ways they didn't know were possible. How awesome. What happened to mom touched so many lives.
We made one last round on the new floor mom was on and said our good-byes there...and then...we went downstairs to leave to go home!!!
Our huge group of family, friends and staff paraded through the halls singing to the tune of "New York New York" a song that Angelo made up for mom, "Start spreading the news. Our girl Dotty is leaving today!!!...." We actually sang and everybody clapped as we left...people who worked in the offices on the first floor by the entrance to the building were looking out their windows all around watching mom get in the car and waving too. It was a day made in heaven.
Mom got in the car with the help of Anthony, dad and Lenny... Lenny played a song loudly from the car called, "Coming Home" by a group called "Ditty" and we all laughed and cried. Finally, Mom gave us the thumbs up...and away we went....
Some place during the whole thing, I became numb...it was surreal....I couldn't process what was happening (Claudia said she felt the same way). Mom drove in the car with Anthony, Dad, and Ava. Ava said that mom remembered her street and how to get home once they were near.
They pulled into the driveway and mom couldn't believe it!! She was home. She made it back home!!! Eighteen months later....home at last. We all surrounded her and wheeled her into the house and she squealed, "Oh my God. I'm in my house!!!" she only cried briefly. She remembered the house. We took her on a tour of the house...every room. She loved that she was home. As we rolled her past a cabinet in the dining room, she lifted the table scarf on it and ran her finger along the table to CHECK FOR DUST!!!!!!!!!!!!! She is too much!!!
We all gathered in the living room and talked and laughed some more. Anthony Michael came to see mom and so did Rie and Gina. At one point, in the middle of all the noise and confusion and running around that was going on around mom, mom turned to Madeline and said, "Well, I guess my vacation is over." Vacation?!!!
Jean told us that mom's nurse told him that having mom and our family around reminded them all of the importance of their jobs as health care providers and that the love our family shows to each other is an inspiration to them all and a reminder to love their families in the same way.
It was a challenge with the bathroom, but we'll get the hang of it soon, I'm sure. It took 4 of us to help her. Using the skills she has learned in the facility now in her house is a new task. There is little generalization of skills. She didn't remember how to stand holding the bar dad put on the wall for her, or how to pivot her feet.... It was all new to her. She'll get there again though...we'll see to that.
After we all ate and had fun, Claudia, dad, Lenny, Ava, John and I helped get mom ready for bed. She was exhausted...but oh, so happy. We tucked her into her own bed tonight...snug as a bug. We were all spent (it was only 6:00!!!).
Lenny and I stopped at the facility to pick up his car tonight and it was so weird to be there and know that mom was no longer there....thank God.
Thank you all SO MUCH for your faithfulness in praying for mom and for us throughout this trial..this journey...without all of your support and prayers, we could not have done this. We love you all greatly. Peace and Be Well.
"The LORD has done great things for us, and we are filled with joy." Psalm 126:3
PS...just so you know...soon...I don't know when exactly...we will be cutting back on the daily e-mail/blog entries....we will be writing on maybe a weekly basis...and then maybe once a month or so....but we will keep you all posted.
Mom Update, December 2, 2011, Friday, Early Morning
Hi Everyone!!!
No news on the homecoming yet but we are all going to be with mom anyway. The more the merrier so if you want to come join us in a joint happy visit---all are welcome----hopefully she will also be allowed to leave today as well. If you want directions, email, text, call and we will give them to you. We will all be there all day!! "Don't quit 5 minutes before the miracle happens!!!" GO MOM!!!!!
"...be happy! Yes, leap for joy!" Luke 6:23
No news on the homecoming yet but we are all going to be with mom anyway. The more the merrier so if you want to come join us in a joint happy visit---all are welcome----hopefully she will also be allowed to leave today as well. If you want directions, email, text, call and we will give them to you. We will all be there all day!! "Don't quit 5 minutes before the miracle happens!!!" GO MOM!!!!!
"...be happy! Yes, leap for joy!" Luke 6:23
Mom Update, December 1, 2011, Thursday
Mom’s update December 1, 2011
I started the day with mom. She was happy to see me. Once I started to fix her in her bed she started to cry. I put the TV on and it did distract her for a moment, but not like yesterday. It wasn’t until she was eating breakfast that she was able to focus on the TV and completely stop crying. Mom told Anthony that he should tell me to leave her the list of phone numbers today because yesterday she felt as if she couldn’t get in touch with anyone because she didn’t have the phone numbers. Today I made sure I left them on the tray for her. I had mom choose the outfit she would wear to day and she picked out a peach colored sweatshirt. Dad and Anthony both had to be home today. Dad was waiting for the hospital bed and Anthony had to wait for someone to come for a service to his house.
I spoke to Anthony this evening and he told me that he was outside with mom earlier in the week when the weather was nice and people kept walking by saying, “Hi Dotty.” Mom asked why all these people knew her and Anthony said, “Oh, didn’t we tell you, you were elected the Mayor of this place!” Mom cracked up! He said that when dad takes her home they will put a chair on the roof of the car and she can wave to all the people as she leaves! She was hysterical.
Kathy told me that she and mom had some great phone conversations this week. Mom was very lucid. She stayed on topic and asked and answered questions appropriately. Kathy asked who visited her and she said, “you were here for breakfast, oh no it was Claudia not you.”
I came to see mom in the evening. She was eating dinner. Dad was sitting next to her and they were watching a movie. Dad left and I stayed with mom to put her to bed. After dinner we did a following directions worksheet that I had brought. It had three rows of four ice-cream cones. Some cones were single cones, some double and some triple cones. She had to follow the directions to color the top right or the bottom left. She had to identify the single, double and triple scoop cones.
Mom was put in bed and we watched a little TV and then we said our prayers. Tonight I asked mom to say the prayers and she said the Lord’s Prayer and Hail Mary. She then said, “God help me to be peaceful tonight and help my children to all get home safely, Amen.” Let’s pray that mom gets home soon and safely as well.
As I left mom’s room I passed the nurse who takes such good care of mom. We love her. I asked her if she had a bracelet and she said no. I couldn’t believe that we never gave her one. I read the quote, “Don’t quit 5 mins. B4 the miracle happens” and told her she was to look at it and think about her goal of becoming a neurologist (she goes to Stony Brook to be a doctor and works at the facility at night). We hugged and cried. I got into the elevator and the day nurse was working a double shift and saw me and we hugged and cried for the whole ride down to the first floor. I see her on the mornings I come to see mom. I got out of the elevator and looked to my right, the vent unit and just started crying hysterically. Today marks the 18 month of mom ordeal.
I got in the car and of course there were Christmas carols playing. I have a special attachment to the song, “I’ll Be Home for Christmas.” Ava was a preemie and born at 2 lbs. 14 oz. on Nov. 20th. That whole season I would cry when I heard that song in a store, the car or anywhere. Ava WAS home for Christmas and she fit in her Christmas stocking, my favorite photo of her. Six years later to the day, Jean was hit by a car and broke his femur. He was in the hospital that whole Christmas season. Once again I heard that song and cried. He too made it home for Christmas. This year my tears are tears of joy! I can’t believe mom will be home for Christmas too.
OK here is the scoop. We were told by the Social Worker that mom could go home tomorrow OR Saturday OR next week. We are still HOPING that it will be tomorrow. The doctor came tonight to check her out and complete the last of his paperwork. All of the nurses and CNA's all seem to think it WILL be tomorrow.
HERE is the suggestion…Anyone who wants to come can and should still come. The worst that can happen is that she doesn’t go home tomorrow and you visit instead. I don’t know how soon from them telling us and her actually leaving will be. They could tell us she can go and in a half hour we leave or in hours. We don’t know.
If anyone knows that miracles happen, it’s us…keep praying and we are leaving it in Gods hands. I saw an inspirational saying once that I love
Don’t worry about tomorrow…God is already there!
Peace and Be Well,
~Claud
I started the day with mom. She was happy to see me. Once I started to fix her in her bed she started to cry. I put the TV on and it did distract her for a moment, but not like yesterday. It wasn’t until she was eating breakfast that she was able to focus on the TV and completely stop crying. Mom told Anthony that he should tell me to leave her the list of phone numbers today because yesterday she felt as if she couldn’t get in touch with anyone because she didn’t have the phone numbers. Today I made sure I left them on the tray for her. I had mom choose the outfit she would wear to day and she picked out a peach colored sweatshirt. Dad and Anthony both had to be home today. Dad was waiting for the hospital bed and Anthony had to wait for someone to come for a service to his house.
I spoke to Anthony this evening and he told me that he was outside with mom earlier in the week when the weather was nice and people kept walking by saying, “Hi Dotty.” Mom asked why all these people knew her and Anthony said, “Oh, didn’t we tell you, you were elected the Mayor of this place!” Mom cracked up! He said that when dad takes her home they will put a chair on the roof of the car and she can wave to all the people as she leaves! She was hysterical.
Kathy told me that she and mom had some great phone conversations this week. Mom was very lucid. She stayed on topic and asked and answered questions appropriately. Kathy asked who visited her and she said, “you were here for breakfast, oh no it was Claudia not you.”
I came to see mom in the evening. She was eating dinner. Dad was sitting next to her and they were watching a movie. Dad left and I stayed with mom to put her to bed. After dinner we did a following directions worksheet that I had brought. It had three rows of four ice-cream cones. Some cones were single cones, some double and some triple cones. She had to follow the directions to color the top right or the bottom left. She had to identify the single, double and triple scoop cones.
Mom was put in bed and we watched a little TV and then we said our prayers. Tonight I asked mom to say the prayers and she said the Lord’s Prayer and Hail Mary. She then said, “God help me to be peaceful tonight and help my children to all get home safely, Amen.” Let’s pray that mom gets home soon and safely as well.
As I left mom’s room I passed the nurse who takes such good care of mom. We love her. I asked her if she had a bracelet and she said no. I couldn’t believe that we never gave her one. I read the quote, “Don’t quit 5 mins. B4 the miracle happens” and told her she was to look at it and think about her goal of becoming a neurologist (she goes to Stony Brook to be a doctor and works at the facility at night). We hugged and cried. I got into the elevator and the day nurse was working a double shift and saw me and we hugged and cried for the whole ride down to the first floor. I see her on the mornings I come to see mom. I got out of the elevator and looked to my right, the vent unit and just started crying hysterically. Today marks the 18 month of mom ordeal.
I got in the car and of course there were Christmas carols playing. I have a special attachment to the song, “I’ll Be Home for Christmas.” Ava was a preemie and born at 2 lbs. 14 oz. on Nov. 20th. That whole season I would cry when I heard that song in a store, the car or anywhere. Ava WAS home for Christmas and she fit in her Christmas stocking, my favorite photo of her. Six years later to the day, Jean was hit by a car and broke his femur. He was in the hospital that whole Christmas season. Once again I heard that song and cried. He too made it home for Christmas. This year my tears are tears of joy! I can’t believe mom will be home for Christmas too.
OK here is the scoop. We were told by the Social Worker that mom could go home tomorrow OR Saturday OR next week. We are still HOPING that it will be tomorrow. The doctor came tonight to check her out and complete the last of his paperwork. All of the nurses and CNA's all seem to think it WILL be tomorrow.
HERE is the suggestion…Anyone who wants to come can and should still come. The worst that can happen is that she doesn’t go home tomorrow and you visit instead. I don’t know how soon from them telling us and her actually leaving will be. They could tell us she can go and in a half hour we leave or in hours. We don’t know.
If anyone knows that miracles happen, it’s us…keep praying and we are leaving it in Gods hands. I saw an inspirational saying once that I love
Don’t worry about tomorrow…God is already there!
Peace and Be Well,
~Claud
Thursday, December 1, 2011
Mom Update, November 30, 2011, Wednesday
Mom’s update November 30, 2011
I started the day with mom today. She was crying a lot when she saw me. I almost couldn’t console her. I finally put the TV on as a distraction and it worked. She watched Cyndi Lauper on Good Morning America sing Christmas Carols (Whatever gets the job done!). From that moment one she was in a good mood. She took a long time to eat her breakfast this morning. I brought her turkey kielbasa (low fat/ low sodium – YUM!) After she ate her eggs and kielbasa she said, “Where is my breakfast? They didn’t give me anything.” It is times like that where I get scared. She really didn’t remember eating. She was OK when I told her she had eaten. She thought for a while and then said, “Oh, yea.” Today was the best I ever saw her with transferring from the bed to the wheel chair. The CNA’s were amazed. She swung her legs off the bed and pulled herself up. She stood and actually lifted her feet to pivot! She also did well in the bathroom. I had to leave to get to work.
Anthony called her on his way there and she told him to hurry because they were looking for her to practice with the car. Anthony came next. He put her jacket on her and wheeled her downstairs. Her OT had a meeting so they had to practice with the car at 1:30. They sat outside for a while and then went upstairs for lunch. The OT and PT helped her in the car once. She did it better today than yesterday. After they helped her in and out of the car they went back inside. Anthony called dad later and he told him that they didn’t take her for OT and PT. I guess one time in and out constitutes OT/PT! I am going to talk to them tomorrow.
Dad stayed with mom all afternoon and into the evening until John came. He said mom wrote today in her book and they watched movies.
Kathy talked to the social worker. We were trying to find out if we could take mom home on Friday without waiting for the social service nurse to release her. The nurse (who is THE ONLY nurse for Medicaid discharge in Suffolk County – this is not a typo! She is THE ONLY nurse) was on vacation last week and out today. She is very backed up. What does this mean? We can have all the equipment, a commitment from the home health care agency for an aide, and all of her paperwork at the facility done AND we can’t take her home. If we decide to “sign her out” and take her home…we lose the facility case worker and start the entire process over from the beginning and have to learn how to get the Medicaid services by ourselves (new evaluation from the same nurse – which will take 4 weeks to get an appointment for the evaluation – we also have to wait for an agency then and may not get the same amt. of services! AAAAHHHHH!) This whole process is so frustrating. The facility social worker is getting to work early tomorrow to call the nurse to see if she can get the OK to release mom on Friday. We will let all of you know the minute we know. Please keep praying.
John went to mom in the evening. He said mom is scared to come home and she told him, “What if I can’t do things?” John said, “First of all there is no can’t, you have to practice. As soon as your able to you will do what you have to.” John and mom played dominos. Mom asked, “How do you know when you are done?” John said, “We aren’t really playing, we are just matching up tiles.” She was content in that answer. John made her clean up the tiles. He knew that she would like this type of organized task of placing the tiles in a pattern in the box. Ava called and spoke to mom for a while. Ava told mom that she went to a basketball game. John said mom asked very relevant questions (Who did you go with? Where was the game? Did you have fun?) They talked for a long time. John said her dinner wasn’t very appetizing. He thought it looked gross and mom didn’t even want it. John convinced her to have her fruit. They watched King of Queens and mom laughed! Mom was put into bed and John stayed with her. He kissed her goodnight and left.
Tomorrow marks 18 months to the day! We have already proven that miracles happen...let's pray for one more.
Peace and be well,
~Claud
I started the day with mom today. She was crying a lot when she saw me. I almost couldn’t console her. I finally put the TV on as a distraction and it worked. She watched Cyndi Lauper on Good Morning America sing Christmas Carols (Whatever gets the job done!). From that moment one she was in a good mood. She took a long time to eat her breakfast this morning. I brought her turkey kielbasa (low fat/ low sodium – YUM!) After she ate her eggs and kielbasa she said, “Where is my breakfast? They didn’t give me anything.” It is times like that where I get scared. She really didn’t remember eating. She was OK when I told her she had eaten. She thought for a while and then said, “Oh, yea.” Today was the best I ever saw her with transferring from the bed to the wheel chair. The CNA’s were amazed. She swung her legs off the bed and pulled herself up. She stood and actually lifted her feet to pivot! She also did well in the bathroom. I had to leave to get to work.
Anthony called her on his way there and she told him to hurry because they were looking for her to practice with the car. Anthony came next. He put her jacket on her and wheeled her downstairs. Her OT had a meeting so they had to practice with the car at 1:30. They sat outside for a while and then went upstairs for lunch. The OT and PT helped her in the car once. She did it better today than yesterday. After they helped her in and out of the car they went back inside. Anthony called dad later and he told him that they didn’t take her for OT and PT. I guess one time in and out constitutes OT/PT! I am going to talk to them tomorrow.
Dad stayed with mom all afternoon and into the evening until John came. He said mom wrote today in her book and they watched movies.
Kathy talked to the social worker. We were trying to find out if we could take mom home on Friday without waiting for the social service nurse to release her. The nurse (who is THE ONLY nurse for Medicaid discharge in Suffolk County – this is not a typo! She is THE ONLY nurse) was on vacation last week and out today. She is very backed up. What does this mean? We can have all the equipment, a commitment from the home health care agency for an aide, and all of her paperwork at the facility done AND we can’t take her home. If we decide to “sign her out” and take her home…we lose the facility case worker and start the entire process over from the beginning and have to learn how to get the Medicaid services by ourselves (new evaluation from the same nurse – which will take 4 weeks to get an appointment for the evaluation – we also have to wait for an agency then and may not get the same amt. of services! AAAAHHHHH!) This whole process is so frustrating. The facility social worker is getting to work early tomorrow to call the nurse to see if she can get the OK to release mom on Friday. We will let all of you know the minute we know. Please keep praying.
John went to mom in the evening. He said mom is scared to come home and she told him, “What if I can’t do things?” John said, “First of all there is no can’t, you have to practice. As soon as your able to you will do what you have to.” John and mom played dominos. Mom asked, “How do you know when you are done?” John said, “We aren’t really playing, we are just matching up tiles.” She was content in that answer. John made her clean up the tiles. He knew that she would like this type of organized task of placing the tiles in a pattern in the box. Ava called and spoke to mom for a while. Ava told mom that she went to a basketball game. John said mom asked very relevant questions (Who did you go with? Where was the game? Did you have fun?) They talked for a long time. John said her dinner wasn’t very appetizing. He thought it looked gross and mom didn’t even want it. John convinced her to have her fruit. They watched King of Queens and mom laughed! Mom was put into bed and John stayed with her. He kissed her goodnight and left.
Tomorrow marks 18 months to the day! We have already proven that miracles happen...let's pray for one more.
Peace and be well,
~Claud
Tuesday, November 29, 2011
Mom Update, November 29, 2011, Tuesday
As per the Social Worker today….we are still not sure if mom will be discharged to go home on Friday or not. We will keep you all posted though. We think we may just find out if we can just take her home on Friday for good without their formal approval or not. I am not sure if this will affect her insurance status or not though. We are waiting for the nurse from the Dept. of Social Services to say, “OK” to the company who will be servicing mom by providing an aide, nurse, OT and PT. That person, the DOSS nurse, was on vacation all last week.
Claudia began the morning with mom. She brought mom a roll with butter to have with her breakfast. Claudia found out that mom’s nurse had spent the morning cleaning up mom’s medical files and records so that all will be in order so that it will be easier to discharge mom.
Anthony said that he, dad, the PT and the OT all worked with mom today to practice getting in and out of the car!!!! We decided that Anthony’s car is probably the best one for mom to travel home in because it is lower to the ground compared to dad’s van. Mom did very well the first time she tried and did OK the second time and not so good at all the third time.
Anthony said that the procedure is to open the car window so that mom can grab onto the door at the point of the window similar to holding onto a bar in the bathroom or the hallway railing at the facility. Mom grabs there and pulls to a standing position from the wheelchair. Next, once she is standing, Anthony or Dad gave her verbal cues to move her feet (which foot to move and where). Next, mom needs to do the pivot to turn so she can sit on the seat of the car. The hardest part of the process is scooching her bottom further and further into the car on the seat. The car seat gets put the farthest forward it can when mom enters the car. Then it gets pushed all the way back once mom sits so that her feet can be swung around in front of her.
Mom knew it was a practice run for getting in the car in preparation for going home. I was worried that she might have become confused and think she is going home then and there, but she didn’t get confused and understood the concept of practicing. The second time she got in, she smiled at dad and Anthony and said, “OK I’m in. Let’s go. Take me home” and laughed jokingly.
I met with the facility Social Worker today to prepare for mom’s homecoming. We needed to discuss the following things:
Neck bandages for the stoma (hole in mom’s neck): Will be supplied by the visiting nurse once mom is home, and by the facility for the first weekend (facility to provide a few)
We buy gloves---no reimbursement or through home care company maybe
30 day scripts for every medication mom is on -- for each prescription including those labeled “as needed”
Script for PT, OT, and Nursing evaluations for the home care company and we give it to the home care nurse when the nurse comes for the initial evaluation
The Home Care Company will constantly keep in touch with mom’s neighborhood primary care doctor
Script for the aide --- 6 hours per day, 7 days per week
Company is called Attentive in Babylon
Pat Chiefo is our contact person –
Contact Home Care Company to change the aide if there are ever problems----to change the Home Care Company, call the Dept. of Social Services nurse
Script for Gerry chair and seat lift today----
Script for transport chair and tub transfer bench today---
Bed and mattress---ordered by facility Social Worker today---fully electric bed---Social Worker got the script from facility doctor today (fully electric beds may not be covered by insurance but should be as per the one company the Social Worker talked to)
Copy of script for mom’s brace from the botox doctor
Once I got to mom’s room, dad brought her to the bathroom alone and did well! Mom and I did some “Logic Links” patterns. For example, you start with about 20 multicolored chips and then you pick a card. The first card mom picked said, “Use 1 green chip, 1 orange chip, and 1 purple chip. Clue 1: The green chip is not the center chip. Clue 2: The orange chip is not the center chip. Clue 3: The purple chip is directly on the right of the green chip.” You follow all the directions to complete a specified pattern. Mom couldn’t even find the right chips until her third card, then she found each color quickly and efficiently. It took her that long to change activities and focus on something new. By the third card, mom was also able to follow 2 of the 3 directions alone!
I left for work and told mom to continue working on a Life Skills work sheet that Claudia brought for her to do. Mom said, “No way! I’m watching TV” and laughed but dad said she worked hard on the sheet after I left.
Saturday evening, Dad and I went out to dinner and a movie. Dad's love and devotion to mom struck me so much during our conversation about mom's homecoming. Here we were, talking about the day mom comes home...going over the most minute details (what car to use to get her home--which would she be able to get in and out of easily, should we transport her via ambulette? Will they both be overwhelmed with guests at their house that day?....on and on the considerations went)...and there was dad...so calm and in control. So serene was he with knowledge in the fact that his "girl" as he refers to mom so tenderly would be finally returning home. I don't know about anyone else, but I don't know many men who would have stayed by mom's side through thick and thin...in snow and sleet and rain and hurricanes...the way that my dad has. I know I've said it before, but what a testament of what love is. They both long for each others company day after day...they both support each other (even mom in the state she is in)...their love remains constant and in tact and secure. It was just something about the way that dad looked Saturday as we talked that conveyed so much more than words can express about 'togetherness' and love. His strong, secure confidence exuded from every aspect of him. It was a most awesome thing to be in the presence of. Indeed, we all certainly have been blessed.
Dad stayed to put mom to bed tonight. Though it is hard for us to wait for mom to get home, and we want her home as soon as possible, pray for God’s Divine Guidance --- He Alone knows when mom should be at home.
"Yet the Lord longs to be gracious to you... Blessed are all who wait for Him." Isaiah 30:18
Claudia began the morning with mom. She brought mom a roll with butter to have with her breakfast. Claudia found out that mom’s nurse had spent the morning cleaning up mom’s medical files and records so that all will be in order so that it will be easier to discharge mom.
Anthony said that he, dad, the PT and the OT all worked with mom today to practice getting in and out of the car!!!! We decided that Anthony’s car is probably the best one for mom to travel home in because it is lower to the ground compared to dad’s van. Mom did very well the first time she tried and did OK the second time and not so good at all the third time.
Anthony said that the procedure is to open the car window so that mom can grab onto the door at the point of the window similar to holding onto a bar in the bathroom or the hallway railing at the facility. Mom grabs there and pulls to a standing position from the wheelchair. Next, once she is standing, Anthony or Dad gave her verbal cues to move her feet (which foot to move and where). Next, mom needs to do the pivot to turn so she can sit on the seat of the car. The hardest part of the process is scooching her bottom further and further into the car on the seat. The car seat gets put the farthest forward it can when mom enters the car. Then it gets pushed all the way back once mom sits so that her feet can be swung around in front of her.
Mom knew it was a practice run for getting in the car in preparation for going home. I was worried that she might have become confused and think she is going home then and there, but she didn’t get confused and understood the concept of practicing. The second time she got in, she smiled at dad and Anthony and said, “OK I’m in. Let’s go. Take me home” and laughed jokingly.
I met with the facility Social Worker today to prepare for mom’s homecoming. We needed to discuss the following things:
Neck bandages for the stoma (hole in mom’s neck): Will be supplied by the visiting nurse once mom is home, and by the facility for the first weekend (facility to provide a few)
We buy gloves---no reimbursement or through home care company maybe
30 day scripts for every medication mom is on -- for each prescription including those labeled “as needed”
Script for PT, OT, and Nursing evaluations for the home care company and we give it to the home care nurse when the nurse comes for the initial evaluation
The Home Care Company will constantly keep in touch with mom’s neighborhood primary care doctor
Script for the aide --- 6 hours per day, 7 days per week
Company is called Attentive in Babylon
Pat Chiefo is our contact person –
Contact Home Care Company to change the aide if there are ever problems----to change the Home Care Company, call the Dept. of Social Services nurse
Script for Gerry chair and seat lift today----
Script for transport chair and tub transfer bench today---
Bed and mattress---ordered by facility Social Worker today---fully electric bed---Social Worker got the script from facility doctor today (fully electric beds may not be covered by insurance but should be as per the one company the Social Worker talked to)
Copy of script for mom’s brace from the botox doctor
Once I got to mom’s room, dad brought her to the bathroom alone and did well! Mom and I did some “Logic Links” patterns. For example, you start with about 20 multicolored chips and then you pick a card. The first card mom picked said, “Use 1 green chip, 1 orange chip, and 1 purple chip. Clue 1: The green chip is not the center chip. Clue 2: The orange chip is not the center chip. Clue 3: The purple chip is directly on the right of the green chip.” You follow all the directions to complete a specified pattern. Mom couldn’t even find the right chips until her third card, then she found each color quickly and efficiently. It took her that long to change activities and focus on something new. By the third card, mom was also able to follow 2 of the 3 directions alone!
I left for work and told mom to continue working on a Life Skills work sheet that Claudia brought for her to do. Mom said, “No way! I’m watching TV” and laughed but dad said she worked hard on the sheet after I left.
Saturday evening, Dad and I went out to dinner and a movie. Dad's love and devotion to mom struck me so much during our conversation about mom's homecoming. Here we were, talking about the day mom comes home...going over the most minute details (what car to use to get her home--which would she be able to get in and out of easily, should we transport her via ambulette? Will they both be overwhelmed with guests at their house that day?....on and on the considerations went)...and there was dad...so calm and in control. So serene was he with knowledge in the fact that his "girl" as he refers to mom so tenderly would be finally returning home. I don't know about anyone else, but I don't know many men who would have stayed by mom's side through thick and thin...in snow and sleet and rain and hurricanes...the way that my dad has. I know I've said it before, but what a testament of what love is. They both long for each others company day after day...they both support each other (even mom in the state she is in)...their love remains constant and in tact and secure. It was just something about the way that dad looked Saturday as we talked that conveyed so much more than words can express about 'togetherness' and love. His strong, secure confidence exuded from every aspect of him. It was a most awesome thing to be in the presence of. Indeed, we all certainly have been blessed.
Dad stayed to put mom to bed tonight. Though it is hard for us to wait for mom to get home, and we want her home as soon as possible, pray for God’s Divine Guidance --- He Alone knows when mom should be at home.
"Yet the Lord longs to be gracious to you... Blessed are all who wait for Him." Isaiah 30:18
Monday, November 28, 2011
Mom Update, November 28, 2011, Monday
Mom’s update November 28, 2011
Jean started the day with mom today. He said he had a great morning with her. The nurse came in the room and went to give mom her medicine (a liquid that tastes awful) and mom said, “I already took that!” The nurse said, “I am the only one who gives you meds and I didn’t give it to you, you didn’t take it” and mom laughed and looked at Jean! Jean cracked up (good try – A for effort). Jean made sure she drank her prune juice (yum!). He said they read the paper and watched Neil Patrick Harris with Kelly on TV. Pop called while Jean was there and she spoke with him.
Jean left and Anthony came. Anthony stayed with mom until dad came. Dad came late today because he had a physical today. I didn’t get a chance to ask Anthony how she was. I am sure he took mom for a walk down by the big windows or maybe he took her outside since it was so beautiful.
Dad had a great time with mom today. He said they had a lot of fun. He said they were joking around and laughing a lot. Dad took mom to the bathroom by himself and she did well, he also took her with the OT and an aid today and she did well each and every time. Dad said she is getting the idea that she is going home. She told the nurse that she is going home. Mom and dad spent the afternoon watching an old movie on AMC.
Con, Anthony, Sam and her friend Emily came next and dad went home. She ate dinner and had a piece of pizza, salad and cake. They watched a movie on AMC. Sam and Anthony had homework to do so they went to the lounge to do it. They spent some time with mom because it may be the last time they come in the evening to the facility (God willing). Con and mom talked. They were talking about old times. Mom didn’t get upset until the end. Mom wanted to call Anthony so they called him at work. The CNA’s came in and Con stayed in the room to see how they worked with mom. They put her in bed and Con took out her hearing aid and kissed mom goodnight and they all left.
Mom called me tonight and told me to bring her a good breakfast tomorrow. She asked me to bring her bread or a biscuit! I will bring her breakfast and maybe a roll or something. It will be the first time she has “white flour” at breakfast. I will see about getting it. I feel bad since I know it isn’t in her best interest. I think if I bring her an omelet with a few potatoes it will distract her from the roll.
Peace and Be Well,
~Claud
Jean started the day with mom today. He said he had a great morning with her. The nurse came in the room and went to give mom her medicine (a liquid that tastes awful) and mom said, “I already took that!” The nurse said, “I am the only one who gives you meds and I didn’t give it to you, you didn’t take it” and mom laughed and looked at Jean! Jean cracked up (good try – A for effort). Jean made sure she drank her prune juice (yum!). He said they read the paper and watched Neil Patrick Harris with Kelly on TV. Pop called while Jean was there and she spoke with him.
Jean left and Anthony came. Anthony stayed with mom until dad came. Dad came late today because he had a physical today. I didn’t get a chance to ask Anthony how she was. I am sure he took mom for a walk down by the big windows or maybe he took her outside since it was so beautiful.
Dad had a great time with mom today. He said they had a lot of fun. He said they were joking around and laughing a lot. Dad took mom to the bathroom by himself and she did well, he also took her with the OT and an aid today and she did well each and every time. Dad said she is getting the idea that she is going home. She told the nurse that she is going home. Mom and dad spent the afternoon watching an old movie on AMC.
Con, Anthony, Sam and her friend Emily came next and dad went home. She ate dinner and had a piece of pizza, salad and cake. They watched a movie on AMC. Sam and Anthony had homework to do so they went to the lounge to do it. They spent some time with mom because it may be the last time they come in the evening to the facility (God willing). Con and mom talked. They were talking about old times. Mom didn’t get upset until the end. Mom wanted to call Anthony so they called him at work. The CNA’s came in and Con stayed in the room to see how they worked with mom. They put her in bed and Con took out her hearing aid and kissed mom goodnight and they all left.
Mom called me tonight and told me to bring her a good breakfast tomorrow. She asked me to bring her bread or a biscuit! I will bring her breakfast and maybe a roll or something. It will be the first time she has “white flour” at breakfast. I will see about getting it. I feel bad since I know it isn’t in her best interest. I think if I bring her an omelet with a few potatoes it will distract her from the roll.
Peace and Be Well,
~Claud
Mom Update, November 27, 2011, Sunday
Con and Anthony started the day with mom. When they arrived, mom was awake and happy to see them. She asked where I was and Con and Anthony told her they were letting me sleep late today. Her breakfast came and they fixed her oatmeal and had her drink her prune juice! She ate every bit of her breakfast. She then was dressed and put in her chair. Con and Anthony took mom outside but it was a bit nippy and mom wanted to come in. They then took her to the end of the hallway where there is a big window and sat and talked. They looked outside. They counted cars and talked and laughed. She wanted to go to the bathroom so they went back to the room. When she came out of the bathroom her pants were crooked to Anthony told her to stand up so they could fix her pants. She stood up 6 - 7 times! Lunch came and she ate the entire lunch. They hung out, talked and watched TV. Dad came next and stayed with mom until the night time when she was put in bed. I didn't get a chance to speak to dad when he came home, so I will write tomorrow about how mom was this evening.
Please keep mom in your prayers so that all goes well and she comes home at the end of this week.
Peace and be well,
~Claud
Please keep mom in your prayers so that all goes well and she comes home at the end of this week.
Peace and be well,
~Claud
Saturday, November 26, 2011
Mom Update, November 26, 2011, Saturday
Mom’s update November 26, 2011
When I came to see mom this morning she was hysterical crying. She was in a crying jag and practically inconsolable. She was crying that she needed a tissue, but she had one in her hand. She was crying that she was laying down flat, but I had lifted her up in the bed and had her sitting up. I gave her tissues, I held my hand over her stoma so she could blow her nose, but she kept crying. At one point I just said, “Stop crying this isn’t helping you. You need to stop.” She looked at me and started to ease up. I told her that I was there and I wasn’t leaving and that she had a great breakfast and tried to distract her. I gave her breakfast and she calmed down. I felt terrible being stern, but I think she just needed to be snapped out of it. We had a great breakfast together. I brought mom a ham and cheese omelet and home fries.
After breakfast we did a Mets puzzle book that I brought for her. The first activity was connect the dots. She did great. She only missed two numbers. We then did an activity where she had to match players’ names and their jersey number. I asked her if she knew their numbers and she said no. I took out her team baseball cards and found all but two players. She looked at the card and then drew the line from the player to the jersey. We called Anthony to see if he knew the last two players but he didn’t know their numbers. Mom talked to Anthony and he told her that he and Con and the kids were going to Brooklyn today to see Con’s relatives. Dad also called this morning and spoke to mom.
The CNA’s came in to get mom ready for the day. She had a difficult time standing this morning. When the CNA wheeled her back in the room mom said, “Get me thank you notes. I have to thank all these girls.” I will get thank you cards today so that mom can write them tomorrow. I put Mary Tyler Moore on and mom was so happy to watch the show.
The nurse came in the room and said she would be back soon to change mom’s bandage and that she would also do her g-tube! WHAT?! I asked her if she read mom’s care plan and she said she did. She walked out of the room and came back with the care plan sheet to show me that it said G-tube. I went to the nursing supervisor and asked her to check mom’s care plan. They looked at it and said that it says g-tube site. She said that they check and clean the site every day. I am here all the time and so is everyone in my family and I can speak for myself when I say, they DO NOT check OR clean the site daily!
After we watched an episode I took mom downstairs to the vending machines. Mom took her purse. We bought a pack of pretzels and an ice tea. Mom didn’t like the ice tea. We sat in the lobby and people watched. One of mom’s old CNA’s from the vent unit came over to talk to mom. Her face lights up when she sees her. Mom also thinks that she is someone from her past. She thinks she is a student from when mom worked in the schools. She actually does look like a girl from school and Anthony and I often say that she probably thinks it’s her.
We came back to the room and watched another episode of Mary Tyler Moore. It was the Chuckles the Clown episode! It is my favorite episode!
We did sequencing cards today. They were 3 card sequences. She did OK. She was able to put them in order but then had a hard time describing what was on the card in order. We did an activity and then we watched another episode. Dad came and brought the article from Cambridge University about how you can read a word if the first and last letter are in the right place and the middle of the word is scrambled. Mom was able to read the passage!!! Holy Cow! Dad and I couldn’t believe it.
Dad stayed with mom and watched Mary Tyler Moore. They read the paper and looked at magazines and watched TV. Dad left when Terry came and Terry stayed with mom until she went to bed.
Please keep mom in your prayers so that she actually will come home when they say she will. She is expected to be home at the end of the week. There is a meeting with the social worker on Tuesday at 1:30 to go over all the equipment that is needed in the home.
Thank you to all who read this blog and pray for mom! Thank you for all of your support.
Peace and Be Well,
~Claud
When I came to see mom this morning she was hysterical crying. She was in a crying jag and practically inconsolable. She was crying that she needed a tissue, but she had one in her hand. She was crying that she was laying down flat, but I had lifted her up in the bed and had her sitting up. I gave her tissues, I held my hand over her stoma so she could blow her nose, but she kept crying. At one point I just said, “Stop crying this isn’t helping you. You need to stop.” She looked at me and started to ease up. I told her that I was there and I wasn’t leaving and that she had a great breakfast and tried to distract her. I gave her breakfast and she calmed down. I felt terrible being stern, but I think she just needed to be snapped out of it. We had a great breakfast together. I brought mom a ham and cheese omelet and home fries.
After breakfast we did a Mets puzzle book that I brought for her. The first activity was connect the dots. She did great. She only missed two numbers. We then did an activity where she had to match players’ names and their jersey number. I asked her if she knew their numbers and she said no. I took out her team baseball cards and found all but two players. She looked at the card and then drew the line from the player to the jersey. We called Anthony to see if he knew the last two players but he didn’t know their numbers. Mom talked to Anthony and he told her that he and Con and the kids were going to Brooklyn today to see Con’s relatives. Dad also called this morning and spoke to mom.
The CNA’s came in to get mom ready for the day. She had a difficult time standing this morning. When the CNA wheeled her back in the room mom said, “Get me thank you notes. I have to thank all these girls.” I will get thank you cards today so that mom can write them tomorrow. I put Mary Tyler Moore on and mom was so happy to watch the show.
The nurse came in the room and said she would be back soon to change mom’s bandage and that she would also do her g-tube! WHAT?! I asked her if she read mom’s care plan and she said she did. She walked out of the room and came back with the care plan sheet to show me that it said G-tube. I went to the nursing supervisor and asked her to check mom’s care plan. They looked at it and said that it says g-tube site. She said that they check and clean the site every day. I am here all the time and so is everyone in my family and I can speak for myself when I say, they DO NOT check OR clean the site daily!
After we watched an episode I took mom downstairs to the vending machines. Mom took her purse. We bought a pack of pretzels and an ice tea. Mom didn’t like the ice tea. We sat in the lobby and people watched. One of mom’s old CNA’s from the vent unit came over to talk to mom. Her face lights up when she sees her. Mom also thinks that she is someone from her past. She thinks she is a student from when mom worked in the schools. She actually does look like a girl from school and Anthony and I often say that she probably thinks it’s her.
We came back to the room and watched another episode of Mary Tyler Moore. It was the Chuckles the Clown episode! It is my favorite episode!
We did sequencing cards today. They were 3 card sequences. She did OK. She was able to put them in order but then had a hard time describing what was on the card in order. We did an activity and then we watched another episode. Dad came and brought the article from Cambridge University about how you can read a word if the first and last letter are in the right place and the middle of the word is scrambled. Mom was able to read the passage!!! Holy Cow! Dad and I couldn’t believe it.
Dad stayed with mom and watched Mary Tyler Moore. They read the paper and looked at magazines and watched TV. Dad left when Terry came and Terry stayed with mom until she went to bed.
Please keep mom in your prayers so that she actually will come home when they say she will. She is expected to be home at the end of the week. There is a meeting with the social worker on Tuesday at 1:30 to go over all the equipment that is needed in the home.
Thank you to all who read this blog and pray for mom! Thank you for all of your support.
Peace and Be Well,
~Claud
Friday, November 25, 2011
Mom Update, November 25, 2011, Friday
When I arrived at mom’s this morning, she looked up and thanked me for coming and then began to bark out orders!! Hahaha! Her breakfast had just arrived. I set her up and she cried and cried that she doesn’t want to be in the facility any more and that she wants to go home. I told her we could start a count down of the days now! Once she settled down, she began to eat. She called Claudia and, when Claudia asked how mom was, Mom’s reply was: “How am I? Well, physically I’m fine. Mentally, I’m pretty down.” WOW! How great is it that she can articulate her feelings.
Mom enjoys eating her Fiber One cereal…so I let her take her time with it. I also allow her to have a few small bowlfuls so that she is energized and ready for the day. While she ate, I straightened her room. I threw out old magazines and newspapers first. As I did this, mom kept asking in an annoyed tone, “What are you throwing away? Tell me. Show me” and also, “Maybe dad is saving that newspaper for a reason.” I showed her each item I was throwing out so that I could wait for her approval to do so first! She is too much!
We have decided to leave everything in mom’s room until she goes home. The day she leaves, we will pack her and the room up---we are pros at packing up now! It takes us no time at all to do it. The idea behind leaving things as is in her room is to give mom some stability. Mom talks a lot about how she looks at everything on the walls and reads the signs…she creates cognitive games for herself based on the things on the walls (How many signs have the letter ‘e’ or how many girls are in the family…). Most of what is on the walls is there for an educational purpose. The signs all have important meaning. The pictures are there to create memories. The books on the book shelf are arranged a certain way so that mom can look at the shelf and see titles or pages that have meaning.
Mom is used to the way things are in the room and has looked at those walls and the things on them for the last 18 months. No matter what room mom has been in, we always put the pictures and signs and items in the same order on the same walls in the same places—to provide stability and security for mom. We don’t want her to sit there with nothing to look at or to feel that her surroundings are unfamiliar. This would be scary and unsettling for her.
As I cleaned up the shelves and drawers…, mom and I also did a trip down memory lane. I came across both the mitts and the social story Claudia created about having to wear them from back in the days when mom was ripping out 3tubes and climbing out of bed. Looking back now, it is very clear that what we were witnessing was a reaction to the anesthesia from the shunt surgery. It can sometimes take up to a year to get out of a person’s system. Anyway, back to the mitts and the Social Story…I showed mom the mitts and asked her if she remembered them. She didn’t. I was so amazed that she wore those mitts for 9 months and hated every second that she did but never even remembered them. Thank God.
I also found the very first Social Story Claudia made for mom about 14 months ago, the “Getting Better” story. This story, mom remembered. That amazed me too. I didn’t think she would remember the story. We read it together and, as we did, she followed all the directions in the story (“If I want to get better, I need to practice moving my left hand” and “If I want to get better, I need to move my feet”). Mom said, “I can do all this.” When I told her she couldn’t move her feet, or wiggle her toes last year, she couldn’t believe it, saying, “Really?!!!”
I found the “Serita Social Story” too and the “Choice Board” Claudia created for her as well. The “Choice Board” had pictures of the various activities and drills we would run with mom like a picture of beads, or markers, or the scissors. We would show mom the pictures and she would be able to either point to or, later, select the picture of the activity she wanted to do.
She’s come a looonnnggg way baby!!
Mom wrote in her journal next:
“Friday, Day aLter (after) hanksgiving (Thanksgiving)
Yesterday we all stayed at the fcility (facility) and we had a room to ourselves. We had a wonderful Thanksgiving day and my grandchildren and the other children were were all at the dacility (facility) and had a wonderful day. We had a room to ourselves. We played anpus? (games) and were very happy just to be with one another and come home very cullules? It was a wonderful Thanksgiving day. Just to have everybody all together. We played games and just enjoyed all being together.”
Mom had a shower next and then mom asked me to put her make up on. Then we went for a walk. I put mom’s jacket on and went to sit outside in the sun. Claudia and Terry arrived and sat with us. Shortly after that, Con, Anthony, Anthony Michael, Sammy and Dad came too. They sat outside then went up to lunch. After lunch, they went back outside and took mom for a walk around the building. Mom enjoyed that. They went back inside and hung out for a while and then they left—but mom cried really hard so they stayed until she was calm.
Dad spent the rest of the afternoon with mom and put her to bed tonight. He told me that mom did great with just him assisting her today!! But mom was too tired to do any OT or PT work when the therapists came.
“You will live in joy and peace.” Isaiah 55:12
Mom enjoys eating her Fiber One cereal…so I let her take her time with it. I also allow her to have a few small bowlfuls so that she is energized and ready for the day. While she ate, I straightened her room. I threw out old magazines and newspapers first. As I did this, mom kept asking in an annoyed tone, “What are you throwing away? Tell me. Show me” and also, “Maybe dad is saving that newspaper for a reason.” I showed her each item I was throwing out so that I could wait for her approval to do so first! She is too much!
We have decided to leave everything in mom’s room until she goes home. The day she leaves, we will pack her and the room up---we are pros at packing up now! It takes us no time at all to do it. The idea behind leaving things as is in her room is to give mom some stability. Mom talks a lot about how she looks at everything on the walls and reads the signs…she creates cognitive games for herself based on the things on the walls (How many signs have the letter ‘e’ or how many girls are in the family…). Most of what is on the walls is there for an educational purpose. The signs all have important meaning. The pictures are there to create memories. The books on the book shelf are arranged a certain way so that mom can look at the shelf and see titles or pages that have meaning.
Mom is used to the way things are in the room and has looked at those walls and the things on them for the last 18 months. No matter what room mom has been in, we always put the pictures and signs and items in the same order on the same walls in the same places—to provide stability and security for mom. We don’t want her to sit there with nothing to look at or to feel that her surroundings are unfamiliar. This would be scary and unsettling for her.
As I cleaned up the shelves and drawers…, mom and I also did a trip down memory lane. I came across both the mitts and the social story Claudia created about having to wear them from back in the days when mom was ripping out 3tubes and climbing out of bed. Looking back now, it is very clear that what we were witnessing was a reaction to the anesthesia from the shunt surgery. It can sometimes take up to a year to get out of a person’s system. Anyway, back to the mitts and the Social Story…I showed mom the mitts and asked her if she remembered them. She didn’t. I was so amazed that she wore those mitts for 9 months and hated every second that she did but never even remembered them. Thank God.
I also found the very first Social Story Claudia made for mom about 14 months ago, the “Getting Better” story. This story, mom remembered. That amazed me too. I didn’t think she would remember the story. We read it together and, as we did, she followed all the directions in the story (“If I want to get better, I need to practice moving my left hand” and “If I want to get better, I need to move my feet”). Mom said, “I can do all this.” When I told her she couldn’t move her feet, or wiggle her toes last year, she couldn’t believe it, saying, “Really?!!!”
I found the “Serita Social Story” too and the “Choice Board” Claudia created for her as well. The “Choice Board” had pictures of the various activities and drills we would run with mom like a picture of beads, or markers, or the scissors. We would show mom the pictures and she would be able to either point to or, later, select the picture of the activity she wanted to do.
She’s come a looonnnggg way baby!!
Mom wrote in her journal next:
“Friday, Day aLter (after) hanksgiving (Thanksgiving)
Yesterday we all stayed at the fcility (facility) and we had a room to ourselves. We had a wonderful Thanksgiving day and my grandchildren and the other children were were all at the dacility (facility) and had a wonderful day. We had a room to ourselves. We played anpus? (games) and were very happy just to be with one another and come home very cullules? It was a wonderful Thanksgiving day. Just to have everybody all together. We played games and just enjoyed all being together.”
Mom had a shower next and then mom asked me to put her make up on. Then we went for a walk. I put mom’s jacket on and went to sit outside in the sun. Claudia and Terry arrived and sat with us. Shortly after that, Con, Anthony, Anthony Michael, Sammy and Dad came too. They sat outside then went up to lunch. After lunch, they went back outside and took mom for a walk around the building. Mom enjoyed that. They went back inside and hung out for a while and then they left—but mom cried really hard so they stayed until she was calm.
Dad spent the rest of the afternoon with mom and put her to bed tonight. He told me that mom did great with just him assisting her today!! But mom was too tired to do any OT or PT work when the therapists came.
“You will live in joy and peace.” Isaiah 55:12
Thursday, November 24, 2011
Mom Update, November 24, 2011, Thursday, Thanksgiving Day
When I arrived at mom’s room this morning and turned the corner in her doorway, the dividing curtain was closed between mom and her roommate and there was a mess of tissues thrown all over the floor!!!! Tons of tissues everywhere!!! She saw me and yelled at me!! “Where are my hearing aids?!!! I can’t hear anything!! I can’t do anything by myself!! I HATE THIS!!!”
In all actuality, mom had already fed herself her whole breakfast all by herself!!!! With no help!! She did great! She even opened her cereal box and poured her own cereal with no mess!! But she was ONERY!!!! She was nasty this morning!! All part of the grief process….midway to be exact.
We talked. I set her up but it wasn’t fast enough for her! She yelled and barked out commands. When she was set up, we talked. I asked her what she was feeling. She made faces at me and mocked my words as I spoke…I didn’t take it personally, she has to get it all out. Some emotions are literally like poison to our bodies. Mom said she was disgusted because she can’t do anything for herself. She kept saying that and then crying and then eat a little and then repeat the cycle over and over for about 45 minutes.
When she calmed down a little, I told her today is Thanksgiving and that we actually have much to be thankful for. She asked me to turn on the parade. As we watched, she said she wanted Anthony Michael and Sam to make her a pilgrim’s hat to wear today! She called them on the phone (I dialed and she talked). She told Anthony what she wanted and she said Happy Thanksgiving.
Her nurse came in and mom began to get cranky again. The nurse laughed and said mom’s affect is such a vast improvement. The nurse said that everyone loves mom and wants her here at the facility forever, but at the same time, they are really very happy that mom is going home soon. The nurse said that everyone will cry with mom the day she leaves to go home.
Mom began to reminisce about Thanksgivings past saying: “My Aunt Nellie (her father’s sister) used to come every Thanksgiving Day and bring me a big beautiful corsage with all kinds of flowers…autumn colored flowers. And when you kids were little, you would get up on Thanksgiving Day and go sit in the living room and watch the parade on TV and wait for Grandma and Grandpa City (our grandparents from Brooklyn—mom’s parents) and Uncle Twinnies (her twin brothers) to come.”
Mom asked me what she had to be thankful for…she had begun to get disgusted again. I told her she could now do many things alone. I told her that last Thanksgiving, she couldn’t eat solid food or even breathe without a respirator …she couldn’t walk or stand. She couldn’t stay awake more than a few hours a day…My God…she has come so far.
Mom ate and contemplated things seeming to be deep in thought and then she said, “Yeah, I guess I do have a lot to be thankful for…I guess I can still do some things by myself. And what would I have done without all of you?.....” Mom cried and cried again then.
Mom called Dad next but no answer. She called Aunt Carol (her friend of 72 years from Brooklyn). They talked and talked. A very normal, typical conversation. They exchanged stuffing recipes, and turkey recipes and sweet potato recipes too.
When mom’s aide brought her to the bathroom, mom asked where the aide would be today. The aide said Brooklyn so mom said that she used to live there and that Ava goes to Brooklyn College. Then mom said, “Ava is going to be a speech therapist….yeah, so you can’t say ‘ain’t’ in front of her” and laughed! Mom said, “Ava is going to do what Carmine does but you can say ‘ain’t’ in front of him!” She is too much!
We watched the parade after she got dressed and I told her we’d sing every parade song we know!! She laughed. She was very concerned about how she looks…and asked me to put her make up on. She said she wants us to teach her how to do it herself again. I told her we would.
Mom called her 2 brothers next to wish them both a Happy Thanksgiving. They had nice conversations. Mom’s CNA asked how many siblings mom has and I said twin brothers who are 10 years younger than mom. Mom said, “Yes, they are 10 years younger than me so they are 49!” she was joking!! Then mom asked me how old she is and I began to sing, “____ trombones led the big parade!!” Mom said, “Oh my God!! I’m 76? Then the boys are 86!!” laughing!! She likes to joke.
Lenny, Dad and Terry came next and visited, followed by Anthony, Con, Anthony Michael, Sammy, John, Jean, Claudia and Ava. We all reserved one of the recreation rooms and ate dinner together. As we packed up for the day, mom became sad. She said she didn't want to be a problem for anyone and that she worried about how she and dad would make out at home alone. Dad is just so tender with her....it makes me cry to watch them in action...when he helps her stand or anything, he is just so tender..."Come on my girl, you can do this. We can do this together. Come on." They are just such a blessing. What an example of love to us all. Before everyone left to go home, we gave mom a group hug!
I stayed to put mom to bed tonight. We snuggled and watched TV. We prayed together before I left her for the night.
It was a day of laughter, games (Scattergories…), jigsaw puzzles, NOOK Color games, singing…!! We thank you all for your persevering prayer and support over course of these last 17 months. Before we ate dinner, we held hands and prayed and gave thanks for yet another year all together…for all God has done…and for not quitting 5 minutes before the miracle happened.
Happy Thanksgiving with much love to all of you and yours!
“Give thanks to Him who alone does mighty miracles. His faithful love endures forever.” Psalm 136:1-4
In all actuality, mom had already fed herself her whole breakfast all by herself!!!! With no help!! She did great! She even opened her cereal box and poured her own cereal with no mess!! But she was ONERY!!!! She was nasty this morning!! All part of the grief process….midway to be exact.
We talked. I set her up but it wasn’t fast enough for her! She yelled and barked out commands. When she was set up, we talked. I asked her what she was feeling. She made faces at me and mocked my words as I spoke…I didn’t take it personally, she has to get it all out. Some emotions are literally like poison to our bodies. Mom said she was disgusted because she can’t do anything for herself. She kept saying that and then crying and then eat a little and then repeat the cycle over and over for about 45 minutes.
When she calmed down a little, I told her today is Thanksgiving and that we actually have much to be thankful for. She asked me to turn on the parade. As we watched, she said she wanted Anthony Michael and Sam to make her a pilgrim’s hat to wear today! She called them on the phone (I dialed and she talked). She told Anthony what she wanted and she said Happy Thanksgiving.
Her nurse came in and mom began to get cranky again. The nurse laughed and said mom’s affect is such a vast improvement. The nurse said that everyone loves mom and wants her here at the facility forever, but at the same time, they are really very happy that mom is going home soon. The nurse said that everyone will cry with mom the day she leaves to go home.
Mom began to reminisce about Thanksgivings past saying: “My Aunt Nellie (her father’s sister) used to come every Thanksgiving Day and bring me a big beautiful corsage with all kinds of flowers…autumn colored flowers. And when you kids were little, you would get up on Thanksgiving Day and go sit in the living room and watch the parade on TV and wait for Grandma and Grandpa City (our grandparents from Brooklyn—mom’s parents) and Uncle Twinnies (her twin brothers) to come.”
Mom asked me what she had to be thankful for…she had begun to get disgusted again. I told her she could now do many things alone. I told her that last Thanksgiving, she couldn’t eat solid food or even breathe without a respirator …she couldn’t walk or stand. She couldn’t stay awake more than a few hours a day…My God…she has come so far.
Mom ate and contemplated things seeming to be deep in thought and then she said, “Yeah, I guess I do have a lot to be thankful for…I guess I can still do some things by myself. And what would I have done without all of you?.....” Mom cried and cried again then.
Mom called Dad next but no answer. She called Aunt Carol (her friend of 72 years from Brooklyn). They talked and talked. A very normal, typical conversation. They exchanged stuffing recipes, and turkey recipes and sweet potato recipes too.
When mom’s aide brought her to the bathroom, mom asked where the aide would be today. The aide said Brooklyn so mom said that she used to live there and that Ava goes to Brooklyn College. Then mom said, “Ava is going to be a speech therapist….yeah, so you can’t say ‘ain’t’ in front of her” and laughed! Mom said, “Ava is going to do what Carmine does but you can say ‘ain’t’ in front of him!” She is too much!
We watched the parade after she got dressed and I told her we’d sing every parade song we know!! She laughed. She was very concerned about how she looks…and asked me to put her make up on. She said she wants us to teach her how to do it herself again. I told her we would.
Mom called her 2 brothers next to wish them both a Happy Thanksgiving. They had nice conversations. Mom’s CNA asked how many siblings mom has and I said twin brothers who are 10 years younger than mom. Mom said, “Yes, they are 10 years younger than me so they are 49!” she was joking!! Then mom asked me how old she is and I began to sing, “____ trombones led the big parade!!” Mom said, “Oh my God!! I’m 76? Then the boys are 86!!” laughing!! She likes to joke.
Lenny, Dad and Terry came next and visited, followed by Anthony, Con, Anthony Michael, Sammy, John, Jean, Claudia and Ava. We all reserved one of the recreation rooms and ate dinner together. As we packed up for the day, mom became sad. She said she didn't want to be a problem for anyone and that she worried about how she and dad would make out at home alone. Dad is just so tender with her....it makes me cry to watch them in action...when he helps her stand or anything, he is just so tender..."Come on my girl, you can do this. We can do this together. Come on." They are just such a blessing. What an example of love to us all. Before everyone left to go home, we gave mom a group hug!
I stayed to put mom to bed tonight. We snuggled and watched TV. We prayed together before I left her for the night.
It was a day of laughter, games (Scattergories…), jigsaw puzzles, NOOK Color games, singing…!! We thank you all for your persevering prayer and support over course of these last 17 months. Before we ate dinner, we held hands and prayed and gave thanks for yet another year all together…for all God has done…and for not quitting 5 minutes before the miracle happened.
Happy Thanksgiving with much love to all of you and yours!
“Give thanks to Him who alone does mighty miracles. His faithful love endures forever.” Psalm 136:1-4
Wednesday, November 23, 2011
Mom Update, November 23, 2011, Wednesday
It still looks like mom will come home a week from Friday....Friday, December 2, 2011! 98% sure it will be that day!
Claudia started the day with mom this morning. Claudia and John had a rough night. I woke to a text on my cell phone saying that Jean had been in a car accident. Thankfully, praise God, he is fine. His car was totaled though. Thank God Jean is OK. The other driver confessed to being at fault. The other driver swerved to miss a puddle and hit Jean’s car head on. Right now, as I write this, Jean and Claudia and John are in the emergency room getting Jean’s knee x-rayed as per the chiropractor. Please say a prayer for them. Thanks.
Mom needed to use the bathroom. It took sooo long to get help. Breakfast time is hectic with only a few CNAs to hand out all the trays. Finally, 2 of the nurses saw what was going on and helped mom---so nice!
Mom’s friend, Helen, called mom yesterday. Mom was thrilled and surprised. She hasn’t talked to mom in over a year. They had a nice conversation.
Anthony and Con came to see mom this morning too. Mom was watching TV with the table in front of her. They talked to mom and she couldn’t hear them because Claudia forgot to put her hearing aids in. They hung out, talked, read magazines, and then mom had lunch.
Dad came around noon just before lunch. After lunch, dad and the OT worked with mom in the bathroom. Dad helped mom alone in the bathroom and they did really well together (3 times). Dad practices telling mom what to do---to stand, where to place her feet on the floor, how to turn, sit… They did PT in the hallway. Dad said that mom stood at the rail on the wall in the hallway 5 times to a count of 30. Dad said that the physician’s assistant put a “patch” on mom’s neck to dry up the excess secretions she has. The secretions prevent the stoma from healing.
Dad said that, when mom gets home, he is going to bring her for allergy testing again. She used to get allergy shots. Dad and Terry transferred all the contents of mom and dad’s closets from one to the other last night so that mom’s things will be in one room where the beds are, close to her.
Mom read all the signs on the wall after dad left. She asked me with tears in her eyes, “I wonder if dad still likes me or not? I mean I don’t have any make up on or anything.” She cried. I reassured her that dad wouldn’t come sit with her each day if he didn’t love her anymore. Mom then cheered up and teased and said she doesn’t want anyone to come see her without make up on anymore.
I had mom write in her journal. She resisted but wrote:
“Wednesday Nv 23, 2011
Kathy is very mean to me because sHe won’t let me do anything i want to do. I wat (want) to do. I want to sit and watch TV and eat special snacks BUT Kathy wants to work and Kathy wants me to write Kathy is a pest. Kath Anthony and Con came to see me today Kathy came Later, DaD came all afternoon.”
Mom was very fidgety and said she can’t sit still. She said, “It must be my medication.” I told her she doesn’t take any. She was surprised. She said it is from boredom!!
Mom studied the pictures on the closet door. She told me that she wants a new picture of Terry and then she said that, when she dies, she wants all the pictures at her funeral. She is too much!
I told mom that we should do some work and she said, “NO! I want to sit here and just fidget all night” and teased me and laughed. The CNA came to put her to bed next. There was no one available to assist so the nurse came to help. They don’t use the walker and they tell mom to stand but they just lift her manually and give her no time to stand on her own. Very few people follow directions. It is such a hopeless cause. We all work so hard to help mom and some of the people just ignore what is correct to do for mom.
The CNA had mom hanging upside-down in the bed. Her legs and feet were elevated and her head was down lower than on a flat bed. Mom was complaining that she was getting dizzy so I asked the aide to move the head of bed up but I was ignored, all while mom complained of being dizzy. The aide finally said, “Oh really? I didn’t know she was upside down.” So I said, “Stand at the end of the bed and look and you can see what I am talking about.” The aide ignored me. I finally used the remote on the bed to lift mom’s head up. Then, when I turned around, mom began to complain again. When I turned to look at mom, I saw that the aide now had one pillow covering the side of mom’s face, while the other pillow covered the top of her head. The aide was kind in her words and affect (not like the other night---it was the same aide I had a problem with), but the aide was ignoring mom. Unbelievable.
Once mom was in bed comfortably, Lenny came to see her. She was thrilled!!! He sat and talked to her and they reminisced about when he was little. Lenny told mom that she will be home soon and mom said, “Oh! I’m getting paroled finally?!!” They laughed.
Mom kept telling us to go home. Lenny and I tucked mom in and prayed with her and anointed her with oil and left.
“Oh Lord, I will honor and praise your name, for you are my God. You do such wonderful things! You planned them long ago, and now you have accomplished them.” Isaiah 25:1
Claudia started the day with mom this morning. Claudia and John had a rough night. I woke to a text on my cell phone saying that Jean had been in a car accident. Thankfully, praise God, he is fine. His car was totaled though. Thank God Jean is OK. The other driver confessed to being at fault. The other driver swerved to miss a puddle and hit Jean’s car head on. Right now, as I write this, Jean and Claudia and John are in the emergency room getting Jean’s knee x-rayed as per the chiropractor. Please say a prayer for them. Thanks.
Mom needed to use the bathroom. It took sooo long to get help. Breakfast time is hectic with only a few CNAs to hand out all the trays. Finally, 2 of the nurses saw what was going on and helped mom---so nice!
Mom’s friend, Helen, called mom yesterday. Mom was thrilled and surprised. She hasn’t talked to mom in over a year. They had a nice conversation.
Anthony and Con came to see mom this morning too. Mom was watching TV with the table in front of her. They talked to mom and she couldn’t hear them because Claudia forgot to put her hearing aids in. They hung out, talked, read magazines, and then mom had lunch.
Dad came around noon just before lunch. After lunch, dad and the OT worked with mom in the bathroom. Dad helped mom alone in the bathroom and they did really well together (3 times). Dad practices telling mom what to do---to stand, where to place her feet on the floor, how to turn, sit… They did PT in the hallway. Dad said that mom stood at the rail on the wall in the hallway 5 times to a count of 30. Dad said that the physician’s assistant put a “patch” on mom’s neck to dry up the excess secretions she has. The secretions prevent the stoma from healing.
Dad said that, when mom gets home, he is going to bring her for allergy testing again. She used to get allergy shots. Dad and Terry transferred all the contents of mom and dad’s closets from one to the other last night so that mom’s things will be in one room where the beds are, close to her.
Mom read all the signs on the wall after dad left. She asked me with tears in her eyes, “I wonder if dad still likes me or not? I mean I don’t have any make up on or anything.” She cried. I reassured her that dad wouldn’t come sit with her each day if he didn’t love her anymore. Mom then cheered up and teased and said she doesn’t want anyone to come see her without make up on anymore.
I had mom write in her journal. She resisted but wrote:
“Wednesday Nv 23, 2011
Kathy is very mean to me because sHe won’t let me do anything i want to do. I wat (want) to do. I want to sit and watch TV and eat special snacks BUT Kathy wants to work and Kathy wants me to write Kathy is a pest. Kath Anthony and Con came to see me today Kathy came Later, DaD came all afternoon.”
Mom was very fidgety and said she can’t sit still. She said, “It must be my medication.” I told her she doesn’t take any. She was surprised. She said it is from boredom!!
Mom studied the pictures on the closet door. She told me that she wants a new picture of Terry and then she said that, when she dies, she wants all the pictures at her funeral. She is too much!
I told mom that we should do some work and she said, “NO! I want to sit here and just fidget all night” and teased me and laughed. The CNA came to put her to bed next. There was no one available to assist so the nurse came to help. They don’t use the walker and they tell mom to stand but they just lift her manually and give her no time to stand on her own. Very few people follow directions. It is such a hopeless cause. We all work so hard to help mom and some of the people just ignore what is correct to do for mom.
The CNA had mom hanging upside-down in the bed. Her legs and feet were elevated and her head was down lower than on a flat bed. Mom was complaining that she was getting dizzy so I asked the aide to move the head of bed up but I was ignored, all while mom complained of being dizzy. The aide finally said, “Oh really? I didn’t know she was upside down.” So I said, “Stand at the end of the bed and look and you can see what I am talking about.” The aide ignored me. I finally used the remote on the bed to lift mom’s head up. Then, when I turned around, mom began to complain again. When I turned to look at mom, I saw that the aide now had one pillow covering the side of mom’s face, while the other pillow covered the top of her head. The aide was kind in her words and affect (not like the other night---it was the same aide I had a problem with), but the aide was ignoring mom. Unbelievable.
Once mom was in bed comfortably, Lenny came to see her. She was thrilled!!! He sat and talked to her and they reminisced about when he was little. Lenny told mom that she will be home soon and mom said, “Oh! I’m getting paroled finally?!!” They laughed.
Mom kept telling us to go home. Lenny and I tucked mom in and prayed with her and anointed her with oil and left.
“Oh Lord, I will honor and praise your name, for you are my God. You do such wonderful things! You planned them long ago, and now you have accomplished them.” Isaiah 25:1
Tuesday, November 22, 2011
Mom Update, November 22, 2011, Tuesday
Mom’s update November 22, 2011
Last night I didn’t write that Con, Anthony and Sam went to see mom. They said she was ok until she was put in bed and then she cried a lot. They looked at magazines and watched TV. They had a nice visit. They stayed with her until she calmed down.
I had an early meeting this morning so I asked dad to come see mom early and I would just come and set her up and go. So I arrived very early and set mom up. She was in the bathroom so I cleaned her tray with Lysol and stripped her bed and lysoled that too. I took the Lysol and disinfectant wipes into the bathroom when she came out and cleaned the bathroom. She is so close to coming home that I don’t want her to catch anything. Dad came very early so I left for my meeting.
Dad said that PT took mom down to work on weights for her legs for 45mins. today. They said she did well. OT came up to the room and worked with Dad and mom transferring from the bed and the toilet. At one point mom had to go to the bathroom and she was there for a while before someone came to take her off. Dad went intot he bathroom and transferred her to wheelchair all by himself (I am not sure if the OT was there because he knows he can’t do it if he is alone). Dad and mom then sat and watched TV together.
I came to see mom and Kathy and dad were there. Dad left once I came because he was there all day and it was a long day for him. Kathy stayed for a little while before her class and then she had to leave as well. I brought some new life skills worksheets for mom. We did check writing worksheets where she had to write specific information on each check. By the end of the worksheet she was remembering what goes where. I also brought a life skills workbook that has to do with catalogs and mail orders. It has a blank order form with questions on the bottom. I took out a catalog that mom had in her room and we found items and filled in the order form. She did really well. The questions had to do with the title of the catalog, what items does it sell, and how many pages are in the catalog. Dinner came next and mom ate a pot pie and some pears.
After dinner mom kept looking at the catalog and pointing out things she would buy for the grandchildren. We watched TV and just relaxed. The CNA’s came to put mom to bed and I stayed with her a while. We said a prayer and I kissed her goodnight.
***VIP – The Social Worker called from the facility to say they are looking at next Thursday or Friday for her to be discharged!!! Pray all goes well. Everyone is welcome to come to the facility the day she is released.
Peace and Be Well,
~Claud
Last night I didn’t write that Con, Anthony and Sam went to see mom. They said she was ok until she was put in bed and then she cried a lot. They looked at magazines and watched TV. They had a nice visit. They stayed with her until she calmed down.
I had an early meeting this morning so I asked dad to come see mom early and I would just come and set her up and go. So I arrived very early and set mom up. She was in the bathroom so I cleaned her tray with Lysol and stripped her bed and lysoled that too. I took the Lysol and disinfectant wipes into the bathroom when she came out and cleaned the bathroom. She is so close to coming home that I don’t want her to catch anything. Dad came very early so I left for my meeting.
Dad said that PT took mom down to work on weights for her legs for 45mins. today. They said she did well. OT came up to the room and worked with Dad and mom transferring from the bed and the toilet. At one point mom had to go to the bathroom and she was there for a while before someone came to take her off. Dad went intot he bathroom and transferred her to wheelchair all by himself (I am not sure if the OT was there because he knows he can’t do it if he is alone). Dad and mom then sat and watched TV together.
I came to see mom and Kathy and dad were there. Dad left once I came because he was there all day and it was a long day for him. Kathy stayed for a little while before her class and then she had to leave as well. I brought some new life skills worksheets for mom. We did check writing worksheets where she had to write specific information on each check. By the end of the worksheet she was remembering what goes where. I also brought a life skills workbook that has to do with catalogs and mail orders. It has a blank order form with questions on the bottom. I took out a catalog that mom had in her room and we found items and filled in the order form. She did really well. The questions had to do with the title of the catalog, what items does it sell, and how many pages are in the catalog. Dinner came next and mom ate a pot pie and some pears.
After dinner mom kept looking at the catalog and pointing out things she would buy for the grandchildren. We watched TV and just relaxed. The CNA’s came to put mom to bed and I stayed with her a while. We said a prayer and I kissed her goodnight.
***VIP – The Social Worker called from the facility to say they are looking at next Thursday or Friday for her to be discharged!!! Pray all goes well. Everyone is welcome to come to the facility the day she is released.
Peace and Be Well,
~Claud
Mom Update, November 21, 2 011, Monday
Mom’s update November 21, 2011
I started the day with mom and she was in bed crying. We didn’t have a great morning. It was very difficult. I asked mom what was the matter but she couldn’t tell me. I fixed her in the bed and put her hearing aids in. I tried to calm her and assure her that all will be ok and that she is so close to going home. She kept apologizing for crying and I told her it was ok and that she should let it all out. All of a sudden she started to cry even harder and said she needed to go to the bathroom. I saw the CNA but knew that during breakfast they rarely take you to the bathroom because mom needs two people. The CNA said she would get a bedpan and mom started to wail! The CNA asked her what was wrong and she said she didn’t want the bedpan. She wanted to go to the bathroom. The aid this morning was so compassionate. She said no problem and found someone to help her. They took mom to the bathroom and then her breakfast came. I fixed her cereal (add non-sweetened applesauce, cinnamon and fiber one). I went to get her ice water and then fixed her tray. It took mom a while before she was out. I just held her and rubbed her back and said it was ok to cry. I had to go to work so I barely had time to help her eat. I had her eat her scrambled eggs first so I could get rid of the tray. I then left her with her cereal and juice. I placed some magazines on her tray, the phone and a box of tissues and put a clean shirt on the bed (her shirt was a mess because the CNA tried to rush and brushed her teeth when she was in the bathroom – it was nice of her to take her, I’m not complaining). She also made a mess with breakfast because we were rushing as well. I gave her a kiss and left for the day. I called my brother who usually goes next to tell him what happened. I didn’t want him to come and see her shirt a mess, still eating breakfast, with a bib still on.
Anthony came next. She was crying a lot today with Anthony too. She wanted to go for a walk so she wouldn’t disturb her roommate. He took her to the end of the hall where the windows are so he could distract her. She expressed to Anthony that she is afraid to go home. She has conflicting emotions. She feels bad that she won’t be able to clean her house, but she doesn’t want anyone in her house cleaning it. She is feeling that she isn’t getting better and is afraid she won’t be able to walk around her house. I guess she can’t wrap her head around what life will be like when she is home. Dad came while Anthony was there.
~Claud
Mom’s 2 friends, Florence and Maureen, came to see her today. Dad said they all had a great visit. They brought mom a “turkey” bouquet!! So adorable!
Dad and the OT (Occupational Therapist) worked on helping mom in the bathroom again. Dad did the whole thing alone again with a minor mistakewhich he corrected without a problem. Mom stood 4 times to a count of 30 at the hallway rail as well. No walking today.
Dad said that another nurse from the Department of Social Services came today to review what services mom will need at home. The nurse said that mom will receive physical therapy, occupational therapy, and speech therapy to help raise her volume and work on cognition. Mom will also get visits from a nurse at home as well. The nurse said that the physical therapist at the facility now will provide a list of the equipment and supplies mom needs at home (like the hospital bed…). Medicaid pays for the nurse, aide and supplies/equipment. Medicare pays for the services. There is an initial 60 day window for services. After 60 days, according to mom’s progress, mom gets to either continue therapies or they are dismissed (if mom plateaus). There are other insurances that can cover other therapies both in and out of the home as well.
Mom, dad and I took a walk to visit 2 nurses in the old vent wing who haven’t seen mom for a while (months!!). I saw them when I arrived today and promised them a visit. The nurses said mom should go home in a limo and we just may do that!! Mom also had a looonnnggg talk with the Recreation Therapist who worked so much with mom downstairs in the old wing. The therapist and mom both cried over missing each other after mom goes home. Mom thanked the therapist over and over (other nurses watching began to cry too). Mom is a miracle.
Unfortunately, we had an incident with at least one of the new CNAs with mom. Two aides brought mom to the bathroom this afternoon while I was there. When mom was wheeled out of the bathroom, she looked a bit shaken and she began to cry. I asked her what was wrong and she said, “Help me, please help me.” She was practically on the edge of the wheelchair and so I mentioned it to the aide who responded in a “huffy” tone, “Well you have too many pillows behind her.” Wrong answer. I remained kind but firm and smiled and said, “Yes, but they are always there. Let’s try to fix mom because she looks like she could slide off the chair.” The aide remained nasty. Mom, Dad and I went for the walk then and mom cried again. When I asked her what was wrong, mom said, “That person was sooo mean to me…..” and sobbed harder. I asked who and mom told me. I asked what the aide did that was mean and mom said, “The aide was sooo rough with me!!!” and sobbed more. When we got back upstairs, I told one of the nice nurses and the nurse addressed it with the aide. The aide had a poor attitude. The aide came to take mom to be weighed and mom looked upset. I addressed the issue with the aide---nicely but firmly---and the aide pretended to be unaware of a problem and confused but nasty still. The aide left the room. Mom had to use the bathroom and began to fidget. I asked her why she was fidgeting and she said she had to “go to the bathroom.” I said I would call the aides and mom said, “NO! I’ll just go in the diaper” and did so. Mom hasn’t done this during the day in months! Mom was afraid or uncomfortable to be with the aide in the bathroom. I found the aide in the hallway and told the aide that mom needed to be changed whenever there was a chance. The aide was nasty. I told the aide that whatever the problem was in the bathroom before, it disturbed mom and made her feel uncomfortable. The aide was nasty and said, “Well, I didn’t do anything different with her. Look, your mother is a big woman and very heavy and she doesn’t stand at all. She can’t stand up.” I told the aide that was no reason to be rough and that mom CAN indeed stand up. The aide said, “Well, not for me she doesn’t” I told the aide it could be the affect that is making mom nervous and that all it takes is kindness, patience, and love to get mom to do what she needs to do. The aide said, “I always treat my patients that way. Look, would you rather she gets hurt when she falls down?” I reported the aide to another nurse and left a message with the night nursing supervisor as well. I told them all that we are no longer comfortable with this person helping mom and that mom is not comfortable either. I plan to make a surprise visit later tonight before the aide leaves for home to make sure mom is OK. This is the last thing we need a week before mom leaves!!!
~Kathy
Peace and Be Well
I started the day with mom and she was in bed crying. We didn’t have a great morning. It was very difficult. I asked mom what was the matter but she couldn’t tell me. I fixed her in the bed and put her hearing aids in. I tried to calm her and assure her that all will be ok and that she is so close to going home. She kept apologizing for crying and I told her it was ok and that she should let it all out. All of a sudden she started to cry even harder and said she needed to go to the bathroom. I saw the CNA but knew that during breakfast they rarely take you to the bathroom because mom needs two people. The CNA said she would get a bedpan and mom started to wail! The CNA asked her what was wrong and she said she didn’t want the bedpan. She wanted to go to the bathroom. The aid this morning was so compassionate. She said no problem and found someone to help her. They took mom to the bathroom and then her breakfast came. I fixed her cereal (add non-sweetened applesauce, cinnamon and fiber one). I went to get her ice water and then fixed her tray. It took mom a while before she was out. I just held her and rubbed her back and said it was ok to cry. I had to go to work so I barely had time to help her eat. I had her eat her scrambled eggs first so I could get rid of the tray. I then left her with her cereal and juice. I placed some magazines on her tray, the phone and a box of tissues and put a clean shirt on the bed (her shirt was a mess because the CNA tried to rush and brushed her teeth when she was in the bathroom – it was nice of her to take her, I’m not complaining). She also made a mess with breakfast because we were rushing as well. I gave her a kiss and left for the day. I called my brother who usually goes next to tell him what happened. I didn’t want him to come and see her shirt a mess, still eating breakfast, with a bib still on.
Anthony came next. She was crying a lot today with Anthony too. She wanted to go for a walk so she wouldn’t disturb her roommate. He took her to the end of the hall where the windows are so he could distract her. She expressed to Anthony that she is afraid to go home. She has conflicting emotions. She feels bad that she won’t be able to clean her house, but she doesn’t want anyone in her house cleaning it. She is feeling that she isn’t getting better and is afraid she won’t be able to walk around her house. I guess she can’t wrap her head around what life will be like when she is home. Dad came while Anthony was there.
~Claud
Mom’s 2 friends, Florence and Maureen, came to see her today. Dad said they all had a great visit. They brought mom a “turkey” bouquet!! So adorable!
Dad and the OT (Occupational Therapist) worked on helping mom in the bathroom again. Dad did the whole thing alone again with a minor mistakewhich he corrected without a problem. Mom stood 4 times to a count of 30 at the hallway rail as well. No walking today.
Dad said that another nurse from the Department of Social Services came today to review what services mom will need at home. The nurse said that mom will receive physical therapy, occupational therapy, and speech therapy to help raise her volume and work on cognition. Mom will also get visits from a nurse at home as well. The nurse said that the physical therapist at the facility now will provide a list of the equipment and supplies mom needs at home (like the hospital bed…). Medicaid pays for the nurse, aide and supplies/equipment. Medicare pays for the services. There is an initial 60 day window for services. After 60 days, according to mom’s progress, mom gets to either continue therapies or they are dismissed (if mom plateaus). There are other insurances that can cover other therapies both in and out of the home as well.
Mom, dad and I took a walk to visit 2 nurses in the old vent wing who haven’t seen mom for a while (months!!). I saw them when I arrived today and promised them a visit. The nurses said mom should go home in a limo and we just may do that!! Mom also had a looonnnggg talk with the Recreation Therapist who worked so much with mom downstairs in the old wing. The therapist and mom both cried over missing each other after mom goes home. Mom thanked the therapist over and over (other nurses watching began to cry too). Mom is a miracle.
Unfortunately, we had an incident with at least one of the new CNAs with mom. Two aides brought mom to the bathroom this afternoon while I was there. When mom was wheeled out of the bathroom, she looked a bit shaken and she began to cry. I asked her what was wrong and she said, “Help me, please help me.” She was practically on the edge of the wheelchair and so I mentioned it to the aide who responded in a “huffy” tone, “Well you have too many pillows behind her.” Wrong answer. I remained kind but firm and smiled and said, “Yes, but they are always there. Let’s try to fix mom because she looks like she could slide off the chair.” The aide remained nasty. Mom, Dad and I went for the walk then and mom cried again. When I asked her what was wrong, mom said, “That person was sooo mean to me…..” and sobbed harder. I asked who and mom told me. I asked what the aide did that was mean and mom said, “The aide was sooo rough with me!!!” and sobbed more. When we got back upstairs, I told one of the nice nurses and the nurse addressed it with the aide. The aide had a poor attitude. The aide came to take mom to be weighed and mom looked upset. I addressed the issue with the aide---nicely but firmly---and the aide pretended to be unaware of a problem and confused but nasty still. The aide left the room. Mom had to use the bathroom and began to fidget. I asked her why she was fidgeting and she said she had to “go to the bathroom.” I said I would call the aides and mom said, “NO! I’ll just go in the diaper” and did so. Mom hasn’t done this during the day in months! Mom was afraid or uncomfortable to be with the aide in the bathroom. I found the aide in the hallway and told the aide that mom needed to be changed whenever there was a chance. The aide was nasty. I told the aide that whatever the problem was in the bathroom before, it disturbed mom and made her feel uncomfortable. The aide was nasty and said, “Well, I didn’t do anything different with her. Look, your mother is a big woman and very heavy and she doesn’t stand at all. She can’t stand up.” I told the aide that was no reason to be rough and that mom CAN indeed stand up. The aide said, “Well, not for me she doesn’t” I told the aide it could be the affect that is making mom nervous and that all it takes is kindness, patience, and love to get mom to do what she needs to do. The aide said, “I always treat my patients that way. Look, would you rather she gets hurt when she falls down?” I reported the aide to another nurse and left a message with the night nursing supervisor as well. I told them all that we are no longer comfortable with this person helping mom and that mom is not comfortable either. I plan to make a surprise visit later tonight before the aide leaves for home to make sure mom is OK. This is the last thing we need a week before mom leaves!!!
~Kathy
Peace and Be Well
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