(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 anti-psychotic 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…