This morning, dad began the day with mom. He arrived early and said that mom was out like a light again and could not be woken up for anything – no matter what they tried. She didn’t eat breakfast because she was so deeply asleep. However---she woke up finally!!! When I arrived, she was hugging dad, reaching for him and staring into his eyes. She was very awake. Not very talkative, but talking when asked a question. She kept hugging dad and throwing him kisses. She also was moving her left hand and arm like crazy!! Moving it up and down like we do when we do therapy. Dad told them not to feed her lunch or give her a shower until she returns from the neurologist appointment. Mom also was squeezing her leg muscles above her knee and she was also moving her feet – both on command.
On the other side, the head of respiratory moved her PSV from 10 back to 12 again on the vent. Wrong direction. He said her Tidal Volume was too low. Dad asked him if that could have caused the sleepiness but the head respiratory therapist said no. She has had almost no secretions (very little) since yesterday and this is good.
The urine test and the x-ray and 3 blood tests were done and no results yet this morning. The list of drugs she is taking are Potassium 10 mg. daily, Lasix 40 mg. daily, Labetalol HCL 100 mg. every 12 hours. One of the bills dad received for mom said something about surgery. When dad inquired about it, he found out that they were charged for the podiatrist to cut her toe nails---that was the “surgery!!”
Anthony came in and mom said hi and he talked to mom about fishing (his favorite pastime!!). He even brought a fishing magazine to read to her and show her pictures in. Anthony was trying to get mom to catch and throw the large 10 inch ball. She caught it between her arms 2 times. And she also rolled the ball to him twice. Mom kept grabbing mom’s shirt a lot too—she didn’t like the rips on the collar!! She also touched his shirt collar and made a face and dad said, “You don’t like how I ironed it?” and mom said, “No.” At one point with the ball, mom lifted the ball to throw it to Anthony!!! She didn’t let go but she moved her arm like she was throwing!!
Before mom left for her doctor's appointment, Anthony and I kept briefing her about talking to the doctor when he speaks to her and how important that is. I also read the Social Story that Claudia made for mom called, "Getting Better" which lays out all the conditions and terms of getting better ("I need to answer the questions the doctor asks me" and "If I want to get better, I need to do what people ask me to do"...). Today I asked mom how old she was but she didn't know so I told her. Then I asked her when her birthday was and she didn't know so I said, "August.......?????" She mouthed, "7th" --- it is the 13th. But she said a number!!
Mom fell asleep on the guerney on the way to the ambulance that took her to the neurologist's office. It didn't look promising. Dad walked alongside her shaking her awake and begging her to remain alert until after the appointment. When she got outside just before they lifted her into the ambulance, she woke up so I said, "OK mom I'll see you there!" and she said, "Oh. Where am I going?" So I told her. When we arrived at the office, mom was awake. PTL!! MOM WAS STELLAR AT HER VISIT WITH THE NEUROLOGIST!!!!! She did great!!!! He kept saying, "Amazing, just amazing!" and "She is a miracle" and "She is doing great---I saw her last in January when she was in the hospital. This is miraculous!" We so needed to hear this. So much. The neurologist began by asking about mom and her progress---all directed to me. The nurse from the facility who came with us didn't know anything about mom's recent infection, what medication she was on, or what mom was and wasn't capable of doing. I couldn't help but thank God that we were there with mom or this nurse would have painted a bleak picture of mom's progress, if any progress would have been mentioned at all. When the neurologist asked if mom was talking at all, I said, "Oh yes she does" just as the nurse was making a face and saying, "No she doesn't." Unbelievable! The doctor said, "So does she or doesn't she talk?" I said she did speak but not audibly due to the trach. When I told him she was doing crossword puzzles with us---he was amazed again and said so. I told him on a good day she is 50/50 with the clues I give, on a not so good day maybe 20%. He couldn't believe it. He also thought it is miraculous (these are the words he used) that mom is on a mechanical soft diet and eating and attempting to feed herself too. He couldn't get over her progress!! He asked about what therapy mom gets and I said "nothing" and he said, "Other than what you do?" and I said yes. But the nurse said, "She gets OT and Speech" to which I said, "Yes she received a few weeks of speech exclusively in relation to swallowing and feeding, but speech has been suspended again. She received 2 weeks of OT to help her learn to feed herself but that is suspended too now. He asked if they did the sleep apnea study he recommended and I told him no. He said, "Well, I can understand their concern. It IS an overnight procedure. Perhaps next time she comes I will recommend it." We told him about how tired mom has been these last 5 days and out of it and unable to be roused and he said it is definitely from the antibiotic she had been on and the infection she just recovered from. He said not to worry because we all feel lousy and weak and tired with an infection and for mom it is traumatic and exaggerated. He then turned his attention to mom and said, "Hello Dorothy! Hello. Hi there Dorothy." and mom mouthed, "Hello." He was tickled pink! He said, "How are you today Dorothy?" and mom mouthed, "I'm fine thank you." and he was so excited, "She's talking to me!!!!" he said as he turned to me. "Dorothy, I want you to take your left hand and touch your right ear" I thought...oh no, how depressing...her left side is her weak side and that's also a complex command. Mom did nothing. He asked again and again mom did nothing. Then he quickly said, "That's OK. Close your eyes for me." "Can you close your eyes for me?" Mom did it---closed and opened. He asked again and mom did it again. "Good, very good. Now raise your right hand" mom began to do it and he said, "Good I see you can do that too. Very good." As he turned to make note of this, he then turned back and we both saw mom slowly lift her left hand and arm and cross her body and touch her right ear!!!!!!!!!!!!!!!!!!!! I wanted to cry and the neurologist shouted, "Oh my!!! She's doing it!!! She touched her ear with her left hand!!" He again noted how amazing this was. How far mom has come. He asked her what month it was and then even gave her choices but she didn't know. He then asked her to do something else and she repeated what he said and I said, "Yes, that's right mom. Do it, don't say it. Do it." I knew I shouldn't distract her but I did...she turned to look at me then and wouldn't look back at him. He said, "Oh that's OK. Do you know her?" Mom mouthed, "Yes." He said, "Good, who is she?" Mom gave a contemplative look and mouthed, "Ummm....my...my mother?" (some of my friends said that's true!!! hahaha!!!). I said, "No mom. You are my mother. I am your daughter." Another of my friends said that mom may have been trying to say that she is my mother---"I am her mother." He touched her feet and asked her to lift each leg separately. Mom couldn't do that but she did move each foot. He was amazed again. He also took a metal instrument and ran it under the sole of mom's foot and then poked her with it to cause pain and asked her if she felt it, mom made and face and mouthed, "Ow, yes I do." I told him mom has a delayed processing time and that in September after she woke from the 3 month coma, we saw her have more restoration in her physical/motor abilities and less in her cognitive and linguistic abilities, however, since the episode in December, Mom has restored more of her linguistic and cognitive skills rather than her physical ones this time. He said that was OK because with cognition we can get her to follow commands and then we can order therapy for her. He said perhaps that will happen in late June when she comes again to see him. He also asked mom to lift her left arm, she didn't so he lifted it and said, "Hold it up there" she couldn't, but she did it with her right arm and he was impressed. He said that it is very, very important for us to keep mom engaged through conversation and crossword puzzles (he loved that!), her physical therapy too and to "continually keep her engaged, do not back off, keep working her." His last words to us were, "She is a miracle. Just amazing. I want to tell you that you should have every hope that she will recover well and continue to progress."
Dad and I went back to the facility with mom and she was changed and ate lunch but fell asleep for 1 1/2 hours or so. She woke up alert and ate dinner and talked with dad and held hands. Dad asked the nurse to put her mitts on her hands at one point so he could run to the bathroom and he told mom he'd be right back. Mom said, "No you won't." and the nurse heard it too and was amazed!! Dad came back and mom laughed. He tucked her in tonight.
"He fills my life with good things." Psalm 103:5
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Mom Update, March 29, 2011, Tuesday
Dad began the day with mom this morning. Lenny and Claudia are both sick with a really bad stomach bug. Please keep them both in prayer. Mom ate all her breakfast by having the aide put the food onto the fork and then mom took the fork and ate herself. They didn't understand how to move the table close to the bed so that the tray of food would be close enough for mom to feed herself. Mom was in a good mood, but Anthony said that, by 10:00 when he arrived, mom was out like a light and could not be woken up at all by anyone. She didn't even wake up to eat lunch. She just slept very, very soundly. They got the nurse practitioner came in to examine her and her vitals were fine. He took blood, urine, and did a chest x-ray to determine why she was so sleepy and out of it. Dad said maybe it is mom's blood pressure medication because even though she has been on it for a while now, mom's pattern with medication is that she sometimes reacts to medications after a while. The nurse practitioner put in an order for a sleep study where the evening aides record whether mom is awake or asleep during the night. The infectious disease doctor will also come to be sure that the antibiotic she just finished yesterday was the right one. Mom seemed to have gone to sleep after she had her blood pressure medication and the lasix.
John and Ava came to see mom tonight and said that she was still in her chair and out like a light still. Once she was moved to her bed, she woke up a bit. She ate a full dinner but had to be fed because she was so tired. At one point, John and Ava laughed at something and mom laughed because they did. They did her full physical therapy/range of motion exercises. John asked her to wiggle her toes and she did it a few times but hardly at all. She gave one word responses to Ava. They said that mom was very lethargic and tired the whole time they were there. They tried hard to keep her awake but couldn't...rubbed her feet, talked...nothing worked. She appeared interested all day but just plain unable to keep her eyes open. One of my friends wondered if they gave her insulin again??? Dad was going to ask what medications she is on again. John and Ava tucked her in and prayed over her and left.
Mom's neurologist appointment is tomorrow. I don't know if this is a good or bad thing. Part of me wants her awake and alert and showing off all she can do. The other part of me hopes he can tell us what is wrong...
I place her in God's Hands.
"And we rejoice in the hope of the glory of God." Romans 5:2
John and Ava came to see mom tonight and said that she was still in her chair and out like a light still. Once she was moved to her bed, she woke up a bit. She ate a full dinner but had to be fed because she was so tired. At one point, John and Ava laughed at something and mom laughed because they did. They did her full physical therapy/range of motion exercises. John asked her to wiggle her toes and she did it a few times but hardly at all. She gave one word responses to Ava. They said that mom was very lethargic and tired the whole time they were there. They tried hard to keep her awake but couldn't...rubbed her feet, talked...nothing worked. She appeared interested all day but just plain unable to keep her eyes open. One of my friends wondered if they gave her insulin again??? Dad was going to ask what medications she is on again. John and Ava tucked her in and prayed over her and left.
Mom's neurologist appointment is tomorrow. I don't know if this is a good or bad thing. Part of me wants her awake and alert and showing off all she can do. The other part of me hopes he can tell us what is wrong...
I place her in God's Hands.
"And we rejoice in the hope of the glory of God." Romans 5:2
Monday, March 28, 2011
Mom Update, March 28, 2011, Monday
Lenny began the day with mom this morning. He said that mom was sleeping when he arrived but she woke up as he was putting her hearing aids in. She woke up right away. He did her full physical therapy/range of motion exercises on her upper body but only did her feet and toes and ankles full PT. He thought that someone else would do her legs so he decided to use the machine that Barry gave to mom to strengthen her arms. This machine is a bicycle-type of machine for the arms that is placed on a table. Lenny put mom's hand on one pedal and his on the other to see if she could follow the motion of the pedaling that Lenny was doing. He alternated hands. Then he then put both mom's hands on the pedals and moved the machine then let the machine turn alone to see if mom could follow...she did follow the motion for a bit but then couldn't do it. Mom ate breakfast with one of the CNAs who fed mom the whole time.Mom ate French Toast, coffee and oatmeal and juice for breakfast. She ate it all. Mom and Lenny shared some private jokes between them as well.
Anthony came next and he said that mom was asleep when he got there. She was in her wheelchair. He woke her and she woke up and was neither happy or sad, just flat affect today. He talked to her and then her lunch arrived. The Occupational Therapist was no place to be found so Anthony sent the CNA to find the OT. While the CNA searched, Anthony worked on waking mom up so that she would participate well with eating. The OT arrived and had to coax mom with the first few spoonfuls of food, then mom fed herself. But mom kept getting sleepy in between bites. She had pork chops, brussel sprouts, baked potatoes, coffee, juice and fruit. The OT had to feed mom hand over hand at first, but then mom fed herself. The OT reminded Anthony that mom needs to make "marked" progress this week like stabbing her food with the fork or OT will be dropped -- no more therapy. Anthony suggested that the OT lower the table for mom. This worked well in helping mom to reach her plate of food but it was then a longer distance from the table to her mouth and she sometimes gave up lifting the fork halfway. One of the CNAs said to be sure mom's progressive lens glasses were in the right spot on her face or the food would appear to be even further away. Mom tried to pierce her food several times but couldn't and the OT commented that mom didn't appear to have the strength to do it. (So why not work with her --- give her therapy to strengthen them?????!!!! It won't happen all alone!!). UGH! The OT said mom's feeding skills are inconsistent right now...and then she said maybe it is OK that mom doesn't pierce her food because some people just scoop with the fork. After 35 minutes the OT person left and Anthony finished encouraging mom to eat and feed herself until another CNA came into the room. While the OT was there, mom would feed herself 3-4 times alone and then the OT fed her 1-2 times, then mom fed herself alone and then the OT would do it (because mom would stop in between and look tired and sleepy). Anthony said that mom would actually brighten up at times and seem to look surprised that she was eating...then get sleepy again. The OT was happy with mom's progress overall. The CNAs saw mom feeding herself and were all very thrilled by it. It took over an hour for mom to finish lunch but she did it. Anthony brought his baseball card collection to show mom and talk to her about (he is just so awesome...he makes me cry when he tells me what he does and plans to do with her...what a teacher he has become or maybe always was!!). They looked at the cards together. Mom was a big Brooklyn Dodgers fan. Later she became a MET fan. Mom looked at the cards with interest and obvious pleasure but didn't seem to want to touch them. Anthony thought she knew how valuable they were and wouldn't want to ruin them. Anthony asked mom if he should bring the cards back tomorrow and she said, "Yes" happily.
She fell asleep again just when Dad and Aunt Sophie came to see her. She was relatively quiet and/or sleeping while Aunt Sophie was there. Dad brought Aunt Sophie home then and came back to see mom later after an early dinner. He put her to bed tonight. He said that she ate well at dinner. He also said that when he went to leave tonight, mom asked him, "Why do you have to leave me?" and he cried.
This is a difficult situation. Many people have commented in many ways on many aspects. One person mentioned to me recently, "Wow. It isn't fair. I mean she went to church all the time, sang in the choir..." We all will die some day. No matter what we do. Dying is a part of living, at least in this life right now it is. It is important to remember that bad things happen to everyone at one time or another. What is important is to have faith in God... He alone knows that He Alone is the only One Who gets us through each day. Life is full of bad things happening...if it wasn't God would never have sent a Savior...there would be no need. God is with us always. Life is tragic at times, heartbreaking even...but God is there for us in the midst of it all. Also, others question how much we give to mom...some ask if she gave that much to us? Love isn't given based on what was received...it is just given freely....to whatever extent we are all able to give love. We give mom all that we do because we have hope for her recovery still. My dear friend, Sister Mary Ann shared a line from a poem today:
"Hope is the hardest love we carry." ~ Jane
Anthony came next and he said that mom was asleep when he got there. She was in her wheelchair. He woke her and she woke up and was neither happy or sad, just flat affect today. He talked to her and then her lunch arrived. The Occupational Therapist was no place to be found so Anthony sent the CNA to find the OT. While the CNA searched, Anthony worked on waking mom up so that she would participate well with eating. The OT arrived and had to coax mom with the first few spoonfuls of food, then mom fed herself. But mom kept getting sleepy in between bites. She had pork chops, brussel sprouts, baked potatoes, coffee, juice and fruit. The OT had to feed mom hand over hand at first, but then mom fed herself. The OT reminded Anthony that mom needs to make "marked" progress this week like stabbing her food with the fork or OT will be dropped -- no more therapy. Anthony suggested that the OT lower the table for mom. This worked well in helping mom to reach her plate of food but it was then a longer distance from the table to her mouth and she sometimes gave up lifting the fork halfway. One of the CNAs said to be sure mom's progressive lens glasses were in the right spot on her face or the food would appear to be even further away. Mom tried to pierce her food several times but couldn't and the OT commented that mom didn't appear to have the strength to do it. (So why not work with her --- give her therapy to strengthen them?????!!!! It won't happen all alone!!). UGH! The OT said mom's feeding skills are inconsistent right now...and then she said maybe it is OK that mom doesn't pierce her food because some people just scoop with the fork. After 35 minutes the OT person left and Anthony finished encouraging mom to eat and feed herself until another CNA came into the room. While the OT was there, mom would feed herself 3-4 times alone and then the OT fed her 1-2 times, then mom fed herself alone and then the OT would do it (because mom would stop in between and look tired and sleepy). Anthony said that mom would actually brighten up at times and seem to look surprised that she was eating...then get sleepy again. The OT was happy with mom's progress overall. The CNAs saw mom feeding herself and were all very thrilled by it. It took over an hour for mom to finish lunch but she did it. Anthony brought his baseball card collection to show mom and talk to her about (he is just so awesome...he makes me cry when he tells me what he does and plans to do with her...what a teacher he has become or maybe always was!!). They looked at the cards together. Mom was a big Brooklyn Dodgers fan. Later she became a MET fan. Mom looked at the cards with interest and obvious pleasure but didn't seem to want to touch them. Anthony thought she knew how valuable they were and wouldn't want to ruin them. Anthony asked mom if he should bring the cards back tomorrow and she said, "Yes" happily.
She fell asleep again just when Dad and Aunt Sophie came to see her. She was relatively quiet and/or sleeping while Aunt Sophie was there. Dad brought Aunt Sophie home then and came back to see mom later after an early dinner. He put her to bed tonight. He said that she ate well at dinner. He also said that when he went to leave tonight, mom asked him, "Why do you have to leave me?" and he cried.
This is a difficult situation. Many people have commented in many ways on many aspects. One person mentioned to me recently, "Wow. It isn't fair. I mean she went to church all the time, sang in the choir..." We all will die some day. No matter what we do. Dying is a part of living, at least in this life right now it is. It is important to remember that bad things happen to everyone at one time or another. What is important is to have faith in God... He alone knows that He Alone is the only One Who gets us through each day. Life is full of bad things happening...if it wasn't God would never have sent a Savior...there would be no need. God is with us always. Life is tragic at times, heartbreaking even...but God is there for us in the midst of it all. Also, others question how much we give to mom...some ask if she gave that much to us? Love isn't given based on what was received...it is just given freely....to whatever extent we are all able to give love. We give mom all that we do because we have hope for her recovery still. My dear friend, Sister Mary Ann shared a line from a poem today:
"Hope is the hardest love we carry." ~ Jane
Sunday, March 27, 2011
Mom Update, March 27, 2011, Sunday
I don't remember if I mentioned a fascinating and touching movie we saw last week, "The Music Never Stopped" -- but it is out on Long Island now. About traumatic brain injury and music therapy. See it.
Claudia, John and Ava began the day with mom. They cleaned out her ears, put her hearing aids in and her glasses on, and began to stretch her hands to start her physical therapy/range of motion exercises but then mom’s breakfast came. They said that mom was awake and alert. They moved the table to the right side of the bed and raised and lowered the height of the bed in just such a way that they could fit the table over and under the bed so that mom’s food was in front of her on the tray in order for mom to be able to feed herself. The aide gave her the first 2 forkfuls and then mom fed herself the rest of her breakfast alone!! She had difficulty with the oatmeal—manipulating the spoon---she tends to keep her eating utensils at the wrong angle sometimes—more perpendicular to the dish rather than parallel which makes it hard to scoop or stab food. But mom did feed herself!! She even motioned for the coffee and wiggled her finger for it (she likes her coffee first—the aide today was a substitute one so she didn’t know this about mom!). They left the Food Network on for her after they left. They also read the Psalm 23 poster on the wall and when they got to “green” mom said, “pastures…” and finished the line before it was read. Mom also said, “I love you” as well.
Anthony, Con, Sammy and Anthony Michael and Dad came to see mom next. Emily and Anthony (Con and John’s cousins) came to see mom too. Emily and Anthony brought mom a beautiful African violet. It went on the windowsill next to the daffodils that Con brought her. They all talked and laughed. Dad said that mom tried to talk to everyone but very quietly (even though she can only mouth words, she can do it with great enunciation or mumbling which we refer to as quietly). Anthony and the kids did mom’s full physical therapy/range of motion exercises twice. Anthony worked a lot with her legs too. Mom ate lunch and fed herself a bit---but she resisted doing it at first. Neither the aide or Anthony could get mom to feed herself. Finally, Anthony asked Anthony Michael to tell mom to do it and she listened to him and fed herself. She ate meat loaf, mashed potatoes, peas and carrots, coffee, juice, and a roll. They said mom was sleepy but stayed awake while they visited.
There is a real problem with keeping people working at the facility. People are leaving left and right. Evidently, there are many people who call in sick and/or quit and no one is around to take their place. The people left working are grossly overworked and busy and are unable to keep up with the work. Because of this situation, mom was in bed until 2:30. There wasn’t enough staff around to help move her to the chair.
Terry, Lenny and I came next, as the others were leaving. Mom greeted me with a “Hello” and big smile and bright eyes, but then promptly fell asleep. Tomorrow, the head of respiratory said he is going to put mom on CPAP mode on the vent during the day and back on the vent SMIV mode at night. This means that mom will have pretty much no vent assistance during the day—just blowing air into the trach and only have vent assistance at night.
Dad put mom to bed tonight.
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." Proverbs 3:5
Claudia, John and Ava began the day with mom. They cleaned out her ears, put her hearing aids in and her glasses on, and began to stretch her hands to start her physical therapy/range of motion exercises but then mom’s breakfast came. They said that mom was awake and alert. They moved the table to the right side of the bed and raised and lowered the height of the bed in just such a way that they could fit the table over and under the bed so that mom’s food was in front of her on the tray in order for mom to be able to feed herself. The aide gave her the first 2 forkfuls and then mom fed herself the rest of her breakfast alone!! She had difficulty with the oatmeal—manipulating the spoon---she tends to keep her eating utensils at the wrong angle sometimes—more perpendicular to the dish rather than parallel which makes it hard to scoop or stab food. But mom did feed herself!! She even motioned for the coffee and wiggled her finger for it (she likes her coffee first—the aide today was a substitute one so she didn’t know this about mom!). They left the Food Network on for her after they left. They also read the Psalm 23 poster on the wall and when they got to “green” mom said, “pastures…” and finished the line before it was read. Mom also said, “I love you” as well.
Anthony, Con, Sammy and Anthony Michael and Dad came to see mom next. Emily and Anthony (Con and John’s cousins) came to see mom too. Emily and Anthony brought mom a beautiful African violet. It went on the windowsill next to the daffodils that Con brought her. They all talked and laughed. Dad said that mom tried to talk to everyone but very quietly (even though she can only mouth words, she can do it with great enunciation or mumbling which we refer to as quietly). Anthony and the kids did mom’s full physical therapy/range of motion exercises twice. Anthony worked a lot with her legs too. Mom ate lunch and fed herself a bit---but she resisted doing it at first. Neither the aide or Anthony could get mom to feed herself. Finally, Anthony asked Anthony Michael to tell mom to do it and she listened to him and fed herself. She ate meat loaf, mashed potatoes, peas and carrots, coffee, juice, and a roll. They said mom was sleepy but stayed awake while they visited.
There is a real problem with keeping people working at the facility. People are leaving left and right. Evidently, there are many people who call in sick and/or quit and no one is around to take their place. The people left working are grossly overworked and busy and are unable to keep up with the work. Because of this situation, mom was in bed until 2:30. There wasn’t enough staff around to help move her to the chair.
Terry, Lenny and I came next, as the others were leaving. Mom greeted me with a “Hello” and big smile and bright eyes, but then promptly fell asleep. Tomorrow, the head of respiratory said he is going to put mom on CPAP mode on the vent during the day and back on the vent SMIV mode at night. This means that mom will have pretty much no vent assistance during the day—just blowing air into the trach and only have vent assistance at night.
Dad put mom to bed tonight.
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." Proverbs 3:5
Saturday, March 26, 2011
Mom Update, March 26, 2011, Saturday
When I came to see mom this morning to start the day, she was asleep. I tried to wake her, but she was sleeping soundly. I decided to let her rest even though it was 9 a.m. She slept until her aide came (a new person, a young man maybe in his 20s) to get her read for her shower. I wished there was a young woman to shower her and not a young man. She slept. The young man and the respiratory therapist who was present during the G-Tube debacle took her to the shower. She was back in about 7 minutes---way too quickly to be showered appropriately. I commented casually (“Gee, that was fast?”) but, of course, received no reply to the comment. After mom’s shower, she was still sleepy. The nurse even tried to wake her but to no avail. Mom would open her eyes—or keep them open after we lifted her lids---for a few seconds and then go right back out to sleep. They put mom in her wheelchair after she was showered and mom went promptly to sleep again. I put some music on her IPOD with the headphones so she could listen as she slept. Today, I noticed that she was leaning a lot to the left side rather than her usual rightward lean. Her hands and fingers were very loose during physical therapy. Mom’s aide said she ate a full breakfast of ham, eggs, croissant and juice and coffee. Mom slept until lunchtime. The aide started to feed her and very quickly the first few forkfuls – but then I told her the OT wants her to feed herself and then the aide let mom do it. At first, I gave her many verbal prompts coupled with a few physical prompts but not many and not full manual prompts---just light touches. Mostly, I helped by piling the food to one side of the dish, near the front and right side so mom could easily scoop. Mom ate the entire lunch alone!!!!! She fed herself using the spoon and the fork!!!!! Her skills increased more and more as the meal progressed. At one point, she looked at me and asked, “Where’s the music?” because I always play music while she eats!!! I started with the waltz music but that made her calm and slow and not focused…so I switched to the Ragtime music and she ate and fed herself well!!! Mom did much better feeding herself when the music was peppy as opposed to slow. I asked mom what song was playing twice and she named the songs, “Baby Face” and “By the Sea” and she also told me several times, “Oh…the music is beautiful.” I also saw mom staring at my shirt so I asked her what my shirt said and mom read, “Don’t quit 5 minutes before the miracle happens.” She had tilapia, juice, coffee, rice, string beans, and a soft roll. She ate the roll with her fingers. She ate the rice and fish with a fork. At times, she scooped food onto the fork and other times, she stabbed or speared the food with the fork. She also occasionally scooped with the spoon but clearly preferred the fork—her utensil of choice. I tried to help her eat by feeding her a spoonful near the end of the meal and mom said, “Stop that” and gave me a dirty look! I guess the hierarchy of things is timeless---she is the mom, I am the daughter. Period. Mom would stop eating to fix her glasses, so at one point, I asked her if I should take her glasses off and she said, “No, I’m supposed to wear them.” It took mom 1 ½ hours to feed herself but she did it!!!! She had a minimal amount of food left when she finished…maybe about ¼ of the meal left. She is such a perfectionist!!! She always was and it is funny to think that she still is one now!!! She is so careful when she eats because she doesn’t want to drop food or spill anything!!! I told her it is hard to relearn tasks when we are OCD (obsessive compulsive disordered)!!! Her aide patiently stood by for 45 minutes before she left and let me assisting mom to finish the meal with mom. After lunch, mom took another nap. She would open her eyes periodically and look around alertly but then in a few minutes she’d fall asleep again….out like a light. In one of the brief interludes when she was awake, I put the large, plastic buttons on the table along with the container with the slot in the top. Then I moved away. Mom looked at all on the table and picked up the container and placed it low in her lap---as though to begin the task of placing the buttons into the slot, but then she fell fast asleep again. When mom woke up, I asked her to put the buttons away for me in the container and she said, “I really don’t want to.”
Dad and Aunt Sophie came to see mom next. Dad picked up Aunt Sophie this morning. Con and Anthony came next. Mom was very tired. Ava and Claudia came next. Mom was still tired. They said that mom was predominantly sleepy and sleeping, but she did try to talk and laughed and sang songs with them. Mom sang, "Those Were the Days" with everyone. Dad brought Aunt Sophie back to his and mom's house and went back to put mom to bed tonight.
"For the Scriptures say, 'He will order his angels to protect and guard you." Luke 4:10
Dad and Aunt Sophie came to see mom next. Dad picked up Aunt Sophie this morning. Con and Anthony came next. Mom was very tired. Ava and Claudia came next. Mom was still tired. They said that mom was predominantly sleepy and sleeping, but she did try to talk and laughed and sang songs with them. Mom sang, "Those Were the Days" with everyone. Dad brought Aunt Sophie back to his and mom's house and went back to put mom to bed tonight.
"For the Scriptures say, 'He will order his angels to protect and guard you." Luke 4:10
Friday, March 25, 2011
Mom Update, March 25, 2011, Friday
Claudia started the day with mom. She said that mom was sound asleep and out like a light. She couldn’t be wakened, even when Claudia tried to open her eyes. She did mom’s full physical therapy/range of motion exercises any way.
Anthony came next and said that mom was still sound asleep when he arrived. He, too, tried to open her eyes but she just closed them back up and slept. He did her full physical therapy/ range of motion exercises and mom slept. Mom had lunch in the recreation room with the other residents. They had Boston Market (I gave the recreation therapist the money early in the week). Before she went to the luncheon, the Occupational Therapist came in to work with mom and she wouldn’t come back for the luncheon because mom’s OT time was then. So, the CNA ran to get something for mom to eat while the OT was there, before the OT left. The CNA returned with some apple pie and the OT person helped mom feed herself. But mom didn’t do well with feeding herself today. She didn’t eat much either. The Occupational Therapist told Anthony that mom had to show more improvement next week---specifically, mom has to begin to stab the food with the fork and put the fork to her mouth and feed herself---or therapy will stop after next week. ONCE AGAIN…HOW CAN SHE LEARN TO STAB FOOD WITH THE FORK IF NO ONE TEACHES HER HOW?????!!!! Exasperating. Mom then went to the recreation room to have Boston Market. Anthony went with her but said that she didn’t eat much (he fed her) and that she fell asleep again…so much so, that she was out like a light.
Dad said that the piano lady left a CD of a singer (Russell Watson) and Anthony played a few songs for her. Dad did mom’s full physical therapy/range of motion exercises. He said that Maureen came to see mom and though mom dozed on and off, she did begin to mouth things to Maureen as Maureen was leaving. When the head of respiratory and the pulmonologist came to see mom this week, the pulmonologist asked mom if she thought he was handsome (they kid with her) and mom took his picture ID in her hand , looked at it, and smiled (like in laughter).
Mom was just starting dinner when I arrived. She had quiche, mixed vegetables, pudding, soup, and juice and milk and coffee. She ate everything up. When mom heard me tell what the OT said about stabbing the food with the fork, she grabbed the fork from the CNA. Mom’s night CNA told us that mom’s room is her “quiet, escape place” at night. She said that she often sits with mom and talks to her. She told mom that she is pregnant and mom said, “You’re having a baby?” and then felt her abdomen. Mom’s night CNA also sings to mom and teaches her Christian church songs! She said mom is a fast learner. She said she loves to watch Jean’s movie with mom, “Just Like Joe” and especially loves the parts with mom in them. I tried to do the large wooden puzzles (farm animals and fish puzzles) with mom next. She wasn’t interested but Dad and I explained that they were good for her hands. She gave a few half-hearted attempts but mostly we did it hand over hand. By the time I turned around, mom was out like a light again. I played the Russell Watson CD while mom ate and did the puzzles and eventually slept. She loved the music. You could see she was paying attention to the music by her facial expression. I also played the “By the Beautiful Sea: Ragtime Favorites from the Boardwalk” CD as well. Though dad and I sang and dad even danced some, mom slept. I also tried cutting with the scissors. Anthony brought in 4x6 family photos for mom to cut so we can put them on the wall beside her bed. Though she started out strong (for a few seconds), she quickly fell asleep. Dad and I tucked mom in for the night and prayed over her.
“My God shall supply all my needs.” Philippians 4:19
Anthony came next and said that mom was still sound asleep when he arrived. He, too, tried to open her eyes but she just closed them back up and slept. He did her full physical therapy/ range of motion exercises and mom slept. Mom had lunch in the recreation room with the other residents. They had Boston Market (I gave the recreation therapist the money early in the week). Before she went to the luncheon, the Occupational Therapist came in to work with mom and she wouldn’t come back for the luncheon because mom’s OT time was then. So, the CNA ran to get something for mom to eat while the OT was there, before the OT left. The CNA returned with some apple pie and the OT person helped mom feed herself. But mom didn’t do well with feeding herself today. She didn’t eat much either. The Occupational Therapist told Anthony that mom had to show more improvement next week---specifically, mom has to begin to stab the food with the fork and put the fork to her mouth and feed herself---or therapy will stop after next week. ONCE AGAIN…HOW CAN SHE LEARN TO STAB FOOD WITH THE FORK IF NO ONE TEACHES HER HOW?????!!!! Exasperating. Mom then went to the recreation room to have Boston Market. Anthony went with her but said that she didn’t eat much (he fed her) and that she fell asleep again…so much so, that she was out like a light.
Dad said that the piano lady left a CD of a singer (Russell Watson) and Anthony played a few songs for her. Dad did mom’s full physical therapy/range of motion exercises. He said that Maureen came to see mom and though mom dozed on and off, she did begin to mouth things to Maureen as Maureen was leaving. When the head of respiratory and the pulmonologist came to see mom this week, the pulmonologist asked mom if she thought he was handsome (they kid with her) and mom took his picture ID in her hand , looked at it, and smiled (like in laughter).
Mom was just starting dinner when I arrived. She had quiche, mixed vegetables, pudding, soup, and juice and milk and coffee. She ate everything up. When mom heard me tell what the OT said about stabbing the food with the fork, she grabbed the fork from the CNA. Mom’s night CNA told us that mom’s room is her “quiet, escape place” at night. She said that she often sits with mom and talks to her. She told mom that she is pregnant and mom said, “You’re having a baby?” and then felt her abdomen. Mom’s night CNA also sings to mom and teaches her Christian church songs! She said mom is a fast learner. She said she loves to watch Jean’s movie with mom, “Just Like Joe” and especially loves the parts with mom in them. I tried to do the large wooden puzzles (farm animals and fish puzzles) with mom next. She wasn’t interested but Dad and I explained that they were good for her hands. She gave a few half-hearted attempts but mostly we did it hand over hand. By the time I turned around, mom was out like a light again. I played the Russell Watson CD while mom ate and did the puzzles and eventually slept. She loved the music. You could see she was paying attention to the music by her facial expression. I also played the “By the Beautiful Sea: Ragtime Favorites from the Boardwalk” CD as well. Though dad and I sang and dad even danced some, mom slept. I also tried cutting with the scissors. Anthony brought in 4x6 family photos for mom to cut so we can put them on the wall beside her bed. Though she started out strong (for a few seconds), she quickly fell asleep. Dad and I tucked mom in for the night and prayed over her.
“My God shall supply all my needs.” Philippians 4:19
Thursday, March 24, 2011
Mom Update, March 24, 2011, Thursday
I began the day with mom this morning before work. Mom was asleep when I arrived. The head of respiratory therapy followed me into the room, along with another respiratory therapist. The two watched as I woke mom by talking to her and then finally by opening her eyelids...she was awake with her eyes closed. She opened her eyes and smiled at me broadly---like an angel, so pure was her look. The 2 therapists began talking to her and she turned to them and smiled with a pleasantly surprised look on her face. The head of respiratory asked me how long I would be around this morning because he said he'd like to run an experiment with mom's vent settings for a while just to see what will happen. Then they began to talk to mom again as he fiddled with the vent settings. I left the room to get mom's hearing aids, I told them the aids were not in and it may be difficult for mom to hear without them. When I returned with the aids not 2 minutes later, the head of respiratory said that the experiment was already over---"Let me tell you what occurred" he said that, though mom's current progress on the current settings was very, very good (rate 6, PSV 12) and that she should definitely be ready to have the vent lowered, when he put the vent on the CPAP mode, mom's respiratory levels began to rise, so he went back to the original settings. He left then. I asked the other respiratory person if the fact that mom was barely awake could have effected the results, and he said, "Of course it does." He said he had mentioned this to the head person but the head guy didn't want to listen. Later today, when dad came, he asked the head of respiratory about going back to the CPAP mode while mom was more awake and the head of respiratory said he would try again on Monday morning. Whatever. Please pray that mom gets off that darn vent. Mom's aide came in with breakfast next. Mom had hard boiled eggs, juice, vanilla milk in oatmeal (mom likes this, her aide figured it out), croissant with butter, coffee). The aide said she figured out how to get mom to feed herself, she gives mom a fork of food and says, "OK feed yourself. and mom bites tiny bites of food off the fork and then puts the fork in her mouth and feeds herself. The aide also said that she knows that mom feels most comforted when someone sits next to her and not facing her. Mom closed her eyes once and her aide told her to open them and mom did!!!! Her aide tells mom, "lift" or "eat" or "chew" and mom follows every direction and eats independently!! Her aide is so good with her. So is her night aide (3-11 shift). Before I left for work, I told the aide to wait a minute while I prayed with mom. I anointed mom with frankincense on her temples and forehead (good for concentration) and then I prayed with mom. When I finished, the aide asked if we all do this with mom. I told her we do and the aide said, "That's the difference in her!!! She is so much better than everybody else here because of the prayers!!!"
Dad was with mom next and he said that mom was awake, talkative, and alert all day. He said she ate a good dinner. Claudia came in the evening and said that she, dad and mom played UNO!!! Mom held her cards alone and picked up a few cards alone too and even selected one or two cards correctly. They looked at the picture dictionary next and mom turned the pages half way alone, then hand over hand the rest of the way. Mom had a hamburger and fries for dinner. Claudia gave mom a choice of doing a crossword puzzle or a jigsaw and mom picked the crossword eagerly...she grabbed it. She guessed 2 clues:
- --- "Snow vehicle" Mom said, "Sled"
----" a blank for news" mom said, "nose"
She didn't guess the rest. They sang songs on the IPAD next: all the words to MOON RIVER, MORE...then Claudia played music and did a slide show of the family photos on the IPAD and mom paid attention to the pictures. Then they played a number game on the IPAD but mom was very tense with Claudia doing the hand over hand prompting. When Claudia said, "Why are you fighting me? Don't you want to do this?" Mom said, "Yes. I'm not fighting you." They tried the Oral Motor exercises on the IPAD but mom just looked and wouldn't do it. The last thing they did was the oral motor exercises that Carmine showed us. Then they tucked mom in and put her to bed and prayed.
"Forgetting what lies behind and reaching forward to what lies ahead, I press on..." Philippians 3:13
Dad was with mom next and he said that mom was awake, talkative, and alert all day. He said she ate a good dinner. Claudia came in the evening and said that she, dad and mom played UNO!!! Mom held her cards alone and picked up a few cards alone too and even selected one or two cards correctly. They looked at the picture dictionary next and mom turned the pages half way alone, then hand over hand the rest of the way. Mom had a hamburger and fries for dinner. Claudia gave mom a choice of doing a crossword puzzle or a jigsaw and mom picked the crossword eagerly...she grabbed it. She guessed 2 clues:
- --- "Snow vehicle" Mom said, "Sled"
----" a blank for news" mom said, "nose"
She didn't guess the rest. They sang songs on the IPAD next: all the words to MOON RIVER, MORE...then Claudia played music and did a slide show of the family photos on the IPAD and mom paid attention to the pictures. Then they played a number game on the IPAD but mom was very tense with Claudia doing the hand over hand prompting. When Claudia said, "Why are you fighting me? Don't you want to do this?" Mom said, "Yes. I'm not fighting you." They tried the Oral Motor exercises on the IPAD but mom just looked and wouldn't do it. The last thing they did was the oral motor exercises that Carmine showed us. Then they tucked mom in and put her to bed and prayed.
"Forgetting what lies behind and reaching forward to what lies ahead, I press on..." Philippians 3:13
Wednesday, March 23, 2011
Mom Update, March 23, 2011, Wednesday
Today is Terry's birthday!!!
Claudia said that mom was out like a light when she came this morning. Mom was sleepy. Claudia tried to wake mom up and even opened her eyes but mom went right back out. Mom was very tight this morning, usually she is loose when she is sleepy. Mom pointed at her eyes as though asking for her glasses when she woke at one point, so Claudia put her glasses on but mom went back to sleep. Claudia did mom’s full physical therapy/range of motion exercises as mom slept.
Anthony arrived just as mom was taken out of the shower and she was wide awake then. He wrote that they talked and laughed. Mom had lunch—meatloaf, potatoes, juice and a cookie. Right after lunch, mom fell asleep.
Dad came next and said that mom wouldn’t cooperate at all with the speech therapist today. Wouldn’t work at all. He also said mom was quiet and wouldn’t talk to him.
When I came, mom was awake but still quiet. I gave her some juice and she drank it alone. We tried to do the pom poms and tweezers and the container. Mom picked up 2 pom poms with no tweezer and put them in the hole in the container. She tried to use the tweezers but mostly resisted the activity, so I did it hand over hand. Next, we tried the clothespins on the cup edge. Mom seemed to be trying to open the clothespins independently but couldn’t do it so I did it with her hand over hand. Dad and I took out the mini bicycle table top machine and we had mom hold on each pedal and we rotated the pedals and mom hung on and pedaled with her arms. She did well with the activity, though she couldn't pedal on her own, she held on and managed to go with the flow for quite a while. I don't think mom has moved so much in months when I stop to think about it. Before I left, I did the oral motor exercises that Carmine showed us how to do with mom. I did clockwise and counterclockwise circular motions above and below mom's upper and lower lips, and on her face where her jaw joint is. Quick, circular motions in counts of 50. Dad bought mom some sneakers, wide width, but they are still too narrow. The social worker is bringing us a catalogue tomorrow to look at for sneakers. Since mom hasn't been wearing her sneakers, her feet are starting to mildly turn outward at the ankle.
Samantha said that mom was awake and happy to see Con and Sammy but she was very quiet. She held dad's hand a lot and they watched TV and talked to her. She was very quiet. Mom was touching dad alot. At one point, mom actually was mouthing words to them but they didn't know what she was saying. They did her full physical therapy/range of motion exercises. They exercised her arms with the orange scrunchy tube. They asked mom whose birthday was today and she mouthed, "Terry." They asked her to smile and she did. Mom was very comfortable and a little sleepy. Every time I come home from work at night and hear Sam's voice on the phone answering machine reporting how mom was...it makes me cry. Sammy is such a beautiful girl and she has (and always has had since she was a toddler) such a special gift and call for taking care of others. She touches my heart.
Dad put mom to bed tonight.
"let's not merely say that we love each other; let us show the truth by our actions." 1 John 3:18
Claudia said that mom was out like a light when she came this morning. Mom was sleepy. Claudia tried to wake mom up and even opened her eyes but mom went right back out. Mom was very tight this morning, usually she is loose when she is sleepy. Mom pointed at her eyes as though asking for her glasses when she woke at one point, so Claudia put her glasses on but mom went back to sleep. Claudia did mom’s full physical therapy/range of motion exercises as mom slept.
Anthony arrived just as mom was taken out of the shower and she was wide awake then. He wrote that they talked and laughed. Mom had lunch—meatloaf, potatoes, juice and a cookie. Right after lunch, mom fell asleep.
Dad came next and said that mom wouldn’t cooperate at all with the speech therapist today. Wouldn’t work at all. He also said mom was quiet and wouldn’t talk to him.
When I came, mom was awake but still quiet. I gave her some juice and she drank it alone. We tried to do the pom poms and tweezers and the container. Mom picked up 2 pom poms with no tweezer and put them in the hole in the container. She tried to use the tweezers but mostly resisted the activity, so I did it hand over hand. Next, we tried the clothespins on the cup edge. Mom seemed to be trying to open the clothespins independently but couldn’t do it so I did it with her hand over hand. Dad and I took out the mini bicycle table top machine and we had mom hold on each pedal and we rotated the pedals and mom hung on and pedaled with her arms. She did well with the activity, though she couldn't pedal on her own, she held on and managed to go with the flow for quite a while. I don't think mom has moved so much in months when I stop to think about it. Before I left, I did the oral motor exercises that Carmine showed us how to do with mom. I did clockwise and counterclockwise circular motions above and below mom's upper and lower lips, and on her face where her jaw joint is. Quick, circular motions in counts of 50. Dad bought mom some sneakers, wide width, but they are still too narrow. The social worker is bringing us a catalogue tomorrow to look at for sneakers. Since mom hasn't been wearing her sneakers, her feet are starting to mildly turn outward at the ankle.
Samantha said that mom was awake and happy to see Con and Sammy but she was very quiet. She held dad's hand a lot and they watched TV and talked to her. She was very quiet. Mom was touching dad alot. At one point, mom actually was mouthing words to them but they didn't know what she was saying. They did her full physical therapy/range of motion exercises. They exercised her arms with the orange scrunchy tube. They asked mom whose birthday was today and she mouthed, "Terry." They asked her to smile and she did. Mom was very comfortable and a little sleepy. Every time I come home from work at night and hear Sam's voice on the phone answering machine reporting how mom was...it makes me cry. Sammy is such a beautiful girl and she has (and always has had since she was a toddler) such a special gift and call for taking care of others. She touches my heart.
Dad put mom to bed tonight.
"let's not merely say that we love each other; let us show the truth by our actions." 1 John 3:18
Monday, March 21, 2011
Mom Update, March 21, 2011, Monday
Claudia began the day with mom again this morning and said that she was in the amazing mood. Claudia told mom what she made for dinner last night and mom said, "Ohhh...how delicious." Then Claudia told mom what ingredients she put in the dinner she made and Claudia wrote the ingredients on the white board as she told mom. When mom read the ingredients, she said again, "Wow...delicious!" Claudia also did the calendar with mom and as Claudia showed mom the month, day, year...and told mom, "Today is Monday, March 21, 2011" mom said to Claudia, "I thought it was March 21!" Claudia called Anthony and told him mom was in a great mood and to come right away.
Anthony came early this morning but when he arrived, mom was asleep. She was still in bed so he let her sleep a while. At 10:15, mom woke up. He asked mom to click her tongue and she did. He also asked her to make different faces and mom did. He asked he to make a funny face and she did. Anthony had brought a picture of dad fishing to show to mom. He said he purposely printed it in a 4 x 6 size so that he could ask mom to help him cut out the picture to hang on the wall!!!! Anthony has a definite call in the field of special education!!! He is becoming one amazing teacher to mom!!! He said that mom cut the whole picture out alone!!! It took a while, but she did it!! He then said that, since mom was in bed, he'd try to do her physical therapy/ range of motion exercises and to try to get her to lift her legs. He put the 10 inch ball under each knee, one at a time, and tried to get mom to lift her leg but she only was able to move her feet alternately. They looked at and read the vocabulary book next (someone brought mom a children's dictionary). He said she enjoyed doing this and also tried to turn the pages but couldn't. The Occupational therapist came in next (it was about 11:30 now) and mom was still in bed. The therapist found an aide to move mom to the chair so that the therapist could work on teaching mom to feed herself. Mom wouldn't do it at first, but the therapist knew this was mom's pattern, so she helped mom with the first 2 forkfuls of food and then mom fed herself the next 2 forkfuls. However, mom fell asleep. So the therapist told the aide to finish feeding mom. Anthony teased and said that, as soon as the therapist leaves, mom would wake and feed herself. Sure enough, mom woke shortly thereafter and began to feed herself, so Anthony looked for the OT. When he came back, mom was alone in the room, feeding herself lunch!!! While this is good, it is also dangerous that mom was left alone without mitts eating hot dogs!! Anyway, the aide had seen the OT and ran to get her. The three of them, Anthony, the aide, and the OT, stood at the door and watched mom for a while feeding herself. The OT then came in and praised mom's attempts. Mom not only independently used the fork to feed herself, but she also picked up bread with her fingers and ate that too. Anthony gave mom some thickened lemon water and mom loved it. She drank it all up. Mom drank alone/independently. The speech therapist came in next and Anthony stayed in the room at first while the Speech person worked with mom. The speech therapist told mom to do the easy, simply stuff quickly and they'd move to harder, more challenging things. The speech therapist also took her white coat off and stethoscope as well (as Anthony suggested weeks ago). Mom worked well with the Speech therapist for the first time!!! The therapist asked mom crossword puzzle-like questions like: "What shines bright in the sky at night?" and mom answered, "Stars." The therapist asked mom 5 such questions and mom answered all of them!! Dad came next so he and Anthony left the room so mom wouldn't be distracted while she did her speech session. Anthony said that when he arrived, mom's vent was down from 8 to 7. She was fine. The respiratory therapist came back and lowered it from 7 to 6 next. Anthony thought he saw mom get a little goofy and loopy but the respiratory therapist said mom's numbers were great!! Anthony left and Dad came next. Dad said the speech therapist told him that mom repeated all the days of the week and did wonderfully with her!! Dad said mom was awake but wouldn't do anything with him. He said he did her PT. He said mom had a nice dinner of pizza, soup, blueberry muffin and juice for dinner. He said that mom talked/mouthed alot to him, but he didn't always understand what she said.
Claudia came to tuck mom in tonight. She said that mom was sleeping but she opened mom’s eyes and she smiled at Claudia and woke up and was happily awake. She said, at one point, mom opened her mouth and pointed to her tongue so Claudia asked her if she was thirsty and mom mouthed, “Yes.” Claudia asked someone to get mom a drink but then she found it in the recreation room. Claudia got mom some vanilla milk and mom smiled when she saw it. Claudia put it in the cup that dad bought her and then tried to get mom to drink herself by holding the cup but mom wouldn’t at first. Mom drank and drank and occasionally held the cup. They prayed---Claudia asked mom if she wanted to pray and mom said yes and closed her eyes. Claudia prayed for God to continue to heal her legs, arms, hands, and mind. Then Claudia anointed her with the Rose of Sharon oil and tucked mom in for the night.
Tonight, I was talking to a friend and I was sharing that one of the most important things I am learning through all this with mom, is to learn how to live in the moment. How to focus on only today…how not to look back or to look forward…but just to BE in the here and now. Just to live in today and for this moment. To make the most of today. A hard thing to do…but a lesson well to learn.
“See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…” Song of Solomon 2:11-12
Anthony came early this morning but when he arrived, mom was asleep. She was still in bed so he let her sleep a while. At 10:15, mom woke up. He asked mom to click her tongue and she did. He also asked her to make different faces and mom did. He asked he to make a funny face and she did. Anthony had brought a picture of dad fishing to show to mom. He said he purposely printed it in a 4 x 6 size so that he could ask mom to help him cut out the picture to hang on the wall!!!! Anthony has a definite call in the field of special education!!! He is becoming one amazing teacher to mom!!! He said that mom cut the whole picture out alone!!! It took a while, but she did it!! He then said that, since mom was in bed, he'd try to do her physical therapy/ range of motion exercises and to try to get her to lift her legs. He put the 10 inch ball under each knee, one at a time, and tried to get mom to lift her leg but she only was able to move her feet alternately. They looked at and read the vocabulary book next (someone brought mom a children's dictionary). He said she enjoyed doing this and also tried to turn the pages but couldn't. The Occupational therapist came in next (it was about 11:30 now) and mom was still in bed. The therapist found an aide to move mom to the chair so that the therapist could work on teaching mom to feed herself. Mom wouldn't do it at first, but the therapist knew this was mom's pattern, so she helped mom with the first 2 forkfuls of food and then mom fed herself the next 2 forkfuls. However, mom fell asleep. So the therapist told the aide to finish feeding mom. Anthony teased and said that, as soon as the therapist leaves, mom would wake and feed herself. Sure enough, mom woke shortly thereafter and began to feed herself, so Anthony looked for the OT. When he came back, mom was alone in the room, feeding herself lunch!!! While this is good, it is also dangerous that mom was left alone without mitts eating hot dogs!! Anyway, the aide had seen the OT and ran to get her. The three of them, Anthony, the aide, and the OT, stood at the door and watched mom for a while feeding herself. The OT then came in and praised mom's attempts. Mom not only independently used the fork to feed herself, but she also picked up bread with her fingers and ate that too. Anthony gave mom some thickened lemon water and mom loved it. She drank it all up. Mom drank alone/independently. The speech therapist came in next and Anthony stayed in the room at first while the Speech person worked with mom. The speech therapist told mom to do the easy, simply stuff quickly and they'd move to harder, more challenging things. The speech therapist also took her white coat off and stethoscope as well (as Anthony suggested weeks ago). Mom worked well with the Speech therapist for the first time!!! The therapist asked mom crossword puzzle-like questions like: "What shines bright in the sky at night?" and mom answered, "Stars." The therapist asked mom 5 such questions and mom answered all of them!! Dad came next so he and Anthony left the room so mom wouldn't be distracted while she did her speech session. Anthony said that when he arrived, mom's vent was down from 8 to 7. She was fine. The respiratory therapist came back and lowered it from 7 to 6 next. Anthony thought he saw mom get a little goofy and loopy but the respiratory therapist said mom's numbers were great!! Anthony left and Dad came next. Dad said the speech therapist told him that mom repeated all the days of the week and did wonderfully with her!! Dad said mom was awake but wouldn't do anything with him. He said he did her PT. He said mom had a nice dinner of pizza, soup, blueberry muffin and juice for dinner. He said that mom talked/mouthed alot to him, but he didn't always understand what she said.
Claudia came to tuck mom in tonight. She said that mom was sleeping but she opened mom’s eyes and she smiled at Claudia and woke up and was happily awake. She said, at one point, mom opened her mouth and pointed to her tongue so Claudia asked her if she was thirsty and mom mouthed, “Yes.” Claudia asked someone to get mom a drink but then she found it in the recreation room. Claudia got mom some vanilla milk and mom smiled when she saw it. Claudia put it in the cup that dad bought her and then tried to get mom to drink herself by holding the cup but mom wouldn’t at first. Mom drank and drank and occasionally held the cup. They prayed---Claudia asked mom if she wanted to pray and mom said yes and closed her eyes. Claudia prayed for God to continue to heal her legs, arms, hands, and mind. Then Claudia anointed her with the Rose of Sharon oil and tucked mom in for the night.
Tonight, I was talking to a friend and I was sharing that one of the most important things I am learning through all this with mom, is to learn how to live in the moment. How to focus on only today…how not to look back or to look forward…but just to BE in the here and now. Just to live in today and for this moment. To make the most of today. A hard thing to do…but a lesson well to learn.
“See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…” Song of Solomon 2:11-12
Sunday, March 20, 2011
Mom Update, March 20, 2011, Sunday
Anthony, Con and Sammy started the day with mom. Mom was awake and in her chair. She was in a good mood and smiling a lot. She had an omelet with bacon, buttered white toast, and vanilla milk. Anthony did her physical therapy/range of motion exercises. He also worked on mom’s legs and had her doing a bicycle motion by holding her feet in his hands and pedaling (he did the movement, not mom—she couldn’t do it alone). They talked and I am sure that Anthony had mom laughing at one point or another too. Dad came to see mom too. He assisted Anthony with some of Mom’s physical therapy/range of motion exercises. Mom ate turkey with gravy, stuffing, carrots, and juice for lunch. After lunch, mom slept for about 20 minutes and then woke. Terry came to see mom too. They all watched a funny movie next, “The Great Outdoors.” Mom laughed at some of the parts of the movie. She kept falling asleep on and off. I came after Anth and Con and Sammy had just left—just missed them. Dad said that the respiratory therapist said that mom is doing really well with her breathing. The anti-biotic is helping her a lot (as per the respiratory person). I did all the various oral motor exercises with mom that Carmine showed us how to do. Mom pushed into all the cheek, chin and upper lip exercises nicely. She kept trying to close her mouth and bite the sponge on the stick. The CNA came to put mom into bed. After mom was in bed, I tried to do some of a crossword puzzle with her but she kept falling asleep. She independently drank from the cup that dad bought for her a lot today. Dad bought some hard, plastic cups for mom to use when drinking…similar to what a toddler or preschooler would use. These cups make all the difference for mom. At times she drinks from them with a straw, while at other times, she drinks without the straw. I did mom’s full physical therapy/range of motion exercises while she slept---she woke up in the middle of it. I also gave mom a manicure and pedicure as well..Mom had some ziti, garlic bread, mixed vegetables, vanilla milk, juice and peaches. The aide who came to feed her was someone new – he looked like he was Anthony-Michael’s age-15!!! Hahaha! He shoveled the first fork full of ziti in…and spilled a lot all over mom. I gently showed him how to cut the food and told him why it was necessary to do so. I complimented him for his attempts as soon as I could so he would do the job well…and it worked. I played some classical music as she ate. When Claudia came this evening to be with mom, dad and I went to dinner together (we celebrated a happy event at work for me!). Claudia said she tried to interact with mom, but mom was very sleepy. Mom finally was able to choose MASH from a spread of 3 DVDs so Claudia put it on. They watched it and laughed and held hands...then mom fell asleep. Claudia tucked her in for the night.
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4
Saturday, March 19, 2011
Mom Update, March 19, 2011, Saturday
Dad and Terry visited with mom today. They said that she was awake and alert. They did her physical therapy/range of motion exercises. Tonight, after Claudia, Ava, Lenny and I came home from the WNET Celebration of Teaching and Learning Conference, I visited with mom for a while. Donna and Tom were there (our cousins) and Tom had her laughing at some jokes; and making faces at others! She smiled at me when I arrived and said hello and she tried to say Happy Birthday, but only got the "Happy" out. She was tired so she listened to what we were saying and then eventually fell asleep. Dad and I tucked her in and prayed over her.
"May your unfailing love rest upon us, O LORD, even as we put our hope in you." Psalm 33:22
"May your unfailing love rest upon us, O LORD, even as we put our hope in you." Psalm 33:22
Mom Update, March 18, 2011, Friday
Happy Birthday Kathy!
Dad started mom's day.... Mom was awake but very tired.... The aid had to feed mom breakfast and lunch.. she kept dozing off. Anthony came to see mom next. Anthony said they checked her temp.. no temp.. Thank God...but has a runny nose...very sleepy. Blood work was done yesterday and today... yesterday's results were good (negative). Today's blood work did not come back yet.
Sister Suzanne came to see mom... Sister Suzanne and dad were talking and mom just sat and listened to them. Dad said when Sister Suzanne left, Florence and Maureen came to visit mom. Mom called Florence by her name. The aid fed mom dinner. Dad also mentioned that mom started on antibiotics for 7 days because her mucus did not look to good. Florence and Maureen left. Dad said that they watched TV and mom fell right to sleep. He tucked her in for the ngiht and kissed her
good night.
Con
Dad started mom's day.... Mom was awake but very tired.... The aid had to feed mom breakfast and lunch.. she kept dozing off. Anthony came to see mom next. Anthony said they checked her temp.. no temp.. Thank God...but has a runny nose...very sleepy. Blood work was done yesterday and today... yesterday's results were good (negative). Today's blood work did not come back yet.
Sister Suzanne came to see mom... Sister Suzanne and dad were talking and mom just sat and listened to them. Dad said when Sister Suzanne left, Florence and Maureen came to visit mom. Mom called Florence by her name. The aid fed mom dinner. Dad also mentioned that mom started on antibiotics for 7 days because her mucus did not look to good. Florence and Maureen left. Dad said that they watched TV and mom fell right to sleep. He tucked her in for the ngiht and kissed her
good night.
Con
Mom Update, March 17, 2011, Thursday
"Happy St. Patrick's Day".... Mom had a good day.
Claudia started mom's day. Smiling, alert, happy....Claudia said mom
waved "hi" and waved "bye" to her on her own. The resporitory guy came
in and said to mom " Top of the morning to you" and mom responded back
to him Top of the morning to you too". Claudia did full PT. Claudia put
on mom's head a St. Patrick's hat. She e-mailed it to us. Mom look so
cute and happy/smiling for wearing the hat. Claudia left and they were
getting mom ready for breakfast. Kathy and dad came next. Kathy said the
OT came to see mom. She ate lunch and had 12 forkfuls and drank from a
"coffee" cup.. no straw. In the midafternoon mom was awake, alert doing
great and watching tv with dad. Dad also had her pull the "orange" tube.
Kathy mentioned to one of the aids if its Ok for mom to drink more then
what she is drinking now. The dietician said absolutely. When we are
visiting with mom feel free to ask the nurses station for a her "thick
liquid drink"for mom to have between 2:00 - 8:00 . Tonight dad said mom
was in a good mood. She aid some crab salad, veggies, and ate most of it
for dinner. They look at magazines and watched tv. Dad tucked mom to bed
kiss her and said good night.
Claudia, Ava, Kathy and Lenny are at a conference for a few days in NYC.
God Bless,
Con
Claudia started mom's day. Smiling, alert, happy....Claudia said mom
waved "hi" and waved "bye" to her on her own. The resporitory guy came
in and said to mom " Top of the morning to you" and mom responded back
to him Top of the morning to you too". Claudia did full PT. Claudia put
on mom's head a St. Patrick's hat. She e-mailed it to us. Mom look so
cute and happy/smiling for wearing the hat. Claudia left and they were
getting mom ready for breakfast. Kathy and dad came next. Kathy said the
OT came to see mom. She ate lunch and had 12 forkfuls and drank from a
"coffee" cup.. no straw. In the midafternoon mom was awake, alert doing
great and watching tv with dad. Dad also had her pull the "orange" tube.
Kathy mentioned to one of the aids if its Ok for mom to drink more then
what she is drinking now. The dietician said absolutely. When we are
visiting with mom feel free to ask the nurses station for a her "thick
liquid drink"for mom to have between 2:00 - 8:00 . Tonight dad said mom
was in a good mood. She aid some crab salad, veggies, and ate most of it
for dinner. They look at magazines and watched tv. Dad tucked mom to bed
kiss her and said good night.
Claudia, Ava, Kathy and Lenny are at a conference for a few days in NYC.
God Bless,
Con
Wednesday, March 16, 2011
Mom Update, March 16, 2011, Wednesday
Today is Lenny's 19th birthday!!
Claudia began the day with mom. She did her full physical therapy/range of motion exercises. They also used the IPAD. Claudia and mom traced over the alphabet in script--hand over hand prompting--of every letter from A-Z. Claudia kept asking mom if she wanted to continue to do the activity and mom kept saying, "Yes" so they kept doing it. Claudia then wrote some words in script on the IPAD Blackboard but mom couldn't read the words that Claudia wrote in script. Mom is able to read in print. Then Claudia wrote the word, asked mom to read it, mom couldn't, then Claudia would read the word, mom would repeat it. She then asked mom if she wanted to read/write names or items and mom said, "Items" so Claudia continued to write the names of items in script. Mom always preferred script before all this happened to her. At one point, mom did try to write and try to put the stylus to the IPAD but couldn't really do anything. There were times when mom's grip on the stylus was tight and good, but at other times, mom's grip was weak. Then they did some numbers on the IPAD.
While Anthony was with mom (and partially Claudia), she was being fed. We have noticed that many of the people who feed her, do so in a rushed manner. They shovel the food into her mouth in large heaping spoonfuls, don't allow her to feed herself, forget to give her a drink in between bites, and follow one spoonful of food too closely to the last one. They also still haven't brought the right type of cup for mom to drink from (not a plastic or paper one). Some of the aids and one nurse feed her well...but the majority don't. Today, the Occupational Therapist came to feed mom or to see if mom could feed herself. The therapist didn't try very hard to have mom feed herself. Anthony made many suggestions. The therapist, rather than listen to Anthony, became annoyed. Finally, at one point, the therapist took a full, large brussel sprout on the same utensil with potatoes and tried to shove it all in mom's mouth at once!!!!! Anthony and Claudia both asked her not to do it and to cut the food. The therapist told them the food is already as mom needs it to be---but not true. She finally turned to Claudia and Anthony and asked them if they would leave the room during her "session" with mom. They refused to based on the idea that the therapist would just choke mom privately without supervision. The therapist then asked them if they wanted to feed mom and Claudia volunteered to (the therapist asked sarcastically). Claudia told her to watch while she taught her about "backward chaining" and that she is a behavioral therapist. The occupational therapist refused to watch, learn...and left. Claudia left and Anthony was called into a meeting then with the head of therapies, the physical therapist, the social worker, and the head of nursing. They asked for a run down on the problems and Anthony conveyed the concerns we had very eloquently. He did an excellent job!!! He is one of mom's biggest advocates. He is also one of mom's best clinicians too. They all said that mom would get speech and Occupational Therapy for only 2 weeks unless she showed improvement. How can someone improve without therapy??!!!!!! The system is exasperating!!! When they finished talking and saying they'd take care of everything, Anthony gave a report to the physical therapist who said he'd be in to see mom again shortly. Anthony works hard on mom's legs.
Late this afternoon, when Claudia returned, mom said something to Claudia and the sentence contained the words, "hearing aids" so Claudia asked, "Oh your hearing aid doesn't work?" and mom said, "No" so Claudia took it out and checked and, sure enough, the hearing aid didn't work. Claudia changed the battery and it worked again. She asked mom, "Is that better now?" and mom answered, "I guess so." Claudia then saw and spoke to the head of therapies and the speech therapist and she showed them the video she took of mom feeding herself. The head of therapies was surprised but the speech therapist said she already saw mom doing that. Claudia also told them that mom can use the regular utensils and doesn't need the adaptive equipment at all. The head of therapies said he'd come to watch mom eat next week.
Dad was with mom during the afternoon and evening. They held hands and talked and watched TV together. When I arrived to see mom, she smiled broadly and said, "Hi." Since she was eating dinner when I arrived, I didn't want to disturb or distract her while she ate so I just sat and smiled at her. She ate all her dinner. She had some soup (it looked gross though--the name of it was "Thickened soup???"), fish sticks (which she wasn't crazy about), mashed potatoes, vanilla milk, peaches and cole slaw. When she finished eating, I talked to her and kissed her an d held her hand. She held tightly to dad's hand though!!
Tonight, Anthony Michael, Samantha, and Con came to see mom tonight. They talked to her and told her about their day. They watched TV with her too. Mom talked a lot to them and smiled alot. They couldn't understand the majority of what mom was saying though. She began to get sleepy before they left. They kept telling her it was Lenny's birthday and that she should tell him Happy Birthday when she saw him later.
Lenny came to see mom and to tuck her into bed tonight. He said that he and mom talked a bit and that she grabbed his cell phone at one point and so he asked her what her phone number was. Mom replied, "I don't know" but when Lenny said the first 2 numbers, mom said all the rest! She did the same for our phone number too. She told Lenny Happy Birthday and that she loved him too.
"May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus," Romans 15:5
Claudia began the day with mom. She did her full physical therapy/range of motion exercises. They also used the IPAD. Claudia and mom traced over the alphabet in script--hand over hand prompting--of every letter from A-Z. Claudia kept asking mom if she wanted to continue to do the activity and mom kept saying, "Yes" so they kept doing it. Claudia then wrote some words in script on the IPAD Blackboard but mom couldn't read the words that Claudia wrote in script. Mom is able to read in print. Then Claudia wrote the word, asked mom to read it, mom couldn't, then Claudia would read the word, mom would repeat it. She then asked mom if she wanted to read/write names or items and mom said, "Items" so Claudia continued to write the names of items in script. Mom always preferred script before all this happened to her. At one point, mom did try to write and try to put the stylus to the IPAD but couldn't really do anything. There were times when mom's grip on the stylus was tight and good, but at other times, mom's grip was weak. Then they did some numbers on the IPAD.
While Anthony was with mom (and partially Claudia), she was being fed. We have noticed that many of the people who feed her, do so in a rushed manner. They shovel the food into her mouth in large heaping spoonfuls, don't allow her to feed herself, forget to give her a drink in between bites, and follow one spoonful of food too closely to the last one. They also still haven't brought the right type of cup for mom to drink from (not a plastic or paper one). Some of the aids and one nurse feed her well...but the majority don't. Today, the Occupational Therapist came to feed mom or to see if mom could feed herself. The therapist didn't try very hard to have mom feed herself. Anthony made many suggestions. The therapist, rather than listen to Anthony, became annoyed. Finally, at one point, the therapist took a full, large brussel sprout on the same utensil with potatoes and tried to shove it all in mom's mouth at once!!!!! Anthony and Claudia both asked her not to do it and to cut the food. The therapist told them the food is already as mom needs it to be---but not true. She finally turned to Claudia and Anthony and asked them if they would leave the room during her "session" with mom. They refused to based on the idea that the therapist would just choke mom privately without supervision. The therapist then asked them if they wanted to feed mom and Claudia volunteered to (the therapist asked sarcastically). Claudia told her to watch while she taught her about "backward chaining" and that she is a behavioral therapist. The occupational therapist refused to watch, learn...and left. Claudia left and Anthony was called into a meeting then with the head of therapies, the physical therapist, the social worker, and the head of nursing. They asked for a run down on the problems and Anthony conveyed the concerns we had very eloquently. He did an excellent job!!! He is one of mom's biggest advocates. He is also one of mom's best clinicians too. They all said that mom would get speech and Occupational Therapy for only 2 weeks unless she showed improvement. How can someone improve without therapy??!!!!!! The system is exasperating!!! When they finished talking and saying they'd take care of everything, Anthony gave a report to the physical therapist who said he'd be in to see mom again shortly. Anthony works hard on mom's legs.
Late this afternoon, when Claudia returned, mom said something to Claudia and the sentence contained the words, "hearing aids" so Claudia asked, "Oh your hearing aid doesn't work?" and mom said, "No" so Claudia took it out and checked and, sure enough, the hearing aid didn't work. Claudia changed the battery and it worked again. She asked mom, "Is that better now?" and mom answered, "I guess so." Claudia then saw and spoke to the head of therapies and the speech therapist and she showed them the video she took of mom feeding herself. The head of therapies was surprised but the speech therapist said she already saw mom doing that. Claudia also told them that mom can use the regular utensils and doesn't need the adaptive equipment at all. The head of therapies said he'd come to watch mom eat next week.
Dad was with mom during the afternoon and evening. They held hands and talked and watched TV together. When I arrived to see mom, she smiled broadly and said, "Hi." Since she was eating dinner when I arrived, I didn't want to disturb or distract her while she ate so I just sat and smiled at her. She ate all her dinner. She had some soup (it looked gross though--the name of it was "Thickened soup???"), fish sticks (which she wasn't crazy about), mashed potatoes, vanilla milk, peaches and cole slaw. When she finished eating, I talked to her and kissed her an d held her hand. She held tightly to dad's hand though!!
Tonight, Anthony Michael, Samantha, and Con came to see mom tonight. They talked to her and told her about their day. They watched TV with her too. Mom talked a lot to them and smiled alot. They couldn't understand the majority of what mom was saying though. She began to get sleepy before they left. They kept telling her it was Lenny's birthday and that she should tell him Happy Birthday when she saw him later.
Lenny came to see mom and to tuck her into bed tonight. He said that he and mom talked a bit and that she grabbed his cell phone at one point and so he asked her what her phone number was. Mom replied, "I don't know" but when Lenny said the first 2 numbers, mom said all the rest! She did the same for our phone number too. She told Lenny Happy Birthday and that she loved him too.
"May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus," Romans 15:5
Mom Update, March 15, 2011, Tuesday
Hi Everyone,
I started the day with mom. She was being fed by her CNA. Her CNA was so gentle with her as she fed her She had very little on the fork and fed her slowly. I only had enough time to do PT and set up a taped book for her. I put James Patterson’s Beach Road on the CD player and asked the CNA to put in the next disc when this one is finished. I spoke to the head nurse about the other people
Anthony came by today and she was in a good mood. She was still in bed. She had her eyes closed but Anthony didn’t think she was sleeping and he opened her eyes and she said Hi. She spoke a lot but Anthony didn’t know what she said. The CAN came and put her in the chair. Then the speech person came with the OT and they were going to see if mom can feed herself. The speech person had the table too high and an adaptive fork. They put the food on the fork and they said come on come on and she wasn’t doing anything. Anthony said can I just lower the table. They also had the tray on her left. She always looks to the right. Anthony asked if he could move the tray because she can’t see the tray. He moved it and she was more engaged. Anthony said, “Can I try?” So Anthony said to her, “Are you hungry?” “If you are hungry then you going to have to put this up to your mouth,” and she did. Anthony also made the suggestion that she may want to drink in between bites. He also asked her how was the food and mom mouthed “Horrible” Anthony also suggested that this might be part of why she won’t eat. She wanted to hold the cup but after a while she started pouring the stuff out of the cup. Anthony also asked for something to keep in the room to have her drink. He gave her sips throughout the day. Mom made a funny face and then laughed! What a change that she made Anthony laugh today. The Rec therapist asked if mom wanted to go to a tea party and mom said “No.” They came to get her and she was grabbing the dresser and grabbed the door jam. Anthony said, “Relax mom, you like tea and you will have fun. I will go with you.” He stayed with her and they had tea and muffins. Anthony had to leave and she stayed. Anthony asked about the vent and why it was raised. They said that her CO2 levels went up. Anthony asked if she will ever get off the vent and the respiratory therapist said that she had the same pattern last time they weaned her from the vent (we are taking that as a good sign).
John came to see mom tonight and as soon as he arrived they came to change her so he had to wait in the hall. He went in and said, “Mom, do you know who I am?” She said, “John.” It made him feel good. He said she was very sleepy and out of it tonight. He started to do her PT and then they came in to feed her. She ate a lot. She had chicken pot pie and soup. John finished the PT after she ate. She was very restless. John asked her, “What are you sleepy?” and mom said, “Yes.” They had the bed all the way up so John lowered it a little and she settled down. John tried to wake her up by reading a magazine but she didn’t respond. He put on cake boss on and was talking to her about the show, but she was very sleepy. He even tried to crack a few jokes but nothing. He then took out hearing aids and set the timer on the TV and left for the night.
Dad, Kathy and Lenny come home tomorrow. I am sure mom will be happy to see them, especially the love of her life, dad.
Peace and be well,
Claudia
I started the day with mom. She was being fed by her CNA. Her CNA was so gentle with her as she fed her She had very little on the fork and fed her slowly. I only had enough time to do PT and set up a taped book for her. I put James Patterson’s Beach Road on the CD player and asked the CNA to put in the next disc when this one is finished. I spoke to the head nurse about the other people
Anthony came by today and she was in a good mood. She was still in bed. She had her eyes closed but Anthony didn’t think she was sleeping and he opened her eyes and she said Hi. She spoke a lot but Anthony didn’t know what she said. The CAN came and put her in the chair. Then the speech person came with the OT and they were going to see if mom can feed herself. The speech person had the table too high and an adaptive fork. They put the food on the fork and they said come on come on and she wasn’t doing anything. Anthony said can I just lower the table. They also had the tray on her left. She always looks to the right. Anthony asked if he could move the tray because she can’t see the tray. He moved it and she was more engaged. Anthony said, “Can I try?” So Anthony said to her, “Are you hungry?” “If you are hungry then you going to have to put this up to your mouth,” and she did. Anthony also made the suggestion that she may want to drink in between bites. He also asked her how was the food and mom mouthed “Horrible” Anthony also suggested that this might be part of why she won’t eat. She wanted to hold the cup but after a while she started pouring the stuff out of the cup. Anthony also asked for something to keep in the room to have her drink. He gave her sips throughout the day. Mom made a funny face and then laughed! What a change that she made Anthony laugh today. The Rec therapist asked if mom wanted to go to a tea party and mom said “No.” They came to get her and she was grabbing the dresser and grabbed the door jam. Anthony said, “Relax mom, you like tea and you will have fun. I will go with you.” He stayed with her and they had tea and muffins. Anthony had to leave and she stayed. Anthony asked about the vent and why it was raised. They said that her CO2 levels went up. Anthony asked if she will ever get off the vent and the respiratory therapist said that she had the same pattern last time they weaned her from the vent (we are taking that as a good sign).
John came to see mom tonight and as soon as he arrived they came to change her so he had to wait in the hall. He went in and said, “Mom, do you know who I am?” She said, “John.” It made him feel good. He said she was very sleepy and out of it tonight. He started to do her PT and then they came in to feed her. She ate a lot. She had chicken pot pie and soup. John finished the PT after she ate. She was very restless. John asked her, “What are you sleepy?” and mom said, “Yes.” They had the bed all the way up so John lowered it a little and she settled down. John tried to wake her up by reading a magazine but she didn’t respond. He put on cake boss on and was talking to her about the show, but she was very sleepy. He even tried to crack a few jokes but nothing. He then took out hearing aids and set the timer on the TV and left for the night.
Dad, Kathy and Lenny come home tomorrow. I am sure mom will be happy to see them, especially the love of her life, dad.
Peace and be well,
Claudia
Mom Update, March 14, 2011, Monday
Hi everyone,
Dad, Kathy and Lenny are still upstate. I started the day with mom. She was eating breakfast when I got there. I had to wait for the aide to finish feeding mom. I then set her up for her day. I cleaned her hearing aids and put them in and placed her glasses on her face. I then started her PT. As I went around to the other side of the bed I noticed that it was crooked. I saw the headboard was slanted. I then saw that the left back corner of her bed was off the floor and resting on a chair! The left leg of the bed was off the ground and the bed itself was "ON" a chair. I called to a nurse and she came in and we both just couldn't believe it. The nurse took the bed remote and lowered the bed and the leg touched the ground. We then slid the chair out. I can't believe they fed her all lopsided. Her left hand was sore and she winced a few times when I was working on it. I tried to have her lift her legs with the blue ball under her knee but she was unable to do it. I talked to her about the speech therapist coming today and that she had to do whatever she asked her to do. I also told her that we know she asks her to do things we know she already knows but that she has to do them to show the therapist that she CAN do them. I left and Carmine came next. He has been doing speech therapy with mom at least once a week. He came in and the facility's speech therapist was already working with mom. She questioned Carmine about he works with mom and asked if he physically prompts her to do oral motor exercises. He said no that she follows commands. The speech therapist said well she doesn't with me! Carmine walked over to mom and said, "Dotty, open your mouth." Mom did it! (He confessed later that he was gonna give it to her if she didn't listen! Lol!) He then asked her to stick out her tongue and mom did! It was great! It just goes to show you that we are needed even more now to support what Carmine asks us to do with mom, especially that mom won't work for the facility speech therapist. I also think mom can sense that she (speech) doesn't know what she is doing! Carmine showed her what he is working on and asked the speech therapist what she is working on that he can do (Trying to make nice nice!). I spoke to a friend of mine today about what happened and he said 50% of therapy is the rapport you have with the client. Anthony came when Carmine was just leaving. They spoke out in the hall about what happened. Anthony then worked with mom. He did PT with mom and worked a lot on her legs and left hand. Mom lifted her right leg slightly for Anthony but just wiggled her left foot. Anthony said he waited a long time for her to process what he wanted her to do (lift her leg). He had the TV off the whole time he worked with her. Carmine suggested that we limit the TV and supplement it with books on tape and conversation. Anthony put the TV on when he was done working with mom and put a Brooklyn Dodgers special on and mom looked at the TV and pointed to Gil Hodges and Jackie Robinson. Mom is a BIG baseball fan! Anthony left for work and I came when mom was eating dinner. Anthony and I both noticed that they put way too much food on the spoon and fork when feeding mom and we both commented on it. I will be calling the head nurse tomorrow to let her know My fear is that she will choke because of that and then the speech therapist will stop her meals and put her back on the feeding tube. I brought a catalog I just got in the mail. We looked at it page by page and I read the item descriptions. I made mom laugh a few times. I saw a jacket with a peace sign on it and I said, "Mom, who would love that jacket? A--" (verbally prompting her) and she said AVA.Dad called and said good night to her. We read for a long time and I couldn't read anymore so I placed the koosh balls on her tray and we watched an Odd Couple episode. It was the one where they go to the fat farm. She laughed at the funny parts. A couple times I laughed and she said, "What?" so I told her what she missed and then she would laugh. I then put the small pom poms on the tray and she picked up the pom poms one at a time and put them in the hole on the top of the container. It took her a long time to motor plan. A few times she moved the container away from her and she had to pull it back. I tried to have her use the tweezers but she was too frustrated so I took them away. I then placed clothes pins on a card and she pulled them off one at a time and gave them to me. She fell asleep while I was putting the items away. i then did PT on her hands and arms. I tucked her in for the night, removing her hearing aids and putting the timer on the TV. I always leave it on the Food Network. I said a prayer and left. A full day!
Peace and be well friends!
Claudia
Dad, Kathy and Lenny are still upstate. I started the day with mom. She was eating breakfast when I got there. I had to wait for the aide to finish feeding mom. I then set her up for her day. I cleaned her hearing aids and put them in and placed her glasses on her face. I then started her PT. As I went around to the other side of the bed I noticed that it was crooked. I saw the headboard was slanted. I then saw that the left back corner of her bed was off the floor and resting on a chair! The left leg of the bed was off the ground and the bed itself was "ON" a chair. I called to a nurse and she came in and we both just couldn't believe it. The nurse took the bed remote and lowered the bed and the leg touched the ground. We then slid the chair out. I can't believe they fed her all lopsided. Her left hand was sore and she winced a few times when I was working on it. I tried to have her lift her legs with the blue ball under her knee but she was unable to do it. I talked to her about the speech therapist coming today and that she had to do whatever she asked her to do. I also told her that we know she asks her to do things we know she already knows but that she has to do them to show the therapist that she CAN do them. I left and Carmine came next. He has been doing speech therapy with mom at least once a week. He came in and the facility's speech therapist was already working with mom. She questioned Carmine about he works with mom and asked if he physically prompts her to do oral motor exercises. He said no that she follows commands. The speech therapist said well she doesn't with me! Carmine walked over to mom and said, "Dotty, open your mouth." Mom did it! (He confessed later that he was gonna give it to her if she didn't listen! Lol!) He then asked her to stick out her tongue and mom did! It was great! It just goes to show you that we are needed even more now to support what Carmine asks us to do with mom, especially that mom won't work for the facility speech therapist. I also think mom can sense that she (speech) doesn't know what she is doing! Carmine showed her what he is working on and asked the speech therapist what she is working on that he can do (Trying to make nice nice!). I spoke to a friend of mine today about what happened and he said 50% of therapy is the rapport you have with the client. Anthony came when Carmine was just leaving. They spoke out in the hall about what happened. Anthony then worked with mom. He did PT with mom and worked a lot on her legs and left hand. Mom lifted her right leg slightly for Anthony but just wiggled her left foot. Anthony said he waited a long time for her to process what he wanted her to do (lift her leg). He had the TV off the whole time he worked with her. Carmine suggested that we limit the TV and supplement it with books on tape and conversation. Anthony put the TV on when he was done working with mom and put a Brooklyn Dodgers special on and mom looked at the TV and pointed to Gil Hodges and Jackie Robinson. Mom is a BIG baseball fan! Anthony left for work and I came when mom was eating dinner. Anthony and I both noticed that they put way too much food on the spoon and fork when feeding mom and we both commented on it. I will be calling the head nurse tomorrow to let her know My fear is that she will choke because of that and then the speech therapist will stop her meals and put her back on the feeding tube. I brought a catalog I just got in the mail. We looked at it page by page and I read the item descriptions. I made mom laugh a few times. I saw a jacket with a peace sign on it and I said, "Mom, who would love that jacket? A--" (verbally prompting her) and she said AVA.Dad called and said good night to her. We read for a long time and I couldn't read anymore so I placed the koosh balls on her tray and we watched an Odd Couple episode. It was the one where they go to the fat farm. She laughed at the funny parts. A couple times I laughed and she said, "What?" so I told her what she missed and then she would laugh. I then put the small pom poms on the tray and she picked up the pom poms one at a time and put them in the hole on the top of the container. It took her a long time to motor plan. A few times she moved the container away from her and she had to pull it back. I tried to have her use the tweezers but she was too frustrated so I took them away. I then placed clothes pins on a card and she pulled them off one at a time and gave them to me. She fell asleep while I was putting the items away. i then did PT on her hands and arms. I tucked her in for the night, removing her hearing aids and putting the timer on the TV. I always leave it on the Food Network. I said a prayer and left. A full day!
Peace and be well friends!
Claudia
Mom Update, March 13, 2011, Sunday
Hi Everyone,
Kathy and Lenny started the day with mom today. Kathy said she was awake and alert. She was talkative and looked peaceful. Kathy did full PT and mom counted with her as she did it. Kathy clipped her toenails. Mom had already eaten breakfast, but Kathy didn’t know what she had. She said a morning prayer and then left. Kathy, Lenny and Dad all went upstate for a few days. Con, Anthony, and Sam came next. Mom was being put in her chair. Mom was awake but quiet. Anthony did full PT with mom in the chair. They all watched TV and looked at magazines with mom. Terry came and spent time talking to mom and watching TV. I came in the evening and Terry left. We watched MASH on DVD. I gave mom the vocabulary easel that her friends got her for Christmas. Mom loves words and definitions. She read the word on each page and then looked at each definition. I helped her turn the page for a new word. I then took out the i-pad and she picked up the stylus and she poked at the screen. She looked at the food vocabulary (her favorite) and then I opened the blackboard app. I chose a bright color and she scribbled on the i-pad. I also opened the memory game. She poked at a few cards and they turned over, but no match. She then fell asleep. When she woke up I asked her if she wanted to play with the I-pad anymore and she said, “No.” I put it away and put the Odd Couple on TV 9VCR Tapes that con and Anthony brought). She watched and laughed a few times and then fell asleep. I did PT and then said a prayer and put her to bed. I always leave the TV on the food network (one of her favorites) and the timer for 2 hr.
Peace and be well,
Claudia
Kathy and Lenny started the day with mom today. Kathy said she was awake and alert. She was talkative and looked peaceful. Kathy did full PT and mom counted with her as she did it. Kathy clipped her toenails. Mom had already eaten breakfast, but Kathy didn’t know what she had. She said a morning prayer and then left. Kathy, Lenny and Dad all went upstate for a few days. Con, Anthony, and Sam came next. Mom was being put in her chair. Mom was awake but quiet. Anthony did full PT with mom in the chair. They all watched TV and looked at magazines with mom. Terry came and spent time talking to mom and watching TV. I came in the evening and Terry left. We watched MASH on DVD. I gave mom the vocabulary easel that her friends got her for Christmas. Mom loves words and definitions. She read the word on each page and then looked at each definition. I helped her turn the page for a new word. I then took out the i-pad and she picked up the stylus and she poked at the screen. She looked at the food vocabulary (her favorite) and then I opened the blackboard app. I chose a bright color and she scribbled on the i-pad. I also opened the memory game. She poked at a few cards and they turned over, but no match. She then fell asleep. When she woke up I asked her if she wanted to play with the I-pad anymore and she said, “No.” I put it away and put the Odd Couple on TV 9VCR Tapes that con and Anthony brought). She watched and laughed a few times and then fell asleep. I did PT and then said a prayer and put her to bed. I always leave the TV on the food network (one of her favorites) and the timer for 2 hr.
Peace and be well,
Claudia
Monday, March 14, 2011
Mom Update, March 13, 2011, Sunday
Hi Everyone,Kathy and Lenny started the day with mom today. Kathy said she was awake and alert. She was talkative and looked peaceful. Kathy did full PT and mom counted with her as she did it. Kathy clipped her toenails. Mom had already eaten breakfast, but Kathy didn’t know what she had. She said a morning prayer and then left. Kathy, Lenny and Dad all went upstate for a few days. Con, Anthony, and Sam came next. Mom was being put in her chair. Mom was awake but quiet. Anthony did full PT with
mom in the chair. They all watched TV and looked at magazines with mom. Terry came and spent time talking to mom and watching TV. I came in the evening and Terry left. We watched MASH on DVD. I gave mom the vocabulary easel that her friends got her for Christmas. Mom loves words and definitions. She read the word on each page and then looked at each definition. I helped her turn the page for a new word. I then took out the i-pad and she picked up the stylus and she poked at the screen. She looked at the food vocabulary (her favorite) and then I opened the blackboard app. I chose a bright color and she scribbled on the i-pad. I also opened the memory game. She poked at a few cards and they turned over, but no match. She then fell asleep. When she woke up I asked her if she wanted to play with the I-pad anymore and she said, “No.†I put it away and put the Odd Couple on TV 9VCR Tapes that con and Anthony brought). She watched and laughed a few times and then fell asleep. I did PT and then said a prayer and put her to bed. I always leave the TV on the food network (one of her favorites) and the timer for 2 hr.
Peace and be well,
Claud
mom in the chair. They all watched TV and looked at magazines with mom. Terry came and spent time talking to mom and watching TV. I came in the evening and Terry left. We watched MASH on DVD. I gave mom the vocabulary easel that her friends got her for Christmas. Mom loves words and definitions. She read the word on each page and then looked at each definition. I helped her turn the page for a new word. I then took out the i-pad and she picked up the stylus and she poked at the screen. She looked at the food vocabulary (her favorite) and then I opened the blackboard app. I chose a bright color and she scribbled on the i-pad. I also opened the memory game. She poked at a few cards and they turned over, but no match. She then fell asleep. When she woke up I asked her if she wanted to play with the I-pad anymore and she said, “No.†I put it away and put the Odd Couple on TV 9VCR Tapes that con and Anthony brought). She watched and laughed a few times and then fell asleep. I did PT and then said a prayer and put her to bed. I always leave the TV on the food network (one of her favorites) and the timer for 2 hr.
Peace and be well,
Claud
Saturday, March 12, 2011
Mom Update, March 12, 2011, Saturday
Claudia began mom’s day with her full physical therapy/range of motion exercises. She said that mom was very alert and very talkative!! Claudia also did mom’s oral motor exercises (masseter exercises and tongue exercises with the oral swabs. Claudia said that mom ate breakfast while she was with her too. Dad said that mom talked to him (mouthed words…) the whole time he was with her.
Our family celebrated Anthony’s 50th birthday today. We reserved the recreation room at the
facility so that we all could be together. Mom, Dad, Anthony, Con, Anthony Michael, Samantha, Terry, Claudia, John, Jean, Ava, Lenny and I, and all the Bonavita family…(John and Con’s sisters and brother)…Rie (John and Con’s sister) and her husband, Phil, and their children, Gina and Michael, Roe (John and Con’s sister) and her hasband, Steve, and their children, Steven and John, and Emil (John and Con’s brother) and his wife, Pat. Mom ate lunch with us---the same food we were eating!! She also sang/mouthed, “Happy Birthday” to Anthony and ate birthday cake!! Banana cake with chocolate icing. Mom also drank some Sprite soda—thickened of course. We all talked and laughed and told stories. It was great to be all together. Terry, Lenny, Sammy and I went back to mom’s room and “chilled” as Sammy says. We watched Jean’s movie (which is soon to be in the Soho Film Festival!!), “Just Like Joe.” When Sam came in the room, mom had her eyes closed, resting, and when she heard Sam’s voice she said out loud, “Oh, is that Samantha?” She was very alert and talkative (mouthing sentences, words…). It was a great day and everyone couldn’t believe how well mom is doing. It was a great day!
“Be devoted to one another in brotherly love.” Romans 12:10
Our family celebrated Anthony’s 50th birthday today. We reserved the recreation room at the
facility so that we all could be together. Mom, Dad, Anthony, Con, Anthony Michael, Samantha, Terry, Claudia, John, Jean, Ava, Lenny and I, and all the Bonavita family…(John and Con’s sisters and brother)…Rie (John and Con’s sister) and her husband, Phil, and their children, Gina and Michael, Roe (John and Con’s sister) and her hasband, Steve, and their children, Steven and John, and Emil (John and Con’s brother) and his wife, Pat. Mom ate lunch with us---the same food we were eating!! She also sang/mouthed, “Happy Birthday” to Anthony and ate birthday cake!! Banana cake with chocolate icing. Mom also drank some Sprite soda—thickened of course. We all talked and laughed and told stories. It was great to be all together. Terry, Lenny, Sammy and I went back to mom’s room and “chilled” as Sammy says. We watched Jean’s movie (which is soon to be in the Soho Film Festival!!), “Just Like Joe.” When Sam came in the room, mom had her eyes closed, resting, and when she heard Sam’s voice she said out loud, “Oh, is that Samantha?” She was very alert and talkative (mouthing sentences, words…). It was a great day and everyone couldn’t believe how well mom is doing. It was a great day!
“Be devoted to one another in brotherly love.” Romans 12:10
Friday, March 11, 2011
Mom Update, March 11, 2011, Friday
Sorry this entry is so long but it is full of discussions with every therapist, dietician, and building administrator. It is full of information.
Claudia began the day with mom this morning. Mom was sleeping at first so Claudia let her sleep a while after the events of yesterday. The nurse said that mom’s sputum is yellow so she was going to order an xray. Claudia did mom’s full physical therapy/range of motion exercise. She put the 10 inch ball under mom’s legs and asked her to lift them, but mom could not lift either leg. She tried to work with the theraband and mom did 2 on the right leg/foot and 2 slightly on the left leg/foot. Claudia also did the orange, scrunchy tube with mom---trying to get her to pull with a prompt.
When I came, mom was being dressed, washed and changed so I met with the Building Administrator. He saw me and I smiled and said, “Hello, how are you?” He replied, “Hi! You’re smiling!” I said, “Well, yes but I need to speak with you.” I told him about the events of yesterday, mom’s G-tube coming out, the snotty, attitudinal respiratory person, the lack of the respiratory person’s team efforts in transporting mom from one room to another, how they are STILL calling dad and not me in emergency (or other) situations, how mom was taken to a hospital far from here… He listened. He agreed with every viewpoint I had and offered. He said he’d talk to the respiratory people. Whatever. It may not change things but at least he knows and is aware. I had told him that I was not there to “tip-toe” around the staff when my mom was in a crisis. I told him that, if this was another person who was treated this way, the respiratory therapist’s attitude would have escalated the situation to a place of destruction and possible violence. I explained that the team should act and behave like a team…not like islands. And that all of this should be done on behalf of the patients/residents. I told him that upset family members should be treated with respect and compassion. I told him that I was brought up to believe that, as a person in a position of service, the families should always be cared for and treated kindly and with compassion and respect. I told him that I come from a family of creators and teachers and that we continually seek to make the world a better place to live in; especially where mom is concerned, but not exclusively to just her.
I met with the head respiratory therapist next who told me that mom’s PSV (Pressure Support Volume—which controls the person’s ability to, not only initiate breaths but, expel CO2 as well) was down to a 10 on Monday (we knew that) and raised back to a 12 on Wednesday because mom’s CO2 levels rose. I told him I knew her levels rose but that it wasn’t really too significantly---from a 41-42 to a 44-45 (I noted the levels to him). He said he didn’t want to “fool around” with CO2 levels. I told him I respect that (politically correct answer). He said that, on Monday, he was going to leave the PSV on 12 and lower the Rate Volume from 8 to 6. He anticipates that mom will do well with the change. If so, then in a week, he will lower the PSV to 10 from 12. Once mom gets the PSV down to 8 and remains on a rate volume of 6, she comes off the vent again and goes into the CPAP mode of the vent. Following a week or 2 of CPAP mode, mom goes back on the trach collar (where she was in December) and the head of respiratory said that she can get a Passy-Muir valve (talking valve) at that point. I asked about the Passy-Muir 007 valve for people on a vent and he said that, due to the fact that mom is still getting pressure support PSV, she can’t get the valve. This is because her cuff in her throat that blocks off the air way channel would need to be opened to allow air in, and in mom’s case, this could be detrimental to her CO2 levels rising.
The Speech Therapist came to reassess mom today---we think it is because she saw mom tell Anthony, “Happy Birthday” yesterday. Even though we have told her mom is talking, she hasn’t paid it much heed. The speech therapist said that mom was very sleepy on and off. The therapist also felt that mom was being overstimulated by what she was doing with mom. The speech therapist asked us what we have been doing with mom. The funny thing is that, even though we are here every day, I had to sit and think for a minute. Even as I relayed all that we do with mom to her, I had to sit and think a minute. It all tends to get mixed up. Basically, here’s what we do with mom for speech, as a family:
Anthony Michael, Sammy, and Anthony and Con all come in and talk with her constantly. They tell her about their day, what’s new in their lives, what’s coming up in the future. They joke with her, ask her common conversational questions…. They also sometimes (more Anthony and Sammy) write on the white board in words and drawings. They work on her conversational speech a lot. Anthony and Con and the kids do a lot with mom but this is basically what they do for her language development. Anthony is a wonder with her physical therapy!!
Claudia does many of the IPAD language apps with mom. Oral motor (it shows a person’s mouth area and tells the person watching to do something like-“Stick out your tongue” then after the words are heard, the person’s mouth area that is shown on the IPAD demonstrates the task for imitation). There are other apps that also show fruits/nuts, vegetables, actions, objects, emotions, functions… In these apps, an item/emotion/feeling is shown and the person is asked to “Touch___”or the item is shown and labeled. For the apps where the item is shown and labeled, mom labels the item in imitation. For the apps where she has to point to something, she can’t do that yet. Claudia also works on mom’s ability to identify things through sound. She uses the “Sounds around the House” and the “Outdoor Sounds” bingo games to do this. You listened to a sound on a CD and then the CD asks you what you listened to, there are pictures coinciding with the sounds. At first, we had mom just listen to the sound while looking at the coinciding picture. Then Claudia had mom point to the picture (from an array of 2 on a tray/holder) after hearing the sound. Mom is now just listening and looking, no pointing.
I usually work on the IPAD apps that have you point to a letter of the alphabet and a coinciding picture appears. I also work on the game-like apps that have you pick a word or identify a word… I also like to do crosswords with mom now too.
The speech therapist said that she is now done working on swallowing and the oral motor skills that coincide with that function because mom is now swallowing really well with no issues around texture. She is eating full meals and all foods; just needs thickened liquids now. The speech therapist said she will be working on: Naming functional objects, following 1 step directions, identifying body parts, answering simple yes/no questions (Are you a woman? Is Jean your husband?...). The speech therapist said that she does not feel that oral motor exercises are important now that mom is swallowing well. (We will do what cousin Carmine says---not the facility’s speech therapist). The speech therapist said she will be working with mom every day for at least the next 2 weeks (before she will probably drop her services!!) from 10-11 or 11-12.
For lunch, mom ate sausage, peppers, macaroni, mixed vegetables and chocolate mousse and she ate it all!!! “Clean plate club!”
Anthony was trying to get mom to follow simple commands, so he asked her to touch her nose. He used the book that Maureen made for mom which has index cards with commands written on it. He asked and showed mom the command over and over, but mom kept touching and playing with his shirt instead…at one point, after Anthony asked, mom said, “I have to finish. You touch yours.” Anthony is starting to become quite the clinician!! He thought he should use real objects and so I gathered a pencil, a book, a cup and his watch. He held each one up to mom and asked, “What’s this?” mom would look away. So Anthony kept showing mom his watch and asking what it is—then I described it to her, “It has numbers, and it tells time…” Mom said, “Banjo” and then she got stuck on “banjo” for a while. She couldn’t name any items spontaneously but she repeated what Anthony labeled. Then, Anthony took out the white board and he and mom drew (he tried to get her to make a circle), he also wrote words for her to read. Mom had just finished lunch so she was “mushy” in her affect.
Dad came shortly after Anthony and he and I remained with mom in the afternoon. Mom slept after Anthony left. She usually takes a rather lengthy (up to an hour or so) afternoon nap. When the pulmonologist and head of respiratory came in to see mom, she was sleeping. They woke her up. They noted her vent settings and said she was doing well. They said, “Good morning” and mom mouthed, “Good morning” back to them, but was sleepy the rest of the time. After they left, a woman with a large, muppet-like puppet came in to see mom with the recreation therapist. They talked to mom and the recreation therapist woke mom up and talked and talked to mom. The puppeteer sang a song to mom with the puppet and mom mouthed the words (“I’ll be loving you always”). At one point, earlier in the afternoon, mom took her hearing aid out and handed it to me. When I put it to my ear, I found that the battery was dead! Mom’s nose was running and so I gave her a tissue and asked her to wipe it and she did. The dietician came in after the recreation people left and gave us some weekly menus from which to select food. There was also a food preference sheet too. Mom’s night CNA came in to check on her and she said that mom told her “I love you too” after the aid told mom she loved her. Dad left after only 2 hours because he has a cold and didn’t feel great. Mom slept on and off for 1 hour and 20 minutes. After mom woke, I did the oral motor exercises that Carmine told us to do. The exercises in rounds of 50 on her cheek area, upper lip area and lower lip area, in addition to the tongue exercises. The aid said last night she felt to make mom’s bed before she came back—she had been praying for mom—and when she finished making the bed, she looked up and mom was being wheeled in. The aid said that she sits beside mom’s bed at night whenever mom is awake and she talks to mom and sings to her. She said she taught mom the song, “I am a Promise” and mom learned it quickly. She said she asked mom for a copy of Jean’s movie, “Just Like Joe” because she liked what she saw of it and mom told her, “Ask my husband.” She said she talks to mom and prays with her and sings with and to her. Mom was very, very sleepy today!!!! She would be awake a few minutes and then out like a light. Up and down all afternoon. While she was awake, I did some crosswords with her. Here are the clues she was able to figure out:
“Fail to attend” “I didn’t go I m____ it” Mom said, “Miss”
“A Great Lake that starts with E. Lake Eeee….” She didn’t get it so I sang, “I’ve got a mule her name is Sal…” Mom said, “ERIE!”
Mom fell asleep again. Her CNA came in to put her to bed. The pulmonologist ordered a chest x-ray for mom for Monday!!! NO! If she needs medication, then she can’t wait until Monday. One of the nurses said she would get the x-ray by tomorrow. Hopefully, she will. The Dietician came to talk to me after mom was in bed. She said that based on the fact that we are all around to monitor mom so much, she is going to stop the liquid feeding. She said we should monitor whether mom is eating at least ½ of her food at every meal. If we feel she needs a supplement, mom will get an oral liquid. No more feeding through the tube!! YIPPEE!! The dietician said that the tube may come out in a month or 2 but usually as long as mom is on the vent, she keeps the feeding tube for emergency reasons. Less trauma. Quick emergency access. Makes sense. The speech therapist is going to teach us how to feed mom but said it is similar to feeding a baby. As I am writing this, the man came in to give mom the chest x-ray! Mom's doctor at the facility also came in to talk to dad, Ant and I today and said that the reason he sent mom to the hospital that is far away from the facility is because he is affiliated with that hospital and has more say and control over what goes on there. So, for example, he could dictate what happens to mom and when she comes back to the facility or whether she stays in the hospital or not. He said that this hospital would be used for non-emergency hospital visits. Not for tests or emergencies. He asked us to decide where we want her to go and to let him know. Mom's day CNA said that as she fed mom the other day, she asked mom if the food tasted good and mom smiled and said, "Yes. Very good." When the CNA asked mom again, mom said, "Good" in a quick sharp way. By the third time that the CNA asked mom, mom rolled her eyes at her and made a face.
Claudia spent the night with mom until the early evening. She said that the CNA fed mom dinner (not mom's CNA, another one). Mom ate chicken, rice pilaf, tomato soup, vanilla milk, coffee, and vegetables. Whenever mom was asked if she wanted more, mom responded, "No thank you" or "Yes." Claudia said she had to coach the CNA a lot regarding how much food to put on the fork/spoon because the CNA was shoveling the food in. I guess the faster the better for the CNA. Joy. Maybe we can feed her. Mom was also not sitting up right in the bed either for eating. Claudia and mom looked through a catalog and mom labeled things: boots, and flowers. They looked through the magazine and laughed and labeled things and she did lick her finger and partially turn the page but Claudia had to help her the rest of the way. Then, Claudia worked on labeling body parts by putting on a CD and showing mom pictures and mom gave a disgusted look, so Claudia said, "Fine, label these things and I will put it all away." However, mom didn't and then mom either couldn't or wouldn't label some of the items. Claudia did mom's full physical therapy/range of motion exercises on her upper body and feet but not her legs because mom fell asleep again out like a light.
"In him our hearts rejoice, for we trust in his holy name." Psalm 33:21
Claudia began the day with mom this morning. Mom was sleeping at first so Claudia let her sleep a while after the events of yesterday. The nurse said that mom’s sputum is yellow so she was going to order an xray. Claudia did mom’s full physical therapy/range of motion exercise. She put the 10 inch ball under mom’s legs and asked her to lift them, but mom could not lift either leg. She tried to work with the theraband and mom did 2 on the right leg/foot and 2 slightly on the left leg/foot. Claudia also did the orange, scrunchy tube with mom---trying to get her to pull with a prompt.
When I came, mom was being dressed, washed and changed so I met with the Building Administrator. He saw me and I smiled and said, “Hello, how are you?” He replied, “Hi! You’re smiling!” I said, “Well, yes but I need to speak with you.” I told him about the events of yesterday, mom’s G-tube coming out, the snotty, attitudinal respiratory person, the lack of the respiratory person’s team efforts in transporting mom from one room to another, how they are STILL calling dad and not me in emergency (or other) situations, how mom was taken to a hospital far from here… He listened. He agreed with every viewpoint I had and offered. He said he’d talk to the respiratory people. Whatever. It may not change things but at least he knows and is aware. I had told him that I was not there to “tip-toe” around the staff when my mom was in a crisis. I told him that, if this was another person who was treated this way, the respiratory therapist’s attitude would have escalated the situation to a place of destruction and possible violence. I explained that the team should act and behave like a team…not like islands. And that all of this should be done on behalf of the patients/residents. I told him that upset family members should be treated with respect and compassion. I told him that I was brought up to believe that, as a person in a position of service, the families should always be cared for and treated kindly and with compassion and respect. I told him that I come from a family of creators and teachers and that we continually seek to make the world a better place to live in; especially where mom is concerned, but not exclusively to just her.
I met with the head respiratory therapist next who told me that mom’s PSV (Pressure Support Volume—which controls the person’s ability to, not only initiate breaths but, expel CO2 as well) was down to a 10 on Monday (we knew that) and raised back to a 12 on Wednesday because mom’s CO2 levels rose. I told him I knew her levels rose but that it wasn’t really too significantly---from a 41-42 to a 44-45 (I noted the levels to him). He said he didn’t want to “fool around” with CO2 levels. I told him I respect that (politically correct answer). He said that, on Monday, he was going to leave the PSV on 12 and lower the Rate Volume from 8 to 6. He anticipates that mom will do well with the change. If so, then in a week, he will lower the PSV to 10 from 12. Once mom gets the PSV down to 8 and remains on a rate volume of 6, she comes off the vent again and goes into the CPAP mode of the vent. Following a week or 2 of CPAP mode, mom goes back on the trach collar (where she was in December) and the head of respiratory said that she can get a Passy-Muir valve (talking valve) at that point. I asked about the Passy-Muir 007 valve for people on a vent and he said that, due to the fact that mom is still getting pressure support PSV, she can’t get the valve. This is because her cuff in her throat that blocks off the air way channel would need to be opened to allow air in, and in mom’s case, this could be detrimental to her CO2 levels rising.
The Speech Therapist came to reassess mom today---we think it is because she saw mom tell Anthony, “Happy Birthday” yesterday. Even though we have told her mom is talking, she hasn’t paid it much heed. The speech therapist said that mom was very sleepy on and off. The therapist also felt that mom was being overstimulated by what she was doing with mom. The speech therapist asked us what we have been doing with mom. The funny thing is that, even though we are here every day, I had to sit and think for a minute. Even as I relayed all that we do with mom to her, I had to sit and think a minute. It all tends to get mixed up. Basically, here’s what we do with mom for speech, as a family:
Anthony Michael, Sammy, and Anthony and Con all come in and talk with her constantly. They tell her about their day, what’s new in their lives, what’s coming up in the future. They joke with her, ask her common conversational questions…. They also sometimes (more Anthony and Sammy) write on the white board in words and drawings. They work on her conversational speech a lot. Anthony and Con and the kids do a lot with mom but this is basically what they do for her language development. Anthony is a wonder with her physical therapy!!
Claudia does many of the IPAD language apps with mom. Oral motor (it shows a person’s mouth area and tells the person watching to do something like-“Stick out your tongue” then after the words are heard, the person’s mouth area that is shown on the IPAD demonstrates the task for imitation). There are other apps that also show fruits/nuts, vegetables, actions, objects, emotions, functions… In these apps, an item/emotion/feeling is shown and the person is asked to “Touch___”or the item is shown and labeled. For the apps where the item is shown and labeled, mom labels the item in imitation. For the apps where she has to point to something, she can’t do that yet. Claudia also works on mom’s ability to identify things through sound. She uses the “Sounds around the House” and the “Outdoor Sounds” bingo games to do this. You listened to a sound on a CD and then the CD asks you what you listened to, there are pictures coinciding with the sounds. At first, we had mom just listen to the sound while looking at the coinciding picture. Then Claudia had mom point to the picture (from an array of 2 on a tray/holder) after hearing the sound. Mom is now just listening and looking, no pointing.
I usually work on the IPAD apps that have you point to a letter of the alphabet and a coinciding picture appears. I also work on the game-like apps that have you pick a word or identify a word… I also like to do crosswords with mom now too.
The speech therapist said that she is now done working on swallowing and the oral motor skills that coincide with that function because mom is now swallowing really well with no issues around texture. She is eating full meals and all foods; just needs thickened liquids now. The speech therapist said she will be working on: Naming functional objects, following 1 step directions, identifying body parts, answering simple yes/no questions (Are you a woman? Is Jean your husband?...). The speech therapist said that she does not feel that oral motor exercises are important now that mom is swallowing well. (We will do what cousin Carmine says---not the facility’s speech therapist). The speech therapist said she will be working with mom every day for at least the next 2 weeks (before she will probably drop her services!!) from 10-11 or 11-12.
For lunch, mom ate sausage, peppers, macaroni, mixed vegetables and chocolate mousse and she ate it all!!! “Clean plate club!”
Anthony was trying to get mom to follow simple commands, so he asked her to touch her nose. He used the book that Maureen made for mom which has index cards with commands written on it. He asked and showed mom the command over and over, but mom kept touching and playing with his shirt instead…at one point, after Anthony asked, mom said, “I have to finish. You touch yours.” Anthony is starting to become quite the clinician!! He thought he should use real objects and so I gathered a pencil, a book, a cup and his watch. He held each one up to mom and asked, “What’s this?” mom would look away. So Anthony kept showing mom his watch and asking what it is—then I described it to her, “It has numbers, and it tells time…” Mom said, “Banjo” and then she got stuck on “banjo” for a while. She couldn’t name any items spontaneously but she repeated what Anthony labeled. Then, Anthony took out the white board and he and mom drew (he tried to get her to make a circle), he also wrote words for her to read. Mom had just finished lunch so she was “mushy” in her affect.
Dad came shortly after Anthony and he and I remained with mom in the afternoon. Mom slept after Anthony left. She usually takes a rather lengthy (up to an hour or so) afternoon nap. When the pulmonologist and head of respiratory came in to see mom, she was sleeping. They woke her up. They noted her vent settings and said she was doing well. They said, “Good morning” and mom mouthed, “Good morning” back to them, but was sleepy the rest of the time. After they left, a woman with a large, muppet-like puppet came in to see mom with the recreation therapist. They talked to mom and the recreation therapist woke mom up and talked and talked to mom. The puppeteer sang a song to mom with the puppet and mom mouthed the words (“I’ll be loving you always”). At one point, earlier in the afternoon, mom took her hearing aid out and handed it to me. When I put it to my ear, I found that the battery was dead! Mom’s nose was running and so I gave her a tissue and asked her to wipe it and she did. The dietician came in after the recreation people left and gave us some weekly menus from which to select food. There was also a food preference sheet too. Mom’s night CNA came in to check on her and she said that mom told her “I love you too” after the aid told mom she loved her. Dad left after only 2 hours because he has a cold and didn’t feel great. Mom slept on and off for 1 hour and 20 minutes. After mom woke, I did the oral motor exercises that Carmine told us to do. The exercises in rounds of 50 on her cheek area, upper lip area and lower lip area, in addition to the tongue exercises. The aid said last night she felt to make mom’s bed before she came back—she had been praying for mom—and when she finished making the bed, she looked up and mom was being wheeled in. The aid said that she sits beside mom’s bed at night whenever mom is awake and she talks to mom and sings to her. She said she taught mom the song, “I am a Promise” and mom learned it quickly. She said she asked mom for a copy of Jean’s movie, “Just Like Joe” because she liked what she saw of it and mom told her, “Ask my husband.” She said she talks to mom and prays with her and sings with and to her. Mom was very, very sleepy today!!!! She would be awake a few minutes and then out like a light. Up and down all afternoon. While she was awake, I did some crosswords with her. Here are the clues she was able to figure out:
“Fail to attend” “I didn’t go I m____ it” Mom said, “Miss”
“A Great Lake that starts with E. Lake Eeee….” She didn’t get it so I sang, “I’ve got a mule her name is Sal…” Mom said, “ERIE!”
Mom fell asleep again. Her CNA came in to put her to bed. The pulmonologist ordered a chest x-ray for mom for Monday!!! NO! If she needs medication, then she can’t wait until Monday. One of the nurses said she would get the x-ray by tomorrow. Hopefully, she will. The Dietician came to talk to me after mom was in bed. She said that based on the fact that we are all around to monitor mom so much, she is going to stop the liquid feeding. She said we should monitor whether mom is eating at least ½ of her food at every meal. If we feel she needs a supplement, mom will get an oral liquid. No more feeding through the tube!! YIPPEE!! The dietician said that the tube may come out in a month or 2 but usually as long as mom is on the vent, she keeps the feeding tube for emergency reasons. Less trauma. Quick emergency access. Makes sense. The speech therapist is going to teach us how to feed mom but said it is similar to feeding a baby. As I am writing this, the man came in to give mom the chest x-ray! Mom's doctor at the facility also came in to talk to dad, Ant and I today and said that the reason he sent mom to the hospital that is far away from the facility is because he is affiliated with that hospital and has more say and control over what goes on there. So, for example, he could dictate what happens to mom and when she comes back to the facility or whether she stays in the hospital or not. He said that this hospital would be used for non-emergency hospital visits. Not for tests or emergencies. He asked us to decide where we want her to go and to let him know. Mom's day CNA said that as she fed mom the other day, she asked mom if the food tasted good and mom smiled and said, "Yes. Very good." When the CNA asked mom again, mom said, "Good" in a quick sharp way. By the third time that the CNA asked mom, mom rolled her eyes at her and made a face.
Claudia spent the night with mom until the early evening. She said that the CNA fed mom dinner (not mom's CNA, another one). Mom ate chicken, rice pilaf, tomato soup, vanilla milk, coffee, and vegetables. Whenever mom was asked if she wanted more, mom responded, "No thank you" or "Yes." Claudia said she had to coach the CNA a lot regarding how much food to put on the fork/spoon because the CNA was shoveling the food in. I guess the faster the better for the CNA. Joy. Maybe we can feed her. Mom was also not sitting up right in the bed either for eating. Claudia and mom looked through a catalog and mom labeled things: boots, and flowers. They looked through the magazine and laughed and labeled things and she did lick her finger and partially turn the page but Claudia had to help her the rest of the way. Then, Claudia worked on labeling body parts by putting on a CD and showing mom pictures and mom gave a disgusted look, so Claudia said, "Fine, label these things and I will put it all away." However, mom didn't and then mom either couldn't or wouldn't label some of the items. Claudia did mom's full physical therapy/range of motion exercises on her upper body and feet but not her legs because mom fell asleep again out like a light.
"In him our hearts rejoice, for we trust in his holy name." Psalm 33:21
Mom Update, March 10, 2011, Thursday
Claudia wrote:
Claudia started the day with mom. She was up and awake but foggy. She didn’t talk much. I wrote on the wipe off board that it was Anthony’s 50th birthday. She did the “masseter”
exercises with her facial muscles, this is the exercise at the back of the jaw . The masseter muscle is the muscle you feel when you clench your teeth. You take 2 of your fingers and place them on the face at this point on the jaw and do 50, rapid forward circles and then 50, rapid backward circles. This stimulates the jaw, swallowing, facial muscles... Mom cooperated with the exercise and bit down so Claudia knew where to place her fingers. She also did the exercises with her tongue and the dentifrice tool. It took mom a long time to open her mouth and even longer to stick out her tongue. She kept reminding her that it was Anthony’s birthday. She also did her full PT.
Dad and Anthony went to see mom around 11:30. Mom was in the rec room with her roommate, her CNA and the speech therapist. As soon as mom saw Anthony she said, “Happy Birthday.” The CNA and speech therapist couldn’t believe it! Anthony was so happy, but most of all he was happy that they heard it too. Now that’s one heck of a birthday gift! They visited with mom and then went home. My dad received a call from the facility at about 2:15 and someone on the phone said that her tube came out again and that they were taking her to the hospital, Good Sam. My father was with Anthony and they were both very upset. They got in the car and Anthony thought, Good Sam? Let’s call them back and get the details. They went back home, and dad called to find out that her feeding tube “fell out.” They were sending her to Good Sam because the doctor at the facility is affiliated with Good Sam. Dad and Anthony then called me and Kathy. Dad, Anth and I all arrived at Good Sam, but mom was not there yet. It took them over an hour to get her to Good Sam because of an accident on the LIE. Kathy went to the facility to find out that it didn’t “fall out” (This is basically impossible) and that when they were wheeling her back to the room from the rec room they pulled it out because it got hooked on the wheel of her wheel chair. They said they heard a “Pop.” The sound they heard was the balloon that is inflated under the skin to prevent it from “falling” out. They had pulled it through the skin and it popped as it left her body. A CNA told Kathy that this happens all of the time and she will be back from the hospital in no time. When I saw her at the hospital she had blood on her nightgown. I said that if anyone tells me that it is no big deal and that it happens all of the time I am going to ask that person if it is OK if I make them bleed! “Let me pull a balloon through your skin so it makes a popping noise and causes you to bleed and we will see if it is no big deal!” They will have to hold her back on her next visit (Lol).
Kathy wrote:
When I arrived to see mom around noon today, mom was in the recreation room with dad and Anthony. Her CNA was feeding her lunch and everyone was pleased with her progress--the CNA also told me about how mom told Anthony "Happy Birthday." Mom had a full breakfast and then ate a huge plate of stuffed fish (sole?), rice, potatoes, vegetables and pears. She also drank juice and thickened coffee too. She held the cup to drink and sucked through the straw.
I went back to work and got the call from Anthony (he sounded extremely upset which upset me), saying that "it happened again to mom!!! The tube came out again!!!" I left work and ran to go to the hospital (Good Samaritan...far from where mom is---45 minutes ride at best). Once in the car, I called the facility and no one knew anything!! Not where mom was taken, why she was being taken far away (once they knew where), what happened...this includes the head nurse. Anthony called to say that he and dad called the facility back and found out it was mom's feeding tube and not her trach tube. They went to the hospital (dad, Ant, Claudia) and I went to the facility to find out what happened. I was upset but factual and calm in order to find out the information. I was pointed in the direction of a respiratory therapist---a young person---when I asked the therapist what happened---I was told it wasn't her fault and that she was just there to "care for the vent and the airway"---I asked her if "Do you think it would be too much to ask you to check to make sure that the person attached to the vent was stable before you moved her? Especially since you are the one with the educational background?" She became sassier then she already was and mouthed off in an arrogant, rude voice to me. I was shocked! She then said, "Oh, you don't have an attitude with me?" I said I was upset because my mom was rushed to the hospital and she laughed at me. i began to cry. I spoke to mom's CNA who said this happens all the time. I spoke to the head nurse to find out why, after all these months, they are still calling dad in an emergency even though we asked that they call me--since dad has a hearing aid, hearing loss, tinitus, and is anxious and almost 80.... Wonders never cease to amaze me there. I fixed that problem, checked in on how mom was doing, and went back to work. After work, I went to the hospital, where mom was having an x-ray of the temporary, emergency tube that the Physician's Assistant put in at the facility. All looked well in the xray and mom was in good spirits as well. Claudia and I were going to spend a night on the North Fork and the day out there tomorrow...we didn't go. Everyone went home while I stayed at the hospital with mom because we were told the ambulance would be there to transport her in 20 mins to an hour. It was 6 p.m. then. While we waited, I exercised mom's hands and fingers. We also recited some nursery rhymes (she remembered every word) and then we recited a poem she used to tell us over and over when we were little:
The Owl and the Pussy Cat by Edward Lear
1The Owl and the Pussy-Cat went to sea
2 In a beautiful pea-green boat:
3They took some honey, and plenty of money
4 Wrapped up in a five-pound note.
5The Owl looked up to the stars above,
6 And sang to a small guitar,
7"O lovely Pussy, O Pussy, my love,
8 What a beautiful Pussy you are,
9 You are,
10 You are!
11 What a beautiful Pussy you are!
II.
12Pussy said to the Owl, "You elegant fowl,
13 How charmingly sweet you sing!
14Oh! let us be married; too long we have tarried:
15 But what shall we do for a ring?"
16They sailed away, for a year and a day,
17 To the land where the bong-tree grows;
18And there in a wood a Piggy-wig stood,
19 With a ring at the end of his nose,
20 His nose,
21 His nose,
22 With a ring at the end of his nose.
Mom remembered every word!!! Then we recited a poem that mom sang at an assembly when she was 8 or 10 years old in Brooklyn, Joyce Kilmer's TREES
I think that I shall never see
A poem as lovely as a tree
A tree whose hungry mouth is prest
Against the earth's sweet flowing breast
A tree who looks at God all day
And lifts her leafy arms to pray
A tree who may in summer wear
A nest of robins in her hair
Upon whose bosom snow has lain
Who intimately lives with rain
Poems are made by fools like me
But only God can make a tree
Mom remembered every word. We sang old songs and recited poetry.... but the ambulance didn't arrive until 4 hours later at 10 p.m.!!!! Though I was impatient and upset at the delay, I kept reminding myself to be thankful that it was an ambulance coming and not a hearse. Thank God. I followed it to the facility and made sure mom was all tucked in and safe and sound. Mom and I prayed and I anointed her with oil.
Another day.....as Con would say, "Never a dull...."
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9
Claudia started the day with mom. She was up and awake but foggy. She didn’t talk much. I wrote on the wipe off board that it was Anthony’s 50th birthday. She did the “masseter”
exercises with her facial muscles, this is the exercise at the back of the jaw . The masseter muscle is the muscle you feel when you clench your teeth. You take 2 of your fingers and place them on the face at this point on the jaw and do 50, rapid forward circles and then 50, rapid backward circles. This stimulates the jaw, swallowing, facial muscles... Mom cooperated with the exercise and bit down so Claudia knew where to place her fingers. She also did the exercises with her tongue and the dentifrice tool. It took mom a long time to open her mouth and even longer to stick out her tongue. She kept reminding her that it was Anthony’s birthday. She also did her full PT.
Dad and Anthony went to see mom around 11:30. Mom was in the rec room with her roommate, her CNA and the speech therapist. As soon as mom saw Anthony she said, “Happy Birthday.” The CNA and speech therapist couldn’t believe it! Anthony was so happy, but most of all he was happy that they heard it too. Now that’s one heck of a birthday gift! They visited with mom and then went home. My dad received a call from the facility at about 2:15 and someone on the phone said that her tube came out again and that they were taking her to the hospital, Good Sam. My father was with Anthony and they were both very upset. They got in the car and Anthony thought, Good Sam? Let’s call them back and get the details. They went back home, and dad called to find out that her feeding tube “fell out.” They were sending her to Good Sam because the doctor at the facility is affiliated with Good Sam. Dad and Anthony then called me and Kathy. Dad, Anth and I all arrived at Good Sam, but mom was not there yet. It took them over an hour to get her to Good Sam because of an accident on the LIE. Kathy went to the facility to find out that it didn’t “fall out” (This is basically impossible) and that when they were wheeling her back to the room from the rec room they pulled it out because it got hooked on the wheel of her wheel chair. They said they heard a “Pop.” The sound they heard was the balloon that is inflated under the skin to prevent it from “falling” out. They had pulled it through the skin and it popped as it left her body. A CNA told Kathy that this happens all of the time and she will be back from the hospital in no time. When I saw her at the hospital she had blood on her nightgown. I said that if anyone tells me that it is no big deal and that it happens all of the time I am going to ask that person if it is OK if I make them bleed! “Let me pull a balloon through your skin so it makes a popping noise and causes you to bleed and we will see if it is no big deal!” They will have to hold her back on her next visit (Lol).
Kathy wrote:
When I arrived to see mom around noon today, mom was in the recreation room with dad and Anthony. Her CNA was feeding her lunch and everyone was pleased with her progress--the CNA also told me about how mom told Anthony "Happy Birthday." Mom had a full breakfast and then ate a huge plate of stuffed fish (sole?), rice, potatoes, vegetables and pears. She also drank juice and thickened coffee too. She held the cup to drink and sucked through the straw.
I went back to work and got the call from Anthony (he sounded extremely upset which upset me), saying that "it happened again to mom!!! The tube came out again!!!" I left work and ran to go to the hospital (Good Samaritan...far from where mom is---45 minutes ride at best). Once in the car, I called the facility and no one knew anything!! Not where mom was taken, why she was being taken far away (once they knew where), what happened...this includes the head nurse. Anthony called to say that he and dad called the facility back and found out it was mom's feeding tube and not her trach tube. They went to the hospital (dad, Ant, Claudia) and I went to the facility to find out what happened. I was upset but factual and calm in order to find out the information. I was pointed in the direction of a respiratory therapist---a young person---when I asked the therapist what happened---I was told it wasn't her fault and that she was just there to "care for the vent and the airway"---I asked her if "Do you think it would be too much to ask you to check to make sure that the person attached to the vent was stable before you moved her? Especially since you are the one with the educational background?" She became sassier then she already was and mouthed off in an arrogant, rude voice to me. I was shocked! She then said, "Oh, you don't have an attitude with me?" I said I was upset because my mom was rushed to the hospital and she laughed at me. i began to cry. I spoke to mom's CNA who said this happens all the time. I spoke to the head nurse to find out why, after all these months, they are still calling dad in an emergency even though we asked that they call me--since dad has a hearing aid, hearing loss, tinitus, and is anxious and almost 80.... Wonders never cease to amaze me there. I fixed that problem, checked in on how mom was doing, and went back to work. After work, I went to the hospital, where mom was having an x-ray of the temporary, emergency tube that the Physician's Assistant put in at the facility. All looked well in the xray and mom was in good spirits as well. Claudia and I were going to spend a night on the North Fork and the day out there tomorrow...we didn't go. Everyone went home while I stayed at the hospital with mom because we were told the ambulance would be there to transport her in 20 mins to an hour. It was 6 p.m. then. While we waited, I exercised mom's hands and fingers. We also recited some nursery rhymes (she remembered every word) and then we recited a poem she used to tell us over and over when we were little:
The Owl and the Pussy Cat by Edward Lear
1The Owl and the Pussy-Cat went to sea
2 In a beautiful pea-green boat:
3They took some honey, and plenty of money
4 Wrapped up in a five-pound note.
5The Owl looked up to the stars above,
6 And sang to a small guitar,
7"O lovely Pussy, O Pussy, my love,
8 What a beautiful Pussy you are,
9 You are,
10 You are!
11 What a beautiful Pussy you are!
II.
12Pussy said to the Owl, "You elegant fowl,
13 How charmingly sweet you sing!
14Oh! let us be married; too long we have tarried:
15 But what shall we do for a ring?"
16They sailed away, for a year and a day,
17 To the land where the bong-tree grows;
18And there in a wood a Piggy-wig stood,
19 With a ring at the end of his nose,
20 His nose,
21 His nose,
22 With a ring at the end of his nose.
Mom remembered every word!!! Then we recited a poem that mom sang at an assembly when she was 8 or 10 years old in Brooklyn, Joyce Kilmer's TREES
I think that I shall never see
A poem as lovely as a tree
A tree whose hungry mouth is prest
Against the earth's sweet flowing breast
A tree who looks at God all day
And lifts her leafy arms to pray
A tree who may in summer wear
A nest of robins in her hair
Upon whose bosom snow has lain
Who intimately lives with rain
Poems are made by fools like me
But only God can make a tree
Mom remembered every word. We sang old songs and recited poetry.... but the ambulance didn't arrive until 4 hours later at 10 p.m.!!!! Though I was impatient and upset at the delay, I kept reminding myself to be thankful that it was an ambulance coming and not a hearse. Thank God. I followed it to the facility and made sure mom was all tucked in and safe and sound. Mom and I prayed and I anointed her with oil.
Another day.....as Con would say, "Never a dull...."
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9
Wednesday, March 9, 2011
Mom Update, Wednesday, March 9, 2011
We have some newcomers to the daily email, so if any of you want to trace mom's progress back to the beginning, go to our family blog at http://dottysupdates-kgranelli.blogspot.com
Claudia began the day with mom and said that mom was pretty sleepy this morning. Claudia said that mom was awake/asleep--up and down. As Claudia did mom's full physical therapy/range of motion exercises, mom grimaced when Claudia worked on her hand so Claudia asked, "Oh, does your hand hurt mom?" and mom said, "No, my arms." This is great progress, for mom to be able to tell us what hurts.
Anthony saw mom later this morning. He did mom's full physical therapy/range of motion exercises and worked on mom's hand and arm strengthening using the orange, scrunchy tube. Mom held one side and he pulled the other. Mom was able to complete this activity with prompting Mom also looked at a magazine with Anthony and they talked and read as she looked at it. She was able to close the magazine alone. Mom had a shower next.
Dad said that he did mom's full physical therapy/range of motion exercises again this afternoon. He said that mom ate blintzes for breakfast with juice, some sort of parmesan dish and cake for lunch, and pork and beans, macaroni salad, coffee and juice for dinner. Her first coffee in over 9 months! Dad said mom slept for about an hour after lunch but then woke up and they played with the pegs and pegboard for a while.
Con and Sammy saw mom tonight. They said she was smiling and very alert. She mouthed alot of words and sentences but they didn't understand her. Sammy read mom the , "All About Me" book and some of the "Olivia the Pig" books too. Con asked mom to clap her hands and she did!! They talked and she smiled alot and then they prayed with her and tucked her in for the night.
Claudia and I met with Carmine tonight; he is Con and John's cousin who has been doing speech therapy with mom. God bless Carmine. We are so grateful for all he is doing with mom. He gave us a report on where mom is now and said that she had a great day on Monday. She was answering yes/no questions and very alert. Carmine gave us many oral motor exercises to do with mom too. Here are our notes from the meeting with Carmine:
Carmine is coming every Monday to see mom, though many times he comes more often than this.
1. Remind mom to tuck her chin in when she eats---this blocks the trachea
2. Mom did great this week. Answered yes and no questions. When you can taste food a person feels better. Squeeze the hand. Aspiration is when food goes down the trach and goes into the lungs…and causes maybe pneumonia…or infection or breathing difficulty. Sometimes the food goes away---absorbs and sometimes it stays and causes problems.
3. Get copy of test results of swallow test for carmine
4. Oral facial muscular system--- massitar rotation exercises and lip massage upper and lower and then the tongue…
5. We need to work on mom’s facial muscles because they are weak from no use in eating in 9 months
6. Movements on the tongue---elevate and reject and lateralize…
7. Massitar rotation at back of mouth near last teeth in circles up and down 50 times every day
8. Three fingers on upper lip in a circular rotation clockwise and counterclockwise on lower lip too the same
9. Quick circles and not hard…
10. Tip of tongue, top of tongue, across and across 10 and 10 times every other day
11. Side of tongue, side of tongue, back and forth 10 and 10 times every other day
12. Push down on tongue with sponge and tell her to push down on tongue and have mom push up
Mom is showing progress, and for this we are thankful.
"And I will show wonders in the heavens and on the earth..." Joel 2:30
Claudia began the day with mom and said that mom was pretty sleepy this morning. Claudia said that mom was awake/asleep--up and down. As Claudia did mom's full physical therapy/range of motion exercises, mom grimaced when Claudia worked on her hand so Claudia asked, "Oh, does your hand hurt mom?" and mom said, "No, my arms." This is great progress, for mom to be able to tell us what hurts.
Anthony saw mom later this morning. He did mom's full physical therapy/range of motion exercises and worked on mom's hand and arm strengthening using the orange, scrunchy tube. Mom held one side and he pulled the other. Mom was able to complete this activity with prompting Mom also looked at a magazine with Anthony and they talked and read as she looked at it. She was able to close the magazine alone. Mom had a shower next.
Dad said that he did mom's full physical therapy/range of motion exercises again this afternoon. He said that mom ate blintzes for breakfast with juice, some sort of parmesan dish and cake for lunch, and pork and beans, macaroni salad, coffee and juice for dinner. Her first coffee in over 9 months! Dad said mom slept for about an hour after lunch but then woke up and they played with the pegs and pegboard for a while.
Con and Sammy saw mom tonight. They said she was smiling and very alert. She mouthed alot of words and sentences but they didn't understand her. Sammy read mom the , "All About Me" book and some of the "Olivia the Pig" books too. Con asked mom to clap her hands and she did!! They talked and she smiled alot and then they prayed with her and tucked her in for the night.
Claudia and I met with Carmine tonight; he is Con and John's cousin who has been doing speech therapy with mom. God bless Carmine. We are so grateful for all he is doing with mom. He gave us a report on where mom is now and said that she had a great day on Monday. She was answering yes/no questions and very alert. Carmine gave us many oral motor exercises to do with mom too. Here are our notes from the meeting with Carmine:
Carmine is coming every Monday to see mom, though many times he comes more often than this.
1. Remind mom to tuck her chin in when she eats---this blocks the trachea
2. Mom did great this week. Answered yes and no questions. When you can taste food a person feels better. Squeeze the hand. Aspiration is when food goes down the trach and goes into the lungs…and causes maybe pneumonia…or infection or breathing difficulty. Sometimes the food goes away---absorbs and sometimes it stays and causes problems.
3. Get copy of test results of swallow test for carmine
4. Oral facial muscular system--- massitar rotation exercises and lip massage upper and lower and then the tongue…
5. We need to work on mom’s facial muscles because they are weak from no use in eating in 9 months
6. Movements on the tongue---elevate and reject and lateralize…
7. Massitar rotation at back of mouth near last teeth in circles up and down 50 times every day
8. Three fingers on upper lip in a circular rotation clockwise and counterclockwise on lower lip too the same
9. Quick circles and not hard…
10. Tip of tongue, top of tongue, across and across 10 and 10 times every other day
11. Side of tongue, side of tongue, back and forth 10 and 10 times every other day
12. Push down on tongue with sponge and tell her to push down on tongue and have mom push up
Mom is showing progress, and for this we are thankful.
"And I will show wonders in the heavens and on the earth..." Joel 2:30
Tuesday, March 8, 2011
Mom Update, March 8, 2011, Tuesday
Claudia began the day with mom. She said mom was asleep at first but woke up and was bright eyed and alert. Claudia said she was great! Very talkative. Mom's right eye had a lot of film in it so Claudia cleaned her eyes really well. I noticed a lot of film in the right eye last night too. The CNA helped Claudia straighten mom out (this was mom's old CNA, who comes to visit mom alot!). They set up her pillows and put her glasses on. Finally, in response to mom's mouthing things, Claudia asked, "Oh you want your hearing aids mom?" Mom mouthed, "Yes." Claudia gave them to her and put them in. Mom spoke about a hundred words and Claudia heard maybe 10? Carmine, John and Con's cousin who is a speech therapist, has been faithfully coming to see mom---he is an angel from the Lord!!!!! God Bless him for all he is doing for mom. The difference in her cognition and language skills, I know is from Carmine!! Carmine called and told Claudia that mom had an amazing day yesterday and that mom did alot!!!! He wants us to continue the oral motor exercises. God bless Carmine---God only knows that the speech therapist at the facility does NOTHING with mom. Such a sin. Claudia tried to do leg lifts but mom couldn't do anything. They also read the "Getting Better" book...mom repeated a part over and over and then moved forward with reading. Almost like stuttering when she read---but she never did that before...she repeated, "If I want to get better..." over and over. They also played with the plastic piggy that shoots balls out of its mouth.
Anthony came next and said that mom was asleep but then woke up. Mom ate turkey, home fry-style potatoes, and carrots for lunch. She also drank juice. She ate a lot but indicated when she didn't want any more by keeping her mouth closed after a while and then by answering, "No" when asked if she wanted more. He tried to work on her legs but she only moved her feet not her legs and only her left leg in conjunction with her right leg moving as well. He tried to do the pegs and pegboard but mom couldn't do any. He did some hand over hand and then left the pegs scattered on the tray and mom moved them around and grabbed for them and even tried to stack them but didn't have the strength to do it. Anthony said the speech therapist told him that mom will be getting 3 meals a day now 7 days a week! The speech therapist supposedly was going to tell the Occupational Therapist to work with mom on feeding herself...but no word yet!
Dad said that mom was awake and alert but got sleepy when he got there this afternoon. Mom's friends, Maureen and Flo, came to see her and though mom stayed awake, she didn't really participate in talking at all. For dinner, mom had grilled cheese with bacon, juice and string beans. Mom held the cup again to drink. He did her full physical therapy/range of motion exercise.
John came to be with mom tonight. He said they did a crossword puzzle and the clue was "cheese with holes" and mom mouthed, "Swiss cheese." He said she was very talkative but he largely couldn't understand what she was saying. He said that she was saying, "Jello" over and over but when he said, "Jello?" she mouthed, "No" and became frustrated when he said, "That is what you are saying." Finally, he said, "What are you trying to be Bill Cosby?" and she laughed. He did her full physical therapy/range of motion exercises. This is John's specialty, or one of the many, with mom---he really works on her hands and feet and toes and fingers. John tucked mom in and put her to bed tonight.
"Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory" Romans 5:2
Anthony came next and said that mom was asleep but then woke up. Mom ate turkey, home fry-style potatoes, and carrots for lunch. She also drank juice. She ate a lot but indicated when she didn't want any more by keeping her mouth closed after a while and then by answering, "No" when asked if she wanted more. He tried to work on her legs but she only moved her feet not her legs and only her left leg in conjunction with her right leg moving as well. He tried to do the pegs and pegboard but mom couldn't do any. He did some hand over hand and then left the pegs scattered on the tray and mom moved them around and grabbed for them and even tried to stack them but didn't have the strength to do it. Anthony said the speech therapist told him that mom will be getting 3 meals a day now 7 days a week! The speech therapist supposedly was going to tell the Occupational Therapist to work with mom on feeding herself...but no word yet!
Dad said that mom was awake and alert but got sleepy when he got there this afternoon. Mom's friends, Maureen and Flo, came to see her and though mom stayed awake, she didn't really participate in talking at all. For dinner, mom had grilled cheese with bacon, juice and string beans. Mom held the cup again to drink. He did her full physical therapy/range of motion exercise.
John came to be with mom tonight. He said they did a crossword puzzle and the clue was "cheese with holes" and mom mouthed, "Swiss cheese." He said she was very talkative but he largely couldn't understand what she was saying. He said that she was saying, "Jello" over and over but when he said, "Jello?" she mouthed, "No" and became frustrated when he said, "That is what you are saying." Finally, he said, "What are you trying to be Bill Cosby?" and she laughed. He did her full physical therapy/range of motion exercises. This is John's specialty, or one of the many, with mom---he really works on her hands and feet and toes and fingers. John tucked mom in and put her to bed tonight.
"Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory" Romans 5:2
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