Mom Update, Christmas Message, December 20, 2012, Thursday

I hope this message finds you and yours well. As you may know, Mom came home a year ago on December 2. Since then, we have had an amazing year with her, one that families seldom get the chance to share together. We all went to parks, the beach, upstate for 2 different weekends in her trailer and to see Jean in a show in Cohoes. We had a tea party—hats and all—in her back yard last spring. We have been to movies, restaurants, malls, diners, shopping, bowling, and visiting… What a glorious year it has been!
However, as many of you know, Mom had another major stroke the Sunday after Thanksgiving. She became very disoriented and confused that Sunday morning when she first woke---didn't know any of our names or where she was. Terry and dad found her this way and called Claudia. Claudia and John called the ambulance and mom was brought to the hospital.
We all arrived there together to be with her. Once we arrived there, she was starting to improve a bit...spoke in understandable words (but slurred) maybe 15-20% of the time, began to move her right arm and leg...but then regressed back to jumbled speech and no movement and then progressed back to moving and talking somewhat understandably again. She was even able to read! She spent a week and a half in the hospital and was then moved to a rehabilitation facility. At first, we had decided to take her home directly from the hospital, but when a really top-notch rehab facility offered to work with her, dad decided to give it a try there first.
She was only at the facility 24 hours when she was rushed to the hospital with respiratory distress and congestive heart failure. It was the longest life of our lives sitting there in the hospital with her; we really thought we would lose her that night because things were so touch and go. Yet, the next day, when I saw her, she was awake and alert!
She spent the next week in the new hospital and was then ready to be discharged. Since she had been through so much and really seemed to be much worse than before (and the hospital wrote her off as “not eligible for rehabilitation”), we thought she would best be cared for in a facility close to home that is run by the sisters/ nuns of the college Claudia and I work at. It is a serene place…a quiet, peaceful place, full of love. We resigned to this situation and prepared to work with her there ourselves once she arrived. However….at the ninth hour, her paperwork was changed to say (quite miraculously) that she WAS eligible for rehabilitation, so the wonderful rehabilitation facility she had been at took her back!!
She works VERY hard at this new facility…about 1 ½ to 2 hours of therapy (speech and physical therapy) per day. They work diligently and really hard with her to help her rehabilitate!! They even bring her to the gym every day and work with her there!! We try to work on speech with her using the IPAD and several apps and programs that can help her to learn the English language again whenever she is not too tired to do so. She is still building her strength – both physically AND mentally. We notice that, when she is overtired, she becomes very much like a small child in that she gets overstimulated and it is as though her brain goes into, what I call, “TILT” mode. She begins to get agitated easily and also to just recite random chains of letters (not words). She cries a lot at these times and wants dad badly (we send him home when we arrive later in the day since he spends the day with her every day). She moans and cries and recites random letters and sleeps for 5-6 seconds at a time before she finally truly konks out and sleeps soundly for 20-30 minutes or for the night.
Here is her current status: She used to be weak on the left side only but now is weak on both sides. She can now use her left side better than the right. She is starting to be able to lift her right arm and leg on command (this is important for therapy to continue). We continue to help her try to make connections between the mind and the body by telling her to think and say things like, “Move my right arm/leg…” as she does it independently or as we do it for her. She used to be able to speak and be conversational but now her speech is predominantly jarbled (but phonetic sounds or random recitations of letters), or clear especially at times of emotion and passion. She is eating pureed food for now because she is working on swallowing better.

She is largely frustrated when we, the kids and grandkids, visit with her---missing her time with dad. She fights us when we try to get her to eat---brings back memories of our kids when they were toddlers. She enjoys having Jean sing to her---show tunes and hymns…and even tries to sing with him. But she is most content when she is with the love of her life, dad, holding hands and watching TV or napping or talking (he to her—she listens).
As Claudia wrote in our blog: “Who is the first person I meet at the rehabilitation center but the head nurse who came to check mom in. She started to ask questions and I told her the story...the whole story. She looked at me and said, "I did the same thing with my mother." I couldn't believe it. She took out her phone to show me a picture of her mom in a hospital bed on a vent with her head bandaged. She told me her family also rehabilitated her mom from a brain tumor...four times! She had four brain surgeries and each time brought her back. She then showed me a picture of her mom in a party dress with her three daughters. They taught her to walk and talk again never leaving her side. Sometimes we think we know what is best for us, or our loved ones and it isn't what is best. God knows what is best and he will put the people in your life to help make all things possible.

Some have said this is such an usual, tragedy and one that can’t be explained. People question God and His intentions and wonder why this would happen to mom after the year of recovery she had and all the work we put into that recovery. But in reality, we all have a life to live and time to leave this earth. No one knows the day or the time of that personal departure. All that counts in life is that we make the most of every MOMENT and that we make sure we are in covenant with God so that we know where we are going when it IS our time to leave here. God is just and kind. He has been to our mom and us, that’s for sure, because we have been so blessed to be with each other in such a deep and special way for this past year…maybe even these past 2 ½ years. Mom has had the blessing of being in the midst of soooo much support and love from family and friends these last 2 ½ years---something that not too many of us get the chance to experience while here on earth. And we, her family, have had the blessing of enjoying her so much these last 2 ½ years!!!! Sooooo much!!! She could have died suddenly 2 ½ years ago, but she didn’t. God gave us the best 2 ½ years. The very best. He is in control and He is good. I thank Him each day that He is in my life and there for us.
We thank you all from the bottom of our hearts for the prayer you offer up for us each day. We keep you all in our prayers each day as well. We all wish all of you and your families the best, (and as we learned to pray each day as children) most “happy, healthy, and holy” season of joy.

Mom Update, December 12, 2012, Wednesday

Hi,
Just had to share a story... Mom was in the hospital as of this evening and she was being discharged. My husband and I looked at two facilities yesterday, a place in Commack and a place in Brentwood. The place in Brentwood was our first pick because we weren't thinking we could truly rehab her twice in a lifetime. We looked at Maria Regina and it was very peaceful and prayerful and thinking she would be there for long term care that's what we wanted, for her to be peaceful BUT God had another idea and the hospital released her as a rehab patient (Which is crazy! due to the fact that she wasn't truly responding to therapy the way we had hoped or the way the PT thought or could justify - just a day earlier we were told that Rehab wasn't an option) Gurwin took her as a rehab patient! And who is the first person I meet at the rehab facility but the head nurse who came to check mom in. She started to ask questions and I told her the story...the whole story. She looked at me and said, "I did the same thing with my mother." I couldn't believe it. She took out her phone to show me a picture of her mom in a hospital bed on a vent with her head bandaged. She told me her family also rehabilitated her mom from a brain tumor...four times! She had four brain surgeries and each time brought her back.She then showed me a picture of her mom in a party dress with her three daughters. They taught her to walk and talk again never leaving her side. Sometimes we think we know what is best for us, or our loved ones and it isn't what is best. God knows what is best and he will put the people in your life to help make all things possible.
BELIEVE AND HAVE FAITH!!!

We are going to try again. If you want to be part of the miracle and have time to spare let us know and you can work with her. Spread the word.

~Claudia

Mom Update, December 6, 2012, Thursday evening

Quick update. When we left mom last night at the hospital, I truly thought I would never see her again this side of heaven. Really. But...when I walked into her room today, I found her sitting in bed, awake, trying to talk to dad. Granted, she didn't look great, her speech was still a bit distorted, but her blood pressure was in the normal range for a while and she was trying to tell us (Dad, Anthony and me) that she wanted some water because her throat was sore (it took a while to figure out what she was saying). She can't drink or eat by mouth yet because this hospital doesn't know her well enough yet to determine if it is safe for her to eat or not---she has to have a swallow test first. Anthony made her laugh a few times and she listened intently to stories he told her for a while.

The doctor (pulmonologist) said that mom had very high blood pressure and congestive heart failure (pulmonary edema I believe he said). But the doctor didn't know "which came first, the chicken or the egg?" I asked what the plan was and he said that they would try to regulate her blood pressure via medication and that she'd be in the hospital maybe 5 days and then back to the rehab facility.

The nuerosurgeon saw her too and said that nothing was wrong with her head as far as he was concerned and that mom presents as a cardio patient. He wanted mom to start stronger blood thinners and felt that was safe.

The doctor (general MD) said he didn't feel comfortable giving mom a stronger blood thinner because of the prior aneurysm. Will keep her on aspirin for now. He ordered an MRI to see more of her brain, which she said still looked swollen from the stroke a week and a half ago. This swollen trauma can attribute for some of the slurred, distorted speech perhaps. We aren't seeing the full picture of mom or her injury yet.

I leaned over to kiss mom and told her I was going to refer to her as my mom the cat because she has 9 lives. She was pretty miserable while I visited today which is sad though. I do know one thing in my heart, she isn't ready to go anywhere yet---she has some unfinished business or so it seems. She keeps saying, "Take me outta here" and the like. Whatever is going on is between mom and God right now. We just get blessed to be with her longer in the process. Unlike last time all this happened, she is here with us....present. Her cognitive abilities are ok this time. She has some physical problems, granted, and her speech is distorted a bit. She speaks clearer when she is passionate and emotional about what she is saying or when she is part of a conversation being lead by someone else (to a degree). She gets distorted when she is the initiator and has an agenda to say. But she is cognitively still present.

By the time I left, she was miserable and crying and frustrated and thirsty and her blood pressure was 98/56.

Claudia, Con and Anthony sang to her this afternoon and tonight. She seemed to enjoy that. Sometimes she tried to sing along (as per Claudia) but mostly she just listened. Jean spent the night with dad last night. It is so awesome to see the "kids" take their places in caring for their 'poppy' and 'nonny.'

I am tired. Thanks for all the prayers....we all can feel the love.

"I wait for the LORD, my soul waits, and in his word I put my hope." Psalm 130:5

Mom Update, December 6, 2012, Thursday morning early

Mom was admitted to the I.C.U. at the Hospital last night at about 1:30 a.m. On Tuesday, mom was transferred from one Hospital to a Skilled Nursing Facility where she was supposed to get rehab. She began rehab yesterday (1/2 hour of PT). Last night, at 9:30 p.m., dad called to say that the facility had rushed mom to the hospital because she was having difficulty breathing and extremely high blood pressure.

When we all arrived at the hospital (except Ava who is away at College), mom's blood pressure was still high. By the time we left the hospital at 1:30 a.m., mom's blood pressure had been dangerously low and still was (107/39) and her breathing was still labored. The doctors checked her for congestive heart failure, pneumonia, and other cardic problems because she presented as a person with cardic symptoms, however, all tests came back fine. Blood gases a little high---borderline range almost---but otherwise all tests came back OK. CAT Scan of head showed no stroke too. Today, she gets a CAT Scan of her chest to rule out a blood clot---they were leaning more toward an abdominal or lung blood clot when we left and were treating her accordingly. She was on oxygen the whole time there. They hope she doesn't need a vent to breathe.

We all were able to see her and before we left, she looked at or tried to speak to many of us. Sammy, my brave, brave girl, and baby of the family, went into the emergency room alone (only could go one at a time) to see Nonny...Sammy said she told Nonny, "Hi Gorgeous" which is a phrase between them both and that mom tried to talk to her. Mom told Claudia, "Take me out of here" before falling out asleep again.

Please pray for God's Will and for strength and peace during this time...especially for dad, who is an absolute mess....thanks.

"May the peace of God that surpasses all understanding, guard your heart and mind..." Philippians 4:7

Mom Update, December 5, 2012, Wednesday

We are at the hospital now. Mom was moved to a rehab facility yesterday but the facility called tonight to say that mom was rushed to the hospital tonight with extremely high blood pressure and labored breathing. Please pray. Thanks.

"We wait for the blessed hope..." Titus 2:13

Mom Update, November 30, 2012, Friday

Quick update. Mom is still in the hospital but was moved to a step-down room (6213 -- her lucky number is 13!) yesterday. She can have visitors 24 hours a day. So now for the nuts and bolts---dare I say she seems better each day? I do dare. I do proclaim, in fact, that she is better each day. Where that will lead, only God knows, but she is better each day. Small increments. Baby or neonatal steps even...but better.
Her speech is still slurred and when she wants to say anything that she is initiating---not part of the context of a current conversation with her---the words are 98% gibberish, not real words. It's funny though because even someone's gibberish between loved ones still has meaning. She still uses the same tones and volume of voice to say affectionate things or to yell at us in frustration even. She and I had a most difficult morning today...she is frustrated and misses dad terribly...she once told me that one of the things she loved most about dad (from before they were married) was that he made her feel so secure. She cries terribly and inconsolably when he is not with her in the hospital (though he spends 9-10 hours there a day).
She ate all her breakfast for me---all of it!!! She sucked thickened (nectar thick) orange juice and milk through a straw (to a count of 5), she ate oatmeal and pudding from a spoon and she chewed and swallowed that tofu looking french toast stuff too! She cried on and off for dad but when breakfast ended, she really became ornery. Calling me names and telling me to, "Shut up!" That phrase comes out loud and clear!! No matter what I did, she was gritting her teeth in anger --- I remember in special education classrooms I'd worked in that the kids act out the most with the person the know can take it and still love them anyway. I guess I am that person to her. Lucky me! The good thing and amazing thing is this: about an hour after she calmed down, she called my name and said, "I'm sorry." Then we told each other we loved each other. The amazing part to this is that she knew what she did and she knew she wanted to apologize...she was so aware. Her memory wasn't this good before.

Mom tries to sing and to count with us when we do her range of motion exercises too. Today she counted in order at one point and out of order at another point. She mentioned numbers in the 90s and 100 (not in order). She tries to sing with me when I sing songs I used to sing with my pre-K kids about the days of the week or the months in a year.
Anthony came and did physical therapy with her while I was there and he makes me cry to watch how skilled he has become in working with mom. He puts many of the physical therapists I've seen work with mom to shame. He got her to move her right foot quite a few times and her fingers on her right hand once. He works the muscles in her shoulder near her neck and almost does a pressure point stimulation down her arm to wake up her muscles again...and it works every time. He does something similar down her leg too. And of course, he gets her laughing so much!!

Dad was able to get mom to imitate sticking out her tongue which is monumental too! Many times! Dad also was able to get her to smile, putting her lips and mouth the same way his was, but not able to show her teeth, though she tried to.
Con and Sammy and Anthony Michael and Gina and Terry and Jean and Claudia all came all day on various days of the week or at night to be with mom. Mom spoke on the phone to Con and Claudia and Aunt Carol today. Actually maintained a conversation---granted, not big sentences, but she managed to say, 'hello' and 'OK' and 'so long' and other phrases in context. Mom also enjoyed a visit from Uncle Mike, her brother too this week.
Claudia, ever the innovator, is already working on ideas on how to help mom communicate. Since neither of her 2 hands work well enough to write, Claudia came up with the idea to teach mom to use a lighted pointer flashlight (it sends a red beam of light) to point to cards or words or phrases in order to communicate. She is also making a social story for mom to use about missing dad.
Though I have made numerous calls to the neurologist at the hospital, he hasn't called me back yet. His receptionist wanted to know what exactly I wanted or could want to talk to him about??? She was surprised I asked to speak to him. Oh brother, some things never change. And one person comes in and says one thing and 2 seconds later someone else comes in and says the exact opposite. It is what it is. Advocacy, advocacy, advocacy.
We are up to finding a facility for mom to go to for rehab. Or, we may opt to take her home for rehab. We aren't sure yet. Please pray for guidance. Thanks so much.
A year ago today, it was a Friday and December 2...but it was this Friday, this day that we took mom back home after being in a facility for 18 months. One of Claudia's students came to the colloquium she and I did on mom's story at the college the other night. After he left, he wrote her this text message. It puts everything in perspective for me... here it is:

"I just finished filling in my wife about tonights lecture/teaching & showing ur web site. Family is our world. I can't describe how much ur story touched us. Ur family is just inspirational for the dedication, sacrifice, & distance u'v gone for ur mother. Honestly, I will NEVER forget tonights lesson. It is easy to see the passion ur sister & u have for teaching as well as helping & caring. My wife is very much the same, but working 10 yrs. at the Flower I didn't c other teachers like that & I think it's sad. They try to make the kid adapt to their way of teaching instead of trying to adapt to the kid/s. I was so sorry to hear about ur mom at the end, she will be in my families prayers. No matter what happens though, because of ur families love & commitment, she lived happier than ever for 2+ more yrs despite what the professionals gave her. In doing so ur story is going to safe countless others, children & elders, that I know."
"Love one another" John 13:34

Mom Update, November 28, 2012, Wednesday

Just a quick update. Found out today that mom actually experienced a major stroke the did damage to the left parietal lobe of the brain (damage to the left parietal lobe can result in what is called "Gerstmann's Syndrome." It includes right-left confusion, difficulty with writing (agraphia) and difficulty with mathematics (acalculia). It can also produce disorders of language (aphasia) and the inability to perceive objects normally (agnosia). The stroke was caused by a large blood clot. We've been in a catch-22 situation with this because mom having had a brain bleed in the past, could not take blood thinners because of a risk of another bleed. Now, she is on aspirin as a blood thinner, a cholesterol drug to prevent plaque build-up and an antacid to counteract stomach problems from the aspirin.
Her blood pressure fluctuates between 150-172 on the top so she may soon need blood pressure medication.
Mom has difficulty swallowing and is not allowed to drink liquids of any kind yet. She does swallow pureed food though...more today than yesterday (10% yesterday and 50% today). She may need a feeding tube again in order to supplement her caloric intake so that her energy level increases.
She continues to either speak actual words but slurred or speak gibberish (non words). She gets speech therapy which focuses on cognitive skills (trying to speak or point to objects...) and swallowing (strengthening the muscles in her neck). Because she can't swallow well, she is beginning to pool the natural fluid from her sinuses of her head in her throat and chest. She is being monitored for signs of infection through blood work.
She is not well enough, awake enough, or active enough to remain in the Hospital's Rehab Center so we will be deciding either on a sub-acute skilled nursing facility for rehabilitation or taking her back home to receive therapy there.
She receives physical therapy in the form of range of motion exercises. She was unable to sit on the side of the bed on her own.
We continue to visit her and work with her when she is awake...singing, talking, counting, playing with the IPAD apps, listening to music, watching TV and doing range of motion exercises with her. She knows us all and sometimes uses our names. She still can say, "I love you" and "I want to go home" among other things. Our mission continues to focus on loving mom as we have all along this ordeal in her life. It's always been about how we can make her life, whatever condition she's in, better through love.

Will keep you all posted. Thanks for all the prayers.
"You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:36

Mom Update, November 25, 2012, Sunday

Hi Everyone,


I hope your Thanksgivings were wonderful. Ours was. However, I am writing with some bad news. Mom had a mini stroke (or strokes) today. Here is her status: She used to be weak on the left side only but now is weak on both sides. She used to be able to speak and be conversational but now her speech is predominantly jarbled and slurred. She became very disoriented and confused when she first woke this morning---didn't know any of our names or where she was. Terry and dad found her this way and called Claudia. Claudia and John called the ambulance and mom was brought to the hospital.
We all arrived there together to be with her. Once we arrived there, she was starting to improve a bit...spoke in understandable words (but slurred) maybe 15-20% of the time, began to move her right arm and leg...but then regressed back to jumbled speech and no movement and then progressed back to moving and talking somewhat understandably again.

Blood work came back good, she had a minor urinary tract infection (not the cause of her condition at all this time), and her CAT Scan came back fine (which means no bleeding, clots, aneurysms...). MRI is planned for tomorrow (tried today but didn't have the exact name and brand of the coil in her head so radiology wanted to be safe and wait---compatibility of machine and coil vary and can result in further injury if not the right match). MRI is expected to show where the stroke occurred, how bad it is, and how many occurred. Then...on to rehabilitation... (as I write this, I realize I didn't ask about the shunt malfunctioning and/or fluid on the brain again). They hydrated mom and this should help her recover more because the neurologist explained that there is a lack of fluid in the body and brain following such an occurrence. The neurologist also said that it is a good sign that her abilities are inconsistent because it means she is progressing and not regressing.
We kept mom active and alert all day...taking turns being with her (only 1 person at a time allowed). My philosophy was that we needed to keep what was functioning well already, functioning; so that what was dysfunctional could 'kick in' and come alive again or so that other parts of the brain could begin to 'kick in' and compensate for permanently damaged areas. We kept her talking (in her own way), counting, playing games, naming items and people...even reading! She did all that midday and into the afternoon. As the day went on, she was tired and agitated and upset and cried a lot about being in the hospital. She was inconsolable.
Mom's receptive language (ability to understand others) is good. It is her expressive language that is lacking (her ability to talk, point, gesture...to communicate). She was able to lift both legs and arms on command for the neurologist when he came. And she was also able to smile (she couldn't do that all day until he came). She couldn't stick out her tongue though. She kept asking (in her jarbled way) why she was in the hospital and what happened to her and when she could go home. She told dad she loved him and was sorry for putting him through all this.

I don't need to ask for prayer because I know you all will pray...but here's a specific list, if I may be so bold to ask... pray (obviously) for mom to heal, for God to hold her in the palm of His Hand, for comfort for dad, and for the strength for all of us to do what we need to do to help her recover (whatever that may be) and to not quit 5 minutes before the next miracle happens.
I won't do a daily email post, just an occasional one to update you. Thanks for the support and prayers.
"Even when I walk through the darkest valley, I will not be afraid, for you are close beside me." Psalm 23:4

Mom Update, September 9, 2012, Sunday

Mom has had an exciting summer.


She went upstate to see Jean in his show and then went to her trailer.

She actually walked up the steps (with help) and into the trailer. She

hadn’t been there since the day she had the aneurysm and stroke. We were

all so emotional. We then went to Uncle Ray’s and Aunt Irene’s 45

wedding anniversary at the Brotherhood Winery. Mom remembered being at

the winery years ago. She did great.Mom has had many day trips over the

summer. She went with Con, Anthony, Dad, Anthony Michael, and Samantha

to Huntington Village and loved the “Olive Oil” store. Weeks later she

has been able to recall these events with minimal prompting.Mom no

longer gets speech, OT or PT. She still gets visits from

our cousin who is still working on speech with mom. Her speech therapist

did give us many worksheets and ideas to do with mom. I bought her a

divided folder with seven sections, one for each day. I placed

worksheets in each section so her home health aide, dad or whoever is

with mom can do work with her. I went to a speech session and she showed

me activities to do with playing cards. She has mom sort them by color

and then tells her to stop and has her sort them by suit. By stopping

her in the middle of an activity she works on switching from one

activity to another. She also has mom sort by red even, red odd, blue

even and blue odd and face cards. This is very challenging, but mom

needs little prompting.Friday night Kathy and I brought “sugar free, fat

free” ice cream to mom and dad (YUM! And taste free too). We sat under

the awning outside mom’s house. We watched TV on my laptop and talked.

Dad said it was a pleasant surprise. Anthony is still working with mom

on walking and if there are two people at the house then mom walks to

and from the bathroom. Mom does her hand and leg exercises every day and

reminds us that she must do them. Mom has complained that she is bored

and her days are long. We are trying to give dad ideas to do with mom.

Today, Samantha, Terry and I (and a friend of ours) took mom bowling. I

called ahead to see if it was handicapped accessible and if they had a

bowling ball ramp. The ramp is made of metal and you place it in front

of a person in a wheelchair and they push the ball. Mom had a good time

watching and participating She kept asking, “What is the purpose of this

game?” I would have her answer her own question and mom would say, “To

knock down the pins? Or to knock down the most pins?” Sometimes mom asks

a question that she already knows the answer to. I asked her what was

her favorite part of bowling and she said, “The pretzel!” That’s mom!



Peace,

Claudia

Mom Update, April 23, 2012, Monday

This past weekend was an active one for mom again. Claudia and I brought her and dad to the movies on Sunday to see a World War II movie. I wasn’t sure if mom still enjoyed these movies or not but she was eager to go. She enjoyed the movie very much. Some of mom’s preferences for food and activities have drastically changed since the stroke which is common with a head injury. As Claudia prepared mom for the movie, mom asked if she’s been to any other movies yet and Claudia said yes, she had been. Claudia then gave her a clue as to which other movie she had seen saying, “Meryl Streep was in it and she played a political woman in England named Margaret….” Mom said, “Oh yes, Margaret Thatcher.” Claudia couldn’t remember the name of the movie, but mom did (The Iron Lady)!!!

 When we have brought her to the movies, we now get special hearing devices for the hearing impaired for her to use (you get them at the ticket counter). Mom loves using these and thanks us every time. The device looks like headphones and there is a small transmitter box attached to it that receives direct transmission from the movie (an auditory trainer of sorts). Since the stroke and aneurysm, mom has trouble filtering out background noise as well as selecting the correct person to focus on in a conversation (it is like an auditory sensory overload). It is also frustrating to see how many places, in 2012, are either not handicapped accessible at all (one of the local movie theaters in her town is not), or how many places think they have a handicapped accessible bathroom and don’t (some are too narrow, like the one we were in yesterday, while others are too small or don’t have the bars at the correct locations on the walls). Out in the parking lot, someone had parked in a ‘non-spot’ that covered the wheelchair ramp! Mom enjoyed the movie a lot though.

On Saturday, Claudia brought mom out to lunch with Claudia’s friends from work. They went to a local diner. Claudia wrote the names of everyone on a napkin, in the order they were sitting, and placed it in front of mom. This fully helped mom remember who was who. Mom knew all the women there and named 2 of the 3. Mom mistook the 3rd woman for a friend of theirs who had passed away. It was amazing that mom made that connection and remembered the friend who was deceased.

Mom has a tendency to ask the same questions over and over and over again, even though she sometimes knows and remembers the answers (I now ask her the question after I have answered it for her 2 or 3 times, and she remembers the answer). On Saturday at the diner, mom engaged in a repetitive theme rather than repetitive questions, which is progress. Instead of repeating the same thing over and over, she engaged in a repetitive theme which was much more socially and linguistically appropriate. She kept saying things like, “I have the best children” and “My kids are great.” She couldn’t remember what she ordered to eat (this is typical of her now) so Claudia wrote the information in a sentence and left it on the table in front of mom. This visual prompt really helped with her recall greatly.

Mom also walked to the bathroom with the walker for Claudia!!! This is big stuff! She usually only walks for Anthony. Anthony told her all about how important it is for her to walk more and for everyone. Mom must be listening!

Later on Saturday, Claudia asked mom if she wanted to go with her for a manicure and mom complained vehemently that she didn’t want to go. So Claudia asked her if she wanted to go to a park and relax and mom said yes. Once they arrived at the park, Claudia rolled mom to the edge of the lake and under some trees where there were some Adirondack chairs. Claudia told mom she was going to transfer her from the wheelchair to the Adirondack chair and mom did it (Mom is now a one person transport!!). As Claudia and mom sat under the warm breeze of the trees (mom under a make-shift blanket), relaxing, watching the water and ready to doze off, mom turned to Claudia and said, “What a beautiful day. Thank you for keeping me alive!”

“We appreciate what you've done in every way and in every place, and we want to thank you very much.” Acts 24:3

Mom Update, April 15, 2012, Sunday

A quick update...

Claudia came up with the great idea to take mom upstate to Cohoes NY to see the play, Sunset Boulevard, which Jean has a role in (he was wonderful, by the way!!!). So....as we now sing since Ava directed the play HONK last spring---"We're offffffff!!! on a wild goose chase!!!" Terry, Dad, Mom, Claudia and I embarked "on a wild goose chase!" The good times did, indeed, roll!

Only Claudia would come up with such an idea as this AND investigate all the details as well. She researched hotels in the area and found one with a fully handicap accessible room and shower and everything! Claudia and dad packed up a huge 'foam wedge' for her head to be inclined in bed, along with metal bed rails, her clothes and extras... and early Saturday morning, we left in 2 vehicles to make the trip. Mom did great!! We are all big on 'books on tape' and Claudia played "Camp Wobegone" in her car with mom and dad. Mom loved it. It took us more than several hours to get there (typically a 3 hour drive, it took us about 5 with some stops along the way). We stopped a few times, but really just to be safe, not so much that mom needed to stop.

We ate out---mom loved it. Mom loved Jean's acting and the show!!! What a professional production....we all are so proud of him. Sunday morning, after breakfast, we decided to surprise mom and bring her to her and dad's property upstate. Mom recognized the towns along the way and was so glad to be at the 'property' and their trailer!! Mom also saw the local Sheriff who she and dad have known for almost 35 years now and he was thrilled to see her and she him!! Mom also saw her dear friend, Pastor Dot as well!!! The reunion was wonderful!

It's funny, because sometimes, mom is so lucid and present, while at other times, she is really far off. One minute while we were upstate, mom was whining like a 3 year old, literally, that she doesn't want a shower and doesn't see the need for one now when she had one yesterday.... and the next minute she was surveying all the equipment we brought with us for her (thanks again to CLaudia---who even continued to make a list of 'things mom needs when she goes away') asking if we remembered to write off all the additional medical costs in items she now needs for her care in her tax return!!! Such is the nature of a head injury.

I am currently reading Jodi Picoult's newest book, Lone Wolf, which is about life support and making the decision to keep a loved one on life support or not. So as mom and I sat in the lobby of the hotel with Claudia, I said, "Mom, before you had the aneurysm burst and the stroke, you had signed papers saying that you never wanted to be on life support or a vent. Do you remember that?" Mom said, "Oh yes, and I WAS on a ventilator for a long time." I then told her that dad and I decided not to abide by her original wishes and to keep her alive and then I asked, "So how do you feel about that now? Do you still feel the same way, that you wouldn't want to be on life support or a vent?" Mom quickly replied, "Oh NO!! Do it, do it!!! I want to live as long as I can!!!" then she giggled and said, "I want to be around a long while so I can be a nuisance to my friends and family longer!!" Claudia then asked, "Mom, what about your quality of life now? Are you happy?" Mom said, "I like that people do things for me now and I don't have to. And I like having my friends and family visit me and stay with me, but that's it, but that's enough. Yes, I'm happy. I want to be with all my friends and family." I thank God that we still have the opportunity to make memories together.

Amen.

"but life is at work in you" 2 Corinthians 4:12

Mom Update, April 13, 2012, Friday

Where to begin??!! It's been a while. I am attaching a video of mom walking with the walker, along with some pictures!! (friends and family can facebook me for pictures and video)

We have all been enjoying mom so much. everyone took mom to Palm Sunday mass and mom sat with the choir and sang with them again!!! Lenny and I were upstate that day but I bet there wasn't a dry eye!! Anthony, Con, Sammy and Ava came to mom's on Good Friday to make Easter bunny bread like mom usually does. They had a great time!

Mom had her stoma surgery and all went well. She is doing outpatient physical, occupational, and soon speech (for memory) therapy 3 times a week for the next 10 weeks at least!! Their goals are to have mom walk independently and consistently with the walker and to have her be able to dress and bath herself.

The aide who comes 6 days a week is wonderful with mom and mom is very comfortable with her. Dad frequently brings mom outside and she watches him while he works in the yard---one day, he even gave her some clippers and had her do some pruning in the flowerbeds!!!

Anthony and Con have her stand at the sink and wash dishes sometimes---to which mom asks, "Hey, wait a minute...whose idea was this?" Anthony continues to consistently work with her teaching her to walk-----he is amazing!!!! She wouldn't be standing or taking steps without him...he does better than the physical therapists who worked with mom!! He is very patient and persistent and he basically thinks about which muscles are used for what positions, he looks at where his feet would be placed for certain activities like walking and standing and then he models for her and teaches her how to stand, walk...it is just beautiful. She responds well to him. Terry and dad are with her the most. Claudia comes a lot too to work on cognitive skills and bath her sometimes. Anthony Michael and Sammy come to visit and sit with mom a lot and Ava, Jean, John and Lenny and I all come when we can. I usually get there once or twice a week.

Dad and mom have settled into a routine. The other day, I went with them to the neurologist (who, by the way, is amazed with her progress each time he sees her) and dad and mom have getting into and out of the car down to a science!!! She holds around his neck and then stands, but before she stands, he reminds her, "Put your arms around me, hon" and then they both break into song, "Put Your Arms Around Me Baby, Hold me Tight!!" Don't get me wrong...there are plenty of frustrating times and days too--but the love and comic relief in between helps!

So, is mom back to normal? Well...the day before Easter, after I went to NJ to pick up Aunt Sophie, mom, Aunt Sophie and I sat at the dining room table to make French Toast Casserole for breakfast the next day. As I broke the 2 dozen eggs into a large mixing bowl one after the other, mom commented, "Oh you're taking a big risk there missy! How do you know one of those eggs isn't bad and then you'd ruin the whole bowlful. You should be cracking them one at a time first into a small cup." She continued to critique my cooking skills the rest of the time!!!

So is she back to normal....? Sometimes, she is amazingly so...probably about 92% there. At other times, she is far from the same. Most of the time, she is there and OK though. She still can't remember that she is home and often talks about going home soon---she thinks she lives in Brooklyn at one or two places she lived as a young child and young adult. She forgets a lot of short term memory things as well. I have noticed that she will frequently ask the same question over and over again....at these times, I answer the question the first 3-4 times and then from then on, I ask her what the answer is and most of the times she remembers with a phonemic prompt or none at all. She still has "no agenda" for the day---wherever you place her in the wheelchair, that's where she is content to be. She doesn't make plans -- not even to go to another room or do an activity. But then again, she is happy (thank God) and content and for the first time in 65 years, her blood pressure is normal!! She doesn't even take any blood pressure meds anymore!!!

I did mom's nails and cut her hair for Easter. She loves to be primped. Claudia showered her and did her hair on Easter Sunday morning.

On Easter Sunday, it was a bit like the book, "Stone Soup" which is a story about some soldiers who come to a strange town hungry and begging for food. Thought the townsfolk said there was none, the soldiers decided to concoct a pot of stone soup---placing 4 large stones into a pot of boiling water. Little by little, each town person came to add "just a little something" to the soup like a carrot, celery....soon they all shared a luscious soup!!! Well, Easter Sunday was like that. Typically, for as long as we all can remember, mom and dad host a HUGE Easter Sunday breakfast for family and friends. Mom makes all kinds of delicacies....but she couldn't do that this year. Dad said we'd have a simple bagel and butter breakfast so that we'd still all be together.... Well....though we all are so busy... Anthony, Con and the kids and Ava came to make the Easter bunny bread, I made Easter Pie (Pizza Rustica), and Stuffed French Toast Casserole, Claudia brought lox and bagels and made a huge quiche, Terry made horseradish and beets and brought fruit, Rie even made mom and grammy's cheese blintzes recipe!!!!... We begin that morning, all together again, as Ava said when she was young, just like "the good old days" and Lenny lead us all in prayer to begin our day...we are so truly blessed indeed.

You have all wisdom and do great and mighty miracles." Jeremiah 32:19

Mom Update, March 6, 2012, Tuesday

Quick update. Mom's surgery went well today. PTL!! The ENT (ear, nose and throat) doctor said that the surgery was a success, mom's voice is a bit louder and stronger already, and she had no problem waking up from the anesthesia. After she was in recovery, they gave her fenitol (a pain killer) even though we told everyone that, due to her head injury and as per her neurologist, no pain meds. They also tried to give her percaset while John was with her in the late afternoon!! Advocacy never ends!! Mom was even begging them not to give the percaset to her and they wouldn't listen to her. Good thing John was there.

An aside: Mom gave me an article the other day about "brain research and Alzheimer's" for me and Claudia to read!! She has been getting so much better lately!! She used to rip out articles for us before all this happened to her.

OK, back to the surgery today. Dad and I brought mom to the hospital. I told her that, today, she wouldn't be a whale anymore because they were closing her "blow hole" in her neck---and that they were sewing on a tail for her so she could be a mermaid instead now!! Mom and Dad can't hear well and the day was funny because of this at times. I said: "Let's make prank phone calls" Mom said, "What? Do I want a hot dog?" The nurse said, "Give a holler" Mom said, "Do I want a pillow?" At one point, mom began to tell a story and so did dad--both at the same time. I sat between the two and neither one knew the other was talking at the same time....I listened to both, responded to both and read and texted as they talked!!! Mom told a story about being a first grader in Brooklyn when her tonsils were removed and how Grammy, her mother, took her to the hospital on a trolley car because mom began to hemorrhage after eating cookies after her surgery! She said she held a huge towel under her chin as they road the trolley!!!

She was anxious. I distracted her by playing "I Love Lucy" episodes on my phone for her. She loved it! We watched, "Vitameatavegemin" "I Am Queen of the Gypsies!" and the one where Lucy locks herself in the trunk and she and Dr. Peterson sing, "Flies in the Buttermilk, Shoo Fly Shoo." She recited poems to me also like "The Owl and the Pussycat" and "Do Ships Have Eyes" and "I Think That I Shall Never See A Poem as Lovely as a Tree." She cried and was anxious on and off though in between.
Do ships have eyes when they go to sea?
Are there springs in the ocean's bed?
Does the Jolly Tar flow from a tree?
Can a river lose its head?

Could you bring relief to a window pane?
Or mend the break of day?
Would you paint a rabbit on a bald man's head,
Just to give him a bit of hare?

If you ate a square meal would the corners hurt?
Can you dig with the Ace of spades?
Would you throw a rope to a drowning lemon,
Just to give a lemon aid?
The surgery took over an hour but she came through fine. Dad and I saw her in the recovery room and she was miserable. She was very sore (mom is highly hypersensitive since the aneurysm...). She was crying a lot and complaining that her throat hurt. The wound on her neck runs horizontal in the front and is about 3 1/2 inches long easily. There is no bandage on the site. She has dissolvable stitches. She sees the ENT next week for a follow-up. Given her history, the ENT wanted her to stay overnight. She will return home tomorrow God Willing.

Terry, Con and Dad visited mom tonight again. Claudia sat by her bedside from 8-10:15 p.m. until mom fell asleep. All in all, it was a great day thank God.

Thanks so much for all the prayers....!!!!!!

"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." Proverbs 3:5-6

Mom Update, March 5, 2012, Monday

Mom’s update March 5th, 2012

On Saturday we took mom grocery shopping. It was the first time she was in a grocery store in almost two years! She was so happy to do such a mundane thing as shop for groceries. Sam came with us and she pushed mom around. Mom couldn’t wait to go down the potato chip isle!!! She picked out a few things and after we shopped we went to Starbucks (it is inside the store). We all had a decaf ice coffee and sat in the café.

On Sunday we went to the movies. We saw “The Artist” and I thought it would be a good choice since mom wouldn’t have to process the language. All in all she had a good time. She sat in the movie seat instead of her wheel chair. She was so excited to sit in the movie chair. During the movie she kept telling dad she couldn’t hear what they were saying and then when dad would try to explain she would say, “I’m only kidding!” and she laughed! After the movie she didn’t really get it. I tried to ask her questions and she had a difficult time remembering the story. I wonder if the language and pictures together help her understand.

Today dad and I had to take mom to the doctor for clearance for her operation tomorrow. Tomorrow she gets her stoma sewed up! Yahoo! She will be able to talk better, blow her nose, cough and hopefully SING! Please pray for her and her quick and safe recovery! Dad had taken mom to the doctor last week and she was supposed to get her clearance done, but something got messed up and the hospital never received the papers, so last minute, dad asked me to go with him. If we didn't receive that call from the hospital the whole procedure would be rescheduled.


Mom has a very difficult time differentiating between her doctor and our pediatrician when we grew up. She is very confused. She keeps asking when did he change his name from (then she says the pediatrician’s name). I took out a piece of paper and drew a picture of both men and wrote all their information down. I tried to show her that they are two different men but she couldn’t wrap her head around it. She kept saying that the pediatrician’s wife use to work at her doctor’s office (the office now), “Here she worked” when she worked at the pediatrician’s office. It was confusing me after a while. She also kept saying, “When did he change his name?” I took a picture of her doctor and I scanned Google for a picture to use for the pediatrician, but when mom saw it she said, “That’s not him!” I may have to use a stick figure. I will write her a social story to see if I can get her to understand they are two different people.

All went well at the doctor and mom’s aide was at the house when we arrived home.

Please pray that all goes well tomorrow. She is scheduled to be at the hospital at 10:15. She is to have nothing to eat from 11pm on. It is going to be a difficult morning for dad.

I will write tomorrow to let everyone know how it went.

Peace and be well.

~Claud

Mom Update, February 24, 2012, Friday

Hello to Everyone!
It's been a while since I have last written an update to you so we thought it was time for one now. So much has happened in the last weeks. Mom went for her kidney stone blasting and all went well. She is still catching up on xrays, MRIs, hearing evaluations etc. Each doctor she visits gives her a clean bill of health! Thank God!
Mom continues to progress. She is more and more aware and lucid and involved with the world each day. When I call her on the phone now, I can't believe that we can actually have a conversation!! I don't get to see her more than twice a week now that she is home since I live and work so far from her, so when I call, she actually teases me!! Once, lately when I called, dad answered the phone and then handed it off to mom saying, "Here, say hello, someone wants to talk to you." Mom replied, "Who wants to talk to me?" in an annoyed tone, so dad said, "It's Kathy." It was then that I heard mom's joking and teasing voice saying, "Oh really? Kathy who??" (emphasis on the 'who')!!! She knew it was me but she joked and said, "I don't know any Kathys!"
For Valentine's Day, Dad gave mom a real surprise....he had her wedding band fixed. When she had the stroke and burst aneurysm, the hospital staff had to cut the ring off her finger. She hasn't worn it in over 19 months. She was sooo thrilled to get it back all in one piece!! She told me all about it on our next phone call. She was so excited.
Once when I recently visited mom, I noticed dad had a small, plastic, white box in his shirt pocket. I asked what it was and he and mom proudly showed me the 'set-up' they had created: In front of mom, on the table, was a small box with a doorbell on it. Whenever dad leaves the room, he can't hear mom calling him, so now, mom presses the doorbell on the table and it rings in the box in dad's pocket so he can hear her!!
Anthony continues to work really hard and well with mom on physical therapy. He has her walking with the walker at least 25 feet each time he works with her. Anthony is just as good, if not better than, any certified physical therapist. He has a natural knack for understanding how each muscle works with the other and for explaining in basic verbal and visual terms how to move. Mom relates so well to him. Dad follows behind mom with the wheelchair as Anthony kneels on the floor in front of mom helping her to move the walker forward at times and verbally prompting her to walk.
The other day, Anthony started to have mom practice walking outside! She loved it. He also took mom to the kitchen sink and had her stand at the sink and wash a cup, bowl, plate, knife, fork and spoon!!!! He said he remembered the facility OT doing things like this with mom so he thought it was time to expand her program. Mom stood there, at the sink, washing and said, "Hey....who's idea was this anyway?" I guess she is afraid that the work will soon begin!!!
Claudia and Dad took mom to "Uncle Guiseppe's" food store and she loved it!! We also took mom to the movies last Monday to see "The Iron Lady" with John, Anthony Michael, Claudia, me and Dad. She was thrilled to go!! Mom, Dad, Aunt Carol, Nancy and I used to go to the movies at least once a week.
Claudia brought mom to Applebees yesterday with Claudia's friends from work. Claudia said mom was quiet and observing alot around her. Mom remembered some of the people too! She talked a bit with everyone but mostly sat and 'people watched' and took it all in.
Mom recognizes all the landmarks along the way to her various destinations too. She comments on places, landmarks, where people live, what's on the way there etc. She frequently asks questions for validation as well.
The other day, Jean and Claudia and John brought mom outside at mom and dad's house and played baseball with her!!! She used a whiffle ball and bat and Jean said that she made many connections and hit the ball!!
All in all, it is great to have mom home. Her weekly, Monday through Friday, aide is now consistently the same person for a few months now. The weekend aide now varies. Dad and mom seem to be in a routine now too. Dad runs errands and gets out to have breakfast with his buddies a few times a week. He also goes to church too. Though he is getting a little antsy and stir crazy at times. As I have said before, he likes to gallivant!!
Mom goes to get the stoma in her neck closed (along with the surrounding cartilage) on March 6. This procedure will take 45 minutes to an hour to complete. It should help mom's breathing and speaking ability as well. It will also lower the risk of infections -- airborne and otherwise from open exposure.
We will continue to keep you updated. We continue to keep you and your loved ones in prayer. Thanks for all the prayers. Miracles do happen.
"The deeper your love, the higher it goes; every cloud is a flag to your faithfulness." Psalm 57:10

Mom Update, January 29, 2012 Sunday

Today I started the day with mom. Yesterday her aide never came and dad and I were alone getting her ready for the day. It was great having the aide there today. We got mom ready and she was in a great mood and really sharp today. I bought mom a movement DVD. It has arm movements set to classical music. I put it on and mom, her aide and I moved to the music. I explained to her aide that she should do this every day to keep mom moving. I played a great game with her on her Ipad. She loved it. It was a combination crossword and hidden picture game (two of mom’s favorite things!). First you tapped on the crossword and a clue pops up. You have to figure out the clue and then find the picture of the item in the picture. She loved it. We played four games.

Dad and I had plans to go to BJ wholesale Club today and Terry would stay with mom. When her aide left I told dad that it was so nice out that we should take mom to BJ’s. So we did! We got her ready and put her in the car and took her with us. Mom was so happy to be out. We drove past my house and John came out to say hi. I brought my cat outside (Pacey) to see mom. He is the big mush cat and mom liked seeing him.

Next we drove past Aunt Carol’s house, but she was sick so she waved from the door. We pulled up to BJ’s and put mom in her wheel chair. When we got inside, mom cried. She was so happy to be out in a store. We walked around the store and mom was so happy.

On the way home we stopped at Nathan’s and bought some hot dogs and fries to take home for lunch. Mom called Kathy and told her where she went. She also told her that dad was in Nathans’ and that, “How much ya wanna make a bet her gets the wrong stuff!”

When we were just pulling up to the house, my mom’s friend Flo called and I was in a panic because Flo brings mom the Eucharist on Sunday and we never told her we were taking mom. She was worried and didn’t know where we were. As I was taking mom out of the car, I told mom that Flo was here and she said, “Oh shoot, now I have to share my French fries with her!” She was really on!

We went into the house and mom’s other friend came, Maureen. Maureen was talking about how she was going to now have hot dogs for dinner after smelling the Nathan’s. She a Flo were talking about going to Nathan’s and Maureen said, “Oh I left my debit card at home and I don’t have a lot of cash on me.” Mom said, “For goodness sake, make a contribution and give her a dollar!” We were all cracking up!

~Claud

In the early afternoon today, the phone rang. I answered and was surprised to hear mom's voice!! "Kathy? Guess where I am?!!" she said excitedly. "Where?" I asked. "I'm at BJs!! and I cried when I first went in," she said. Claudia and Dad decided to take mom for a ride today to do some shopping. They drove past Claudia and John's house and John came out with one of their cats to show mom. They also drove past Aunt Carol's house and waved from the door (Aunt Carol has a bad cold). Mom said, "Boy, I'm just sort of really nervous to drive with dad in the car." I laughed and told her we ALL are nervous driving with dad behind the wheel!! hahaha!! Mom then told me that they are going to Nathan's for lunch!! She loves Nathans and she and dad went there often. At one point, Mom lamented that she thinks she will never be able to drive again and began to cry....I found it amazing that she is now aware enough to remember that she once drove and also that she would have liked to continue to drive. Mom's brain injury in the frontal lobe of her brain...where executive functioning takes place. One of the areas of living that this part of the brain controls is the ability to "make plans" of any kind. Mom doesn't make plans since the stroke and aneurysm. And boy...she was definitely a big time "plan maker!!!!" She had lists and lists and lists of things to do surrounding her always. No more. She also doesn't have high blood pressure any more (since she was in her twenties her pressure has been high), so maybe there is something to be said about an inability to plan life compared to just existing in it?!! Mom sounded so normal on the phone. Low volume to her voice, but normal, lucid. I called mom the other day and she hurriedly told me, "Listen, Anthony is here now and we are trying to walk with the walker. I can't talk now." Her ability to be present and with us mentally is truly amazing. When I visited her the other day, she talked and talked and also practiced exercising with a tool that looks like 2 long, thick rubber bands with a black handle on each. Mom uses them to hold on with one hand while pulling and stretching with the other. Claudia bought these for mom. Claudia just texted me as I am writing and said that they are now at Nathans and dad just took their orders and went in to get the food. Mom turned to Claudia and said, "Wanna bet he gets the wrong thing?!!" and laughed. She'sssss bacccccckkkkkk!!!!

"The LORD has done great things for us, and we are filled with joy." Psalm 126:3

Mom Update, January 25, 2012, Wednesday

Hi,


I am trying to add an attachment of a video, hopefully it works.


THis past Sunday was Anthony Michael's 16th birthday. We all celebrated at mom's house and the best gift that Anthony received was that mom walked for him! She stood out of her wheel chair and walked down the hall with her walker. Dad stands behind her (he doesn't touch her, he is there in case she falls) and Anthony stands in front. Mom lifted her feet and walked down the hall!!!


On another note, last night when I went to see mom I noticed that dad's eye was very blood shot (as if a blood vessel had burst). I told him he should go to the eye doctor since he has had a few surgeries on his eyes and has an eye condition.


Today, around 2pm I called dad to see if he went to the doctor. Mom answered the phone. "Hi" she said in a very cheery voice. I said, "Hi, mom?" very confused. She said yes and I asked her how she was and she said, "Oh I'm fine." I asked how her day was and she said, "Oh I'm having a good day, everything is fine." I then asked to speak to dad and mom said, "Oh he's not here, he went to the eye doctor." I then asked her who was with her and she said, "No one is here. I am alone." My heart stopped! I said, "What? You aren't supposed to be alone. THere has to be someone there." She said, "No. Dad went to the eye doctor and no one is here." I told her to put the phone down and yell very loud, "Is anyone here." She did and no one answered so she said, "See, I'm all alone. You kids make such a big deal out of everything. I am fine the aide comes in a little while" I started to panic and said, "Yell dad's name really loud" and she did. No answer! I asked her what she was doing and she said she was in the living room watching TV. I told her to sit still, not get up and I would call her in a few minutes. I then called my mom's friend Flo who lives around the block and asked her if she would come over! I told her what happened and she said she would call from mom's house.


A few minutes passed and the phone rang, it was Flo. My dad was in the bathroom!!!


I was shaking! Dad got on the phone and said he didn't hear the phone ring or mom calling him. Mom had heard that dad had to go to the eye doctor and when dad left the room she assumed he left to go to the doctor!

Just another boring day with mom!!!

The video is too big. I will try tomorrow.


~Claud

Mom Update, January 18, 2012, Wednesday

Over the past 2 1/2 weeks, mom has been a busy lady! Dad and I (and sometimes Claudia meets us) have been bringing mom to many doctor/test appointments. Dad and I also spent the day 2 weeks ago at a Medicaid hearing...we are still fighting this issue...it was quite the experience. People watching there was so intriguing, I kept thinking about what I learned about ethnographic note taking and observation and was tempted to do some there! People of every walk of life were there...young, old....every culture....it was sad to see and sadder still to observe how people are treated here...largely with no dignity or respect ("Mary Smith report to counter 10!!!" is just one example of the announcements over the PA system...what if Mary wanted to remain anonymous??? I guess she doesn't get that option...). There were older people like my dad there, spouses together or one spouse who represents a spouse who is ill, or young men fresh out of prison (those conversations were so sad to overhear....), or young mothers with children and babies (I wondered about how many children are admonished for an absence from school who have teachers who are totally unaware of where and how their students spent their day out of school?). Our issue involves the fact that the paperwork for the Medicaid was filed 1 month too late (dad hired someone to do this for him) and now it appears that dad owes $21,000 to the nursing/rehab facility for that ONE MONTH...yes one month costs $21,000!!! We should be able to win the case though...hopefully...please add that to your prayer list...thanks.

Dad and I (and sometimes Claudia met us there) brought mom for a visit to her general practitioner, pre-op testing, the ENT, a throat cat scan, a chest x-ray, a visit to the neurologist, the pulmunologist, a Cat scan of her head, and a botox appointment for her left hand (that was interesting....it was a combination of acupuncture and botox--the needle for the botox gets strategically placed in mom's lower arm muscle and depending where it hit in the muscle, mom was able to freely move her left hand and uncurl her fingers....so can one conclude that the damage after the stroke was less about the message from the brain to the hand and more about muscle damage???? Interesting). I think that was every appointment....but I could be missing some!! Oh...there was also a "urine sample run" to the hospital pre-op unit since mom couldn't fit in the miniscule "handicapped accessible" bathroom at the unit the day of the pre-op testing!!! Their bathroom was sooooo small that, if the wheelchair fit in, the door couldn't close!!! Dad and I had to put the garbage can in the hallway and squeeze ever so tightly into the room with mom in order to help her!!! The toilet was also almost on the floor!!! It was soooo low!!! Who planned this room and WHO passed it for inspection??? Not someone in a wheelchair who needs support from others! Mom has had a busy 2 weeks...

The pulmunologist is the one from the rehab/nursing facility. At seeing mom, the pulmunologist said, "Oh Dotty, it is soo good to see you. Do you remember me? That's OK if you don't? I remember you and the wonderful family you have. You and your husband must have done something right to have such a family support" (this made mom and dad beam...literally beam...like their lives meant something special and were for good because of how we, their children, act. It brought tears to my eyes to see the proud look on their faces....l can't explain it...I don't write this as an exhortation about us or me but about them. Kids don't think much about the dramatic role we play in our parents' lives....or the difference we make in their lives or the meaning our actions bring to their lives.... I know I am guilty of not recognizing that). The pulmunologist reconfirmed that "there must be a God out there in order to witness this kind of love." What a blessing. How many times do I look at the literal situation before me which isn't always a good one and don't recognize the blessings surrounding it???

Good news!! Mom turned a corner last week and has been more motivated to walk and stand. She seems more alert too...not as loopy. Anthony has been working with mom doing physical therapy and he got her to walk with the walker about 10 feet (according to dad's reports). Dad also works with mom too and he got her to use her legs while in the wheelchair to ambulate about 20 feet in the house!! She stands better with the walker and the bars on the walls too. She is getting there!!! I was getting worried about her state of mind----which by the way, was likely influenced by yet ANOTHER urinary tract infection!!! Jo Ann told us about drinking peppermint tea as a preventative (as per Dr. Oz) so we will try this with mom. Mom is now on an antibiotic for the next 7 days. Mom seems to have had an awakening though overall which is making her more alert, aware, and able to try to do things...visual supports help greatly. Claudia and I made charts and lists and schematics on how to do things like get from a sitting position to a standing position. We plan to make daily activity books for mom as well that describe how to complete activities as well. Without the visuals, mom does not do as well.

Ava did speech with mom and Jean has visited and stayed with mom a lot over the last 2 weeks. Anthony Michael, Sammy, Con and Anthony all see mom regularly too, as do John, Claudia and Terry. Claudia does cognitive work with mom using the Life Skills sheets. I had some time last week, in between all mom's appointments, to work on her cognitive skills and physical therapy too. Mom did great on things like explaining figures of speech (ex: "It really burns me up" Mom: "Gets you very angry" or "She eats like a bird" Mom: "She doesn't really eat a lot" or here's a good one: "People don't trust a person who breaks his word" Mom: "To NEGATE what you said" --- no problems there!!).Some of the work sheets cover things like, reading a sentence or two and selecting the best ending to the sentence from a choice of 3; or finding a better word for an underlined word in a sentence (ex. "The leaves blew around the park" Mom: "Twirled"...). Mom does famously with these word related activities...mom was always into words!! However, I notice a decline in her ability to spell words when she writes and also in her writing ability.Her script is hard to read now...it wasn't when it first came back, and she frequently shifts from writing upper case to lower case to script... in the same sentence and sometimes in the same word! This could be due to the fact that she is still integrating information in a logical, functional fashion---and until all the input is arranged properly in her brain...the input will come out in unrefined pieces. That seems to make sense to me. Mom and I also do motor skill practice as well as cognitive skill practice in the form of games in the various waiting rooms of doctors and tests....

Claudia wrote: January 17, 2012I started the day bright and EARLY (4:30am) to get her ready for her hospital procedure. Mom had her kidney stone blasted. She was in a great mood, although she was nervous. I don’t know how to describe her nervousness other than a normal amount of nerves. Over the past few weeks she has been crying a lot, but today she did great. We (Dad, Terry and I) had her in the car by 5:30 and arrived at the hospital early, where we met Kathy. They took her right in and dad and I stayed with her. She did great transferring from her wheelchair to the hospital “chair” (no stretchers anymore unless you need it). The only
thing she had a great deal of difficulty with was the IV. Her sense of touch is very sensitive. It also took a long time for the nurses to find a vein.

I distracted her with the XM radio on my phone. I played spa music and mom was just getting annoyed telling me “There are no words! What kind of music is this?” I then put on 40’s music and she started to
sing along! The nurses got a kick out of it and kept telling her to sing while they tried to get the IV going.

They took mom for an x-ray and I explained to the technician that she is not mobile and can’t walk but He
didn’t understand to what capacity (Or wasn’t listening). I asked if I could go with her and he was annoyed but let me go. I kept asking if he was going to be able to x-ray her in the chair and he didn’t answer me.
He wheeled her in and said, “OK get up on the table (4’ high table)!!! I asked if it could be lowered and he said, “No, why?” I repeated that she can’t walk or use her legs to ambulate and he said, “Oh, no problem I
have steps she can use!!! (OK, What part of she can’t walk, climb steps or ambulate is he not getting!) All of a sudden he said, “Oh, we have a problem.” He stood for a long time thinking and I suggested we get a
stretcher and lower it all the way down and I could transfer her to the stretcher and we can transfer to the x-ray table. He agreed and back we went into the other room. I transferred her to a stretcher and the
nurses escorted her to the x-ray room.

They kept her on the stretcher and at one point I asked the nurses about a bed sore that I noticed this
morning. They propped her up to alleviate the pressure and told me to call her nursing service when we get home to get it looked at. It was a long wait for them to take her to surgery because it was the first day
with paperless charts in the ambulatory surgery unit. They took her and a little over an hour later we received a call that she was OK.Dad was called in to see her a little while later and she was crying and weepy.

Overall she did great with the anesthesia. She wasn’t loopy at all. Kathy and I went in next to stay with mom and she and I and a nurse changed her. She ate two graham crackers and drank Ginger-Ale and two
glasses of water and before you no it she was being sent home. Dad, Terry, mom and I drove home and Terry and I settled her in on the recliner and had her drink some more (as per the doctor). She was very
alert and just little tired. I couldn’t believe how great she did! I stayed for a while and then left. I returned in the evening to put her to bed. She has a different aide on the weekends because her aide is out
of work helping her daughter recover form surgery. This new aide is worth her weight in gold! She is so pleasant and nice. She is great with mom and works so hard to make her clean and comfortable. I left mom all tucked in for the night and thanked God for a smooth surgery with no
major issues.

Please pray for mom’s bed sore, that it doesn’t get worse.Peace and love,~Claud

Mom sees the urologist in 3 weeks following a cat scan of her kidneys in 2 1/2 weeks to see how the stone blasting went. Dad is supposed to strain her urine---not easy at all on a modified toilet seat (may even be impossible to do) so that the urologist can study the stone fragments (now there's an interesting line of work, huh??? NOT.). Mom goes to get the stoma (hole in her throat closed) on March 6....and the mad pre-op testing dash will begin again in late February....

BUT..........MOM IS HOME.....with us.....among us....and for this, hard as it is at times.......IS THE GREATEST THING!!!!

"Give thanks to the Lord for He is good. His love endures forever." 1 Chronicles 16:34

Mom Update, January 8, 2012, Sunday

"How We Spent Our Winter Vacation" an essay by the family!! hahaha!!!

I'll back track a bit in a little more detail as I begin this post. On the Friday before New Year's Eve, Claudia, dad and I brought mom to the ENT (Ear Nose Throat Doctor). She went there to have the stoma (hole in her neck) checked. I'll talk about the "transportation challenge" first!

Let me say also that it is no easy task to get mom in and out of the car. Up until yesterday, when dad was finally able to buy a new car and get rid of his van, dad had to borrow Anthony and Con's car in order to take mom anywhere. The van was too high up, making the seats also too high up for mom to get onto. Mom barely walks now so she needs to use a car that has seats lower to or near her hip area in order to slide over from the wheelchair to a standing position while holding onto the car door at the point of the open window, and then pivot (with or without, mostly with) assistance. All this happens with a 3 man team, though dad and I or dad and Claudia have been able to accomplish the shift from wheelchair to car and vice versa with just a 2 man team, but it's difficult at best.

With the 3 man team, the passenger car door is opened along with its window. Then, one person stands behind the wheelchair and grabs the top of mom's pants in order to potentially assist in her standing from the chair, this person also has the job of strategically pulling the wheelchair out from under and away from mom when she stands. Mom holds onto the car door through its open window as a support to stand. This happens while another person (person #2) stands to the side of mom or slightly in front of her (usually this is dad or Claudia). This person (#2) positions mom's feet correctly on the pavement in front of her so that she can stand in a balanced and well self-supported manner. Person #2 also then assists mom in supporting her stand position and then helps her to either pivot or swings her into the car on the seat. The 3rd person enters the car from the driver's side and lays across the driver and passenger seats, in order to either grab mom's arm under the armpit or the back of her pants, in order to pull her into the car and onto the passenger side seat better. The person in dad's position now has the job of positioning mom's feet correctly on the driveway before her so that she can grasp the overhead handle and shimmy herself into the car. At this point, the person manning the wheelchair is done in the 3 person team situation. However, in the 2 person team situation, the wheelchair person doubles over to the person who lays across the seat's position.

OK...we're finally in the car!! Back to the ENT (Ear Nose Throat Doctor) appointment for the stoma. The doctor checked mom's ears and irrigated them (put a huge, plastic bib around mom and Claudia held a small bowl under mom's ear while I held her hands and talked to her to distract her as the doctor ran a syringe-like tool that shoots water from it into each of mom's ears). Mom had wax plugs in each ear (literally wax build up that solidified into a plug)---no wonder she had difficulty hearing even with her hearing aids!!

Once the irrigation was done, the doctor examined the stoma. The doctor said, as Claudia said all along, the stoma has NOT closed at all. The doctor appeared shocked at hearing how long mom was on a vent, and said that the stoma would NEVER close on its own. Remember, many other professionals (not ENTs), told us that the stoma WOULD close on its own. The specialist knows best (ENT). The ENT checked out mom's vocal chords and wind pipe and larynx next. To this, mom had to be "scoped." This meant that the doctor (after trying without it first) numbed mom's nostril with a numbing solution on a huge, long cotton ball (that was inserted into her nose). [Aside, mom's nose runs non-stop since she is home. She needs tissues all the time. Claudia and I have made a fun joke of it the way we did when mom kept asking for her 'blue make up bag.' I tell mom I am going to send her to a tissue users support group: OTUA or Over Tissue Users Anonymous and she laughs.] But I said all that to say that mom's nose is HIGHLY sensitive, as are ALL her senses since the shunt went in...so this procedure bothered her greatly.

After the numbing procedure, Claudia stood on one side of mom, and I on the other. Each of us had to hold mom's hands down and talk to her or sing to her to distract her from the 'scoping' which involved having a small, thin tube, with a scope/camera of sorts in it, inserted into mom's numbed nostril and down into her throat so that the ENT could view her larynx, wind pipe and vocal chords. The larynx and vocal chords looked fine--PTL!! But a cat scan was needed in order to view the wind pipe better. The whole procedure took about a minute or under. Mom was like a child --- who wouldn't be?? She gagged and yelled and wiggled to get free while the scoping took place. Luckily, there was an x-ray lab down the hall and we got the cat scan after a short wait....but that was yet another adventure.

For the Cat scan, Claudia and I had to get mom from the wheelchair onto that thin, long board-like table and then hold her tightly to support her as the table was raised for the scan. We had to wear lead vests and continue to hold mom AND to keep her still (remember that she tremors when she is anxious or tired...) while the scan was taken. We reversed the process at the end and succeeded!! Amen. but.....mom needed to use the bathroom......

Another adventure. The bathroom was small (I found out last week that it actually was palatial compared to the pint-sized one at the pre-op center). Mom, the wheelchair, Claudia and I all crammed into the tiny bathroom in order to assist mom. Though most "handicapped accessible" bathrooms have bars on the walls (whoopee---like that alone makes it accessible??!!), the toilets are practically at floor level!!! Who designs these things??!!! How do they pass inspection???!!

ENT wrap up: Mom will go for a surgical procedure to close the stoma and the surrounding area some time in February or early March (we have to space the procedures apart so there is no side effects from the anesthesia). The procedure will last about 45 minutes to an hour in total and will require general anesthesia and a hospital stay overnight just to be safe.

Mom and dad celebrated New Year's Eve together with various visits from our family members throughout the day. The whole family went to our favorite restaurant on New Year's Day for dinner and that was followed by a traditional family ball game in mom and dad's yard!! Depending on the season, a coinciding ball game is played by all family members young and old alike (Dad is the oldest at 79). This time, given the season, we all played FOOTBALL!!! It was a lot of laughs and dad spilled to the ground while running with a pass (he was fine!!) and everyone laughed and laughed!!

On Tuesday of this last week (after New Year's Day), dad and I took mom to her pre-op testing for the lithroscopy (??) or blasting of her kidney stone which is happening on Monday, January 16 at a highly competent but distant (45 minutes away at least) hospital. While driving in the car, mom kept trying to identify the towns we were in and she also read the signs on the road (have you ever seen the movie, "Forget Paris" with Deborah Winger and Billy Crystal???....). Mom recognized some towns and also kept trying to guess which direction we were driving in saying, "Are we going south now?" She was always 180 degrees off in her direction.

Mom did well during the pre-op testing. However, the only mishaps there involved a technician who kept telling me to keep mom perfectly still for the EKG-- ????? and how do I do that?? She tremors......I did my best by holding her head and shoulders still with my hands!! haha!! After an unsuccessful attempt, we tried again, but only to find out that the technician had the wires in the wrong place and had to try a 3rd attempt!! Oh boy....hahaha! The technician also handed me a tiny, lidded, plastic jar and told me to bring mom to the bathroom so that she could give me a urine sample...?????!!!!!! And how do I do that using only a tiny jar??? Picture the possibilities.......!!!!! The technician finally conceded and gave us a tray to hang on the toilet and collect the urine from there. Gee whiz. The bathroom there was miniscule!!!! Dad, mom, the wheelchair and I all crammed into the bathroom together---after I had to remove the garbage pail from the room!!! We barely got the door closed!!! Literally!!

The physical therapist came in the morning on Tuesday before the pre-op testing. Mom did AWESOME!!! She stood practically alone!! She took steps with the walker, and she transferred really smoothly and really alone (with only the walker) from the chair to the wheelchair and back. She side stepped!! She pivoted!! Up until that day, mom had no motivation or ambition to work hard in therapy or with us. It seemed like mom's brain took about 4 weeks to begin to reintegrate itself to the environment of home. Mom always knew where she was, but had difficulty carrying over all the skills she had when she was in the rehab facility. She regressed terribly. This is partially our fault because we aren't keeping up the grueling work we did with her in the rehab facility. Most of us just visit with her now....love on her...hang out with her at home...and we forget that she still needs to work hard in order to improve. We do still work with her---Anthony does physical therapy with her, Claudia and I work on cognition, Jean also comes several times a week to be with mom while dad goes out and Jean works with her too. BUT...mom also tells us she doesn't want to or can't do what we want her to do physically too! She also gets a natural work out getting dressed and using the toilet or getting in and out of bed at home too. We all need to balance and reintegrate the work with the 'hanging out' times now that mom is home. I will write more about mom's cognitive skills tomorrow.

The physical therapist told me, on Tuesday, that mom had plateaued in her work (wasn't making progress or enough of it) and therefore would not be continuing services with mom. However, mom did well---fabulously the Thursday before New Year's and on Tuesday and, if mom did well again on Friday, services would continue. If not, then services would cease for now. The physical therapist told mom that she was finally working hard---the therapist felt that, prior to Thursday/Tuesday, mom would quit working when the 'going got tough.' The therapist explained that we could call the agency for a re-evaluation any time we feel that mom has improved and services may/may not continue after another evaluation---but this is in 2-3-4 weeks from now. The therapist stressed the ultimate importance of our family continuing to work with mom in a scheduled fashion in order for her to improve.

We all see mom a lot now that she is home. Anthony, Con and the kids come over or call (Sammy loves to talk to Nonny on the phone!!), Claudia and her family visit often, Terry lives with mom and dad, and I come to help out during the week. We all try our best to relieve dad so that he doesn't go stir crazy in the house all day. Lenny also drops in when he can (he and I live the farthest away now!).

I also found out that Medicare has hired people to do retrospective audits on services. This means that people who received services 1, 2, 3 years ago are being audited to see if the services were helping or not. In many instances, Medicare is making a case to say that the services were provided needlessly and then Medicare collects $$$$ BACK from service provider agencies!! Agencies can go out of business because of this--causing a shortage of service providers. How do people get the help they need???!!! Especially those with a head injury!!!???? Progress for stroke and head injury patients is generally a slow, variable progression..... And...none of the therapists use VISUAL SUPPORTS/AIDS which are VITAL to recovery!! Claudia and I made many that we use with mom (and her aids). I will write about the visual supports we made tomorrow.

Long story short: the occupational and physical therapists dropped mom's services after 4 weeks. Friday was her last day of service. Mom took the news very hard and can't stop crying (literally) since Friday. When I saw her Friday night, she kept saying, "I can't believe they left me..." and sobbing. She couldn't be consoled at all yesterday by Anthony, Con, Anthony Michael, Sam, Claudia, Terry, Ava....by no one. Dad is very, very discouraged by the drop of services too. Dare I say that I knew this would happen? It's healthcare system. Some of the guidelines are necessary for sure...but others just don't make sense....it's complicated to say the least. On the bright side, up until Friday, mom had turned a corner....the integration was taking shape and you could see a change in her affect and abilities. She just needs to either cry herself out or to stop crying and focus again on the positives. Please pray for mom's continued progress...your prayers count so much. Also, please pray for perseverance, endurance, and stamina but with joy in the journey for mom and dad. As always thanks........

I will continue again to write tomorrow.

"And we know that all things work together for good to those who love God and are called according to His purpose." Romans 8:28

Mom Update, January 1, 2012, Sunday, New Year's Day

I can’t believe it is 2012. Mom had a busy weekend. It started yesterday when her aide took the day off for New Years Eve. We were given two substitute aides who did not know mom or how to work with her. Dad called me to come over but I wasn’t home and I wasn’t close enough to come. I finished up what I was doing and went to see mom. She was still in her pajamas at 10:30. (Dad left when I arrived to go run erransds. It is important that he get out and go places so he isn’t cooped up in the house.) The aide didn’t seem to see any problem with this. I understood that it was going to be a difficult day so I washed and changed mom. I sat in the living room with her and we started to do a crossword puzzle. She was very fidgety and said she couldn’t sit still. I took out her walker and placed it in front of her and had her stand while I counted. She stood for a count of 15. Then she used her arms and her feet to skooch back in the chair. We kept doing the puzzle until she was fidgety again. I took out the bicycle pedal machine and put it on the lap tray. I placed her hands on the pedals and had her pedal with her hands for about 5 minutes. She did well. We finished the puzzle and mom knew a large majority of the answers.

I made mom lunch and she ate well. After lunch we did a worksheet. Dad came back and I left. Mom has continually been inconsistently inconsistent. There are days when she is fine emotionally and times when she cries for a whole day. Yesterday she cried a lot. There are times within a day that she is able to pull herself up and stand at the bar independently nice and straight and then there are times when she is barely able to pull herself up and she is all hunched over. One of the many aides that mom has told the agency that she needs a Sarita lift in the home because she isn’t consistent enough and the aides will get hurt. The PT told us this last week and it was like someone punched us n the stomach. I feel like it is a step back. If she uses the Sarita, she will have to use a commode and I just think of the dignity in that (or the lack of dignity). We are at a stand still right now. I think we are waiting for her doctor to write prescriptions for a Sarita. Well, actually we have to call the doctor first.

Dad bought some treats for him and her to have for New Years. They had their own little party.

I went to dad’s Sunday morning so dad could go to church. Kathy went ot New Jersey to pick up Aunt Sophie. Her aide was back and we gave her a shower. Many of the aides won’t shower her and it is very frustrating. Someone has to be there and force the issue (although, on the weekend the aide always showers her). We set mom up with breakfast and then I left after breakfast. I was called back to help her with the bathroom. She stood great and followed every command. She has issues with sensory input. She can’t tolerate the initial touch – when someone first touches her. If I tell her what I am going to touch and rub the area first she does better.

Speaking of that…She went to the ENT on Friday and Kathy and Dad and I accompanied her. If I rubbed her ears before the doctor put a scope in she did much better. If we gave her explicit directions and there were no surprises, she did better. He sent mom for a CAT scan of her stoma to make sure it is OK for surgery. He suggested we have it closed up surgically. He said she would swallow better, breathe better, cough more productively and be able to blow her nose better. It is also better if it is closed so she wouldn’t be susceptible to infection. He has done these many times and was comfortable suggesting we get it done. Kathy and I had to get her on a CAT scan table and we did it!!! It was not easy.

Today we all went to Café Gio, which is our tradition. We always go there on New Years Day. We had a great time. After, we went back to the house and the kids played football in the yard with Anthony and DAD!!! Dad ran around the yard and even fell at one point. We were flipping out but he got up and went in the house. He laughed, we all laughed! It was a great way to start off the year.

We have a lot to consider in the new year. Do we keep trying to get her to stand and walk? Do we get a Sarita? Do we concede to the aides during the week and what they will do and not do? Do we try to get there in the morning to guide them until they “get it?”

Please pray for our family as we continue our journey in the new year.

Peace and Love in the New Year,

~Claud