Hi Everyone,
I started the morning with mom today. She said "Good Morning" when I said good morning. I was able to really able to get all of her PT done before breakfast. I was able to work her legs really good. I even put the ball under her knee but lifted her leg for her and had her try to help me count. I then helped her eat breakfast. She ate everything. She has had a great appetite lately! While I was there they had a fire drill and I had to stay in the room with the door closed. I ended up being late to work! (Oh Well) Everyone has been so understanding, thank God. Next, Anthony came to be with mom. He said she was quiet today. He said she was awake and watching TV when he came. He talked to mom and then lunch came. She ate most of her lunch and fell asleep. He was able to work her legs. She pushed her legs down against his pushing and she also moved her feet.
Dad drove Aunt Sophie home to New Jersey and then came to see mom. He was there when I arrived in the evening. They were holding hands and watching TV. Mom didn't have her hearing aide in and we looked all over. It was in her wheel chair. A colleague of mine gave me a deck of cards - a memory game of common everyday objects. Dad and I placed 12 cards down at a time and played memory with her. Dad is so cute, he would pick up two cards and put them down without showing mom. I had to tell him we were playing for her benefit and let her label the objects. He was very tired. She was able to label most cards - they had a picture and the word on them. She is pretty good at reading. I showed her a picture of a tub and she said "shower". I said right but it is also a "tub" say "tub". Dad was kidding around with her and said it was a "Scrubba Dupa" (bottom in Ukranian). So I said don't confuse her. I asked mom what is it and she said, "Scrubba Dupa" repeating what dad said! Dad laughed and she smiled. Dad leaned in to mom and said, "I love you" and mom said, "I love you too." This made dad soooooo happy. He was grinning from ear to ear. Many times my mom doesn't respond to dad and he gets hurt. I also asked who he was and today she said, "Daddy." A few days ago she wouldn't say who he was. Dad was sooooo happy.
We played memory for a long time and then the respiratory therapist came to take numbers and change her tubing. Dad and I lifted mom in the bed because she was tilting to one side. We made her all comfortable for the night. We tucked her in and said a prayer. We said the "Our Father" and mom said it with us. We said the "Hail Mary" but mom didn't seem to remember that prayer.
Peace and Love to all,
Claudia
Friday, April 29, 2011
Thursday, April 28, 2011
Mom Update, April 27, 2011, Wednesday
Lenny began the day with mom and said that she was awake and alert and talked to him (not much though). She mouthed, "Good morning" and "I'm good" and "yes" and "no" in response to questions he asked her. He said that she ate all her breakfast enthusiastically and eagerly --- a hard boiled egg, farina with vanilla milk, coffee and fruit. He did her full physical therapy/range of motion exercises. Sometimes she mouthed so much in a sentence, he couldn't understand what she said. Lenny said that mom ripped her hearing aid out of her ear and detached the tube from the ear mold but he reattached it and I checked it and it works fine thank God. Mom had a shower while Lenny was there and when he returned to her room, she was tired. He said that when she would wake up, she was alert though and during one of these times, he spent time teaching her how to navigate the remote control on her TV.
Anthony saw mom around noon (shortly after Lenny left) and mom was just finishing eating her lunch. She ate every morsel of food. I think her hearty appetite is a good sign. He and dad did mom's physical therapy/range of motion exercises and worked on her legs also. He said she pushed against their hands with her right leg hard...and with the left leg a little. Mom's trach was changed and she has some bleeding around the site which they said is normal (but the respiratory person who was with mom the day of the set back was the person who did the procedure...that isn't very comforting at all).
Dad spoke to the dentist today. He said that mom was awake mostly and alert but also intermittently fell asleep. He and Aunt Sophie watched TV with her.
When I arrived, I saw there were mats next to the bed leaning on the wall. These are usually used for patients whose bed rails are not used. The mats go on the floor next to the person's bed in the event the person falls out of bed due to having no bed rails. Flashback from July!!! I searched and investigated high and low and no one admitted to having put the mats in her room. End result, mom will continue to be able to have her bed rails up and the mats were removed from her room. Alleluia. There are state guidelines that require that a patient be as "Free" as possible --- i.e. no bed rails because they "infringe on the person's human rights and restrict the person." Heaven help us all....I guess the logic is that anyone should have the right to fall out of bed and sustain a worse head injury or decanulation??? Whatever. Problem solved. (I hope). Mom motioned to me to take her mitts off her hands asap!! She doesn't like the mitts but she is a danger to herself without them and without monitoring her because she pulls on her trach line sometimes. I gave mom 3 containers of liquids to drink because I noticed there was a pile up of 4 containers on her tray which she hadn't drank. We have to be careful about how much she drinks because she no longer gets tube feeding (which is good). We need to make sure she hydrates herself well---hydration helps with cell restoration, level of activity, alertness, sleepiness... Mom drank 3 1/2 of the 4 containers of juice and water--maybe she was thirsty. The dietician saw me when I was leaving and told me to be sure to take the cups home that we bought for mom and wash them in the dishwasher because she saw the sponge and dish washing liquid we have in the room. I assured her that I take them home to wash in the dish washer. Sponges cause and breed bacteria which is dangerous for someone on a trach and vent particularly.
Claudia saw mom this evening. She worked on her hands and arms and then put the peg board in front of her. Claudia helped mom with the pegs hand over hand. After a few pegs mom put one in by herself. She only did one but that was great. Claudia also made mom take out every peg and put them back in the bag. Claudia asked mom to name her "Who am I?" Mom said, "Claudia" without prompting. Then Claudia asked mom who dad was but mom wouldn't say his name. She prompted her with the first sound "J" and mom said, "John." Claudia said, "No, Jean." Claudia got mom to drink a whole cup of juice. It is important to keep her hydrated. Claudia took out the ipad but by the time she took it out of the case and booted it up mom was asleep. Claudia then messaged mom's feet and did her exercises with her feet and ankles. She clipped her toe nails and put lotion on her feet. Mom continued to sleep so Claudia said a prayer and kissed her good night.
"For as the rain and the snow come down from heaven, and do not return there without watering the earth...so shall My word be which goes forth from My mouth; it shall not return to Me empty, without accomplishing what I desire." Isaiah 55:10-11
Anthony saw mom around noon (shortly after Lenny left) and mom was just finishing eating her lunch. She ate every morsel of food. I think her hearty appetite is a good sign. He and dad did mom's physical therapy/range of motion exercises and worked on her legs also. He said she pushed against their hands with her right leg hard...and with the left leg a little. Mom's trach was changed and she has some bleeding around the site which they said is normal (but the respiratory person who was with mom the day of the set back was the person who did the procedure...that isn't very comforting at all).
Dad spoke to the dentist today. He said that mom was awake mostly and alert but also intermittently fell asleep. He and Aunt Sophie watched TV with her.
When I arrived, I saw there were mats next to the bed leaning on the wall. These are usually used for patients whose bed rails are not used. The mats go on the floor next to the person's bed in the event the person falls out of bed due to having no bed rails. Flashback from July!!! I searched and investigated high and low and no one admitted to having put the mats in her room. End result, mom will continue to be able to have her bed rails up and the mats were removed from her room. Alleluia. There are state guidelines that require that a patient be as "Free" as possible --- i.e. no bed rails because they "infringe on the person's human rights and restrict the person." Heaven help us all....I guess the logic is that anyone should have the right to fall out of bed and sustain a worse head injury or decanulation??? Whatever. Problem solved. (I hope). Mom motioned to me to take her mitts off her hands asap!! She doesn't like the mitts but she is a danger to herself without them and without monitoring her because she pulls on her trach line sometimes. I gave mom 3 containers of liquids to drink because I noticed there was a pile up of 4 containers on her tray which she hadn't drank. We have to be careful about how much she drinks because she no longer gets tube feeding (which is good). We need to make sure she hydrates herself well---hydration helps with cell restoration, level of activity, alertness, sleepiness... Mom drank 3 1/2 of the 4 containers of juice and water--maybe she was thirsty. The dietician saw me when I was leaving and told me to be sure to take the cups home that we bought for mom and wash them in the dishwasher because she saw the sponge and dish washing liquid we have in the room. I assured her that I take them home to wash in the dish washer. Sponges cause and breed bacteria which is dangerous for someone on a trach and vent particularly.
Claudia saw mom this evening. She worked on her hands and arms and then put the peg board in front of her. Claudia helped mom with the pegs hand over hand. After a few pegs mom put one in by herself. She only did one but that was great. Claudia also made mom take out every peg and put them back in the bag. Claudia asked mom to name her "Who am I?" Mom said, "Claudia" without prompting. Then Claudia asked mom who dad was but mom wouldn't say his name. She prompted her with the first sound "J" and mom said, "John." Claudia said, "No, Jean." Claudia got mom to drink a whole cup of juice. It is important to keep her hydrated. Claudia took out the ipad but by the time she took it out of the case and booted it up mom was asleep. Claudia then messaged mom's feet and did her exercises with her feet and ankles. She clipped her toe nails and put lotion on her feet. Mom continued to sleep so Claudia said a prayer and kissed her good night.
"For as the rain and the snow come down from heaven, and do not return there without watering the earth...so shall My word be which goes forth from My mouth; it shall not return to Me empty, without accomplishing what I desire." Isaiah 55:10-11
Tuesday, April 26, 2011
Mom Update, April 26, 2011, Tuesday
Claudia began the day with mom. She did mom’s full physical therapy/range of motion exercises and really was able to stretch her hands, arms, fingers…, in particular, well. Right before Claudia finished, mom’s breakfast came. Mom had a hearty appetite again!! She has been eating really quickly, and well lately. Mom fed herself her entire meal. Mom even took a piece of the roll that was cut up and scooped it with her fork then balanced it on the fork all the way to her mouth (the head supervisory nurse was there at the time and saw mom do this). It seems to me that, lately, all mom’s energy is put into the acts of eating and sleeping. I could be wrong, but I think that the sleep mom engages in lately is more restorative than anything else (which is why I have been letting her sleep). Sometimes, we do wake her though. It’s a balancing act and involves a lot of intuition at times. When mom finished breakfast, she asked Claudia, “How is she?” twice. Claudia asked who mom was referring to and mom said, “Lucy.” So Claudia asked mom if she wanted to call Aunt Lucy, mom mouthed ‘no’ but we know that mom often says ‘no’ lately even when she means ‘yes.’ Claudia phoned Aunt Lucy and told her what mom said and Aunt Lucy talked to mom, though mom did not reply to her. The respiratory therapist came to see mom and was satisfied with her numbers so mom was put back on the CPAP mode of the vent. Don’t forget that this is good because the CPAP mode forces mom to breathe more on her own and all without the help of the vent. Mom goes back to the vent at night for now, just so she can rest well.
Anthony came to see mom next and found her asleep. He woke her easily and she was happy, smiling, and in a good mood. She was very interested in continuing to read the magazine Claudia left out for her so Anthony let her do that. He talked to her as she silently read and he talked about the pictures. Mom also watched TV on and off too. Anthony said she was very focused though she didn’t talk much. At noon, the CNAs put mom in the wheelchair and she had lunch in the recreation room with 2 other patients. The recreation people ordered Italian food from the restaurant next door. Mom had pasta with Bolognese sauce…she picked at it and ate about 1/3 of it. There was a lot on the plate. Anthony did a lot of leg work with mom before lunch. He said she moved her feet a lot but not her legs. He said mom pointed a lot too but he didn’t know what she wanted. I forgot to mention that, on Easter, the kids went out to play ball and came to the window of the room we were in and knocked on the window---mom startled and smiled and pointed at them over and over!!
Aunt Sophie and Dad came next to see mom. She finished lunch and listened to the conversation around her. They brought her back to her room but mom fell asleep.
I stopped in to see mom late in the afternoon. She was asleep but woke easily and smiled at me when she saw me. She mouthed, “Hello” and “I’m fine” and shook her hand yes and smiled when I asked if she had a good day. We talked and I hugged and kissed her and then John arrived and so did dinner (some baked chicken, carrots and mashed potatoes). I showed John how to feed mom and/or coax her to feed herself, but mom grabbed the fork and ate on her own. I left and John stayed a long while with mom tonight. Mom wanted the spoon instead of the fork though after a while. John tried to get mom to do things with her hands to exercise and mom did it but was sleepy. He tried to make her laugh, he sang to her, he worked on her hands and feet and legs (full physical therapy/range of motion exercises) but mom fell asleep. Mom would open her eyes on and off but go back out to sleep. During dinner, mom laughed at the TV show FRIENDS or at John. They watched the MET game and then John tucked her in for the night and prayed over her and kissed her and left.
On my way home from work tonight, I took the long way home…the scenic route down South Country Road. There’s a creek there that is a usual home for a pair of swans I love to watch and take pictures of. Tonight, there was a real treat…when I glanced at the creek, not only was the swan there, but there were blobs of white all over the trees…I stopped and looked closer and saw that there were 21 white egrets in the trees!!! What an awesome sight….immediately I grabbed my camera, then, after a while, in my excitement, I grabbed my phone thinking, “I can’t wait to tell mom about this!! She’ll love this!!” and then I remembered… My mom was my touchstone. My safe haven. My place of support. My playmate and friend. My teacher who taught me how to enjoy so much of life’s delights (dad too). Just ask any of the cousins or friends who grew up with us kids…mom was the ring leader and organizer of all things fun! I miss her in this capacity. But I am so thankful she is still here to share with me.
“For the Lord God is a sun and shield” Psalm 84:11
PS Here are the pictures of the egrets….
Anthony came to see mom next and found her asleep. He woke her easily and she was happy, smiling, and in a good mood. She was very interested in continuing to read the magazine Claudia left out for her so Anthony let her do that. He talked to her as she silently read and he talked about the pictures. Mom also watched TV on and off too. Anthony said she was very focused though she didn’t talk much. At noon, the CNAs put mom in the wheelchair and she had lunch in the recreation room with 2 other patients. The recreation people ordered Italian food from the restaurant next door. Mom had pasta with Bolognese sauce…she picked at it and ate about 1/3 of it. There was a lot on the plate. Anthony did a lot of leg work with mom before lunch. He said she moved her feet a lot but not her legs. He said mom pointed a lot too but he didn’t know what she wanted. I forgot to mention that, on Easter, the kids went out to play ball and came to the window of the room we were in and knocked on the window---mom startled and smiled and pointed at them over and over!!
Aunt Sophie and Dad came next to see mom. She finished lunch and listened to the conversation around her. They brought her back to her room but mom fell asleep.
I stopped in to see mom late in the afternoon. She was asleep but woke easily and smiled at me when she saw me. She mouthed, “Hello” and “I’m fine” and shook her hand yes and smiled when I asked if she had a good day. We talked and I hugged and kissed her and then John arrived and so did dinner (some baked chicken, carrots and mashed potatoes). I showed John how to feed mom and/or coax her to feed herself, but mom grabbed the fork and ate on her own. I left and John stayed a long while with mom tonight. Mom wanted the spoon instead of the fork though after a while. John tried to get mom to do things with her hands to exercise and mom did it but was sleepy. He tried to make her laugh, he sang to her, he worked on her hands and feet and legs (full physical therapy/range of motion exercises) but mom fell asleep. Mom would open her eyes on and off but go back out to sleep. During dinner, mom laughed at the TV show FRIENDS or at John. They watched the MET game and then John tucked her in for the night and prayed over her and kissed her and left.
On my way home from work tonight, I took the long way home…the scenic route down South Country Road. There’s a creek there that is a usual home for a pair of swans I love to watch and take pictures of. Tonight, there was a real treat…when I glanced at the creek, not only was the swan there, but there were blobs of white all over the trees…I stopped and looked closer and saw that there were 21 white egrets in the trees!!! What an awesome sight….immediately I grabbed my camera, then, after a while, in my excitement, I grabbed my phone thinking, “I can’t wait to tell mom about this!! She’ll love this!!” and then I remembered… My mom was my touchstone. My safe haven. My place of support. My playmate and friend. My teacher who taught me how to enjoy so much of life’s delights (dad too). Just ask any of the cousins or friends who grew up with us kids…mom was the ring leader and organizer of all things fun! I miss her in this capacity. But I am so thankful she is still here to share with me.
“For the Lord God is a sun and shield” Psalm 84:11
PS Here are the pictures of the egrets….
Monday, April 25, 2011
Mom Update, April 24, 2011, Sunday
Terry, Aunt Sophie and dad began the day with mom. Dad brought mom a bouquet of flowers. He was very weepy last night. Mom took a prayer card from dad’s pocket and read it. Claudia greeted mom with the Easter phrase from the old country: “Christ is risen!” and mom replied with: “He is risen indeed.” We all gathered at the facility at 10 for breakfast. I made some of the favorite and traditional foods mom used to make at the Easter breakfast she held each year (Easter pie, French toast casserole, fruit…). Claudia and Terry set the tables with pastel table clothes, centerpieces… We all gathered together in the recreation room with mom and held hands and began our day in thanks to God. We thanked God for blessing us by keeping us all together and ended our prayer with the prayer mom and dad taught us from day one of life and recited before the beginning of each meal: “Thank you Dear God for the food we are about to eat. Please keep us happy, healthy, and Holy. Amen.” Mom was awake and fairly alert all day. Typically, after we have breakfast with friends and family, we would all go outside to play a game of family baseball. This year, the Easter bunny brought mom some MET individual player game cards. She spent a lot of time reading each one. Terry also showed mom books, games…on her NOOK. Mom was intently looking at these too. We joked, laughed, sang songs, and talked and spent family time together!! It was a blessed day.
Rie and Phil– always being together with family, great food, and talking. Easter would not be the same if we weren’t all together. In the past I always remember all the great wiffle ball games & all the great family pictures
Sammy- being together as a family. Even though all our lives have changed now that this has happened to Nonny, we are always going to be a family. Also that we will always be together and have fun and laugh no matter where life takes us. We all love you Nonny. What I love about Easter is all the whiffle-ball games and the way we all laugh with and at each other.
Gina- being together as a family. I love going to nonny and poppy’s house and being together. I love playing whiffle ball in the field at their house. Today we still played our annual game at the facility in the back and it was so much fun.
Michael- my favorite things about today is playing whiffle ball with Lenny, Jean, and Anthony Michael Gilman and sam and gina. Also I like playing my D.S. with Anthony Michael. The last thing I liked about today was playing with the silly putty.
Terry-one thing I liked from earlier Easters was when we go outside after we ate Easter dinner and played baseball. Because of my injured leg I could hit the ball but not run around the bases so little Anthony would run around the bases for me. What I like about this Easter is that mom is getting better and we are all spending it together, maybe next year at this time we will be playing baseball after dinner again. If not then maybe the year after.
Alyssa- I like being home with my family for past Easters. This Easter, I like being here with everyone J. And the food of course
John- My favorite part of past Easters was going to breakfast. Mom would have everything laid out perfectly and there was so much food you couldn’t stand it. I liked that everyone was together today. The food was great today and mom was in good spirits.
Ava- I used to love painting the Ukrainian Easter Eggs. This year I liked that we all were singing together.
Anthony Michael-my favorite past Easter memory was when EVERYONE plays baseball. Now I like everyone is nice with each other.
Claudia – I loved mom’s “snail rolls”! They were supposed to be rabbits but we always teased mom that they looked like snails. I have loving memories of my children as toddlers walking around with a snail roll and butter. I also loved how after the Easter Baskets were opened everyone looked so forward to going to Nonny’s for breakfast! I remember the day before Easter at 12:00 noon how we all went to mom’s for Easter Pie! I remember one year when Jean’s friend Joe showed up at Nonny’s for Easter Pie! Everyone was always welcome at Nonny’s. This year was just great being together with mom and eating some of the same food. What a blessing to all be together with mom.
Anthony (Big) – Anthony liked the family whiffle ball game. Today Anthony liked being with mom, sitting at her side and holding her hand.
Pop – Pop is so glad “that we are all together and that mom understands us, it may not be like Easters past but it is a wonderful day. God Bless my children for setting this day up.”
Jean-Is so happy that he got to share this day with everyone including Alyssa. It has been a really fun day and the Yankees are winning. Hooray !!!
Con – Love being with family. Thankful to GOD for ALL the blessings we have on this day and always. Having fun and laughing with our family and talking about old memories.
Aunt Sophie-I wish her good health and have her come home soon and God bless nonny.
Kathy – In the past, I always loved going to mom and dad’s house for the day—the breakfast, the whiffle ball games in the yard where we played when we were all kids, the dinner later in the day, hanging around outside relaxing and talking and laughing and being a family all together. Today, I am thankful that we are all together still. We had a blessed day. We are truly so lucky to have each other and the family we have. Nothing can break the bonds of love that we have for each other. As the commercial says, today was “priceless.”
When mom returned to her room, she was stroking Anthony Michael’s face and he and Sammy snuggled up to her and she mouthed, “Today was very nice. It made me very happy.” When I asked her, “Did you have fun today mom?” she mouthed, “Yes, How about you?” Claudia, dad and I stayed to feed her dinner or prompt her to. I left and then dad and Claudia tucked her in and asked her if she wanted to pray (mom mouthed YES), so they prayed and tucked her in as she fell asleep.
“I am he that lives, and was dead; and, behold, I am alive for ever more, Amen; and have the keys of hell and of death.” Revelations 1:18
Rie and Phil– always being together with family, great food, and talking. Easter would not be the same if we weren’t all together. In the past I always remember all the great wiffle ball games & all the great family pictures
Sammy- being together as a family. Even though all our lives have changed now that this has happened to Nonny, we are always going to be a family. Also that we will always be together and have fun and laugh no matter where life takes us. We all love you Nonny. What I love about Easter is all the whiffle-ball games and the way we all laugh with and at each other.
Gina- being together as a family. I love going to nonny and poppy’s house and being together. I love playing whiffle ball in the field at their house. Today we still played our annual game at the facility in the back and it was so much fun.
Michael- my favorite things about today is playing whiffle ball with Lenny, Jean, and Anthony Michael Gilman and sam and gina. Also I like playing my D.S. with Anthony Michael. The last thing I liked about today was playing with the silly putty.
Terry-one thing I liked from earlier Easters was when we go outside after we ate Easter dinner and played baseball. Because of my injured leg I could hit the ball but not run around the bases so little Anthony would run around the bases for me. What I like about this Easter is that mom is getting better and we are all spending it together, maybe next year at this time we will be playing baseball after dinner again. If not then maybe the year after.
Alyssa- I like being home with my family for past Easters. This Easter, I like being here with everyone J. And the food of course
John- My favorite part of past Easters was going to breakfast. Mom would have everything laid out perfectly and there was so much food you couldn’t stand it. I liked that everyone was together today. The food was great today and mom was in good spirits.
Ava- I used to love painting the Ukrainian Easter Eggs. This year I liked that we all were singing together.
Anthony Michael-my favorite past Easter memory was when EVERYONE plays baseball. Now I like everyone is nice with each other.
Claudia – I loved mom’s “snail rolls”! They were supposed to be rabbits but we always teased mom that they looked like snails. I have loving memories of my children as toddlers walking around with a snail roll and butter. I also loved how after the Easter Baskets were opened everyone looked so forward to going to Nonny’s for breakfast! I remember the day before Easter at 12:00 noon how we all went to mom’s for Easter Pie! I remember one year when Jean’s friend Joe showed up at Nonny’s for Easter Pie! Everyone was always welcome at Nonny’s. This year was just great being together with mom and eating some of the same food. What a blessing to all be together with mom.
Anthony (Big) – Anthony liked the family whiffle ball game. Today Anthony liked being with mom, sitting at her side and holding her hand.
Pop – Pop is so glad “that we are all together and that mom understands us, it may not be like Easters past but it is a wonderful day. God Bless my children for setting this day up.”
Jean-Is so happy that he got to share this day with everyone including Alyssa. It has been a really fun day and the Yankees are winning. Hooray !!!
Con – Love being with family. Thankful to GOD for ALL the blessings we have on this day and always. Having fun and laughing with our family and talking about old memories.
Aunt Sophie-I wish her good health and have her come home soon and God bless nonny.
Kathy – In the past, I always loved going to mom and dad’s house for the day—the breakfast, the whiffle ball games in the yard where we played when we were all kids, the dinner later in the day, hanging around outside relaxing and talking and laughing and being a family all together. Today, I am thankful that we are all together still. We had a blessed day. We are truly so lucky to have each other and the family we have. Nothing can break the bonds of love that we have for each other. As the commercial says, today was “priceless.”
When mom returned to her room, she was stroking Anthony Michael’s face and he and Sammy snuggled up to her and she mouthed, “Today was very nice. It made me very happy.” When I asked her, “Did you have fun today mom?” she mouthed, “Yes, How about you?” Claudia, dad and I stayed to feed her dinner or prompt her to. I left and then dad and Claudia tucked her in and asked her if she wanted to pray (mom mouthed YES), so they prayed and tucked her in as she fell asleep.
“I am he that lives, and was dead; and, behold, I am alive for ever more, Amen; and have the keys of hell and of death.” Revelations 1:18
Mom Update, April 23, 2011, Saturday
I began the day with mom – she had already eaten breakfast and had a shower and was in her chair by 9:30. She slept a lot after her shower. It’s that kind of day today though. I would try to wake her but she would just open her eyes, look at me blankly and wide-eyed, and go back to sleep. I do still wonder if she is up all night or not and just has her days and nights mixed up. Around 10:30, I put the headphones on her and played a beautiful book on tape that I listened to the other day, “Heaven is For Real: A Little Boy’s Astounding Story of His Trip to Heaven and Back.”
In light of the season, I wanted to share with you all, something that a colleague shared with me a while back:
Of Elders, Character, Christ’s Passion, and Blessing (by Father Ron Rolheiser)
At a workshop several years ago, a woman shared this story: She was the mother of four children and, while they were all still young, at home, in school, her father, already a widower, suffered a stroke that left him severely debilitated. He was unable to take care of himself and needed assistance.
Being the dutiful daughter, she had him move in with her own family, at great inconvenience to her husband and children. So many of their family routines had to be adjusted and rearranged to accommodate her dad’s presence. Their life changed radically. At a point, her father’s condition deteriorated to the point where she had to take him to a hospice where he could receive full-time care. But, even then, she still needed to visit him daily, often having to take one or more of her children with her. This went on for seven years. Daily, she and one or other of her children would have to go and spend some time with her father.
During those years, many times, in large and small ways, she apologized to her husband and children for the inconvenience this was causing them. Eventually, her father died. Several years after the funeral her eldest son, now in college, said to her: “You know, mom, all those years that we had to arrange our lives so much around Grandpa and his illness—that was really a precious time. That was a great gift to our family?”
How can the life of someone like that, someone whose life and existence can weigh on us like a burden, be a blessing? How are we gifted by having people like that in our lives?
The answer is part of a deep human and spiritual mystery, a part of the secret of love itself. We give life to each other not just in what we actively do for each other, but also, and sometimes especially, in what we passively absorb and are unable to do. Helplessness brings a special presence into a room. We give life through our activity and we also give life through our passivity. We bring a blessing to the sick when we visit them, but we also leave their presence blessed by having visited them. There is love in giving, just as there is love in receiving. And the gift does not always look or feel like a beautifully wrapped present. The gift can, initially, seem like a burden, an unwanted imposition, an awkward inconvenience, an unfortunate duty. But those feelings themselves eventually contribute to the depth of the gift.
We see this mysterious aspect of love illustrated in the Gospels when they describe how Jesus gave his life and his death for us. Each of the Gospels has two very distinct parts: The early parts of the Gospels describe Jesus’ activity and how he gave his life for us by what he did for us. The latter part of the Gospels describes Jesus’ passivity and how he gave his death for us by what he passively absorbed for us. Appropriately this latter part is called The Passion(from the Latin, passio, meaning: passiveness).
Today we struggle to understand this, both intellectually and existentially. Sadly, today, we tend to define life and meaning almost solely on the basis of health, productivity, usefulness, and what we can actively contribute to others. What can we bring to the table?
And so we ask ourselves: What do the elderly, who can no longer live on their own, contribute to our lives? What meaning is there in the continued existence of a person living with full-blown dementia? What does someone who is mentally handicapped bring to the community? Why prolong the life of someone who is in the final stages of a terminal illness? And: Why keep a debilitated Grandpa in the house when he disrupts our normal family life?
The answer: Because a person in this condition, at some deep level, is giving us a precious gift, namely, depth and character, and the true meaning of what it is to love.
Whenever a culture debates about the merits of euthanasia, it is an infallible sign that we no longer understand this. I like James Hillman’s take on this: Productivity is too narrow a measure of usefulness, disability too cramping a notion of helplessness. An old woman may be helpful simply as a figure valued for her character. Like a stone at the bottom of a riverbed, she may do nothing but stay still and hold her ground, but the river has to take her into account and alter its flow because of her. An older man by sheer presence plays his part as a character in the drama of the family and neighborhood. He has to be considered, and patterns adjusted simply because he is there. His character brings particular qualities to every scene, adds to their intricacy and depth by representing the past and the dead. When all the elderly are removed to retirement communities, the river flows more smoothly back home. No disruptive rocks. Less character, depth or true love too.
There are many friends and family who have sat around mom’s table early Easter morning partaking in the homemade brunch she would serve us….Easter pie, homemade rolls, eggs, ham, blintzes…a feast of love. Many have texted me today or called to send a prayer or to recollect our wonderful times around the table together at mom and dad’s house. We are blessed indeed that mom is still here with us to celebrate the season and time of family and friends.
Mom woke just in time for lunch, which was being brought into her room. She had tilapia with wine sauce, yellow rice, green beans, mixed fruit and juice. I began to feed the first few spoonfuls to mom but she quickly grabbed the spoon to feed herself. We did some hand over hand feeding with the spoon for a while, then mom fed herself. She would stop in between though and just sit there and need another refresher on what to do and what she was doing. Her nose runs soooo much when she eats. It is extremely annoying to her. When mom woke today, she was in a very stubborn mood which is hard to deal with sometimes. She vascilated between trying hard to feed herself, then sitting and doing nothing and ignoring my words of encouragement, then pushing me away with all her strength when I would try hand over hand prompting. Sometimes, she would even empty a fully loaded spoon I had just prepared for her to lift, and she would reload it herself or just spread the food all over the plate. We sort of argued in a way then, and after that, she continually, and effectively fed herself. Thank God. The respiratory therapist said that her CO2 levels were at 53 this morning. This is NOT good. Too high. At noon though, her numbers were back down to 43 so the therapist put her back on the CPAP mode of the vent. She seems to be having difficulty with higher CO2 levels lately and this makes her sleepy. We are trying to move her around more to increase her breathing. Anthony and Con arrived next and we all tried talking to mom. She fell asleep though. One of the nurses slipped on water on the floor by the garbage can and hurt his foot. Mom slept the whole time Con and Anthony were there. They said she had a few more of the shaking and high total rate pressure episodes too but mainly slept while they were there. Terry and Dad arrived later. They sat with mom but she slept all afternoon. She woke for dinner: chicken salad, tomato, a roll, and mixed fruit…but went right back to sleep. They tucked her in and prayed and left.
"I am the resurrection and the life; he who believes in Me will live even if he dies,” John 11:25
In light of the season, I wanted to share with you all, something that a colleague shared with me a while back:
Of Elders, Character, Christ’s Passion, and Blessing (by Father Ron Rolheiser)
At a workshop several years ago, a woman shared this story: She was the mother of four children and, while they were all still young, at home, in school, her father, already a widower, suffered a stroke that left him severely debilitated. He was unable to take care of himself and needed assistance.
Being the dutiful daughter, she had him move in with her own family, at great inconvenience to her husband and children. So many of their family routines had to be adjusted and rearranged to accommodate her dad’s presence. Their life changed radically. At a point, her father’s condition deteriorated to the point where she had to take him to a hospice where he could receive full-time care. But, even then, she still needed to visit him daily, often having to take one or more of her children with her. This went on for seven years. Daily, she and one or other of her children would have to go and spend some time with her father.
During those years, many times, in large and small ways, she apologized to her husband and children for the inconvenience this was causing them. Eventually, her father died. Several years after the funeral her eldest son, now in college, said to her: “You know, mom, all those years that we had to arrange our lives so much around Grandpa and his illness—that was really a precious time. That was a great gift to our family?”
How can the life of someone like that, someone whose life and existence can weigh on us like a burden, be a blessing? How are we gifted by having people like that in our lives?
The answer is part of a deep human and spiritual mystery, a part of the secret of love itself. We give life to each other not just in what we actively do for each other, but also, and sometimes especially, in what we passively absorb and are unable to do. Helplessness brings a special presence into a room. We give life through our activity and we also give life through our passivity. We bring a blessing to the sick when we visit them, but we also leave their presence blessed by having visited them. There is love in giving, just as there is love in receiving. And the gift does not always look or feel like a beautifully wrapped present. The gift can, initially, seem like a burden, an unwanted imposition, an awkward inconvenience, an unfortunate duty. But those feelings themselves eventually contribute to the depth of the gift.
We see this mysterious aspect of love illustrated in the Gospels when they describe how Jesus gave his life and his death for us. Each of the Gospels has two very distinct parts: The early parts of the Gospels describe Jesus’ activity and how he gave his life for us by what he did for us. The latter part of the Gospels describes Jesus’ passivity and how he gave his death for us by what he passively absorbed for us. Appropriately this latter part is called The Passion(from the Latin, passio, meaning: passiveness).
Today we struggle to understand this, both intellectually and existentially. Sadly, today, we tend to define life and meaning almost solely on the basis of health, productivity, usefulness, and what we can actively contribute to others. What can we bring to the table?
And so we ask ourselves: What do the elderly, who can no longer live on their own, contribute to our lives? What meaning is there in the continued existence of a person living with full-blown dementia? What does someone who is mentally handicapped bring to the community? Why prolong the life of someone who is in the final stages of a terminal illness? And: Why keep a debilitated Grandpa in the house when he disrupts our normal family life?
The answer: Because a person in this condition, at some deep level, is giving us a precious gift, namely, depth and character, and the true meaning of what it is to love.
Whenever a culture debates about the merits of euthanasia, it is an infallible sign that we no longer understand this. I like James Hillman’s take on this: Productivity is too narrow a measure of usefulness, disability too cramping a notion of helplessness. An old woman may be helpful simply as a figure valued for her character. Like a stone at the bottom of a riverbed, she may do nothing but stay still and hold her ground, but the river has to take her into account and alter its flow because of her. An older man by sheer presence plays his part as a character in the drama of the family and neighborhood. He has to be considered, and patterns adjusted simply because he is there. His character brings particular qualities to every scene, adds to their intricacy and depth by representing the past and the dead. When all the elderly are removed to retirement communities, the river flows more smoothly back home. No disruptive rocks. Less character, depth or true love too.
There are many friends and family who have sat around mom’s table early Easter morning partaking in the homemade brunch she would serve us….Easter pie, homemade rolls, eggs, ham, blintzes…a feast of love. Many have texted me today or called to send a prayer or to recollect our wonderful times around the table together at mom and dad’s house. We are blessed indeed that mom is still here with us to celebrate the season and time of family and friends.
Mom woke just in time for lunch, which was being brought into her room. She had tilapia with wine sauce, yellow rice, green beans, mixed fruit and juice. I began to feed the first few spoonfuls to mom but she quickly grabbed the spoon to feed herself. We did some hand over hand feeding with the spoon for a while, then mom fed herself. She would stop in between though and just sit there and need another refresher on what to do and what she was doing. Her nose runs soooo much when she eats. It is extremely annoying to her. When mom woke today, she was in a very stubborn mood which is hard to deal with sometimes. She vascilated between trying hard to feed herself, then sitting and doing nothing and ignoring my words of encouragement, then pushing me away with all her strength when I would try hand over hand prompting. Sometimes, she would even empty a fully loaded spoon I had just prepared for her to lift, and she would reload it herself or just spread the food all over the plate. We sort of argued in a way then, and after that, she continually, and effectively fed herself. Thank God. The respiratory therapist said that her CO2 levels were at 53 this morning. This is NOT good. Too high. At noon though, her numbers were back down to 43 so the therapist put her back on the CPAP mode of the vent. She seems to be having difficulty with higher CO2 levels lately and this makes her sleepy. We are trying to move her around more to increase her breathing. Anthony and Con arrived next and we all tried talking to mom. She fell asleep though. One of the nurses slipped on water on the floor by the garbage can and hurt his foot. Mom slept the whole time Con and Anthony were there. They said she had a few more of the shaking and high total rate pressure episodes too but mainly slept while they were there. Terry and Dad arrived later. They sat with mom but she slept all afternoon. She woke for dinner: chicken salad, tomato, a roll, and mixed fruit…but went right back to sleep. They tucked her in and prayed and left.
"I am the resurrection and the life; he who believes in Me will live even if he dies,” John 11:25
Mom Update, April 25, 2011, Monday
Lenny began the day with mom at around 8:00 a.m. He said that mom was very, very sleepy this morning. She would be up for a few minutes and then sleep again right away. He did her full physical therapy/range of motion exercises anyway. She was very sleepy…no resistance. No waking her even if you shook her. She ate like there was no tomorrow before that though!!! Ate all her French Toast, oatmeal and juice and coffee for breakfast. Lenny finally got her to wake up around 10 a.m. Mom said, “Good morning” and a lot of other things but he couldn’t make out what she was saying (he isn’t good at lipreading). Carmine came and did his exercises with her, but mom slept a lot for him too. He wants us to work on her tongue exercises more. He told Lenny that she is improving a lot and doing well in general. Lenny wants to implement a plan for keeping mom awake but he is going to ask his physiological psychology teacher first. His plan is to keep mom awake on purpose during the day and make her sleep only at night. He is concerned though about doing this because he wants to check to see if sleep is promoting healing for mom. He is studying physiological psychology and comes home with many ideas about how to help mom. Ava comes home with ideas about how to improve mom’s speech.
Dad and Aunt Sophie came to see mom shortly after Lenny left. Mom had her lunch then and ate everything. She had chicken salad, a croissant, lettuce, tomato, and carrot cake and vanilla milk. After lunch, she fell asleep again. I came to see mom next and she was asleep. I woke her and we talked. Shortly after that, Terry came to see mom. She showed mom books and games on her NOOK. Mom really stares at the pages as Terry reads to her. She is very interested in what Terry does with her. While Terry read to mom, I worked on her feet and ankles and legs. While mom is in the wheelchair, she wears mid-calf-high E-Z boots. They are fleece lined on the inside and Velcro closed down the shin bone. They have a strong plastic back at the ankle that extends down the bottom of the foot. This helps to keep mom’s feet from dropping forward (which, if this happens, will prevent her from ever walking again). Dad came after dinner to be with mom again and Terry left. Terry said mom fell asleep after I left, but woke to eat all her dinner. When dad came, mom was initially awake but then fell asleep. He tucked her in for the night and prayed and left.
"He is not here; he has risen, just as he said." Matthew 28:6
Dad and Aunt Sophie came to see mom shortly after Lenny left. Mom had her lunch then and ate everything. She had chicken salad, a croissant, lettuce, tomato, and carrot cake and vanilla milk. After lunch, she fell asleep again. I came to see mom next and she was asleep. I woke her and we talked. Shortly after that, Terry came to see mom. She showed mom books and games on her NOOK. Mom really stares at the pages as Terry reads to her. She is very interested in what Terry does with her. While Terry read to mom, I worked on her feet and ankles and legs. While mom is in the wheelchair, she wears mid-calf-high E-Z boots. They are fleece lined on the inside and Velcro closed down the shin bone. They have a strong plastic back at the ankle that extends down the bottom of the foot. This helps to keep mom’s feet from dropping forward (which, if this happens, will prevent her from ever walking again). Dad came after dinner to be with mom again and Terry left. Terry said mom fell asleep after I left, but woke to eat all her dinner. When dad came, mom was initially awake but then fell asleep. He tucked her in for the night and prayed and left.
"He is not here; he has risen, just as he said." Matthew 28:6
Friday, April 22, 2011
Mom Update, April 22, 2011, Friday
Claudia and Terry are on their way home tonight from Saratoga Springs. They went away for a few days of rest and relaxation. I was home cooking for Easter Sunday---stuffed mushrooms and Easter pie (ricotta, mozzarella, suprasade, pepperoni, ham, provolone, hard boiled eggs…) and dad’s birthday cake… Dad went to pick up Aunt Sophie.
Soooo…..Con began the day with mom this morning. She was there bright and early and spent the day with mom. Mom had another relatively sleepy day today, alert when awake but very sleepy. Con was there before mom had breakfast and mom said, “Hi” to Con when she got there. Mom ate oatmeal, waffles, and OJ and coffee for breakfast. Con did mom’s full physical therapy/range of motion exercises and then mom fell asleep. Con read a magazine to mom and they looked at the pictures together. Mom went back on the CPAP mode of the vent for a while in the afternoon after she woke up finally. She ate turkey with gravy, cream of spinach and corn and bread for lunch. Anthony, Sammy, and Anthony Michael all joined Con and mom for lunch and they brought sandwiches and told mom they would eat with her just like a picnic! Mom liked that. They talked with mom and did her physical therapy again and also had mom do the hand bicycle from Barry for a while. We are trying to get mom to be more active because it opens pathways in the brain and also helps her to breathe better.
Oh yes, remember when Anthony and I inquired about the resident dentist coming to see mom to clean her teeth? This was about 2 months ago!!!! Our health care system is terrible! The dentist said it would take about 2-3 weeks longer before seeing mom and cleaning her teeth.
Dad arrived with Aunt Sophie as Con, Ant and the kids were leaving or shortly before that. Dad said that he and Anthony heard mom’s voice today because the trach cuff was loose again and it sounded just like her normal voice!! This was the first time Dad has heard her voice since last May… Dad seems to be having a difficult week…his birthday and Easter week are hard for him. He and mom are very active in the church and I am sure he misses her as he participates in this week’s church activities. Dad did mom’s upper body physical therapy/range of motion exercises and they talked and watched TV. Mom kept having periods of high respiratory rates and shaking again today. Dad asked her what was wrong and mom said it was her stomach that hurt. Dad felt her stomach during the high respiratory rate periods and found that it was very hard and called the nurse who determined mom had a problem with gas…so the nurse gave mom something for the problem. Mom’s 3-11 aide said that she found out that mom sleeps better when the head of the bed is lowered a little as opposed to being elevated to a sitting position. Dad and Aunt Sophie visited with mom for a while and then dad brought Aunt Sophie to his house. Anthony stopped by there to make some dinner for Aunt Sophie and dad returned to see mom again. When I arrived, mom was eating dinner. Dad was feeding her some pudding. She had just finished eating some string beans, carrots and quiche. She ate all the food at breakfast and dinner. She wasn’t crazy about her lunch. Mom and I talked and discussed the events of my day. I asked her if she wanted to talk to Claudia and Terry on the phone and she mouthed, “Yes” so we called them and she listened intently to the details of their trip. After the phone call, mom fell asleep (the aides had come in to put her back to bed by then). When she woke, dad and I worked on physical therapy on her legs. We tried to get mom to move her legs and toes and she mouthed, “I don’t want to move them.” Dad said that he and mom spent time praying together today. Mom fell asleep again. Dad and I stayed a while longer and then we tucked mom in and prayed over her and went home.
“Behold, the Lamb of God, who takes away the sins of the world” John 1:29
Soooo…..Con began the day with mom this morning. She was there bright and early and spent the day with mom. Mom had another relatively sleepy day today, alert when awake but very sleepy. Con was there before mom had breakfast and mom said, “Hi” to Con when she got there. Mom ate oatmeal, waffles, and OJ and coffee for breakfast. Con did mom’s full physical therapy/range of motion exercises and then mom fell asleep. Con read a magazine to mom and they looked at the pictures together. Mom went back on the CPAP mode of the vent for a while in the afternoon after she woke up finally. She ate turkey with gravy, cream of spinach and corn and bread for lunch. Anthony, Sammy, and Anthony Michael all joined Con and mom for lunch and they brought sandwiches and told mom they would eat with her just like a picnic! Mom liked that. They talked with mom and did her physical therapy again and also had mom do the hand bicycle from Barry for a while. We are trying to get mom to be more active because it opens pathways in the brain and also helps her to breathe better.
Oh yes, remember when Anthony and I inquired about the resident dentist coming to see mom to clean her teeth? This was about 2 months ago!!!! Our health care system is terrible! The dentist said it would take about 2-3 weeks longer before seeing mom and cleaning her teeth.
Dad arrived with Aunt Sophie as Con, Ant and the kids were leaving or shortly before that. Dad said that he and Anthony heard mom’s voice today because the trach cuff was loose again and it sounded just like her normal voice!! This was the first time Dad has heard her voice since last May… Dad seems to be having a difficult week…his birthday and Easter week are hard for him. He and mom are very active in the church and I am sure he misses her as he participates in this week’s church activities. Dad did mom’s upper body physical therapy/range of motion exercises and they talked and watched TV. Mom kept having periods of high respiratory rates and shaking again today. Dad asked her what was wrong and mom said it was her stomach that hurt. Dad felt her stomach during the high respiratory rate periods and found that it was very hard and called the nurse who determined mom had a problem with gas…so the nurse gave mom something for the problem. Mom’s 3-11 aide said that she found out that mom sleeps better when the head of the bed is lowered a little as opposed to being elevated to a sitting position. Dad and Aunt Sophie visited with mom for a while and then dad brought Aunt Sophie to his house. Anthony stopped by there to make some dinner for Aunt Sophie and dad returned to see mom again. When I arrived, mom was eating dinner. Dad was feeding her some pudding. She had just finished eating some string beans, carrots and quiche. She ate all the food at breakfast and dinner. She wasn’t crazy about her lunch. Mom and I talked and discussed the events of my day. I asked her if she wanted to talk to Claudia and Terry on the phone and she mouthed, “Yes” so we called them and she listened intently to the details of their trip. After the phone call, mom fell asleep (the aides had come in to put her back to bed by then). When she woke, dad and I worked on physical therapy on her legs. We tried to get mom to move her legs and toes and she mouthed, “I don’t want to move them.” Dad said that he and mom spent time praying together today. Mom fell asleep again. Dad and I stayed a while longer and then we tucked mom in and prayed over her and went home.
“Behold, the Lamb of God, who takes away the sins of the world” John 1:29
Thursday, April 21, 2011
Mom Update, April 21, 2011, Thursday
I began the day with mom today. She was awake and had just finished breakfast even though it was only after 8 a.m. Mom and I talked a lot this morning. We spent time just hanging out and hugging and talking and praying first. I anointed her with frankincense (good for the memory when put on the temples). And we prayed and talked about the season and Holy Days and Passover. We talked about Jesus dying on the cross as a sacrifice for our sins so that death will pass over us all. And we talked about the search for the perfect lamb without blemish that every family had to find and slaughter in order to put the blood of that lamb on the doorpost and lentils in order to save the household inside during the time of Moses. I guess we had a Bible Study and time of prayer this morning. It was lovely. Mom listened intently.
We read some Easter cards that people sent. Or, I should say that I asked mom to read them and she mouthed every word…one from Virginia and Bob, another from Uncle Mike and Aunt Pat, and the last one from Aunt Carol. After she read them all to me, I asked if she wanted to call Aunt Carol to talk and she mouthed, “Yes” but as I was dialing her, dad called. Mom grabbed for the phone when she heard his voice and she listened intently as he spoke…she even conversed with him. After dad said, “Hi,” mom said, “Hi.” When he asked how she was, she told him, “I’m fine.” She answered questions about breakfast too. When dad hung up, we called Aunt Carol. Mom did the same with her, answering questions about how she felt and what she ate…etc. Mom and I did her full physical therapy/range of motion exercises next. I put on some peppy Janet Jackson music and mom counted and helped move her body as we progressed. She was able to count with me to 20 with no problem. It’s too bad she still has the vent and the trach because it prevents us from hearing what she says. As she is, we have to do a lot of lip reading. Near the end of the exercising, mom began to fall asleep on and off…more off than on. When she woke at one point, I put the bed desk on her lap and asked if she wanted to read, she mouthed, “Yes” so I asked if she wanted to read the baseball magazine and she said, “Yes.” I set her up and in between snoozes she read the magazine.
One of the respiratory people spent a lot of time with mom and I this morning. The therapist said that mom had multiple episodes of apnea yesterday and last night and the night before. Her numbers went up to 43 (42 is the highest they like to see in the high end of normal). For this reason, they took her off CPAP mode and put her back on the SMIV mode of the vent. What this means is that the vent breathes more and has a quicker response when mom stops breathing. The CPAP mode of the vent requires mom to breathe more on her own and without a quicker response time for breathing for her during periods of apnea.
Anthony came to see mom next and we both worked on using the bicycle machine for the hands and arms with mom. When we held one hand on it, she was able to hold onto the machine and follow the rotations we moved her in. The respiratory therapist checked mom’s CO2 levels again after an hour of being on the CPAP mode and also after we were working on the exercise hand bike. The therapist said that mom’s levels hadn’t changed which is good because if the CO2 levels went up after exercise, it would mean that mom was not able to exert herself. Since the CO2 levels stayed the same, it meant that mom was able to exert herself without stress on her body. Anthony used the hand bike machine in many creative ways to help mom. One way was to have mom hold the crossbar of the machine and hold on while he pulled the bar further and further away from her…mom did it. Then he used it to have mom hold the bar and reach upward. The aide came to change mom then and wash her up and put her in the chair. The aide said that mom and she laughed because the aide said that while she was putting cream on mom she told mom it was like greasing a turkey and mom laughed really hard. Lunch came (salmon, pears, rice pilaf, and string beans). Mom doesn’t like fishy tasting fish so this wasn’t her favorite meal. She kept falling asleep during lunch…it took forever for her to finish lunch. Predominantly, we fed mom or did hand over hand feeding…once in a while when she woke up, she fed herself. But she would fall asleep in the middle of eating a lot too. When mom wakes up after falling asleep in the middle of things, she picks up right exactly where she last left off in the activity she had been engaging. Mom ate about 1/3 of her lunch. Mom’s dear friends, Florence and Maureen, came to visit this afternoon. She smiled at Florence when she saw her. Florence brought mom an Easter gift and mom grabbed the bag as I untied the bow and took the contents out---a really soft pink rabbit with gingham bows! It was adorable and mom seemed to like it. She had just taken her pink, soft bear earlier today and rubbed it against her cheek. She will enjoy this stuffed animal in the same way. It is probably frustrating for mom to not be able to join the conversation...Carmine, John and Con's cousin who is a speech therapist who works with mom, says we should all just speak normally to mom...maybe a little slower but about the same things we always would because he feels mom knows what is going on around her. Mom slept through much of the visit but listened to us talk whenever she was awake. Dad joined us mid-afternoon. Mom kissed him hello. Mom had periods of shaking in her hands and arms this afternoon and when this happened, her total rate shot from in the 30s to the 50s but went back down on its own. Two other friends from church came to see her briefly too. Mom smiled broadly when she saw them. The ladies stayed and visited with mom and dad for a while this afternoon (they both typically are part of the friends and family crew who enjoy Easter breakfast at mom and dad's). When the aides came to change mom and put her back in bed, the ladies left.
Con and Samantha came to see mom tonight. Dad went to get some dinner and then eventually went home, while the girls stayed with mom. Sammy said that mom was awake but not responsive and didn't want to play games or do anything at all so they did her physical therapy/range of motion exercise and then held her hands and talked and watched TV. They prayed with her eventually and tucked her in for the night.
"He who dwells in the secret place of the Most High, will rest in the shadow of the Almighty" Psalm 91:1
We read some Easter cards that people sent. Or, I should say that I asked mom to read them and she mouthed every word…one from Virginia and Bob, another from Uncle Mike and Aunt Pat, and the last one from Aunt Carol. After she read them all to me, I asked if she wanted to call Aunt Carol to talk and she mouthed, “Yes” but as I was dialing her, dad called. Mom grabbed for the phone when she heard his voice and she listened intently as he spoke…she even conversed with him. After dad said, “Hi,” mom said, “Hi.” When he asked how she was, she told him, “I’m fine.” She answered questions about breakfast too. When dad hung up, we called Aunt Carol. Mom did the same with her, answering questions about how she felt and what she ate…etc. Mom and I did her full physical therapy/range of motion exercises next. I put on some peppy Janet Jackson music and mom counted and helped move her body as we progressed. She was able to count with me to 20 with no problem. It’s too bad she still has the vent and the trach because it prevents us from hearing what she says. As she is, we have to do a lot of lip reading. Near the end of the exercising, mom began to fall asleep on and off…more off than on. When she woke at one point, I put the bed desk on her lap and asked if she wanted to read, she mouthed, “Yes” so I asked if she wanted to read the baseball magazine and she said, “Yes.” I set her up and in between snoozes she read the magazine.
One of the respiratory people spent a lot of time with mom and I this morning. The therapist said that mom had multiple episodes of apnea yesterday and last night and the night before. Her numbers went up to 43 (42 is the highest they like to see in the high end of normal). For this reason, they took her off CPAP mode and put her back on the SMIV mode of the vent. What this means is that the vent breathes more and has a quicker response when mom stops breathing. The CPAP mode of the vent requires mom to breathe more on her own and without a quicker response time for breathing for her during periods of apnea.
Anthony came to see mom next and we both worked on using the bicycle machine for the hands and arms with mom. When we held one hand on it, she was able to hold onto the machine and follow the rotations we moved her in. The respiratory therapist checked mom’s CO2 levels again after an hour of being on the CPAP mode and also after we were working on the exercise hand bike. The therapist said that mom’s levels hadn’t changed which is good because if the CO2 levels went up after exercise, it would mean that mom was not able to exert herself. Since the CO2 levels stayed the same, it meant that mom was able to exert herself without stress on her body. Anthony used the hand bike machine in many creative ways to help mom. One way was to have mom hold the crossbar of the machine and hold on while he pulled the bar further and further away from her…mom did it. Then he used it to have mom hold the bar and reach upward. The aide came to change mom then and wash her up and put her in the chair. The aide said that mom and she laughed because the aide said that while she was putting cream on mom she told mom it was like greasing a turkey and mom laughed really hard. Lunch came (salmon, pears, rice pilaf, and string beans). Mom doesn’t like fishy tasting fish so this wasn’t her favorite meal. She kept falling asleep during lunch…it took forever for her to finish lunch. Predominantly, we fed mom or did hand over hand feeding…once in a while when she woke up, she fed herself. But she would fall asleep in the middle of eating a lot too. When mom wakes up after falling asleep in the middle of things, she picks up right exactly where she last left off in the activity she had been engaging. Mom ate about 1/3 of her lunch. Mom’s dear friends, Florence and Maureen, came to visit this afternoon. She smiled at Florence when she saw her. Florence brought mom an Easter gift and mom grabbed the bag as I untied the bow and took the contents out---a really soft pink rabbit with gingham bows! It was adorable and mom seemed to like it. She had just taken her pink, soft bear earlier today and rubbed it against her cheek. She will enjoy this stuffed animal in the same way. It is probably frustrating for mom to not be able to join the conversation...Carmine, John and Con's cousin who is a speech therapist who works with mom, says we should all just speak normally to mom...maybe a little slower but about the same things we always would because he feels mom knows what is going on around her. Mom slept through much of the visit but listened to us talk whenever she was awake. Dad joined us mid-afternoon. Mom kissed him hello. Mom had periods of shaking in her hands and arms this afternoon and when this happened, her total rate shot from in the 30s to the 50s but went back down on its own. Two other friends from church came to see her briefly too. Mom smiled broadly when she saw them. The ladies stayed and visited with mom and dad for a while this afternoon (they both typically are part of the friends and family crew who enjoy Easter breakfast at mom and dad's). When the aides came to change mom and put her back in bed, the ladies left.
Con and Samantha came to see mom tonight. Dad went to get some dinner and then eventually went home, while the girls stayed with mom. Sammy said that mom was awake but not responsive and didn't want to play games or do anything at all so they did her physical therapy/range of motion exercise and then held her hands and talked and watched TV. They prayed with her eventually and tucked her in for the night.
"He who dwells in the secret place of the Most High, will rest in the shadow of the Almighty" Psalm 91:1
Wednesday, April 20, 2011
Mom Update, April 20, 2011, Wednesday
First, let me say that I included the Stuffed French Toast recipe at the bottom of this post due to the fact that so many of you have written that you want a copy!! Mange!!
Lenny began the day with mom and found her to be sleepy the entire 2 1/2 hours he was with her. He did her physical therapy/range of motion exercises twice while he was there. He said that she would wake up and look around and say a few words, but then would go back to sleep and this repeated awake and asleep through his whole visit.
Dad came next to be with mom but I couldn't get hold of him by phone all day and evening (he is a volunteer fireman these last 54 years so he may have been at a meeting). I will get the "low down" on mom from him tomorrow when I see him. Today was dad's birthday. Thanks for all the prayers for him. Ooops! Dad just called me now. Mom was on and off the vent again today. The head of respiratory put her back on the vent this morning because the therapist said there was a pause in her breathing. But the head of respiratory told dad that mom would be put back on CPAP mode in the afternoon (and did so). The therapist said that if mom fell asleep, she goes back on the vent. Mom has slept during the day and stayed on CPAP mode just fine in the past...this is something new. The therapist said mom falls into a deep sleep and this is why she must go back on the vent when she sleeps. Again, this doesn't make sense at all to me. Whatever. Mom had macaroni and cheese and other things for dinner (dad couldn't remember). He said she was hungry and looking for more food at the end of dinner. He said she gave him a big smile and kissed him and talked a bit. Dad tried to get mom to do the hand held bicycle to exercise her arms but it was difficult to do with only one person because we need to hold her hands onto the machine as she works. He exercised her and did her physical therapy/range of motion on and off all day.
John came to see mom this afternoon and evening. He stayed with her a long while. They talked and watched TV. He put the pregame of the METS game on for her. She told him she loved him twice and he told her too. He did her full physical therapy/range of motion exercises and massaged her feet really well too. He tried to get her to do some activities but she was awake, but tired so she wouldn't do any. They joked a bit too. John tucked her in and prepared her for the night and said a prayer and left.
"Be glad in the Lord, and rejoice." Psalm 32:11
Lenny began the day with mom and found her to be sleepy the entire 2 1/2 hours he was with her. He did her physical therapy/range of motion exercises twice while he was there. He said that she would wake up and look around and say a few words, but then would go back to sleep and this repeated awake and asleep through his whole visit.
Dad came next to be with mom but I couldn't get hold of him by phone all day and evening (he is a volunteer fireman these last 54 years so he may have been at a meeting). I will get the "low down" on mom from him tomorrow when I see him. Today was dad's birthday. Thanks for all the prayers for him. Ooops! Dad just called me now. Mom was on and off the vent again today. The head of respiratory put her back on the vent this morning because the therapist said there was a pause in her breathing. But the head of respiratory told dad that mom would be put back on CPAP mode in the afternoon (and did so). The therapist said that if mom fell asleep, she goes back on the vent. Mom has slept during the day and stayed on CPAP mode just fine in the past...this is something new. The therapist said mom falls into a deep sleep and this is why she must go back on the vent when she sleeps. Again, this doesn't make sense at all to me. Whatever. Mom had macaroni and cheese and other things for dinner (dad couldn't remember). He said she was hungry and looking for more food at the end of dinner. He said she gave him a big smile and kissed him and talked a bit. Dad tried to get mom to do the hand held bicycle to exercise her arms but it was difficult to do with only one person because we need to hold her hands onto the machine as she works. He exercised her and did her physical therapy/range of motion on and off all day.
John came to see mom this afternoon and evening. He stayed with her a long while. They talked and watched TV. He put the pregame of the METS game on for her. She told him she loved him twice and he told her too. He did her full physical therapy/range of motion exercises and massaged her feet really well too. He tried to get her to do some activities but she was awake, but tired so she wouldn't do any. They joked a bit too. John tucked her in and prepared her for the night and said a prayer and left.
"Be glad in the Lord, and rejoice." Psalm 32:11
Tuesday, April 19, 2011
Mom Update, April 19, 2011, Tuesday
I went to the facility very early this morning because I made them another Stuffed French Toast casserole because the whole crew wasn’t there on Sunday morning and I particularly promised 2 CNAs I’d make it for them and they weren’t working over the weekend. Claudia began the day with mom this morning. Mom was asleep when she arrived so she woke mom up by talking to her, putting her hearing aids in, and also by playing some music. Claudia did mom’s full physical therapy/range of motion exercises and then breakfast came. Mom ate a BIG breakfast—cheese omelet, a roll with butter, oatmeal and a whole banana. Using hand over hand prompting, mom peeled the banana. As the music played, mom mouthed, “Who’s playing the music?” She was very talkative. Claudia was on her cell phone with Ava talking about the movie, “I am Sam” and mom mouthed, “I am Sam?” She also told Claudia she had to go to the bathroom a few times as well. After breakfast, Claudia showed mom body part picture cards and one was of a nose and when Claudia asked her, “What’s this?” mom mouthed, “Somebody’s nose. I don’t know.” Claudia also did the Sounds Around the Home CD with mom. With this CD, the person listens to the sounds and tries to find the coinciding picture…Claudia showed her the doorbell picture and mom said, “home” (it is a picture of her doorbell at home). When mom heard the sound of the telephone on the CD, she mouthed, “Ring a bell” but when she saw the next picture, a fireplace, mom mouthed, “telephone” (this could just be delayed processing). When she heard the sound of ice cubes in a glass and saw the picture, she mouthed, “ICE.” For the sound of a vacuum, Claudia gave her a phonemic cue ‘Vvvv….’ and mom mouthed, “Vacuum.” For the flushing toilet sound, mom mouthed, “bathroom” and “someone on the toilet.” Claudia cued her with a ‘D’ sound for the picture of the door and the sound was of a door opening and closing and Claudia said, “a door…” and mom mouthed, “opening.” Then Claudia said, “A door opening and….” Mom mouthed, “Closing.”
I arrived briefly again around 11 and mom was still in bed but she was eating her lunch (sausage, peppers and onions with a roll and some pasta). She was feeding herself in between the aide feeding her as well. Mom was very, very alert and conversational---I think that’s the first time I can truly use that word to describe her!! She was communicating in an interactive way. The recreation therapist and I walked into the room together and mom turned to us as we called to her and said, “Hi.” The recreation therapist asked her how she was and mom mouth, “Hi, I’m fine. How are you?” The therapist then asked mom if she wanted to play Nintendo Wii Bowling with them and mom said, “That sounds good. Yes.” I had to leave then to help Lenny register for classes for next semester. Terry was there though and she stayed with mom. When Terry had arrived, she brought her laptop to play games with mom on—Hidden Pictures is one of the games and mom used to love this game before the stroke. Terry said that mom played the Hidden Picture game on her laptop. Terry scaffolded the activity for mom by pointing to areas to look in and by moving the arrow on the mouse pad for pad. Terry said mom was pointing to different things on the screen. Anthony said mom ate about 2/3 of her lunch. Then, mom fell asleep. Anthony left and Terry and Dad went with mom later on to the recreation room to play Nintendo Wii bowling and golfing. The recreation therapist said mom did well playing the games today.
When I came back to see mom around dinner time, she was in her wheelchair and putting buttons into the slot of the tall, plastic container---it took her a long time to do this, but she was doing it!! Dad had it all set up for her. The head of respiratory put mom back on the vent today from the CPAP mode because he said her CO2 levels were “a tad above my comfort zone.” It is exasperating!!!! Once she is off the vent, we can hear what she says when she talks and she can go to a real rehab center!! I pray God heals her fully and enough to get off the vent. One of the other respiratory therapists said that mom’s norm seems to be in the 30s and 40s…mostly around 43 (total rate). The head of respiratory doesn’t agree though. The other respiratory therapist put her back on the CPAP mode for a few hours. You can see a real, definite difference in mom when she is on the CPAP mode…she is more tired and has to exert all her energy into breathing (for the most part). She is perkier on the vent and more talkative too.
Claudia went back tonight to tuck mom in for bed. They read a baseball magazine together and then mom goofed around with Claudia. Mom nodded toward the TV as if to ask, “What’s on TV?” so Claudia asked if that’s what she wanted to know and mom mouthed, “Yes” so Claudia told her. Mom is using more body language to convey what she wants. As Claudia read the magazine, mom was staring at her and Claudia asked, “What are you looking at?” mom mouthed, “I’m looking at you.”Claudia and mom watched TV and then Claudia tucked her into bed and prayed with mom and left.
“May the Lord make your love increase and overflow for each other and for everyone else” 1 Thessalonians 3:12
I arrived briefly again around 11 and mom was still in bed but she was eating her lunch (sausage, peppers and onions with a roll and some pasta). She was feeding herself in between the aide feeding her as well. Mom was very, very alert and conversational---I think that’s the first time I can truly use that word to describe her!! She was communicating in an interactive way. The recreation therapist and I walked into the room together and mom turned to us as we called to her and said, “Hi.” The recreation therapist asked her how she was and mom mouth, “Hi, I’m fine. How are you?” The therapist then asked mom if she wanted to play Nintendo Wii Bowling with them and mom said, “That sounds good. Yes.” I had to leave then to help Lenny register for classes for next semester. Terry was there though and she stayed with mom. When Terry had arrived, she brought her laptop to play games with mom on—Hidden Pictures is one of the games and mom used to love this game before the stroke. Terry said that mom played the Hidden Picture game on her laptop. Terry scaffolded the activity for mom by pointing to areas to look in and by moving the arrow on the mouse pad for pad. Terry said mom was pointing to different things on the screen. Anthony said mom ate about 2/3 of her lunch. Then, mom fell asleep. Anthony left and Terry and Dad went with mom later on to the recreation room to play Nintendo Wii bowling and golfing. The recreation therapist said mom did well playing the games today.
When I came back to see mom around dinner time, she was in her wheelchair and putting buttons into the slot of the tall, plastic container---it took her a long time to do this, but she was doing it!! Dad had it all set up for her. The head of respiratory put mom back on the vent today from the CPAP mode because he said her CO2 levels were “a tad above my comfort zone.” It is exasperating!!!! Once she is off the vent, we can hear what she says when she talks and she can go to a real rehab center!! I pray God heals her fully and enough to get off the vent. One of the other respiratory therapists said that mom’s norm seems to be in the 30s and 40s…mostly around 43 (total rate). The head of respiratory doesn’t agree though. The other respiratory therapist put her back on the CPAP mode for a few hours. You can see a real, definite difference in mom when she is on the CPAP mode…she is more tired and has to exert all her energy into breathing (for the most part). She is perkier on the vent and more talkative too.
Claudia went back tonight to tuck mom in for bed. They read a baseball magazine together and then mom goofed around with Claudia. Mom nodded toward the TV as if to ask, “What’s on TV?” so Claudia asked if that’s what she wanted to know and mom mouthed, “Yes” so Claudia told her. Mom is using more body language to convey what she wants. As Claudia read the magazine, mom was staring at her and Claudia asked, “What are you looking at?” mom mouthed, “I’m looking at you.”Claudia and mom watched TV and then Claudia tucked her into bed and prayed with mom and left.
“May the Lord make your love increase and overflow for each other and for everyone else” 1 Thessalonians 3:12
Monday, April 18, 2011
Mom Update, April 18, 2011, Monday
Lenny began the day with mom this morning. He said she ate French Toast for breakfast and predominantly fed herself. When Lenny and the CNA asked mom how the French Toast tasted, she mouthed, “DELICIOUS!!!” Mom also kept telling Lenny she needed to “go to the bathroom” and when he told her it’s ok to go, she mouthed, “I can’t.” He thought, after a while, that perhaps she was constipated so he asked the nurse to check mom out. The nurse said she seemed to be fine but that they’d keep an eye on her. Lenny said that mom was talking a lot today but he couldn’t make everything out that she was mouthing because she was speaking too quickly and so much. Mom also tried to tell Lenny that her hearing aids were not working and even said something about the battery. He said that, at one point, she put her hand on his mouth and then on her ear and shook her head, ‘no.’ Lenny checked them out and they were fine.
I forgot to mention that, yesterday, dad brought mom some kielbasa from the Ukrainian Market and some peorogies too (4). Mom ate all the food eagerly!!! She loved it!
Terry saw mom next and spent the day with her (she has the week off from work). Terry said mom ate lunch in bed today so they must have been short staffed again. Mom had a turkey sandwich, peaches, and beets salad for lunch. She kept trying to feed herself but the CNA was in a hurry so the CNA mostly fed mom. After lunch, mom was moved to the wheelchair. Terry massaged her hands and opened her fingers and stretched them a few times. Mom and Terry did the MEGA BLOCKS and mom tried to connect them alone but couldn’t. Terry modeled the activity for her. They watched TV and then Terry had mom do the large, plastic buttons and the container. Donna and Aunt Peggy came next and Donna worked with the buttons and the container with mom. Mom put one or 2 buttons into the container but Donna had to move the slot to the container close to mom in order for mom to complete the task. Mom was able to pick up the buttons by sliding them off the table and then sort of catching them. Donna said that mom talked ALOT but she couldn’t make out much of what mom mouthed to her. Donna also did the wooden vegetable pieces and the skewers with mom. Donna moved the skewer close to mom’s hand holding the wooden vegetable piece and then mom placed the veggie piece onto the skewer. Donna and Aunt Peggy talked to mom a lot and she to them. They looked at the visual dictionary with mom and she read the words and looked at the pictures. Mom fiddled with the pages using both hands and she also turned the pages as well. Terry did the table squeeze manipulatives on the table with mom too. Terry also showed mom some books and an animal information book on her NOOK. Mom watched and looked intently. Claudia stretched mom’s arms. As Claudia stretched mom’s arms, mom mouthed, “Owwww” because it hurt so much but then on the second round, mom lifted her own arm herself. Mom also gave her arm to Claudia and mouthed, “PULL” because she wanted Claudia to work on her and do more therapy. Claudia did something silly or fresh and Donna told mom to stick her tongue out at her and mom did it!! Donna said mom was very alert and present and appropriate. Mom fell asleep just shortly after I arrived. She did smile at me when I said hello.
Dad had to bring MORE paperwork to the Medicaid person. The Medicaid people want STILL MORE paperwork!! Heaven help us! Mom woke up just as dad arrived around 4 p.m. We did some crossword clues next, mom and I:
“Richard Nixon’s Vice President. Spiro….” Mom mouthed, “Agnew”
“Little children. Starts with a T…” Mom mouthed, “Tot”
“Where do you put a bouquet of flowers? In a V…. Starts with a V….” Mom: “Vase”
I asked mom how to spell suede and she mouthed, “S-W-A….”
She didn’t seem much like she wanted to do any more so we stopped. It was late in the day any way. Dinner came and mom had chicken ceasar salad with dressing and mashed potatoes and broccoli. Though I had my trepidations, she did really well with the salad. The evening CNA knows the Jackson family really well; they are our dear friends for years and years. This CNA takes such great care of mom. This CNA is so tender and caring---mom could be this person’s mother. I left to have dinner with Lenny and dad stayed with mom.
Claudia said that mom was amazing tonight. She said to mom, “Hey Mom, you look great!! Are you OK?” and mom said, “No” and took Claudia’s hand and touched her ear so Claudia investigated and saw that mom’s hearing aid came out of her ear. Claudia fixed the hearing aid and asked if mom was OK now and mom mouthed, “Yes.” Claudia came after class tonight to be with mom. Claudia said that mom was exploring one of her long, tubular stuffed dogs and mom took the dog out of her left hand with her right and fixed the ear of the dog with her left hand. A lot of switching back and forth between hands. She said that mom mouthed the entire Our Father with Claudia as they prayed together tonight. Claudia asked mom, “Do you know how much I love you?” and mom mouthed, “How much?” At one point, mom was feeling Claudia’s face so Claudia tried to make it a teaching moment by telling mom, “Touch my mouth” but mom wouldn’t do it and ignored her. So Claudia said, “Touch my nose” and mom ignored her again. Claudia said, “What’s the matter? Am I insulting you? Is that too easy?” and mom mouthed, “YES!” in a disgusted manner so Claudia, being Claudia (we love her!!) said to mom, “OK then, touch my clavicle” and mom burst out laughing!!They watched the movie, “Once on This Island” which is a play that Jean and Ava acted in. They watched the kids sing and Claudia asked mom, “Who is that?” and mom mouthed, “Jean and Ava.” They watched Dancing with the Stars and Claudia alternated between watching the show at points where Claudia wanted to watch it and singing to songs on the IPOD with mom.
Ava found a new issue of US News and World Report that is all about the brain and strokes…. She bought it for Claudia and Claudia began to read it and found that much of what we are doing with mom is correct and important and making a difference in her recovery. This is comforting to know.
“Draw near to God and He will draw near to you” James 4:8
I forgot to mention that, yesterday, dad brought mom some kielbasa from the Ukrainian Market and some peorogies too (4). Mom ate all the food eagerly!!! She loved it!
Terry saw mom next and spent the day with her (she has the week off from work). Terry said mom ate lunch in bed today so they must have been short staffed again. Mom had a turkey sandwich, peaches, and beets salad for lunch. She kept trying to feed herself but the CNA was in a hurry so the CNA mostly fed mom. After lunch, mom was moved to the wheelchair. Terry massaged her hands and opened her fingers and stretched them a few times. Mom and Terry did the MEGA BLOCKS and mom tried to connect them alone but couldn’t. Terry modeled the activity for her. They watched TV and then Terry had mom do the large, plastic buttons and the container. Donna and Aunt Peggy came next and Donna worked with the buttons and the container with mom. Mom put one or 2 buttons into the container but Donna had to move the slot to the container close to mom in order for mom to complete the task. Mom was able to pick up the buttons by sliding them off the table and then sort of catching them. Donna said that mom talked ALOT but she couldn’t make out much of what mom mouthed to her. Donna also did the wooden vegetable pieces and the skewers with mom. Donna moved the skewer close to mom’s hand holding the wooden vegetable piece and then mom placed the veggie piece onto the skewer. Donna and Aunt Peggy talked to mom a lot and she to them. They looked at the visual dictionary with mom and she read the words and looked at the pictures. Mom fiddled with the pages using both hands and she also turned the pages as well. Terry did the table squeeze manipulatives on the table with mom too. Terry also showed mom some books and an animal information book on her NOOK. Mom watched and looked intently. Claudia stretched mom’s arms. As Claudia stretched mom’s arms, mom mouthed, “Owwww” because it hurt so much but then on the second round, mom lifted her own arm herself. Mom also gave her arm to Claudia and mouthed, “PULL” because she wanted Claudia to work on her and do more therapy. Claudia did something silly or fresh and Donna told mom to stick her tongue out at her and mom did it!! Donna said mom was very alert and present and appropriate. Mom fell asleep just shortly after I arrived. She did smile at me when I said hello.
Dad had to bring MORE paperwork to the Medicaid person. The Medicaid people want STILL MORE paperwork!! Heaven help us! Mom woke up just as dad arrived around 4 p.m. We did some crossword clues next, mom and I:
“Richard Nixon’s Vice President. Spiro….” Mom mouthed, “Agnew”
“Little children. Starts with a T…” Mom mouthed, “Tot”
“Where do you put a bouquet of flowers? In a V…. Starts with a V….” Mom: “Vase”
I asked mom how to spell suede and she mouthed, “S-W-A….”
She didn’t seem much like she wanted to do any more so we stopped. It was late in the day any way. Dinner came and mom had chicken ceasar salad with dressing and mashed potatoes and broccoli. Though I had my trepidations, she did really well with the salad. The evening CNA knows the Jackson family really well; they are our dear friends for years and years. This CNA takes such great care of mom. This CNA is so tender and caring---mom could be this person’s mother. I left to have dinner with Lenny and dad stayed with mom.
Claudia said that mom was amazing tonight. She said to mom, “Hey Mom, you look great!! Are you OK?” and mom said, “No” and took Claudia’s hand and touched her ear so Claudia investigated and saw that mom’s hearing aid came out of her ear. Claudia fixed the hearing aid and asked if mom was OK now and mom mouthed, “Yes.” Claudia came after class tonight to be with mom. Claudia said that mom was exploring one of her long, tubular stuffed dogs and mom took the dog out of her left hand with her right and fixed the ear of the dog with her left hand. A lot of switching back and forth between hands. She said that mom mouthed the entire Our Father with Claudia as they prayed together tonight. Claudia asked mom, “Do you know how much I love you?” and mom mouthed, “How much?” At one point, mom was feeling Claudia’s face so Claudia tried to make it a teaching moment by telling mom, “Touch my mouth” but mom wouldn’t do it and ignored her. So Claudia said, “Touch my nose” and mom ignored her again. Claudia said, “What’s the matter? Am I insulting you? Is that too easy?” and mom mouthed, “YES!” in a disgusted manner so Claudia, being Claudia (we love her!!) said to mom, “OK then, touch my clavicle” and mom burst out laughing!!They watched the movie, “Once on This Island” which is a play that Jean and Ava acted in. They watched the kids sing and Claudia asked mom, “Who is that?” and mom mouthed, “Jean and Ava.” They watched Dancing with the Stars and Claudia alternated between watching the show at points where Claudia wanted to watch it and singing to songs on the IPOD with mom.
Ava found a new issue of US News and World Report that is all about the brain and strokes…. She bought it for Claudia and Claudia began to read it and found that much of what we are doing with mom is correct and important and making a difference in her recovery. This is comforting to know.
“Draw near to God and He will draw near to you” James 4:8
Sunday, April 17, 2011
Mom Update, April 17, 2011, Sunday
I began the day with mom this morning---bright and early. I was shooting to get there no later than 7:30 a.m. because I made a “stuffed French toast casserole” (and homemade sauce for it) for the staff on mom’s unit. Mom was just waking up when I got there. She gave me a big smile when I said hello and when I asked how she is, she said, “I’m fine.” She was perky and alert. She began to eat her scrambled eggs and white bread independently. I told her that we still had to write what she wants to say in dad’s birthday card, she asked, “Is his birthday today?” I told her it’s Wednesday. I began to play music…church music and mom loved it.
Claudia joined us and brought mom a wheat germ omelet and fresh fruit (melons and watermelon). Mom was happy to see her and to eat the omelet. I asked mom what Claudia brought and she mouthed, “Wheat germ omelet.” We talked and she ate. She had started eating independently, but then sort of faded and became sleepy (though still alert and present). I fed her the rest of her food or assisted her with eating by putting the food on the fork for her. Claudia and I sang with her as she ate, and now and then, she mouthed the words with us. Claudia and I were on either side of mom singing. We began to listen to John Denver, and Glen Campbell. Mom knew the name of the songs and that John Denver was singing.
Anthony, Con and the kids came next. The kids read mom their report cards and mom said, “Get out!!!” like, “get out of town!!” She was the center of our family circle; we were all gathered around her. Claudia brought the Newsday paper for mom. We all sat around and read various sections of the paper…including mom. We set a section of the paper up on the easel for her to see and read. Con sat beside mom and helped her turn the pages and read on and off. When the nurse came in and asked mom if it was Ok to suction her, mom made a face and said, “I guess.” Sammy sat beside mom and held her hand while she was suctioned. When she was finished, Sammy asked her to give her a high 5 and mom did. Sammy brought her Confirmation dress to show mom too. Sam put the dress on and showed mom. Mom mouthed, “Very pretty.” Anthony worked on mom’s legs. Mom threw kisses to Anthony. Claudia and I left and dad and Terry joined Ant, Con and the kids. They said she was awake and present and alert but not too talkative. Dad said mom ate her whole lunch and needed only minimal assistance.
We all went to see Jean’s last “school” play---he was in “The Producers” at Five Towns College. He was awesome as always. We are all so proud of him. Afterwards, we all went out to eat. Then I dropped Dad and Claudia back off by mom and Lenny and I went home. Dad and Claudia found mom asleep and prayed over her and sat with her a bit and then left.
“The Lord will give grace and glory” Psalm 84:11
Claudia joined us and brought mom a wheat germ omelet and fresh fruit (melons and watermelon). Mom was happy to see her and to eat the omelet. I asked mom what Claudia brought and she mouthed, “Wheat germ omelet.” We talked and she ate. She had started eating independently, but then sort of faded and became sleepy (though still alert and present). I fed her the rest of her food or assisted her with eating by putting the food on the fork for her. Claudia and I sang with her as she ate, and now and then, she mouthed the words with us. Claudia and I were on either side of mom singing. We began to listen to John Denver, and Glen Campbell. Mom knew the name of the songs and that John Denver was singing.
Anthony, Con and the kids came next. The kids read mom their report cards and mom said, “Get out!!!” like, “get out of town!!” She was the center of our family circle; we were all gathered around her. Claudia brought the Newsday paper for mom. We all sat around and read various sections of the paper…including mom. We set a section of the paper up on the easel for her to see and read. Con sat beside mom and helped her turn the pages and read on and off. When the nurse came in and asked mom if it was Ok to suction her, mom made a face and said, “I guess.” Sammy sat beside mom and held her hand while she was suctioned. When she was finished, Sammy asked her to give her a high 5 and mom did. Sammy brought her Confirmation dress to show mom too. Sam put the dress on and showed mom. Mom mouthed, “Very pretty.” Anthony worked on mom’s legs. Mom threw kisses to Anthony. Claudia and I left and dad and Terry joined Ant, Con and the kids. They said she was awake and present and alert but not too talkative. Dad said mom ate her whole lunch and needed only minimal assistance.
We all went to see Jean’s last “school” play---he was in “The Producers” at Five Towns College. He was awesome as always. We are all so proud of him. Afterwards, we all went out to eat. Then I dropped Dad and Claudia back off by mom and Lenny and I went home. Dad and Claudia found mom asleep and prayed over her and sat with her a bit and then left.
“The Lord will give grace and glory” Psalm 84:11
Saturday, April 16, 2011
Mom Update, April 16, 2011, Saturday
I began the day with mom this morning bright and early. When I arrived, mom was out like a light!! Mouth open, drooling, sound asleep. I tried to wake her but no luck. The breakfast cart was just brought to her unit and breakfast would be served soon. I talked to her, opened her eyelids, wet her face with a cold wash cloth, did her full physical therapy/range of motion exercises, put her hearing aids in, played some loud, peppy ragtime music…nothing. She would briefly open her eyes but shut them and go back to sleep very quickly again. Her CNA arrived with her breakfast and she and another CNA pulled mom up high in the bed and straightened her out well then the CNA called respiratory to suction mom before eating. This CNA was with mom many months ago in the 2nd room she was in and she loves mom so much. She primps over her, and treats and cares for her so well. I couldn’t wake mom for anything!! I kept doing these things over and over. When the respiratory therapist came to suction mom, mom sort of woke up so I began to feed her some scrambled eggs (she had scrambled eggs and oatmeal, orange juice, coffee, and a croissant). Though I predominantly fed mom her meal, she was grabbing the spoon from me to feed herself by the end of the meal. Thank God. As she ate, I talked to her about my morning. Claudia usually is with mom in the mornings and Claudia usually talks to mom and tells her what she made for dinner the night before. As I fed mom and chattered, mom looked at me and mouthed, “So what did you make for dinner last night?” but she said it so quickly, all I could understand was, “So what did you make.” I repeated what I knew she said and then asked her to repeat the rest again. She repeated the phrase 3 times, but quickly. Finally, when I asked her to repeat it again for the 4th time, mom looked at me and slowly enunciated every word!!!! She mouthed, “So (pause) what (pause) did (pause) you (pause) make (pause) for (pause) dinner (pause) last (pause) night? (pause)!!!!” I told her I didn’t cook dinner last night and she gave me a surprised and horrified look!!! I told her I ate in a cute, little Italian restaurant in Soho last night because I went with Claudia, John, Aunt Carol and Alyssa (Jean’s girlfriend) to see an independent film that Jean and John were in!! The film was playing in the Soho Film Festival!! Mom raised her eyebrows and mouthed, “Wow.” She listened intently as I told her about it all. At one point, someone slammed the door to mom’s room by accident and mom jumped and gave me a startled, frightened, surprised look!! This is great!! She hasn’t done that in a while!!I asked her if we should call Claudia to find out what she made for dinner and mom mouthed, “Yes” so I dialed and she grabbed the phone from me and put it to her ear (I told Claudia it was mom and to talk to her). When I could hear Claudia’s voice, I asked mom who was on the phone and she mouthed, “Claudia” and then I asked her what Claudia was saying and mom mouthed, “The show” (she WAS talking about the show!). I told mom to ask Claudia what she made for dinner and mom mouthed it all and put her mouth close to the mouthpiece of the phone and mouthed it slowly and carefully!! After she spoke to Claudia, I asked if we should call Anthony and Con and she mouthed, “Yes” so we did. Samantha answered the phone (I yelled that she should talk to Nonny and she did) and when I heard her voice, I asked mom who was on the phone and she mouthed, “Samantha” and then Anthony got on the phone and when I asked again, mom mouthed, “Anthony.” Next, we began to talk to the CNA about dad’s birthday coming on Wednesday and mom mouthed, “Yes” and then the CNA asked how old dad would be. I said 79 and mom mouthed, “Yes” again. The CNA marveled and said that dad doesn’t look 79 and that he looks younger and mom mouthed, “Yes, he does look young” and smiled. I asked mom if we should have a birthday cake for dad on Easter and she mouthed, “Yes a cake” and then I asked her if we should secretly get dad a card and gift from her and she smiled and said, “Yes.” I told her to tell me what she wants to say in the card and that I would write it for her. She liked this idea. I asked her what she wanted to say and she mouthed, “Dear Jean” and fell asleep again! She kept falling asleep on and off. When she woke up again seconds later she mouthed, “What was I going to say again?” She did this twice. After she ate, she burped at 3 different times and said, “Excuse me” after each one! She read my shirt “Soho” and then we talked about when Lenny was young and didn’t eat very many things and I began to name the things he used to eat and mom mouthed, “Do you remember other things?”We did the calendar after breakfast was over and I asked mom what month it is and she said, “I don’t know” so I sang, “January, February, March…” and she mouthed, “April.” Then I asked her what day it was and did the same song-type of thing starting at Sunday and stopping after I sang Friday and mom mouthed, “Saturday.” I asked her the number of the day and mom didn’t know so I said, “Yesterday was the 15th so today is the…” and mom mouthed, “14th!!” I said, “Good 14 does come before 15 but what comes after 15?” Mom said, ‘15” and I said, “Not 15…after 15” and mom said, “16.” I took out the IPAD to sing songs with her but my oil man called to say he was delivering oil to my house so I had to stop and leave. I kissed her good-bye and asked if she wanted the TV or music and she picked music.
Lenny and I returned about 1 ½ hours later and mom was trying to eat lunch (fish, spinach and rice and tomato). Mom was playing with the food with her fork and making faces at the plate. We asked her why she was making faces and she mouthed, “Because I don’t like this food.” We kept asking her why she didn’t like it and she said, ‘Because it isn’t good.” We were trying to figure out what kind of fish it is and we said, “Maybe it’s goldfish” and mom said, “That’s disgusting.” Mom’s CNA went to get something different for mom to eat. She came back with pasta and peas and carrots and cheese in a brown sauce. Lenny told mom to thank the CNA---funny! Role reversal!! Hahaha!! Mom thanked the CNA. I tried to help mom eat by giving her a fork full of food and mom pushed my hand away and said, “Stop that!” in an annoyed way! “I’ll do it.” I was trying to coax mom to eat and she said, “I don’t want this.” I said, “but the CNA just went to get this special for you.” She said, “I don’t care. I don’t want it” She dropped a bit of food off the fork and Lenny said, “That’s ok nonny. Try again” so I said, “Yeah, how does it go? If at first you don’t succeed…” Mom mouthed, “Try try again.” As we talked to her and she ate, she became overwhelmed a few times and seemed to get confused and she put her utensils in her cup of juice and then she poured her applesauce into her pasta. We ended lunch shortly after that. Lenny cleaned her table when she finished and then mom grabbed a tissue and began to help Lenny clean the table. She grabbed the tissue aggressively and pulled it from Lenny. Anthony and Con came in and so did a recreation therapist. She told the therapist, “That’s Anthony.” We all talked and laughed. Anthony and Con ran to the store for supplies for mom and then mom fell asleep for a few minutes. When they returned, mom had a brief episode of belly breathing. Usually this happens when she needs to be suctioned or when she has a plug of mucus stuck in her chest. It lasted about 5-10 minutes or maybe less...the nurse came in to do her trach care while this happened and said that it is actually a good thing that was happening because it meant mom was breathing over the vent on her own and that it was difficult to do but she was doing it (this is what the respiratory person told us the other day as well). All of mom's numbers were good during this time but she looked like she was struggling. We ended up calling a respiratory person too, in addition to the nurse, and the therapist put mom on SMIV vent mode (vent breathing for her) for about 1/2 hour ---at which time, mom's breathing evened out and became typical again. Once she stabilized, mom was put back on the CPAP mode again. Just as the respiratory person arrived, mom's total rate went into the 80s...not good...should be in the upper 20s and 30s. So it was a good thing the respiratory person arrived in time to help mom out. When Lenny and I left, dad and Terry joined Anthony and Con. They said mom was awake and asleep alternately and did some laughing and talking but was mostly peaceful and quiet. Dad said she ate her dinner and Terry said she tried to feed herself too. Dad and I went to dinner and then, when he returned, mom was asleep. He sat with her and then tucked her in for the night and went home.
Please pray for dad, his birthday is Wednesday and in addition to that, he (as well as us all) is used to the big, beautiful meal and celebration mom prepares for Easter with our family and friends...so please keep dad in prayer. Thanks.
"I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."Psalm 91:2
Lenny and I returned about 1 ½ hours later and mom was trying to eat lunch (fish, spinach and rice and tomato). Mom was playing with the food with her fork and making faces at the plate. We asked her why she was making faces and she mouthed, “Because I don’t like this food.” We kept asking her why she didn’t like it and she said, ‘Because it isn’t good.” We were trying to figure out what kind of fish it is and we said, “Maybe it’s goldfish” and mom said, “That’s disgusting.” Mom’s CNA went to get something different for mom to eat. She came back with pasta and peas and carrots and cheese in a brown sauce. Lenny told mom to thank the CNA---funny! Role reversal!! Hahaha!! Mom thanked the CNA. I tried to help mom eat by giving her a fork full of food and mom pushed my hand away and said, “Stop that!” in an annoyed way! “I’ll do it.” I was trying to coax mom to eat and she said, “I don’t want this.” I said, “but the CNA just went to get this special for you.” She said, “I don’t care. I don’t want it” She dropped a bit of food off the fork and Lenny said, “That’s ok nonny. Try again” so I said, “Yeah, how does it go? If at first you don’t succeed…” Mom mouthed, “Try try again.” As we talked to her and she ate, she became overwhelmed a few times and seemed to get confused and she put her utensils in her cup of juice and then she poured her applesauce into her pasta. We ended lunch shortly after that. Lenny cleaned her table when she finished and then mom grabbed a tissue and began to help Lenny clean the table. She grabbed the tissue aggressively and pulled it from Lenny. Anthony and Con came in and so did a recreation therapist. She told the therapist, “That’s Anthony.” We all talked and laughed. Anthony and Con ran to the store for supplies for mom and then mom fell asleep for a few minutes. When they returned, mom had a brief episode of belly breathing. Usually this happens when she needs to be suctioned or when she has a plug of mucus stuck in her chest. It lasted about 5-10 minutes or maybe less...the nurse came in to do her trach care while this happened and said that it is actually a good thing that was happening because it meant mom was breathing over the vent on her own and that it was difficult to do but she was doing it (this is what the respiratory person told us the other day as well). All of mom's numbers were good during this time but she looked like she was struggling. We ended up calling a respiratory person too, in addition to the nurse, and the therapist put mom on SMIV vent mode (vent breathing for her) for about 1/2 hour ---at which time, mom's breathing evened out and became typical again. Once she stabilized, mom was put back on the CPAP mode again. Just as the respiratory person arrived, mom's total rate went into the 80s...not good...should be in the upper 20s and 30s. So it was a good thing the respiratory person arrived in time to help mom out. When Lenny and I left, dad and Terry joined Anthony and Con. They said mom was awake and asleep alternately and did some laughing and talking but was mostly peaceful and quiet. Dad said she ate her dinner and Terry said she tried to feed herself too. Dad and I went to dinner and then, when he returned, mom was asleep. He sat with her and then tucked her in for the night and went home.
Please pray for dad, his birthday is Wednesday and in addition to that, he (as well as us all) is used to the big, beautiful meal and celebration mom prepares for Easter with our family and friends...so please keep dad in prayer. Thanks.
"I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."Psalm 91:2
Mom Update, April 15, 2011, Friday
Claudia began the day with mom this morning and found mom asleep. Mom was sound asleep even through her physical therapy/range of motion exercises. No matter what Claudia did, she couldn't wake mom up. Her breakfast came and still she couldn't wake mom. Claudia left for work . The CNAs were trying to wake mom too and couldn't. They are going to wash mom and dress her and get her in the wheelchair and try to get her to eat. They told Claudia that they will not throw mom's breakfast away--they will hang onto it and try to get her to eat when she wakes up.
Yesterday's missing pieces: Claudia also said that yesterday, mom's friend, Rita, was talking and mom was listening intently. When Rita went to leave mom made the sign of the cross as though she connected Rita to church. Mom explored the sensory toys on the tray as they talked. When Maureen, mom's other friend, came yesterday, mom was happy to see her. Claudia took out the megablocks and mom tried to play with the blocks nonchalantly while they all talked to Maureen. Dad made mom a stuffed pepper for dinner last night and brought it to her. Mom ate it so fast that she started to choke and had to be suctioned several times. Claudia tried the IPAD last night too but mom was too tired and fell asleep.
Dad and Anthony went to see the woman who is filing all the Medicaid paperwork for us. Dad had gathered more paperwork to bring to her. The Medicaid paperwork is a nightmare!!! I know I have said it already, but keep 5 years of receipts ready and labeled and available for use. It cuts back on the work in an emergency situation. When I came to see mom today, she was just starting lunch. Her CNA had the TV on really loud so that mom would stay awake. Mom didn’t wake up to eat breakfast. She was too sleepy. I had to feed mom her lunch. Her nose was running wildly during her meal as well (food allergy?). Mom ate turkey ala king, peas and carrots, apple crisp (soft inner section only), juice and a biscuit. She ate everything, but it appeared that at times she was sleeping as she ate. When she finished lunch, I put the headphones on with some spiritual music on the IPAD. Mom’s respiratory rates have not been good today…kind of high (40s as per the vent reading). The pulmonologist came to see mom and said that she sounded like maybe she had aspirated a little based on listening to her chest through the stethoscope. He also questioned why mom is using a straw to drink---he said it is not the best to do when on a vent and asked if the speech person ok’d it. They checked and found that the speech person said it was OK, even though the respiratory people felt it is not good to use for thickened liquids and/or when on a vent (could promote aspiration). I am thinking that we will just try not to use the straws at all. After mom was changed, her rate went down to the 30s again…this is good. She fell asleep listening to music with the headphones. I made the executive decision to let her rest---it takes a lot more energy then we know to breath, eat, drink and exert independence in doing so. Mom’s vent is still on CPAP mode, thank God. But, as much as I know you all do, PLEASE PRAY THAT MOM’S BREATHING IMPROVES SO SHE GETS OFF THE VENT ASAP. Thanks. Any time mom was awake so far during my visit, she has had periods of shaking (her rate goes to the high 30s and 40s when she shook). I have been holding her hands, praying over her, rubbing her back and telling her that this is a battle and she is doing great and fighting hard and that she’ll be through this battle soon enough. I feel the need to comfort and encourage her today.
This afternoon, Sister Alice, from mom’s church, came to visit. Mom slept pretty much the whole time Sister Alice visited. She woke occasionally and stared at her as we all spoke, but she mostly slept. Sister told mom about all the prayers that she brought with her for mom.
After Sister Alice left, mom was put back in bed. Dad said she ate her whole dinner but did not feed herself. She fell back to sleep as soon as she finished eating.
"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." Isaiah 30:21
Yesterday's missing pieces: Claudia also said that yesterday, mom's friend, Rita, was talking and mom was listening intently. When Rita went to leave mom made the sign of the cross as though she connected Rita to church. Mom explored the sensory toys on the tray as they talked. When Maureen, mom's other friend, came yesterday, mom was happy to see her. Claudia took out the megablocks and mom tried to play with the blocks nonchalantly while they all talked to Maureen. Dad made mom a stuffed pepper for dinner last night and brought it to her. Mom ate it so fast that she started to choke and had to be suctioned several times. Claudia tried the IPAD last night too but mom was too tired and fell asleep.
Dad and Anthony went to see the woman who is filing all the Medicaid paperwork for us. Dad had gathered more paperwork to bring to her. The Medicaid paperwork is a nightmare!!! I know I have said it already, but keep 5 years of receipts ready and labeled and available for use. It cuts back on the work in an emergency situation. When I came to see mom today, she was just starting lunch. Her CNA had the TV on really loud so that mom would stay awake. Mom didn’t wake up to eat breakfast. She was too sleepy. I had to feed mom her lunch. Her nose was running wildly during her meal as well (food allergy?). Mom ate turkey ala king, peas and carrots, apple crisp (soft inner section only), juice and a biscuit. She ate everything, but it appeared that at times she was sleeping as she ate. When she finished lunch, I put the headphones on with some spiritual music on the IPAD. Mom’s respiratory rates have not been good today…kind of high (40s as per the vent reading). The pulmonologist came to see mom and said that she sounded like maybe she had aspirated a little based on listening to her chest through the stethoscope. He also questioned why mom is using a straw to drink---he said it is not the best to do when on a vent and asked if the speech person ok’d it. They checked and found that the speech person said it was OK, even though the respiratory people felt it is not good to use for thickened liquids and/or when on a vent (could promote aspiration). I am thinking that we will just try not to use the straws at all. After mom was changed, her rate went down to the 30s again…this is good. She fell asleep listening to music with the headphones. I made the executive decision to let her rest---it takes a lot more energy then we know to breath, eat, drink and exert independence in doing so. Mom’s vent is still on CPAP mode, thank God. But, as much as I know you all do, PLEASE PRAY THAT MOM’S BREATHING IMPROVES SO SHE GETS OFF THE VENT ASAP. Thanks. Any time mom was awake so far during my visit, she has had periods of shaking (her rate goes to the high 30s and 40s when she shook). I have been holding her hands, praying over her, rubbing her back and telling her that this is a battle and she is doing great and fighting hard and that she’ll be through this battle soon enough. I feel the need to comfort and encourage her today.
This afternoon, Sister Alice, from mom’s church, came to visit. Mom slept pretty much the whole time Sister Alice visited. She woke occasionally and stared at her as we all spoke, but she mostly slept. Sister told mom about all the prayers that she brought with her for mom.
After Sister Alice left, mom was put back in bed. Dad said she ate her whole dinner but did not feed herself. She fell back to sleep as soon as she finished eating.
"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." Isaiah 30:21
Thursday, April 14, 2011
Mom Update, April 14, 2011, Thursday
I began the day with mom this morning. I arrived well before 8:00 a.m. and mom was in bed, hugging her stuffed piggies asleep. I straightened her room quickly and then woke her. She smiled at me broadly. Just as I finished putting her hearing aids in, her breakfast arrived (hard boiled egg, oatmeal, coffee, 2 containers of orange juice, and vanilla milk---a bagel came too but I didn’t think she would be able to eat it so I requested a croissant for her instead). Though mom ate all of her breakfast, she only fed herself about 1/4 of the food alone, the rest I had to feed to her. It was almost as if she knew Claudia should be there as usual and this confused her. Her CNA commented about how mom is used to who comes for which meals--Claudia in morning, Anthony for lunch and me for dinner, and how mom only eats for that person and no one else! As she ate, the CNA and I talked; mom listened intently. At one point, when I mentioned it was almost Easter, mom mouthed, "Really?!!!!" in a surprised manner. I told the CNA about all the food mom would make for our traditional Easter breakfast. The aide was amazed. I asked mom if she remembered making the food and asked her what goes into the french toast casserole and mom mouthed, "I don't know. I forget." She was relatively quiet but interested in the conversation. I told mom it was cousin JoAnn's birthday yesterday and cousin Theresa's today and mom said, "Wow." The CNA commented on how much she loved all mom's grandchildren and how wonderful they all are. She also commented on our whole family as well and how much love she sees in our actions. Mom finished eating just as I left for work.
Anthony came next to see mom and he said that mom was very sleepy and lethargic and wouldn't pay attention to anything and hardly ate any lunch at all. He said she was nothing like she was yesterday. At 12:30 the CNAs changed mom and put her back in the chair and he said she seemed a little more awake.
Dad and Claudia came to see mom next. Dad said that mom's good friend, Rita, from church came to see mom. Dad said that as soon as mom saw Rita, mom said, "OH MY GOD!!!" and put a huge smile on her face. Mom's friend, Maureen, came to see mom next. I know there seemed to be much to tell about these 2 visits, but Claudia's voice messages were garbled and I couldn't hear much more than this. I will fill you in on their visits tomorrow I guess. Mom fell asleep and woke up as dad was leaving and she kissed dad good-bye. Claudia showed her the magazine with Jean in it and mom thumbed through it. Mom kept grabbing for the remote for the TV so Claudia gave it to her and she was enthralled with pushing the buttons and changed the channel or shut it off and turned it on. Mom read the magazine and played with her stuffed pigs too. Claudia was going to try to do some other activities with mom because she seemed more alert and awake. Claudia left to go to see Jean's show, "The Producers" at Five Towns College tonight.
"Keep on rejoicing in the Lord at all times. I will say it again: Keep on rejoicing!" Philippians 4:4
Anthony came next to see mom and he said that mom was very sleepy and lethargic and wouldn't pay attention to anything and hardly ate any lunch at all. He said she was nothing like she was yesterday. At 12:30 the CNAs changed mom and put her back in the chair and he said she seemed a little more awake.
Dad and Claudia came to see mom next. Dad said that mom's good friend, Rita, from church came to see mom. Dad said that as soon as mom saw Rita, mom said, "OH MY GOD!!!" and put a huge smile on her face. Mom's friend, Maureen, came to see mom next. I know there seemed to be much to tell about these 2 visits, but Claudia's voice messages were garbled and I couldn't hear much more than this. I will fill you in on their visits tomorrow I guess. Mom fell asleep and woke up as dad was leaving and she kissed dad good-bye. Claudia showed her the magazine with Jean in it and mom thumbed through it. Mom kept grabbing for the remote for the TV so Claudia gave it to her and she was enthralled with pushing the buttons and changed the channel or shut it off and turned it on. Mom read the magazine and played with her stuffed pigs too. Claudia was going to try to do some other activities with mom because she seemed more alert and awake. Claudia left to go to see Jean's show, "The Producers" at Five Towns College tonight.
"Keep on rejoicing in the Lord at all times. I will say it again: Keep on rejoicing!" Philippians 4:4
Wednesday, April 13, 2011
Mom Update, April 13, 2011, Wednesday
Lenny started the day with mom early this morning but she had already eaten breakfast and was just getting out of the shower. As he did her physical therapy/range of motion, she was counting with him. It was inconsistent on some of the rounds and other times, she counted 1-10 and other times, she counted alone from 1-10. They talked and hung out and then Lenny left to go study for a Psychology test he had to take later in the day.
Anthony said that mom was wide awake and alert and looked like "mom" when he arrived today. He was really glad about this. He stood in the doorway of mom's room and called, "Hi mom" from the door and mom turned all the way to her left to look at him (this is big stuff, she usually appears not to hear you) and then mom said "Hi" to Anthony. Then lunch came and the CNA cut mom's food and handed mom her fork and mom ate like a typical, healthy person and ate the whole, entire lunch. She scooped a lot and then tried to pierce—she had brussel sprouts and pierced them at times and sometimes pierced the pork she had too. They talked and laughed. She ate cake for dessert---answered when Anthony asked if she was done. Anthony asked if they could work on her legs and mom said ok. He likes to check on how she feels when he does this and mom mouthed, "This feels fine." While Anthony worked on her legs, she tapped him on the shoulder and then pointed to the closet----he didn’t know what she wanted. She pushed with her left leg definitely and on command. And the right leg she pushed really hard. When he asked her to lift her legs she began to tap him on the shoulder and he thought maybe it was avoidance. When dad came Ant said "Hey, look who’s here" and she turned again and looked at dad. On Monday, Ant talked to mom and she seemed like she wouldn’t respond to him---then, she reached up and grabbed her hearing aid and took it out of her ear and gave it to him and sure enough it wasn’t working. She also made sense with the answers or responses she gave him today too. The Occupational Therapist said she is dropping mom's therapy because she is eating so well. The therapist asked what our goals are for mom and Ant said they were to rehabilitate her and bring her home. The OT said to "keep on" respiratory because that's all that is holding her back.
Dad came and mom started to fade then. They held hands and watched TV together. I think mom does this with dad because she knows she can just "be" with him. No demands. Dad said mom was awake and alert mostly and that he had a great afternoon with her.
I came late in the afternoon between work. Mom had just fallen asleep. Shortly after I arrived, her dinner came. She was already in bed. Mom had some sort of orzo-type pasta and chunks of chicken breast and peaches and vanilla milk. She ate the entire meal alone!!! She needed verbal coaxing and sometimes I gave her a spoonful of food (maybe 4 total) but she scooped with the spoon and ate it all alone. She sometimes misses her mouth on the first try...she hits her chin but she adjusts. Mom also knows how to push her food to the center of the plate in a pile for easy scooping and tonight, she even stood her bowl of peaches on its side practically when the bowl was almost empty so that she could scoop easier!! She also held the plate and bowl with her left hand in order to anchor them so she could scoop with her right hand.
Claudia came to be with mom and dad tonight. Mom was asleep when she got there but woke up quickly. She said that she did all kinds of mazes with mom (coloring book mazes, books of mazes...) using hand over hand assistance and the colored pencils, markers, crayons....and mom also drew a bit as well. She seemed to be trying to make certain shapes but couldn't make anything recognizable or legible. She was very intent and concentrated as she used the writing tools. It was obvious that she was trying to make something; it wasn't just scribbling. Claudia tried to do the puzzles but mom didn't want to so Claudia tried to get her to put the pieces away back into the plastic bag. Claudia made her drink too. Claudia read to mom and looked through some of the books too.
"This is the day that the Lord has made, I will rejoice and be glad in it" Psalm 118:24
Anthony said that mom was wide awake and alert and looked like "mom" when he arrived today. He was really glad about this. He stood in the doorway of mom's room and called, "Hi mom" from the door and mom turned all the way to her left to look at him (this is big stuff, she usually appears not to hear you) and then mom said "Hi" to Anthony. Then lunch came and the CNA cut mom's food and handed mom her fork and mom ate like a typical, healthy person and ate the whole, entire lunch. She scooped a lot and then tried to pierce—she had brussel sprouts and pierced them at times and sometimes pierced the pork she had too. They talked and laughed. She ate cake for dessert---answered when Anthony asked if she was done. Anthony asked if they could work on her legs and mom said ok. He likes to check on how she feels when he does this and mom mouthed, "This feels fine." While Anthony worked on her legs, she tapped him on the shoulder and then pointed to the closet----he didn’t know what she wanted. She pushed with her left leg definitely and on command. And the right leg she pushed really hard. When he asked her to lift her legs she began to tap him on the shoulder and he thought maybe it was avoidance. When dad came Ant said "Hey, look who’s here" and she turned again and looked at dad. On Monday, Ant talked to mom and she seemed like she wouldn’t respond to him---then, she reached up and grabbed her hearing aid and took it out of her ear and gave it to him and sure enough it wasn’t working. She also made sense with the answers or responses she gave him today too. The Occupational Therapist said she is dropping mom's therapy because she is eating so well. The therapist asked what our goals are for mom and Ant said they were to rehabilitate her and bring her home. The OT said to "keep on" respiratory because that's all that is holding her back.
Dad came and mom started to fade then. They held hands and watched TV together. I think mom does this with dad because she knows she can just "be" with him. No demands. Dad said mom was awake and alert mostly and that he had a great afternoon with her.
I came late in the afternoon between work. Mom had just fallen asleep. Shortly after I arrived, her dinner came. She was already in bed. Mom had some sort of orzo-type pasta and chunks of chicken breast and peaches and vanilla milk. She ate the entire meal alone!!! She needed verbal coaxing and sometimes I gave her a spoonful of food (maybe 4 total) but she scooped with the spoon and ate it all alone. She sometimes misses her mouth on the first try...she hits her chin but she adjusts. Mom also knows how to push her food to the center of the plate in a pile for easy scooping and tonight, she even stood her bowl of peaches on its side practically when the bowl was almost empty so that she could scoop easier!! She also held the plate and bowl with her left hand in order to anchor them so she could scoop with her right hand.
Claudia came to be with mom and dad tonight. Mom was asleep when she got there but woke up quickly. She said that she did all kinds of mazes with mom (coloring book mazes, books of mazes...) using hand over hand assistance and the colored pencils, markers, crayons....and mom also drew a bit as well. She seemed to be trying to make certain shapes but couldn't make anything recognizable or legible. She was very intent and concentrated as she used the writing tools. It was obvious that she was trying to make something; it wasn't just scribbling. Claudia tried to do the puzzles but mom didn't want to so Claudia tried to get her to put the pieces away back into the plastic bag. Claudia made her drink too. Claudia read to mom and looked through some of the books too.
"This is the day that the Lord has made, I will rejoice and be glad in it" Psalm 118:24
Tuesday, April 12, 2011
Mom Update, April 12, 2011, Tuesday
Mom was in a great mood this morning…happier. Claudia started the day with her. She adjusted mom in the bed well because mom was all slumped in the bed. Claudia worked with mom’s arms and legs really well but as she got to her legs, breakfast came. Mom pierced the food with the fork independently—totally!!! Mom needed no help at all. She held the coffee cup alone too…but Claudia helped her anyway. The head of respiratory came in and said that mom is doing great but the therapist wouldn’t commit to anything concrete…wouldn’t answer when mom goes on the trach collar or what is next. The therapist just said that mom is doing good but we have to wait to see how she continues to do. The therapist made very vague statements---said no time frame for how long this step would be. Claudia and the CNA talked and watched “Good Morning America” and the more they talked, the more mom ate independently…the more they paid attention to mom, the less she did alone or ate. I forgot to mention also that, when I help or try to help mom eat by putting things on the fork or spoon, she dumps it off and does it over herself!!
Anthony came next to see mom. Mom did really good!! She was up and said hello to him. The Occupational Therapist came to bring mom lunch. The therapist said Occupational Therapy was going to stop as of today. They really didn’t need to coax mom much. Mom pierced with the fork---meat and broccoli. Mom ate rather quickly too. Mom ate about 2/3 of the meal alone. Anthony asked about the dentist again and the fact that no dentist has come yet. Mom talked a few times audibly and it was her voice. They played 3 Card Monty and mom loved it and pointed to the cards (the same one every time). Mom was into it!!! Anthony put the stack of cards in front of her and she moved them around and stacked them. Anthony had her giggling a few times too. When he left, mom began to fall asleep. The OT is being sent to other facilities now so no one works with mom when the OT isn’t there. Mom looked good again…more like herself…even the CNAs and the nurses see it. The head of respiratory saw mom eat alone this morning and was amazed too!!! Shocked!!
Dad arrived next to mom. They talked, and dad made sure mom drank plenty of juice today. He did mom’s physical therapy/range of motion exercises. They watched TV and mom napped on and off. Dad said that a gentleman came in with a guitar and played and sang to mom. Dad said when mom was awake, she was alert and talkative (mouthing). They also looked at a magazine together.
When I arrived this afternoon, mom was in her wheelchair and awake and alert. I had my dinner there and talked to her and dad. Mom was watching me as I talked. She appeared to be interested in what I was saying. Mom made a few comments to me today as well. She also had her cup of juice with the straw on the table in front of her and she was able to pick up the cup and drink from it totally independently!! Dinner came and mom was still in her chair which was good. She had 2 huge stuffed shells and lima beans (we didn’t give her the beans because they aren’t soft enough) and she had fruit (pears and peaches) for dessert. I cut up all her food and mom was grabbing small pieces of food with her fingers while I was using the utensils to cut the food. She was eager to eat. Once I finished cutting, I gave her the fork and she began to eat. Sometimes, would stab at the food and lift the fork to her mouth but there would be no food on the fork. I think this happens when she begins to become tired later in the day…but I am not too sure.
Con and Sammy and Anthony Michael joined dad later in the evening. Sammy called and said that mom was in bed and gave them all a big smile when they arrived. She mouthed some words and was in a good mood but not in the mood to do anything workwise. They watched TV and Con asked her how she was and mom mouthed, “I’m fine” and then they called Anthony on the phone and she mouthed in response to his question by phone, “I’m fine.” They hung out and talked and watched TV and “chillaxed” as Sammy says!! (word sandwich for chilled and relaxed!!)
“whatever your hand finds to do, do it with all your might…” Ecclesiastes 9:10
Anthony came next to see mom. Mom did really good!! She was up and said hello to him. The Occupational Therapist came to bring mom lunch. The therapist said Occupational Therapy was going to stop as of today. They really didn’t need to coax mom much. Mom pierced with the fork---meat and broccoli. Mom ate rather quickly too. Mom ate about 2/3 of the meal alone. Anthony asked about the dentist again and the fact that no dentist has come yet. Mom talked a few times audibly and it was her voice. They played 3 Card Monty and mom loved it and pointed to the cards (the same one every time). Mom was into it!!! Anthony put the stack of cards in front of her and she moved them around and stacked them. Anthony had her giggling a few times too. When he left, mom began to fall asleep. The OT is being sent to other facilities now so no one works with mom when the OT isn’t there. Mom looked good again…more like herself…even the CNAs and the nurses see it. The head of respiratory saw mom eat alone this morning and was amazed too!!! Shocked!!
Dad arrived next to mom. They talked, and dad made sure mom drank plenty of juice today. He did mom’s physical therapy/range of motion exercises. They watched TV and mom napped on and off. Dad said that a gentleman came in with a guitar and played and sang to mom. Dad said when mom was awake, she was alert and talkative (mouthing). They also looked at a magazine together.
When I arrived this afternoon, mom was in her wheelchair and awake and alert. I had my dinner there and talked to her and dad. Mom was watching me as I talked. She appeared to be interested in what I was saying. Mom made a few comments to me today as well. She also had her cup of juice with the straw on the table in front of her and she was able to pick up the cup and drink from it totally independently!! Dinner came and mom was still in her chair which was good. She had 2 huge stuffed shells and lima beans (we didn’t give her the beans because they aren’t soft enough) and she had fruit (pears and peaches) for dessert. I cut up all her food and mom was grabbing small pieces of food with her fingers while I was using the utensils to cut the food. She was eager to eat. Once I finished cutting, I gave her the fork and she began to eat. Sometimes, would stab at the food and lift the fork to her mouth but there would be no food on the fork. I think this happens when she begins to become tired later in the day…but I am not too sure.
Con and Sammy and Anthony Michael joined dad later in the evening. Sammy called and said that mom was in bed and gave them all a big smile when they arrived. She mouthed some words and was in a good mood but not in the mood to do anything workwise. They watched TV and Con asked her how she was and mom mouthed, “I’m fine” and then they called Anthony on the phone and she mouthed in response to his question by phone, “I’m fine.” They hung out and talked and watched TV and “chillaxed” as Sammy says!! (word sandwich for chilled and relaxed!!)
“whatever your hand finds to do, do it with all your might…” Ecclesiastes 9:10
Mom Update, April 11, 2011, Monday
Claudia began the day with mom. She had a really hard time waking her this morning. Claudia did her leg lifts twice and her arm lifts twice. She did mom’s full physical therapy/range of motion exercises and had the CNA help her to move mom up in the bed so she could sit straight. She had French toast and Claudia showed her once how to turn the fork prongs down to pierce the food and then turn the fork upward to put it in her mouth easily. Following this one time prompt by Claudia, mom proceeded to use the fork correctly and successfully on her own independently!! Claudia then taught the new CNA how to coach mom along with eating and how to let her feed herself. Once mom was eating well, Claudia ran to execute OPERATION GET MOM OFF VENT: PLAN A - Find the head of respiratory and convince him to put the PSV # on the vent down from 12 to 10. She searched, but he was in a meeting, so she went to mom’s respiratory therapist and began the speech. She told the therapist that it was the plan to get mom’s PSV from 12 down to 10 this week. She told the therapist that she (Claudia) and I checked our extensive notes we took from December and that we saw that the head of respiratory had gradually brought mom from a 12 to a 10 by first lowering the PSV to 11 for a mom didn’t with respect to how to lower the numbers. That therapist said not to jump from 12 to 10—too shocking). Claudia told the therapist to “remind” the head of respiratory that this is how he did it with mom last time and it worked well. The respiratory person mom spoke to today said that the message would definitely be delivered. Claudia left for work and prayed.
Carmine came to see mom next. I am not sure what they did together today, but I know it is always so important and worthwhile. You can tell when Carmine has been here judging by mom’s affect. She is more alert and talkative after he comes.
Dad came to see mom next. The CNAs told him mom ate all her lunch. None of us were with her for lunch today. The CNA said that mom was trying to feed herself too. Dad gave mom the plastic nuts and bolts. He said that she fiddled with them but did not take them apart or put them together at all. He tried to do the pom poms and the container and tweezers too but mom just laid the tweezers flat on the table and lined up pom poms in them by hand and then she’d take them out of the tweezers and put them in the container. He also did her physical therapy and had her pull the orange, scrunchy tube to strengthen her arms. Dad also put the MET game on for mom to watch and he gave her 4 cups of juice!! Hahaha!! I guess all my “scolding” paid off.
When I arrived, I noticed right away that mom’s vent PSV was down from 12 to 10!!! Yippeee!! It’s a step closer to being off the vent totally. Mom was sweating a bit and began to breathe a little heavier after I asked her if she wanted some juice (to which she replied, “NO!” and pushed me away). I sat with her and talked a bit and held her hand and reassured her that, although getting off the vent would be hard, she could do it…I reminded her of what a strong woman she is and how she is very much able to get through it. Mom, dad and I watched TV until dinner. For dinner, mom had quiche, mixed veggies, juice, a croissant, and peaches for dessert. Mom ate the whole meal alone!! She used mostly the spoon and she was able to push the food together in a pile on the plate so she could scoop the food easily. I helped her a little with the peaches for dessert just because they were ready to return the plates to the kitchen.
Some people at the facility and we have noticed that mom looks good this week. So good. To us, she looks so much like herself…facial expressions…sort of also in the way she carries herself. Also, what I forgot to mention over the weekend was that, when mom spoke audibly this weekend, she sounded like herself….it was her voice…not the gravelly vent sounding voice since she’s been here. She doesn’t always make audible sounds because it only happens when the vent cuff is not tight enough…but the voice we heard this weekend was hers…it was sooo great to hear for the first time in 10 months.
The respiratory therapist said mom’s numbers have been fine all day and therefore, she will stay in the CPAP mode until 10 p.m.---this is great, because, in the past, she has stayed on CPAP only until about 6 p.m. or so if that. The idea is to get her to stay in this mode throughout the night and 24 hours a day.
Mom and I did a crossword puzzle and these are the clues she got:
“A beach shelter. Starts with a C. Ca….” Mom mouthed, “Cabana”
“a fishing pole. Starts with an R” Mom mouthed “Rod”
“Spelling competition” Mom mouthed, “Bee”
“Plant whose leaves have a gooey gel used to help with burns. Starts with an A”
Mom mouthed, “ALOE”
Mom fell asleep and I prayed over her and left.
Claudia came back after St. Joe's and mom was awake. She put a magazine on the bed tray for mom to look at. Mom looked at the magazine and tried to turn the pages. Claudia had her drink her juice and she finished the juice in the cup and opened another one. She drank a little of the second one. Claudia put dancing with the stars on and during the commercials she did nuts and bolts although mom needed a lot of prompting. She also did pegs with her but again she needed a lot of prompting. They watched Dancing with the Stars and Claudia commented on the show. Claudia took out her hearing aids and set the timer on the TV and said a prayer and left.
“fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10
Carmine came to see mom next. I am not sure what they did together today, but I know it is always so important and worthwhile. You can tell when Carmine has been here judging by mom’s affect. She is more alert and talkative after he comes.
Dad came to see mom next. The CNAs told him mom ate all her lunch. None of us were with her for lunch today. The CNA said that mom was trying to feed herself too. Dad gave mom the plastic nuts and bolts. He said that she fiddled with them but did not take them apart or put them together at all. He tried to do the pom poms and the container and tweezers too but mom just laid the tweezers flat on the table and lined up pom poms in them by hand and then she’d take them out of the tweezers and put them in the container. He also did her physical therapy and had her pull the orange, scrunchy tube to strengthen her arms. Dad also put the MET game on for mom to watch and he gave her 4 cups of juice!! Hahaha!! I guess all my “scolding” paid off.
When I arrived, I noticed right away that mom’s vent PSV was down from 12 to 10!!! Yippeee!! It’s a step closer to being off the vent totally. Mom was sweating a bit and began to breathe a little heavier after I asked her if she wanted some juice (to which she replied, “NO!” and pushed me away). I sat with her and talked a bit and held her hand and reassured her that, although getting off the vent would be hard, she could do it…I reminded her of what a strong woman she is and how she is very much able to get through it. Mom, dad and I watched TV until dinner. For dinner, mom had quiche, mixed veggies, juice, a croissant, and peaches for dessert. Mom ate the whole meal alone!! She used mostly the spoon and she was able to push the food together in a pile on the plate so she could scoop the food easily. I helped her a little with the peaches for dessert just because they were ready to return the plates to the kitchen.
Some people at the facility and we have noticed that mom looks good this week. So good. To us, she looks so much like herself…facial expressions…sort of also in the way she carries herself. Also, what I forgot to mention over the weekend was that, when mom spoke audibly this weekend, she sounded like herself….it was her voice…not the gravelly vent sounding voice since she’s been here. She doesn’t always make audible sounds because it only happens when the vent cuff is not tight enough…but the voice we heard this weekend was hers…it was sooo great to hear for the first time in 10 months.
The respiratory therapist said mom’s numbers have been fine all day and therefore, she will stay in the CPAP mode until 10 p.m.---this is great, because, in the past, she has stayed on CPAP only until about 6 p.m. or so if that. The idea is to get her to stay in this mode throughout the night and 24 hours a day.
Mom and I did a crossword puzzle and these are the clues she got:
“A beach shelter. Starts with a C. Ca….” Mom mouthed, “Cabana”
“a fishing pole. Starts with an R” Mom mouthed “Rod”
“Spelling competition” Mom mouthed, “Bee”
“Plant whose leaves have a gooey gel used to help with burns. Starts with an A”
Mom mouthed, “ALOE”
Mom fell asleep and I prayed over her and left.
Claudia came back after St. Joe's and mom was awake. She put a magazine on the bed tray for mom to look at. Mom looked at the magazine and tried to turn the pages. Claudia had her drink her juice and she finished the juice in the cup and opened another one. She drank a little of the second one. Claudia put dancing with the stars on and during the commercials she did nuts and bolts although mom needed a lot of prompting. She also did pegs with her but again she needed a lot of prompting. They watched Dancing with the Stars and Claudia commented on the show. Claudia took out her hearing aids and set the timer on the TV and said a prayer and left.
“fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10
Sunday, April 10, 2011
Mom Update, April 10, 2011, Sunday
Claudia began the day with mom this morning. They had breakfast together. She brought mom a homemade wheat germ omelet (one of mom’s favorite breakfast foods). Mom saw it and said, “I like wheat germ in my eggs” and Claudia said, “I know that’s why I made it for you.” Mom ate the whole omelet. Claudia asked mom if she remembered how she ate the oatmeal yesterday from the cup and mom said she didn’t remember so Claudia reminded her and set her up again with the cup in her left hand and spoon in the right but mom couldn’t do it and needed a lot of hand over hand assistance today. Mom did eat about ¾ of her eggs independently with minimal assistance otherwise (Claudia would push the eggs onto the fork with a knife—mom had a hard time piercing the eggs today). Claudia said mom seemed to be in an agitated or angry type of mood this morning. She was sleepy too though and kept falling asleep on and off…not badly though. Claudia said mom’s arms and hands were stiff today. Claudia stretched mom out really well and did her full physical therapy/range of motion exercises. They watched a movie I bought for her and dad called, “New York goes to war” – mom LOVES these movies and documentaries. Mom watched with a lot of interest and they talked about Coney Island, Make Believe Ballroom, Brooklyn Dodgers… Mom watched and listened and often would repeat the things that were familiar to her. There was a pamphlet that came with the DVD and mom read it and held it throughout the movie.
Dad came to see mom next. He said hello to her and she motioned to him as though she was going to kiss him so they kissed and she put her arm around him. He talked to he and then Anthony, Con and Anthony Michael came to mom next. Mom was still in bed even though it was already 12:40 because they are very short staffed on the weekend. Anthony worked on mom’s legs really well. Mom was awake and in a good mood but didn’t talk too much. Mom was put in her chair around 1:00. She took a short nap while they were there. Donna came to see mom and brought her a lovely primrose plant. They talked to mom and made her laugh (as per dad). They also watched the METS game too. Aunt Lucy called to talk to mom and mom listened to her talk but didn’t show any emotion or try to talk back.
When they all left, Terry came to be with mom but mom slept the whole time. She woke to eat an omelet and potatoes for dinner. Then she went back to sleep.
Dad, Claudia and I came to see mom after Ava’s show. Mom was asleep at first but then she woke. Before she woke, one of the respiratory people who we love talked to us about the vent and told us to basically tell the head person that we want mom on the trach collar asap. The therapist said that there is no reason to keep mom as is since she is on the lowest vent rate setting and that the PSV can be lowered but it isn’t imperative before the trach collar goes on. We plan to have Claudia go speak to the head of respiratory tomorrow morning to talk about lowering the PSV to 11 then to 10. Then, of course, to get mom on the trach collar. The person we talked to said that the person’s fear is that mom will be at the same spot or moved backwards on Thursday when the person returns to work. We watched the Channel 13 documentary “New York Goes to War” again and dad told us all about the people he knew who were in the movie. Dad got teary when he spoke about being privileged enough to come home from the Korean War alive when so many others with families and children had died. He said he couldn’t understand why he was chosen to come home alive…we told him it was because God planned for him to have all of us!! Dad knows so much about Long Island…he must be one of Long Island’s last living historians. Mom listened attentively to both the video and dad. I prayed with mom before I left and anointed her. Shortly after I did, Claudia said that mom had a bad coughing fit---no one came to suction her for over 10 minutes while she choked and choked and turned beet red. Finally, someone came after Claudia searched and demanded someone come. Mom settled down then and they sat with her until she fell asleep, then left. Even though this is the 330th day since mom’s aneurysm…it is still so hard to accept or believe that this has happened. But we are lucky and blessed no matter the circumstance. We are still together.
“Give thanks in everything circumstance.” 1 Thessalonians 5:12
Dad came to see mom next. He said hello to her and she motioned to him as though she was going to kiss him so they kissed and she put her arm around him. He talked to he and then Anthony, Con and Anthony Michael came to mom next. Mom was still in bed even though it was already 12:40 because they are very short staffed on the weekend. Anthony worked on mom’s legs really well. Mom was awake and in a good mood but didn’t talk too much. Mom was put in her chair around 1:00. She took a short nap while they were there. Donna came to see mom and brought her a lovely primrose plant. They talked to mom and made her laugh (as per dad). They also watched the METS game too. Aunt Lucy called to talk to mom and mom listened to her talk but didn’t show any emotion or try to talk back.
When they all left, Terry came to be with mom but mom slept the whole time. She woke to eat an omelet and potatoes for dinner. Then she went back to sleep.
Dad, Claudia and I came to see mom after Ava’s show. Mom was asleep at first but then she woke. Before she woke, one of the respiratory people who we love talked to us about the vent and told us to basically tell the head person that we want mom on the trach collar asap. The therapist said that there is no reason to keep mom as is since she is on the lowest vent rate setting and that the PSV can be lowered but it isn’t imperative before the trach collar goes on. We plan to have Claudia go speak to the head of respiratory tomorrow morning to talk about lowering the PSV to 11 then to 10. Then, of course, to get mom on the trach collar. The person we talked to said that the person’s fear is that mom will be at the same spot or moved backwards on Thursday when the person returns to work. We watched the Channel 13 documentary “New York Goes to War” again and dad told us all about the people he knew who were in the movie. Dad got teary when he spoke about being privileged enough to come home from the Korean War alive when so many others with families and children had died. He said he couldn’t understand why he was chosen to come home alive…we told him it was because God planned for him to have all of us!! Dad knows so much about Long Island…he must be one of Long Island’s last living historians. Mom listened attentively to both the video and dad. I prayed with mom before I left and anointed her. Shortly after I did, Claudia said that mom had a bad coughing fit---no one came to suction her for over 10 minutes while she choked and choked and turned beet red. Finally, someone came after Claudia searched and demanded someone come. Mom settled down then and they sat with her until she fell asleep, then left. Even though this is the 330th day since mom’s aneurysm…it is still so hard to accept or believe that this has happened. But we are lucky and blessed no matter the circumstance. We are still together.
“Give thanks in everything circumstance.” 1 Thessalonians 5:12
Saturday, April 9, 2011
Mom Update, April 9, 2011, Saturday
Claudia began the day with mom. When Claudia arrived, mom was practically vertical in the bed, squished lopsided to one side and there were 2 aides feeding her breakfast. Claudia gently but assertively redirectioned the situation so that mom was lifted up high in the bed (so that she could sit straighter) and moved mom so she was aligned straighter in the bed and then moved the table to the right side of the bed and had mom feed herself. During this time, the TV was on and mom asked, "what's on TV?" Mom ate eggs with the fork and alternated between fork and spoon dependent upon what she ate (eggs or oatmeal). She scooped with the spoon with her right hand and held a doubled, plastic cup filled with oatmeal with her left hand. At one point, mom tried to put the butter knife in her mouth (it appears that she gets confused at times) and when Claudia told her not to do that because she could get hurt, mom "tsked" Claudia as if to say, "stop babying me." When breakfast was over, she asked, "Is breakfast done? What did I eat?" and Claudia told her all she ate. Claudia put various toys on mom's lap for mom to explore and use to exercise as she did her physical therapy and there was a ball on mom's leg that began to roll off; mom told the ball to, "Stay" Claudia said, "Yeah like the ball can hear you? " Mom said, "No it doesn't" in an annoyed way. Claudia said mom's attention to things today was like it was the first time she saw them. New. Curious. Alert. Attentive. Mom was holding things in right hand and picking at or exploring them with her left. Her left hand is moving and doing things like crazy today. She was also very talkative.
Con, Anthony, and Samantha came to see mom next. Mom was talking out loud—she said, “What?” and “I want juice” and she said, “Hi” to the respiratory therapist. Con did a crossword with mom and mom answered these clues:
“a wrestler: Muhammad____” Mom said, “Ali”
“a musician, ____Guthrie” Mom said, “Arlo”
We went over the menu with mom. Sammy read it to mom and Anthony had her laughing with his side comments. The CNA helping mom’s roommate said she never laughed so much listening to someone read a menu. Anthony kept telling mom to pick the pasta dishes and then he told mom to remember that whatever she doesn’t eat to save under her blankets for him to eat --- as the CNA left the room, she warned that she was going to start to check the blankets from now on! Hahaa! We all laughed and joked and mom talked and laughed with us. Mom was trying to put everything in her cup of juice so we tried to have mom do the buttons in the container but she wasn’t interested. Anthony worked on mom’s feet and legs next. He tried to have her lift her legs but all she did was move her toes. Mom coughed a lot today. She took a quick cat nap while we were there. Dad came next and mom woke up. She was very sleepy then…awake but then would fall asleep again on and off. When she seemed to wake up finally, dad talked to her and she was staring at him and trying to comment on what he was saying. They watched TV and held hands for a while. The CNA who was with mom for lunch said that she did really well today and that he didn’t have to feed her much because she did a lot on her own! Dad said he and mom watched TV then mom was moved to bed and ate all of her chicken, mashed potatoes, green beans and custard for dinner then fell asleep. He tucked her in and went home. I went to a show, “HONK” a rendition of THE UGLY DUCKLING that Ava directed for St. Cyril’s School in Deer Park…it is playing again Sunday at 2:00. It was amazing!!! Guess what else? Standing behind me on the food line was mom's physical therapist from the facility!!! The therapist's 2 daughters were in Ava's play!!! Small world! Ava is amazing---there must have been 50 4-8th graders in the show. She did it all.
Mom would have been so proud of her. I taped it so mom can watch tomorrow.
"They drink their fill of the abundance of Your house; And You give them to drink of the river of Your delights." Psalm 36:8
Con, Anthony, and Samantha came to see mom next. Mom was talking out loud—she said, “What?” and “I want juice” and she said, “Hi” to the respiratory therapist. Con did a crossword with mom and mom answered these clues:
“a wrestler: Muhammad____” Mom said, “Ali”
“a musician, ____Guthrie” Mom said, “Arlo”
We went over the menu with mom. Sammy read it to mom and Anthony had her laughing with his side comments. The CNA helping mom’s roommate said she never laughed so much listening to someone read a menu. Anthony kept telling mom to pick the pasta dishes and then he told mom to remember that whatever she doesn’t eat to save under her blankets for him to eat --- as the CNA left the room, she warned that she was going to start to check the blankets from now on! Hahaa! We all laughed and joked and mom talked and laughed with us. Mom was trying to put everything in her cup of juice so we tried to have mom do the buttons in the container but she wasn’t interested. Anthony worked on mom’s feet and legs next. He tried to have her lift her legs but all she did was move her toes. Mom coughed a lot today. She took a quick cat nap while we were there. Dad came next and mom woke up. She was very sleepy then…awake but then would fall asleep again on and off. When she seemed to wake up finally, dad talked to her and she was staring at him and trying to comment on what he was saying. They watched TV and held hands for a while. The CNA who was with mom for lunch said that she did really well today and that he didn’t have to feed her much because she did a lot on her own! Dad said he and mom watched TV then mom was moved to bed and ate all of her chicken, mashed potatoes, green beans and custard for dinner then fell asleep. He tucked her in and went home. I went to a show, “HONK” a rendition of THE UGLY DUCKLING that Ava directed for St. Cyril’s School in Deer Park…it is playing again Sunday at 2:00. It was amazing!!! Guess what else? Standing behind me on the food line was mom's physical therapist from the facility!!! The therapist's 2 daughters were in Ava's play!!! Small world! Ava is amazing---there must have been 50 4-8th graders in the show. She did it all.
Mom would have been so proud of her. I taped it so mom can watch tomorrow.
"They drink their fill of the abundance of Your house; And You give them to drink of the river of Your delights." Psalm 36:8
Friday, April 8, 2011
Mom Update, April 8, 2011, Friday
Dad began the day with mom today. Mom was awake and eating breakfast (waffle, oatmeal with vanilla milk, orange juice, coffee). Dad said that mom was stabbing with the fork and that mom ate the waffle all by herself. Dad stayed an hour of so with mom and then left. He told mom he had to leave and where he was going and mom said, “OK” but when dad left, mom made a face.
Anthony came next to be with mom just before lunch. He did her full physical therapy/range of motion exercises and he worked on her legs. Though she didn’t lift her legs alone, she exerted pressure against their pushing. She wiggled her feet as well. She ate lunch and the Occupational Therapist came in the beginning of lunch and said that she probably would not be back to see mom next week because, though mom can now scoop and pierce with the fork, she eats too slowly. Anthony finished lunch with mom, he brought a sandwich so he could eat with her. Mom talked to Con on the phone today, and dad said she was mouthing answers to Con’s questions and was also holding the phone to her ear as well.
When dad came back to see mom, he said that he did mom’s full physical therapy/range of motion exercises. He also said that the lady with the puppets, from recreation therapy, came to see mom. The recreation therapist told dad that a man with a greyhound came too but mom didn’t seem to pay attention to it. The pulmonologist came with the head of respiratory came to see mom too. The pulmonologist said mom is doing great with her breathing and that next week they are going to do more with mom’s vent again. They changed all the vent lines/tubes today and cleaned things up while dad was there. They said that there is another machine/ vent? that is available and that they may use it with mom next week (while this is good, I have to ‘vent’, pardon the pun, and question why, after mom is here 10 months, are they just now thinking about using this machine???!!!!). The facility also provided mom with her own hoyer lift pad (I called the Social Worker as I was told to do and asked where and what kind of pad mom needs for the hoyer and the shower because we want to buy her her own). I haven’t seen the shower pad for the hoyer yet, but the Social worker told me 2 days ago that mom would be getting her own pads just for her use—with her name on them. There was no name on the pad that was here today, so I wrote mom’s name on it (all over). Mom has been on the CPAP mode of the vent for 5 days now!!! And doing wonderfully!!
When I came today, it was late in the afternoon. Mom was bright and alert. Again, I am noticing that, as mom’s physical ability (namely use of her left hand and fingers and arms) increases, she isn’t speaking as much lately. Her brain functions seem to come together in pieces still, although now, she is seeming to integrate her brain functions a bit more. When I arrived I saw that mom had 2 containers of juice left from yesterday---so I began to have mom drink---I am the JUICE DRILL SARGEANT!!! Hahaha! I make sure mom is drinking enough. Mom’s dinner came shortly after I arrived (chicken with a lemon wine sauce, yellow rice, mixed vegetables, vanilla milk and applesauce—we don’t give her the soup because it is too salty). I placed the plate right on mom’s lap on the bed and she grabbed the fork. She began to feed herself immediately…but then stopped. I gave her a forkful and she resisted me but ate what I offered her. I talked to her about my life as she ate. She was very slow in the beginning so I kept pushing the food together into a pile so mom could easily scoop it. After a while, mom began to push the food together herself!! She was imitating what I did and she also must have known this would help her to scoop. She was very ‘with it’ tonight. At another point, I told mom to use the spoon for the mixed veggies and the rice and the fork for the chicken---and she began to switch between the 2 on her own!!! She’d put the fork down and grab the spoon and scoop the rice and veggies with it and then she’d put down the spoon and grab the fork though she didn’t use it for the chicken only as I did. Mom ate all her dinner predominantly on her own!!! I gave her maybe 3-4 forkfuls and that’s it. I poured her applesauce in the bowl that was used for her soup (we cleaned it out first) because it was easier for her to scoop from than the small 4 oz. container. She kept scooping it out of the container onto her bed/bib until we switched to the bowl. She was tired then and didn’t do as well with the applesauce…I eventually just fed her the last few spoonfuls. It was funny though, because when I tried to help mom scoop, she would empty the spoon or fork and then refill it with food herself and bring it to her mouth!!! OCD!!! Hahaha!! We laughed about it, dad and I. Mom brought the spoon or fork up to her face but would come just under her mouth on her chin at first, but as she ate, she hit the bull’s eye! She fell asleep after dinner for about an hour. When she woke, she was coughing. We watched TV and talked. I prayed with her and anointed her with oil when I left.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Anthony came next to be with mom just before lunch. He did her full physical therapy/range of motion exercises and he worked on her legs. Though she didn’t lift her legs alone, she exerted pressure against their pushing. She wiggled her feet as well. She ate lunch and the Occupational Therapist came in the beginning of lunch and said that she probably would not be back to see mom next week because, though mom can now scoop and pierce with the fork, she eats too slowly. Anthony finished lunch with mom, he brought a sandwich so he could eat with her. Mom talked to Con on the phone today, and dad said she was mouthing answers to Con’s questions and was also holding the phone to her ear as well.
When dad came back to see mom, he said that he did mom’s full physical therapy/range of motion exercises. He also said that the lady with the puppets, from recreation therapy, came to see mom. The recreation therapist told dad that a man with a greyhound came too but mom didn’t seem to pay attention to it. The pulmonologist came with the head of respiratory came to see mom too. The pulmonologist said mom is doing great with her breathing and that next week they are going to do more with mom’s vent again. They changed all the vent lines/tubes today and cleaned things up while dad was there. They said that there is another machine/ vent? that is available and that they may use it with mom next week (while this is good, I have to ‘vent’, pardon the pun, and question why, after mom is here 10 months, are they just now thinking about using this machine???!!!!). The facility also provided mom with her own hoyer lift pad (I called the Social Worker as I was told to do and asked where and what kind of pad mom needs for the hoyer and the shower because we want to buy her her own). I haven’t seen the shower pad for the hoyer yet, but the Social worker told me 2 days ago that mom would be getting her own pads just for her use—with her name on them. There was no name on the pad that was here today, so I wrote mom’s name on it (all over). Mom has been on the CPAP mode of the vent for 5 days now!!! And doing wonderfully!!
When I came today, it was late in the afternoon. Mom was bright and alert. Again, I am noticing that, as mom’s physical ability (namely use of her left hand and fingers and arms) increases, she isn’t speaking as much lately. Her brain functions seem to come together in pieces still, although now, she is seeming to integrate her brain functions a bit more. When I arrived I saw that mom had 2 containers of juice left from yesterday---so I began to have mom drink---I am the JUICE DRILL SARGEANT!!! Hahaha! I make sure mom is drinking enough. Mom’s dinner came shortly after I arrived (chicken with a lemon wine sauce, yellow rice, mixed vegetables, vanilla milk and applesauce—we don’t give her the soup because it is too salty). I placed the plate right on mom’s lap on the bed and she grabbed the fork. She began to feed herself immediately…but then stopped. I gave her a forkful and she resisted me but ate what I offered her. I talked to her about my life as she ate. She was very slow in the beginning so I kept pushing the food together into a pile so mom could easily scoop it. After a while, mom began to push the food together herself!! She was imitating what I did and she also must have known this would help her to scoop. She was very ‘with it’ tonight. At another point, I told mom to use the spoon for the mixed veggies and the rice and the fork for the chicken---and she began to switch between the 2 on her own!!! She’d put the fork down and grab the spoon and scoop the rice and veggies with it and then she’d put down the spoon and grab the fork though she didn’t use it for the chicken only as I did. Mom ate all her dinner predominantly on her own!!! I gave her maybe 3-4 forkfuls and that’s it. I poured her applesauce in the bowl that was used for her soup (we cleaned it out first) because it was easier for her to scoop from than the small 4 oz. container. She kept scooping it out of the container onto her bed/bib until we switched to the bowl. She was tired then and didn’t do as well with the applesauce…I eventually just fed her the last few spoonfuls. It was funny though, because when I tried to help mom scoop, she would empty the spoon or fork and then refill it with food herself and bring it to her mouth!!! OCD!!! Hahaha!! We laughed about it, dad and I. Mom brought the spoon or fork up to her face but would come just under her mouth on her chin at first, but as she ate, she hit the bull’s eye! She fell asleep after dinner for about an hour. When she woke, she was coughing. We watched TV and talked. I prayed with her and anointed her with oil when I left.
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
Subscribe to:
Posts (Atom)