Personal Post

I am on call for my Dad 24-7. Any time there is a problem, I am the first person they call. When he got angry and threw a punch at a nurse six months ago, I got the call as the police were bundling him into the ambulance and taking him to the hospital. Whenever he's not feeling well or there's a problem at the facility, I hear about it. This is all just the way it is, I'm fine with it; in fact I signed up for it. Occasionally I actually think about it, though, and it strikes me as interesting. It's too bad I couldn't be on call for something interesting like a rock star or something! I'm also the one who has to deal with the personnel at his facility and sometimes they make me very irritated. I know that they have other patients to deal with, but its not like there are more than 20 or 25. I know that they don't sit around all day dealing with only my Dad's and my problems. But I have to admit that they seem to let stuff slide that they shouldn't, and they conveniently seem to forget simple things I've asked them to do, events they should notify me about. For the kind of money we're paying, it seems like these little glitches shouldn't happen. However, I am also grateful for the care they do give him, and the fact that we're able to keep him in such a good place. I guess no situation will ever be perfect, short of him being well and taking care of himself; something I wish every day was the reality.

Still cleaning...

It was September, month six, I think. I felt like I’d been in the trenches so long, I couldn’t keep track of the dates any more. Who would have thought Dad lived in the Tardis of houses. It didn’t look so bad from the outside, but just when we thought we had cleared it out, there was still more to be done. Perhaps it kept filling itself up when we weren’t there, sneaking things out of the dumpster at night and putting them back inside. It was beautiful out, sunny and warm as only a Seattle Indian summer can be. The house was set behind some really tall trees, so had always been somewhat dark and dank, but at that moment, the sunlight was shooting through the windows, shining down into the driveway where the GotJunk truck was waiting, its tailgate open.

Personal post

I have a friend who I like a great deal, although I don't know as much about her as I'd like to. Her mother is in the same state as my Dad, and, soft-hearted woman that she is, she agonizes about it every day. When her mother first started showing signs of the disease, she did the extraordinarily generous thing and took her mother into her own home, caring for her and paying her medical bills, with help only from her husband. The time came when the situation was no longer working, and she was forced to move her mother to another state where she had family, and place her into a facility. She feels guilty every day for doing this; feeling that she has failed her mother, even though she has gone above and beyond what most people are willing to do. I want care-givers to rise up against this guilt! They and their loved one were placed in a no-win situation, and there should be no fault or shame. I want them to see that whatever they have been able to do is the absolute best they could do at that time. And that they, and especially my friend, are heroes every hour of their lives.

Personal Post

I took Dad back to the doctor for a follow up visit. The changes in his medication seem to have had a beneficial effect and he's more responsive, his face is more mobile. The confusion, however, is the same, and will only get worse. The doctor is considering possibly changing his diagnosis of Alzheimer's to some sort of Parkinson's related dementia, even potentially Lewey-Body. Dementia is dementia, of course, and a change in diagnosis is largely important only on paper. The results are the same. There are a few drugs that will help in one type of dementia, while hindering another. With a Parkinson's related dementia, being aware of environmental triggers is apparently even more important than with Alzheimer's. The least little uncomfortable thing can spark aggressive or angry behavior. The reality of the sufferer being unable to express their discomfort or preferences is what I find the most sad. I've often expressed the opinion that true Hell isn't great pain or torture, its acute discomfort from one or more sources. Imagine nagging discomforts and how hard it would be to not be able to tell anyone about it. It's just one more aspect of what is happening to him that my mind ponders as I see my Dad.

Every little thing-cont.

My mind jumped to the question of whether Dad was enjoying the food at his home, and I remembered different foods he had really liked.
But then I started to wonder whether he even noticed anymore what he ate, or whether he craved certain foods he’d never get again because he couldn’t ask for them. I wondered if he missed certain flavors or textures. And I jumped again to how very much I love food, and the great pleasure and comfort I take in certain foods- indeed in all small similar pleasures. It hit me that to have AD would remove that pleasure and comfort. I am able to live, to make it through small hardships and problems partly due to my love of the small things, the little pleasures of life. And to the continuing prospect of ice cream at the end of a hard day. How horrible to lose that to Alzheimer’s as well. That, I realized, brought home to me the true horror of the disease.

Every little thing- a new essay

I was sitting at my desk at work, idly gazing at my computer, and contemplating the large list of tasks I needed to complete, and phone calls needing to be made. As so often happens, my mind began to make connections and my train of thought left the station, pausing at disparate stops along its journey. I started thinking about the new course of supplements I was on, then about who I knew who might benefit from something similar. My mind jumped to Dad, who I had taken to the doctor that morning and then I theorized that supplements probably wouldn't have much of an effect of Alzheimer's anyway. I reasoned that Dad was probably eating fairly balanced meals at least, but then I wondered how balanced institutional food could be, even at a good place like Brighton.

Vision IV

“Dad, what’s my name?” I asked gently, trying to test how far in it he was. He studied me for a moment and then smiled.
“You’re Joy.” He said, with a look that said, see? I’m not crazy. I smiled back, but I felt sad. I was happy that he remembered my mother and was talking about her, a rare occurrence. It was terrible that he had this gruesome and untrue picture in his mind of how she died. It was one of the symptoms of the disease that he had often suffered from, vivid visions or dreams of events that didn’t happen, without exception violent and disturbing. Why the visions were always bad ones, I don’t know. I learned to take them as they came, and tried to help my Dad through them.

Visions III

“She was having (Big Sister), who was just too big. The blood kept coming and they just couldn’t stop it. Big Sister was just too big. There was so much blood, she died,” he said unhappily. Since my sister was tall, I assumed he was integrating that memory into his vision, that of my mother giving birth to a full adult.
“I’m sorry that she died,” I said. “What was her name?”
“Pat, her name was Pat. But you have to understand how much blood there was, and they just couldn’t stop it. It only happened a little while ago,” he said mournfully, experiencing in his mind as reality the terrible events he was describing. I mourned with him, deciding not to try to talk him out of what he believed so strongly.

Vision II

Which is not to say my parents didn’t love each other, since I sincerely believed that they did. I think even then, I questioned what their version of love was, thinking that there must be something different, more open and giving. My father very rarely spoke of my mother now, and I wasn’t sure why. I went to see him one day and take him to lunch. As we sat at the restaurant, waiting for our food, he began to talk.
“You know my wife, she died a little while ago,” he said.
“Oh, I’m sorry, that’s terrible,” I responded, not sure where he was going.
“She died, just a little while ago. And it was so horrible. She died giving birth, there was too much blood; they just couldn’t stop the blood,” he became more agitated, obviously horrified in his mind, trying to convey the scene to me.

Parents

My parents were married for twenty- seven years, my father having given my mother her one ring when she was nineteen, stating clearly that it was he who was marrying her. Both essentially private people, over time they came to rely on each other for all social and intellectual interaction. They had hardly any mutual friends that they spent time with. My mother had friends from graduate school and her library that she saw fairly regularly, but as far as we could tell, my Dad didn’t really call anyone a friend. They were very close, but it was hard to judge as I never saw them exchange more than a chaste kiss and I never actually saw them sit down and have long discussions. Perhaps they saved that for their bedroom.
Looking back now, I’m not even sure they shared many common interests. My father loved to sail; my mother tolerated it for his sake. My father enjoyed being outside and active; my mother preferred to sit on the couch and read, coffee cup in hand. While I’m not sure how much deeply personal stuff my father shared with my mother, he seemed to know very little accurate information about her. Which was so odd to me in the context of my own relationship. I guess the young always think they know better even as they constantly reinvent the wheel.