Taking care of Dad also means taking care of his pets. We all try to keep in contact with each other regarding what has and hasn't been done for each pet fairly regularly. This is usually accomplished by text. Texting on the go, for me at least, often involves voice to text. It also includes some interesting text fails.
As I have mentioned in early posts, my dad has a parrot named Mickey. Mickey enjoys eating fruit so whenever fruit is on Dad's menu we will set some aside for him as well. One day I brought some melon to Dad's house and after we finished eating I cut up the remainder, put it in a storage bag with Mickey's name on it and put it in the refrigerator. Then I attempted a voice to text message to Hillery that should have read: I sliced up some melon and put it in the fridge in a bag marked "Mickey".
A few minutes later I received a reply: LOL! Omg!! Just one bag? Is it a garbage bag?
Huh? What the heck did I send her to get that response? I went back to re read my text...it read: I sliced up someone and put him in the fridge in a bag marked Mickey.
Note to self: voice to text is not your friend.
Saturday, November 22, 2014
Wednesday, November 19, 2014
my real name...
(My first name is not ERIN. For this part of the story I will have to tell you my real first name. Likely this will be the one and only post in which I will mention my first name. If it were not such a significant part of something that happened I would not consider it but, unfortunately, this part of the story does not work without it.)
Dad was transferred to a rehab hospital upon his discharge from the stroke ward. We were told he would need seven to ten days of rehab which would include physical therapy, occupational therapy and, hopefully, enough time for us to come up with a plan for round the clock care. Immediately it was clear, between me and my two sisters, we had very different ideas of what was right for Dad. This would take almost the entire stay to come to an agreement that satisfied everyone enough to be comfortable...at least for now.
After the transport left the hospital with Dad I loaded everything into the car and made my way to the facility. With any luck the staff would be sensitive to dementia patients having difficulty accepting assistance. Dad was still having trouble staying in reality. His short term memory would last minutes at best. His long term wasn't much better. Even worse, dad was still combative; he would insist he was going home, demand it, start to try to get up so he could walk out and we would have to restrain him until someone, usually me or one of my sisters, could talk some sense into him. None of this changed when he entered the rehab facility.
I entered the automatic doors and went to the front desk and asked if my dad had arrived yet. A sweet faced woman in scrubs who sat at the nurses station said he had just been brought in and directed me to his room. I peeked in to see how he was handling everything. Although he was clearly not happy to be in another hospital it appeared that the nurses helping him were assisting him with a trip to the toilet. If there was paper work to sign, now would be a good time.
I went back to the front desk and again spoke to the woman in scrubs who turned out to be a nurse named Patty. She walked me through all of the paper work. After about the fifth page I wished I had been able to attend Dad's doctor's appointments. The few things I did know for sure were relayed to me by word of mouth as they had been relevant. Now I was being asked for details I, quite frankly, didn't know. I winged it and asked Patty to hold out any pages I wasn't sure about. Then came a page that really made me uncomfortable. It was a waiver clearing the facility of liability if Dad should have an accident. No way was I going to sign that. I asked her to hold that out for my sisters' opinions, sure that they, too, would be unwilling to sign away our rights to sue if the facility was negligent.
I made my way back to Dad's room to check if the staff had been successful getting him to the toilet on time. They were not. Dad was on the bed and he was reaching into his sweat pants trying to pull out the adult diaper they had put on him. It was clear this solution felt strange and uncomfortable for him. A nurse was loudly trying to convince him to keep it on. It was time for me to intervene.
"Dad, I know that is uncomfortable but you have had an issue with bladder control", I explained, "I brought you two pairs of briefs but those are already soiled. If you can please keep this on, I will go get more briefs."
One of the nurses loudly chimed in, "Yes, Mr. Houlihan, you have to keep the diaper on!"
I shot her a quick look to let her know she wasn't helping and corrected. "DOCTOR Houlihan, ma'am", and leaned in and whispered, "Kindly refrain from referring to it as a 'diaper'. This is hard enough on his dignity without humiliating him with his physical problems."
She was annoyed but did not contradict me. The good news was that we did get him to leave the Depends on. It was a minor victory which I immediately relayed to my sisters. We would use the opportunity presented here to get dad accustomed to disposable briefs. That night I went to the store and got a large bag of pull up disposable briefs. Something good had finally come out of Dad's stroke. It might be the only thing.
Over the next few days we would all encounter this insensitive attitude from the staff. It was as if they either had no experience with Alzheimer's patients or simply no longer cared about the feelings of the patients. Perhaps, they felt that they didn't need to be that compassionate since all of their patients were temporary. My sisters and I found it alarming and rather shameful.
Mike came and joined me later that evening. Several times, Dad became agitated. He demanded his shoes insisting, "I'm going home right now!" I was so glad to have Mike there. He has a wonderful way with Dad.
"Dad, do you remember you had a stroke?" Mike asked calmly.
"No", Dad replied with a look of horror. "I don't remember any of that..."
"Yes", Mike explained, "You have been in the hospital for several days. You couldn't talk or stand for the first three. Your memory is not so good either."
"This is terrible", Dad said with a despairing tone.
"Well, here is something interesting...you haven't known me for very long but you always remember my name. You have known her" (pointing to me) "her whole life but for some reason can't remember her name. My point is that the memories are in there. We just have to figure out how to bring them out".
Dad nodded. He seemed to somewhat accept the situation for the moment.
(For some reason he would take Mike at his word but when I tried to explain this to him he sometimes responded in a tone of superiority, "Oh I did NOT!" or "I'm fine. Let's go!" Mike speculated that it was a "guy thing". Somehow it was less emasculating to accept any physical issue from another man than it was from a tiny woman.)
Dad's demands to leave, attempts to walk out on his own and his combative and stubborn attitude made him very difficult to work with and extremely unpopular with the staff. His insistence that he could walk on his own was a big problem, particularly given the slow response of the nurses when his bed alarm would sound indicating he was trying to get out of bed. Our family had no choice but to tag team sitting with him round the clock and because we all had jobs we had no choice but to hire senior sitters for the hours none of our family could be there. It was an exhausting schedule. The staff finally became so exasperated the doctor on staff prescribed Dad an antipsychotic to level him out enough that he could sleep through the night. Although it did give the nurses a much needed break it also affected his emotions.
I arrived for my early morning Dad sitting shift on Sunday at 6:00 AM. When I first arrived he was sleeping. It would be a while yet before he would fully wake up, but seamless sitting was mandatory given his unpredictable behavior. He stirred a few times before 8:30. I would peek to see if he was actually awake or just dosing. A few times I asked, "You okay, Daddy?" or "You need to use the restroom?'
Finally, he woke up and was ready to sit up. I turned on a nature program and asked him a few basic questions:
Do you know why you are here? (no)
Do you know you had a stroke? (no)
What is your name? (Thomas J O'Houlihan)
What is your birthdate? (he might pause but always answered this correctly)
Where do you live? (Brooklyn, NY...his hometown. He was certain about this answer. For some reason he had forgotten Texas completely)
How many children do you have? (this answer varied. I decided to focus on this one.)
Selfishly, I was deeply troubled how many times he answered "I don't know" to questions about the number and names of his children. He had not said my name from his own natural memory in over a year. It was heartbreaking to have put so much time into his care every week, to be committed to his health, hygiene and well being but to not be a prominent memory. I had been reduced to someone who was familiar but not exactly known. Out of desperation I began several memory exercises, hoping the stroke had not wiped his memory of me completely.
I walked him through his five children (he was not sure how many he had), trying to help him recall the names and order of birth. I had said the names in order a few times from the time he woke up to try to jog his memory, "Hillary, Paula, Jenny...". Then I started walking him through starting with "Who is your oldest?" "Then who is next?" And when he got stuck "is the next one a boy or a girl?" He actually had trouble with Tom and Jenny. I wondered if part of that was a kind block that his mind performed because they were the ones who had passed on. Dad stalled out after Tom.
"Is that everyone? " I asked, trying not to betray the answer.
"I think there's one more", he said, hesitantly.
"You're right", I said, trying not to get my hopes up, "There is one more. Can you tell me who is your fifth child?"
He thought for a minute and said "B....B..."
My heart sunk. Was he going to say my nephew's name, "Bradley"?
"B...B...Bird?" he stammered with uncertainly.
I was stunned. "That's right Dad", I encouraged, my heart pounding with hope, "Your youngest is named after a bird. It's a spring bird. Do you remember what bird?"
He thought again and said "Robin?"
"That's right, Dad! I'm Robin!" I replied, unable to control the tears welling up.
"You're Robin?" Dad asked, and he lit up for a second.
I hugged him and told him how happy that made me. He started to cry. "I can't...I can't....how can I forget my own child?" he sobbed.
"But, Dad, you remembered! Do you know how happy you have made me. I knew it was in there somewhere. It's all still in there, we just have to keep working at it," I said, breaking into tears, myself.
"I am so sorry", he wept, "I'm so, so sorry...". His body convulsed as his anguish continued.
"Daddy, I love you. I'm not going anywhere. We're going to get through this, I promise!" I did my best to reassure him. I hugged him for a while and we both had a good cry together. Never before would I have guessed that my stoic father, who was not given to displays of emotion, would weep in my arms as I comforted him the way he did that morning.
To be continued...
Dad was transferred to a rehab hospital upon his discharge from the stroke ward. We were told he would need seven to ten days of rehab which would include physical therapy, occupational therapy and, hopefully, enough time for us to come up with a plan for round the clock care. Immediately it was clear, between me and my two sisters, we had very different ideas of what was right for Dad. This would take almost the entire stay to come to an agreement that satisfied everyone enough to be comfortable...at least for now.
After the transport left the hospital with Dad I loaded everything into the car and made my way to the facility. With any luck the staff would be sensitive to dementia patients having difficulty accepting assistance. Dad was still having trouble staying in reality. His short term memory would last minutes at best. His long term wasn't much better. Even worse, dad was still combative; he would insist he was going home, demand it, start to try to get up so he could walk out and we would have to restrain him until someone, usually me or one of my sisters, could talk some sense into him. None of this changed when he entered the rehab facility.
I entered the automatic doors and went to the front desk and asked if my dad had arrived yet. A sweet faced woman in scrubs who sat at the nurses station said he had just been brought in and directed me to his room. I peeked in to see how he was handling everything. Although he was clearly not happy to be in another hospital it appeared that the nurses helping him were assisting him with a trip to the toilet. If there was paper work to sign, now would be a good time.
I went back to the front desk and again spoke to the woman in scrubs who turned out to be a nurse named Patty. She walked me through all of the paper work. After about the fifth page I wished I had been able to attend Dad's doctor's appointments. The few things I did know for sure were relayed to me by word of mouth as they had been relevant. Now I was being asked for details I, quite frankly, didn't know. I winged it and asked Patty to hold out any pages I wasn't sure about. Then came a page that really made me uncomfortable. It was a waiver clearing the facility of liability if Dad should have an accident. No way was I going to sign that. I asked her to hold that out for my sisters' opinions, sure that they, too, would be unwilling to sign away our rights to sue if the facility was negligent.
I made my way back to Dad's room to check if the staff had been successful getting him to the toilet on time. They were not. Dad was on the bed and he was reaching into his sweat pants trying to pull out the adult diaper they had put on him. It was clear this solution felt strange and uncomfortable for him. A nurse was loudly trying to convince him to keep it on. It was time for me to intervene.
"Dad, I know that is uncomfortable but you have had an issue with bladder control", I explained, "I brought you two pairs of briefs but those are already soiled. If you can please keep this on, I will go get more briefs."
One of the nurses loudly chimed in, "Yes, Mr. Houlihan, you have to keep the diaper on!"
I shot her a quick look to let her know she wasn't helping and corrected. "DOCTOR Houlihan, ma'am", and leaned in and whispered, "Kindly refrain from referring to it as a 'diaper'. This is hard enough on his dignity without humiliating him with his physical problems."
She was annoyed but did not contradict me. The good news was that we did get him to leave the Depends on. It was a minor victory which I immediately relayed to my sisters. We would use the opportunity presented here to get dad accustomed to disposable briefs. That night I went to the store and got a large bag of pull up disposable briefs. Something good had finally come out of Dad's stroke. It might be the only thing.
Over the next few days we would all encounter this insensitive attitude from the staff. It was as if they either had no experience with Alzheimer's patients or simply no longer cared about the feelings of the patients. Perhaps, they felt that they didn't need to be that compassionate since all of their patients were temporary. My sisters and I found it alarming and rather shameful.
Mike came and joined me later that evening. Several times, Dad became agitated. He demanded his shoes insisting, "I'm going home right now!" I was so glad to have Mike there. He has a wonderful way with Dad.
"Dad, do you remember you had a stroke?" Mike asked calmly.
"No", Dad replied with a look of horror. "I don't remember any of that..."
"Yes", Mike explained, "You have been in the hospital for several days. You couldn't talk or stand for the first three. Your memory is not so good either."
"This is terrible", Dad said with a despairing tone.
"Well, here is something interesting...you haven't known me for very long but you always remember my name. You have known her" (pointing to me) "her whole life but for some reason can't remember her name. My point is that the memories are in there. We just have to figure out how to bring them out".
Dad nodded. He seemed to somewhat accept the situation for the moment.
(For some reason he would take Mike at his word but when I tried to explain this to him he sometimes responded in a tone of superiority, "Oh I did NOT!" or "I'm fine. Let's go!" Mike speculated that it was a "guy thing". Somehow it was less emasculating to accept any physical issue from another man than it was from a tiny woman.)
Dad's demands to leave, attempts to walk out on his own and his combative and stubborn attitude made him very difficult to work with and extremely unpopular with the staff. His insistence that he could walk on his own was a big problem, particularly given the slow response of the nurses when his bed alarm would sound indicating he was trying to get out of bed. Our family had no choice but to tag team sitting with him round the clock and because we all had jobs we had no choice but to hire senior sitters for the hours none of our family could be there. It was an exhausting schedule. The staff finally became so exasperated the doctor on staff prescribed Dad an antipsychotic to level him out enough that he could sleep through the night. Although it did give the nurses a much needed break it also affected his emotions.
I arrived for my early morning Dad sitting shift on Sunday at 6:00 AM. When I first arrived he was sleeping. It would be a while yet before he would fully wake up, but seamless sitting was mandatory given his unpredictable behavior. He stirred a few times before 8:30. I would peek to see if he was actually awake or just dosing. A few times I asked, "You okay, Daddy?" or "You need to use the restroom?'
Finally, he woke up and was ready to sit up. I turned on a nature program and asked him a few basic questions:
Do you know why you are here? (no)
Do you know you had a stroke? (no)
What is your name? (Thomas J O'Houlihan)
What is your birthdate? (he might pause but always answered this correctly)
Where do you live? (Brooklyn, NY...his hometown. He was certain about this answer. For some reason he had forgotten Texas completely)
How many children do you have? (this answer varied. I decided to focus on this one.)
Selfishly, I was deeply troubled how many times he answered "I don't know" to questions about the number and names of his children. He had not said my name from his own natural memory in over a year. It was heartbreaking to have put so much time into his care every week, to be committed to his health, hygiene and well being but to not be a prominent memory. I had been reduced to someone who was familiar but not exactly known. Out of desperation I began several memory exercises, hoping the stroke had not wiped his memory of me completely.
I walked him through his five children (he was not sure how many he had), trying to help him recall the names and order of birth. I had said the names in order a few times from the time he woke up to try to jog his memory, "Hillary, Paula, Jenny...". Then I started walking him through starting with "Who is your oldest?" "Then who is next?" And when he got stuck "is the next one a boy or a girl?" He actually had trouble with Tom and Jenny. I wondered if part of that was a kind block that his mind performed because they were the ones who had passed on. Dad stalled out after Tom.
"Is that everyone? " I asked, trying not to betray the answer.
"I think there's one more", he said, hesitantly.
"You're right", I said, trying not to get my hopes up, "There is one more. Can you tell me who is your fifth child?"
He thought for a minute and said "B....B..."
My heart sunk. Was he going to say my nephew's name, "Bradley"?
"B...B...Bird?" he stammered with uncertainly.
I was stunned. "That's right Dad", I encouraged, my heart pounding with hope, "Your youngest is named after a bird. It's a spring bird. Do you remember what bird?"
He thought again and said "Robin?"
"That's right, Dad! I'm Robin!" I replied, unable to control the tears welling up.
"You're Robin?" Dad asked, and he lit up for a second.
I hugged him and told him how happy that made me. He started to cry. "I can't...I can't....how can I forget my own child?" he sobbed.
"But, Dad, you remembered! Do you know how happy you have made me. I knew it was in there somewhere. It's all still in there, we just have to keep working at it," I said, breaking into tears, myself.
"I am so sorry", he wept, "I'm so, so sorry...". His body convulsed as his anguish continued.
"Daddy, I love you. I'm not going anywhere. We're going to get through this, I promise!" I did my best to reassure him. I hugged him for a while and we both had a good cry together. Never before would I have guessed that my stoic father, who was not given to displays of emotion, would weep in my arms as I comforted him the way he did that morning.
To be continued...
Sunday, November 16, 2014
Fall risk (part 2)
Following that night I spent with Dad after my first unsuccessful shower weekend another week went by. That Friday I came to dad's house and he, again, was very weak...too weak to shower. Again, I spent the night. Mike stayed with me. Early that morning Mike went home to feed our dogs. I stayed and made breakfast for myself, Allison and Dad. I made eggs, cinnamon toast and sliced strawberries. Dad enjoyed the homemade breakfast while I observed. He was having trouble locating his mouth with his fork. It crossed my mind that he was still just tired but I messaged Paula letting her know what I was seeing. We agreed to keep a close eye on him for the next couple days. After breakfast, Allison and I hugged Dad and promised to come back that night.
We returned, as usual, at six o'clock, Saturday. Dad was standing when Mike and I entered and it was apparent that he had lost control of his bladder. We would have to insist on a shower no matter how difficult it would be. Dad fought us as best he could, arguing, promising to shower later, getting angry and demanding that we leave. We finally caught him off guard and got him to sit down in the rolling walker. Tipping it backward we rolled him into the bedroom. He continued to protest, even going so far as grabbing the door frame. It was at that point I decided, "This is getting unsafe. After tonight I will need to say something to Paula. We have to get help with hygiene." Dad finally gave in and showered. It took a while but he definitely felt better when he was clean. We followed up with dinner and a movie as usual. It would be the last "normal" evening for a while...possibly ever. I had a gut feeling that we were about to be hit with another big wave of change. The next day would prove me right.
Our family always celebrates birthdays on Sunday. Since my niece, Tom's daughter, turned sixteen in October, it was time for a party. Text messages flew back and forth through out the day. "What does Casey need/want?" "Is Ann making the cake?" "I can't make it to the store, can you pick up _____?"
I had made it home at three o'clock after choosing gifts to bring and getting fruit to make a fruit salad. We began putting together our packages when I noticed I had missed a series of texts from Paula and responses from Bradley.
Paula: Dad fell in the bathroom. I have been trying to help him and am drenched with sweat. Need help.
Bradley: I am an hour away. I'm sorry. Wish I could help. Call Dad?
Paula: He's at work. I guess I will call 911.
Bradley: On my way back. Did you call?
Paula: Called. On way to emergency room.
We knew which hospital so I responded: Just saw this. Meet you there.
I quickly told Mike what was happening and we jumped in my car and raced to the ER.
As we walked through the sliding doors, Paula exited the automatic doors of the patient rooms. She walked straight to us.
"Dad isn't able to talk other then the occasional whisper and he isn't making much sense. I haven't been able to reach Hillary yet", she informed us.
"Okay, should I come back with you?" I asked. Bradley entered the ER just as I said this.
"You can. They will only let two of us in at a time."
I gave Mike a quick hug and kiss and followed Paula, glad that Mike had Bradley to wait with him.
Dad was in the room immediately after the automatic doors. They had really just arrived. We helped keep him calm as his IV was administered. He was also given an automatic blood pressure cuff. During that first hour he said a total of three words. When Dad's blood pressure cuff squeezed his arm uncomfortably he belted out a breathy "JESUS CHRIST!" A little while later when a tech came to take him for a CT scan I told him I would go with him and he managed an "Okay". That was pretty much all I heard from him that first night.
I stood in the doorway as he was positioned for his CT scan by two talkative techs. He was very agitated and kept moving and making noises trying to voice his confusion. I continuously called out, "It's okay, Dad. Stay still. They aren't going to hurt you." Then they closed the doors and I listened. I could hear the techs chatting and laughing as they did their job. Could they not see how confused and frightened Dad must be? I sat in the hallway, helpless as I waited for them to finish their scan. A woman in a wheelchair was in the hall with me. She was next for a scan. The waiting was awkward. Should I talk to her? Ask her how she was? Mind my own damn business? She broke the silence.
"Your Dad doesn't like hospitals much, does he?" she asked with a knowing smile.
"No, ma'am...no he doesn't. Ironically, he's a doctor", I replied.
"They're the worse patients", she smiled.
"They certainly are", I nodded, smiling back.
The doors opened and the techs wheeled Dad out and back to his room. He held my hand tightly as we made our way back. He was frightened and disoriented.That first night was a series of tests, scans, blood draws, poking, prodding and, above all, no clear answers.
Over the next several days it appeared Dad had a break with reality. The few intelligible words that he spoke indicated that he thought he lived with his parents in Ohio. Other interesting things he said were that he had three sons, five daughters, five cats and five dogs. Dad usually knew Paula and Hillary and for some reason also knew Mike by name. He was still comfortable with me but not sure who I was. After an ultrasound it was determined that he had had a TIA (Transient Ischemic Attack) or mini-stroke. Whatever had brought it on, it appeared to have accelerated his dementia. The second night he was there he ripped out his IV three times and continuously pulled off his leads. Because of the swelling in his legs, relocating the IV to a nonstandard entry was not an option. Hillary texted me and Paula, so frustrated and out of ideas to control him. We had no helpful suggestions.
From time to time Dad would become aggressive with the staff, demanding to leave, lashing out verbally and physically at the nurses trying to help him with toileting, changing, sitting or standing. We did our best to calm him but even we, his family, were not entirely safe. Each of us had to deal with his combative temperament. Once he managed to hit Paula in the face. He wrestled with me and Hillary. I remember after three days marveling as two tiny nurses came in to help with toileting and thinking, "Really? You couldn't find ANYONE bigger than me?" (Recall, I'm 4'11". Yes, they were that small!) The few times that he would remain calm we would try to explain to him that he had had a stroke. This explanation never stuck for more than a few minutes and eventually he would demand to know what was going on and try to get up to leave. Ultimately, we had no choice but to allow the nurses to sedate him for the safety of everyone including Dad.
Hillary covered many of the day shifts while Paula and I covered afternoons and evenings. The stroke ward was understaffed and it was important that we tag team it until either Dad remained cooperative or the staff was able to cope with his bouts of frustration. Doctors took me and my sisters aside individually and counseled each of us that it was no longer safe for Dad to live alone. Clearly arrangements would have to be made. By day five, the neurologist decided Dad should be released to a rehab facility for seven to ten days. I took the afternoon off to relieve Hillary and she went home, half delirious with exhaustion, to sleep it off. I stayed and awaited transfer orders. Around three o'clock we were told a transport to the rehab facility had been arranged and Dad could get dressed. Bradley stopped by with shoes for Dad and helped me dress him for transport. Still unable to stand for more than a few seconds Dad wanted to leave immediately once he was dressed. Bradley and I helped him to sit in a recliner in his room for the remainder of the time as we awaited his ride. It was clear he still was not in reality. He was sure that on the other side of the bathroom was a living room and wanted to go lay down on the couch. Dad also was convinced his house was only two blocks away rather than across town, and that he could easily walk there on his own.
Finally the nurse came in to tell us the transport was there and asked if he was ready. We would have preferred she had worded that differently. Of course he was ready.
"Okay, let's go!" Dad said, trying to stand.
"No, Dad, they're going to come up and get you", I said trying to keep him in his chair.
"Why? I'm just going home", he said.
"No, Grampa", Bradley explained, "They are taking you to get physical therapy."
"But I can walk just fine", Dad insisted angrily.
"Dad, you can barely stand", I said firmly, still trying to restrain him as he attempted to push us out of the way.
"Grampa, everyone leaves on wheels", Bradley said, "Even you."
Dad calmed down.
I knew the transport people were a few minutes late so I went out into the hall to see if they were on their way, There they were. Instead of a couple orderlies with a wheel chair, two huge guys were rolling an ambulance gurney down the hall. I went back into the room and quickly whispered to Bradley what was coming.
"This is going to be bad", he said with a look of fear.
"I think we should get out in the hall and let the transport team do their job", I suggested. Bradley agreed and we cleared out, waited and listened.
From inside the room we heard a few profanities from Dad followed by a loud, "Why do I have to go on there?"
"Sorry, sir. That's just what the orders say", one of the orderlies replied. A few seconds later they wheeled him out. Dad didn't see us in the hall. I grabbed his things and Bradley helped me to my car.
"Wow", he said in the elevator, "I'm surprised that went so calmly and quickly!"
"Really?" I smiled, "I'm more surprised the nurses weren't cheering and calling out 'Bon Voyage'!"
We both giggled. A rare moment of humor before the next storm.
To be continued....
We returned, as usual, at six o'clock, Saturday. Dad was standing when Mike and I entered and it was apparent that he had lost control of his bladder. We would have to insist on a shower no matter how difficult it would be. Dad fought us as best he could, arguing, promising to shower later, getting angry and demanding that we leave. We finally caught him off guard and got him to sit down in the rolling walker. Tipping it backward we rolled him into the bedroom. He continued to protest, even going so far as grabbing the door frame. It was at that point I decided, "This is getting unsafe. After tonight I will need to say something to Paula. We have to get help with hygiene." Dad finally gave in and showered. It took a while but he definitely felt better when he was clean. We followed up with dinner and a movie as usual. It would be the last "normal" evening for a while...possibly ever. I had a gut feeling that we were about to be hit with another big wave of change. The next day would prove me right.
Our family always celebrates birthdays on Sunday. Since my niece, Tom's daughter, turned sixteen in October, it was time for a party. Text messages flew back and forth through out the day. "What does Casey need/want?" "Is Ann making the cake?" "I can't make it to the store, can you pick up _____?"
I had made it home at three o'clock after choosing gifts to bring and getting fruit to make a fruit salad. We began putting together our packages when I noticed I had missed a series of texts from Paula and responses from Bradley.
Paula: Dad fell in the bathroom. I have been trying to help him and am drenched with sweat. Need help.
Bradley: I am an hour away. I'm sorry. Wish I could help. Call Dad?
Paula: He's at work. I guess I will call 911.
Bradley: On my way back. Did you call?
Paula: Called. On way to emergency room.
We knew which hospital so I responded: Just saw this. Meet you there.
I quickly told Mike what was happening and we jumped in my car and raced to the ER.
As we walked through the sliding doors, Paula exited the automatic doors of the patient rooms. She walked straight to us.
"Dad isn't able to talk other then the occasional whisper and he isn't making much sense. I haven't been able to reach Hillary yet", she informed us.
"Okay, should I come back with you?" I asked. Bradley entered the ER just as I said this.
"You can. They will only let two of us in at a time."
I gave Mike a quick hug and kiss and followed Paula, glad that Mike had Bradley to wait with him.
Dad was in the room immediately after the automatic doors. They had really just arrived. We helped keep him calm as his IV was administered. He was also given an automatic blood pressure cuff. During that first hour he said a total of three words. When Dad's blood pressure cuff squeezed his arm uncomfortably he belted out a breathy "JESUS CHRIST!" A little while later when a tech came to take him for a CT scan I told him I would go with him and he managed an "Okay". That was pretty much all I heard from him that first night.
I stood in the doorway as he was positioned for his CT scan by two talkative techs. He was very agitated and kept moving and making noises trying to voice his confusion. I continuously called out, "It's okay, Dad. Stay still. They aren't going to hurt you." Then they closed the doors and I listened. I could hear the techs chatting and laughing as they did their job. Could they not see how confused and frightened Dad must be? I sat in the hallway, helpless as I waited for them to finish their scan. A woman in a wheelchair was in the hall with me. She was next for a scan. The waiting was awkward. Should I talk to her? Ask her how she was? Mind my own damn business? She broke the silence.
"Your Dad doesn't like hospitals much, does he?" she asked with a knowing smile.
"No, ma'am...no he doesn't. Ironically, he's a doctor", I replied.
"They're the worse patients", she smiled.
"They certainly are", I nodded, smiling back.
The doors opened and the techs wheeled Dad out and back to his room. He held my hand tightly as we made our way back. He was frightened and disoriented.That first night was a series of tests, scans, blood draws, poking, prodding and, above all, no clear answers.
Over the next several days it appeared Dad had a break with reality. The few intelligible words that he spoke indicated that he thought he lived with his parents in Ohio. Other interesting things he said were that he had three sons, five daughters, five cats and five dogs. Dad usually knew Paula and Hillary and for some reason also knew Mike by name. He was still comfortable with me but not sure who I was. After an ultrasound it was determined that he had had a TIA (Transient Ischemic Attack) or mini-stroke. Whatever had brought it on, it appeared to have accelerated his dementia. The second night he was there he ripped out his IV three times and continuously pulled off his leads. Because of the swelling in his legs, relocating the IV to a nonstandard entry was not an option. Hillary texted me and Paula, so frustrated and out of ideas to control him. We had no helpful suggestions.
From time to time Dad would become aggressive with the staff, demanding to leave, lashing out verbally and physically at the nurses trying to help him with toileting, changing, sitting or standing. We did our best to calm him but even we, his family, were not entirely safe. Each of us had to deal with his combative temperament. Once he managed to hit Paula in the face. He wrestled with me and Hillary. I remember after three days marveling as two tiny nurses came in to help with toileting and thinking, "Really? You couldn't find ANYONE bigger than me?" (Recall, I'm 4'11". Yes, they were that small!) The few times that he would remain calm we would try to explain to him that he had had a stroke. This explanation never stuck for more than a few minutes and eventually he would demand to know what was going on and try to get up to leave. Ultimately, we had no choice but to allow the nurses to sedate him for the safety of everyone including Dad.
Hillary covered many of the day shifts while Paula and I covered afternoons and evenings. The stroke ward was understaffed and it was important that we tag team it until either Dad remained cooperative or the staff was able to cope with his bouts of frustration. Doctors took me and my sisters aside individually and counseled each of us that it was no longer safe for Dad to live alone. Clearly arrangements would have to be made. By day five, the neurologist decided Dad should be released to a rehab facility for seven to ten days. I took the afternoon off to relieve Hillary and she went home, half delirious with exhaustion, to sleep it off. I stayed and awaited transfer orders. Around three o'clock we were told a transport to the rehab facility had been arranged and Dad could get dressed. Bradley stopped by with shoes for Dad and helped me dress him for transport. Still unable to stand for more than a few seconds Dad wanted to leave immediately once he was dressed. Bradley and I helped him to sit in a recliner in his room for the remainder of the time as we awaited his ride. It was clear he still was not in reality. He was sure that on the other side of the bathroom was a living room and wanted to go lay down on the couch. Dad also was convinced his house was only two blocks away rather than across town, and that he could easily walk there on his own.
Finally the nurse came in to tell us the transport was there and asked if he was ready. We would have preferred she had worded that differently. Of course he was ready.
"Okay, let's go!" Dad said, trying to stand.
"No, Dad, they're going to come up and get you", I said trying to keep him in his chair.
"Why? I'm just going home", he said.
"No, Grampa", Bradley explained, "They are taking you to get physical therapy."
"But I can walk just fine", Dad insisted angrily.
"Dad, you can barely stand", I said firmly, still trying to restrain him as he attempted to push us out of the way.
"Grampa, everyone leaves on wheels", Bradley said, "Even you."
Dad calmed down.
I knew the transport people were a few minutes late so I went out into the hall to see if they were on their way, There they were. Instead of a couple orderlies with a wheel chair, two huge guys were rolling an ambulance gurney down the hall. I went back into the room and quickly whispered to Bradley what was coming.
"This is going to be bad", he said with a look of fear.
"I think we should get out in the hall and let the transport team do their job", I suggested. Bradley agreed and we cleared out, waited and listened.
From inside the room we heard a few profanities from Dad followed by a loud, "Why do I have to go on there?"
"Sorry, sir. That's just what the orders say", one of the orderlies replied. A few seconds later they wheeled him out. Dad didn't see us in the hall. I grabbed his things and Bradley helped me to my car.
"Wow", he said in the elevator, "I'm surprised that went so calmly and quickly!"
"Really?" I smiled, "I'm more surprised the nurses weren't cheering and calling out 'Bon Voyage'!"
We both giggled. A rare moment of humor before the next storm.
To be continued....
Friday, November 14, 2014
fall risk...(part 1)
Room 3101 [FALL RISK]. Room 3102 [FALL RISK]. Room 3103 [FALL RISK]. We continued down the hall of the hospital floor where they had moved Dad. This wing was specifically for stroke patients. It was alarming the number of rooms marked [FALL RISK]. Those rooms not marked were also not occupied. It was inevitable we would end up here. I will have to back track a bit to explain how we ended up in the stroke ward on a Sunday night.
Lately, I have been dealing with caregiver related depression. I know I am going through a low point when I start looking up the stages of Alzheimer's to see how long each stage generally lasts and fishing to see if we are getting close to the end of our journey. Then I think about how long I have been journaling as self therapy. I have only been writing a little over a year but it feels so much longer. I know Dad is at least at stage five but possibly at stage six depending on who you talk to. A few days ago I looked up the length of the stages. Stage five: 1.5 years. Stage six: 2.5 years. Stage 7: 1 to 2.5 years. My heart sunk. If he is only at stage five...this is a marathon I did not train to run. Likely we have a minimum of three more years of Dad getting progressively worse until we are eventually taking care of his shell. This time last year Dad seemed considerably more optimistic. He would walk the backyard slowly but unassisted, engage in lively (if repetitive) conversation, argue about hygiene but eventually cooperate with a little incentive from the bakery. Now he only goes outside to wave goodbye or sit on the porch. He stubbornly refuses his cane or rolling walker but can't get around without using the walls and furniture to support himself. For some reason he rejects these aids as a sign of weakness, offended at the thought that he might not be able to care for himself.
The original idea to start writing my thoughts on the progression of Dad's disease started about four years ago but I put it off feeling that it was a bit self indulgent, even arrogant to think I really had anything useful to say. I finally gave in when Dad seemed to be firmly in the moderate phase of the disease September last year. We have definitely had a roller coaster ride as a family since then. Funny how I thought the disease would be the focus of this journal but it really seems to be the the binding constant of an ever changing story about the caregivers rather than the patient. All of us cope in different ways. We have our good days and bad days. Some weeks we work like a well oiled machine and others we are ready to throttle each other or throw up our hands and walk away.
Patterns also change. Since Tom's death we are back to three shifts a week, each. Concern over dad's lack of exercise and unwillingness to leave his beloved recliner is at a new high. Dad doesn't remember to elevate his legs when he is in the recliner and because he is there for prolonged periods of time he gets edema in his calves, ankles and feet. This causes his skin to become tight and itchy especially on his left leg. He will scratch himself to the point of bleeding and sometimes will say he has to go to the restroom in order to privately dig at his leg and not have to listen to anyone telling him to stop. I have begun trimming his nails before each shower to keep him from scratching down to the bone. The first time I did this I joked about his long pinkie nail asking if he was try to grow a "coke scooper". My sisters enjoyed this little joke. Nail trimming is getting more and more important. He hates it but is always grateful once it is done. If he were allowed to keep his claws he would dig at his leg until he hit bone.
In the past four months Dad had gotten weaker and weaker. Each attempt to get him to shower or take his meds was becoming increasingly more difficult. The past three weeks it appeared the writing was on the wall. Dad defies any attempt at hygiene like a five year old trying to get his way. He insists that he showers every day, insulted at the implication that he does not. I tend to try to prove him wrong. Appealing to his sense of reason is quickly becoming pointless.
"You haven't showered in a week!"
"I most certainly have! I shower every day!" (This statement from Dad is never as fluid as it reads. It's stuttered, chopped and sometimes incomplete, but the message is loud and clear.)
"No you do not! You know how I know? I chose that outfit you are wearing last Saturday!"
These exchanges are repeated almost verbatim every week. When Dad realizes he can't talk his way out of it he turns his head, impatiently tapping the arm of his recliner, pondering his next argument. The past two attempts have ended with a grudging, "Okay, I'll do it but when I'm done you're gone."
"That's fine with me," I agree just as stubbornly, "As long as you shower I will be happy to leave once you are out".
He is never happy to hear that his terms are acceptable.
More and more I started finding him so weak on my nights that I would spend the night just to make sure his legs stayed elevated while he slept so he might have enough energy to move the next day. Mike, my constant supporter, will offer to take care of the Allison solo or even come over and spend the night as well. He keeps Dad company while I do laundry or dishes and helps me remind Dad to keep his feet up, even putting pillows under his calves for extra height. With Mike in the spare bedroom I take my place dosing on the couch. Occasionally, DAD wakes up in the middle of the night disoriented. I will hear him stir and then let out a startled "Uuuah!" as he wakes.
"You okay, Dad?" I ask in the dark.
"Paula?" he says sleepily.
"I'm Erin", I remind him gently.
"I gotta let buddy out", he says, struggling to get out of his recliner. I bring the rolling walker over to him for leverage but he rejects it at first. "I don't need that..." then after a few straining attempts to stand he has no choice but to take the offered help. Depending on how tired he is he may or may not use the walker to make his way to the back door to let out the dog and then go use the bathroom. I follow closely behind, acutely aware that even with me there if he begins to fall the odds of me being able to save him are slim.
On the nights that I chose to sleep there I informed Paula of my intentions. We both knew Dad's days with the illusion of independence were running out.
Two weeks ago I arrived for Friday shower night. Dad was more argumentative than usual and I was alarmed how weak he seemed. Nevertheless, I chose to continue to attempt hygiene since he had clearly not showered since the previous week. I put my cell phone in my pocket, ready to call for help if I should need it. Mike stayed with Allison in the kitchen preparing dinner and entertaining Buddy.
Dad began the ritual of preparing removing his socks, commenting on his swollen feet, pulling his pant leg over his knee so he could dig at his shin and then complain about what a mess it is, removing his watches (he wears one on each wrist. I remind him about them saying, "Ya wanna give me 'East Coast' and 'West Coast'?"), removing his outer shirt, pants, and finally hemming and hawing before giving me his t-shirt. As always I let out a playful "Aaaargh!" as he removed this last item because it still makes him laugh. I turned on the water and made sure it was appropriately warm before watching him make his way to the shower and allowing him to "do his thing in privacy".
I left the room and sat on the couch in the living area. Not thirty seconds had passed when I heard a noise like he had dropped his razor or a brush. Suspicious, I ran back into the bathroom and found him braced in the doorway of the toilet area, his legs shaking as he fought to remain standing. The shower door was open and the water still running. He had really tried to make it. I grabbed my phone and sent a one word text to Mike: "HELP".
Mike bolted into the room and positioned himself in front of Dad to keep him from falling forward while I remained behind him with trying to keep him from leaning too far to either side as we made our way back to the bed. His legs faultered beneath him a couple times. No way I could have helped him back to the bed by myself. Dad collapsed onto the bed and we positioned his feet up on the foam bed wedge. Next we helped him dress in clean scrubs. Shower would have to wait for another night.
Dad laid still while I searched for something on his bedroom TV to entertain him. I sent a text to Paula explaining what had happened. Mike brought dinner into the bedroom and we all camped out watching a boring movie that none of us were interested in.
"What are we doing in here", Dad asked from time to time.
"You almost fell", we explained. "We are staying in here while we keep your legs elevated".
Dad would sigh and roll his eyes. "We don't need to stay in here. Lets go out to the living room", he protested.
"No, this is good, Dad", I insisted. "Your legs need to stay up for now". It was frustrating for all of us.
Paula called after a while. "What happened?" she asked.
"We tried to get Dad to shower but he almost fell while he was in the bathroom", I explained and then detailed for her the events leading up to our positioning on the bed.
Paula, being the medical professional of my siblings, speculated what might have caused Dad's sudden weakness. She felt it could be heart failure related to the DVT that was causing the swelling in his legs and that we should keep both his legs and chest elevated in the "recliner" position. This new development could put him at risk for an embolism. Keeping him in the correct position should be easy enough as long as someone stayed with him. We agreed I would need to spend the night. Paula was grateful I was staying.
We positioned Dad on the recliner and, fortunately for me, Dad did not argue that he needed to use his walker during the night. He made two trips to the bathroom and to let Buddy out. If I had not been there to remind him he would have returned to the sitting position without reclining. I wondered how many nights I would have to spend like this.
Morning came and Dad was resting peacefully, still reclined with his legs elevated. I decided it was time to go. Bradley would be here soon and it didn't look like Dad was going anywhere. I softly told him, "Dad, I'm gonna go. You keep your feet up, okay?" He smiled and nodded. I gave him a kiss on the forehead and started to walk away.
"Hey...come here." he said weakly with a smile.
"What?" I asked and walked back. Dad held out his arms for a hug. I hugged him and told him I would be back later. I guess he was glad I stayed.
To be continued...
Lately, I have been dealing with caregiver related depression. I know I am going through a low point when I start looking up the stages of Alzheimer's to see how long each stage generally lasts and fishing to see if we are getting close to the end of our journey. Then I think about how long I have been journaling as self therapy. I have only been writing a little over a year but it feels so much longer. I know Dad is at least at stage five but possibly at stage six depending on who you talk to. A few days ago I looked up the length of the stages. Stage five: 1.5 years. Stage six: 2.5 years. Stage 7: 1 to 2.5 years. My heart sunk. If he is only at stage five...this is a marathon I did not train to run. Likely we have a minimum of three more years of Dad getting progressively worse until we are eventually taking care of his shell. This time last year Dad seemed considerably more optimistic. He would walk the backyard slowly but unassisted, engage in lively (if repetitive) conversation, argue about hygiene but eventually cooperate with a little incentive from the bakery. Now he only goes outside to wave goodbye or sit on the porch. He stubbornly refuses his cane or rolling walker but can't get around without using the walls and furniture to support himself. For some reason he rejects these aids as a sign of weakness, offended at the thought that he might not be able to care for himself.
The original idea to start writing my thoughts on the progression of Dad's disease started about four years ago but I put it off feeling that it was a bit self indulgent, even arrogant to think I really had anything useful to say. I finally gave in when Dad seemed to be firmly in the moderate phase of the disease September last year. We have definitely had a roller coaster ride as a family since then. Funny how I thought the disease would be the focus of this journal but it really seems to be the the binding constant of an ever changing story about the caregivers rather than the patient. All of us cope in different ways. We have our good days and bad days. Some weeks we work like a well oiled machine and others we are ready to throttle each other or throw up our hands and walk away.
Patterns also change. Since Tom's death we are back to three shifts a week, each. Concern over dad's lack of exercise and unwillingness to leave his beloved recliner is at a new high. Dad doesn't remember to elevate his legs when he is in the recliner and because he is there for prolonged periods of time he gets edema in his calves, ankles and feet. This causes his skin to become tight and itchy especially on his left leg. He will scratch himself to the point of bleeding and sometimes will say he has to go to the restroom in order to privately dig at his leg and not have to listen to anyone telling him to stop. I have begun trimming his nails before each shower to keep him from scratching down to the bone. The first time I did this I joked about his long pinkie nail asking if he was try to grow a "coke scooper". My sisters enjoyed this little joke. Nail trimming is getting more and more important. He hates it but is always grateful once it is done. If he were allowed to keep his claws he would dig at his leg until he hit bone.
In the past four months Dad had gotten weaker and weaker. Each attempt to get him to shower or take his meds was becoming increasingly more difficult. The past three weeks it appeared the writing was on the wall. Dad defies any attempt at hygiene like a five year old trying to get his way. He insists that he showers every day, insulted at the implication that he does not. I tend to try to prove him wrong. Appealing to his sense of reason is quickly becoming pointless.
"You haven't showered in a week!"
"I most certainly have! I shower every day!" (This statement from Dad is never as fluid as it reads. It's stuttered, chopped and sometimes incomplete, but the message is loud and clear.)
"No you do not! You know how I know? I chose that outfit you are wearing last Saturday!"
These exchanges are repeated almost verbatim every week. When Dad realizes he can't talk his way out of it he turns his head, impatiently tapping the arm of his recliner, pondering his next argument. The past two attempts have ended with a grudging, "Okay, I'll do it but when I'm done you're gone."
"That's fine with me," I agree just as stubbornly, "As long as you shower I will be happy to leave once you are out".
He is never happy to hear that his terms are acceptable.
More and more I started finding him so weak on my nights that I would spend the night just to make sure his legs stayed elevated while he slept so he might have enough energy to move the next day. Mike, my constant supporter, will offer to take care of the Allison solo or even come over and spend the night as well. He keeps Dad company while I do laundry or dishes and helps me remind Dad to keep his feet up, even putting pillows under his calves for extra height. With Mike in the spare bedroom I take my place dosing on the couch. Occasionally, DAD wakes up in the middle of the night disoriented. I will hear him stir and then let out a startled "Uuuah!" as he wakes.
"You okay, Dad?" I ask in the dark.
"Paula?" he says sleepily.
"I'm Erin", I remind him gently.
"I gotta let buddy out", he says, struggling to get out of his recliner. I bring the rolling walker over to him for leverage but he rejects it at first. "I don't need that..." then after a few straining attempts to stand he has no choice but to take the offered help. Depending on how tired he is he may or may not use the walker to make his way to the back door to let out the dog and then go use the bathroom. I follow closely behind, acutely aware that even with me there if he begins to fall the odds of me being able to save him are slim.
On the nights that I chose to sleep there I informed Paula of my intentions. We both knew Dad's days with the illusion of independence were running out.
Two weeks ago I arrived for Friday shower night. Dad was more argumentative than usual and I was alarmed how weak he seemed. Nevertheless, I chose to continue to attempt hygiene since he had clearly not showered since the previous week. I put my cell phone in my pocket, ready to call for help if I should need it. Mike stayed with Allison in the kitchen preparing dinner and entertaining Buddy.
Dad began the ritual of preparing removing his socks, commenting on his swollen feet, pulling his pant leg over his knee so he could dig at his shin and then complain about what a mess it is, removing his watches (he wears one on each wrist. I remind him about them saying, "Ya wanna give me 'East Coast' and 'West Coast'?"), removing his outer shirt, pants, and finally hemming and hawing before giving me his t-shirt. As always I let out a playful "Aaaargh!" as he removed this last item because it still makes him laugh. I turned on the water and made sure it was appropriately warm before watching him make his way to the shower and allowing him to "do his thing in privacy".
I left the room and sat on the couch in the living area. Not thirty seconds had passed when I heard a noise like he had dropped his razor or a brush. Suspicious, I ran back into the bathroom and found him braced in the doorway of the toilet area, his legs shaking as he fought to remain standing. The shower door was open and the water still running. He had really tried to make it. I grabbed my phone and sent a one word text to Mike: "HELP".
Mike bolted into the room and positioned himself in front of Dad to keep him from falling forward while I remained behind him with trying to keep him from leaning too far to either side as we made our way back to the bed. His legs faultered beneath him a couple times. No way I could have helped him back to the bed by myself. Dad collapsed onto the bed and we positioned his feet up on the foam bed wedge. Next we helped him dress in clean scrubs. Shower would have to wait for another night.
Dad laid still while I searched for something on his bedroom TV to entertain him. I sent a text to Paula explaining what had happened. Mike brought dinner into the bedroom and we all camped out watching a boring movie that none of us were interested in.
"What are we doing in here", Dad asked from time to time.
"You almost fell", we explained. "We are staying in here while we keep your legs elevated".
Dad would sigh and roll his eyes. "We don't need to stay in here. Lets go out to the living room", he protested.
"No, this is good, Dad", I insisted. "Your legs need to stay up for now". It was frustrating for all of us.
Paula called after a while. "What happened?" she asked.
"We tried to get Dad to shower but he almost fell while he was in the bathroom", I explained and then detailed for her the events leading up to our positioning on the bed.
Paula, being the medical professional of my siblings, speculated what might have caused Dad's sudden weakness. She felt it could be heart failure related to the DVT that was causing the swelling in his legs and that we should keep both his legs and chest elevated in the "recliner" position. This new development could put him at risk for an embolism. Keeping him in the correct position should be easy enough as long as someone stayed with him. We agreed I would need to spend the night. Paula was grateful I was staying.
We positioned Dad on the recliner and, fortunately for me, Dad did not argue that he needed to use his walker during the night. He made two trips to the bathroom and to let Buddy out. If I had not been there to remind him he would have returned to the sitting position without reclining. I wondered how many nights I would have to spend like this.
Morning came and Dad was resting peacefully, still reclined with his legs elevated. I decided it was time to go. Bradley would be here soon and it didn't look like Dad was going anywhere. I softly told him, "Dad, I'm gonna go. You keep your feet up, okay?" He smiled and nodded. I gave him a kiss on the forehead and started to walk away.
"Hey...come here." he said weakly with a smile.
"What?" I asked and walked back. Dad held out his arms for a hug. I hugged him and told him I would be back later. I guess he was glad I stayed.
To be continued...
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