Book Excerpt

“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.

It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."

Book Excerpt

“Does he still remember you?“ This is what people asked, in a consolatory yet avidly curious way, whenever I told them about Dad’s Alzheimer’s.
“Well, he doesn’t always remember my name - at least he doesn’t say it very often - but he always seems to know that he knows me.“ I always responded. For many, this one thing, this inevitable occurrence of forgetting, represented the disease. It was the poster moment, if you will, for the horror of Alzheimer’s. The single thing most people both understood and feared.
Interestingly, to me it was the least important aspect of the disease. I already knew what it was like not to be known by Dad, since he wasn’t really present through much of my life. But even when Dad didn’t know me, I’d still be a part of him. What was harder was giving up all hope of ever having the father I really needed and wanted.

It continued to surprise me how much I actually enjoyed spending time with Dad, although I realized anew that he was a stranger to me, and I a stranger to him. There was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation most likely familiar to new mothers. I felt it come instinctively to me, how to deal with him, how to speak to him, which surprised me. Being his caretaker proved just as boring and tedious and sometimes horrifying as I expected, but I found hidden benefits as well. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality."

Book Excerpt

The minute I moved in with Dad, I began living in a sociological and behavioral study. When I could think dispassionately as a caregiver, the whole experience was fascinating. When I grew too emotionally involved, it was devastating. After years of living with Dad as a child, I was painfully familiar with his behaviors, mannerisms, and attitudes. When I became his caregiver, I saw just how much things had changed. There were remnants of my father, a skeleton of beliefs and behavior. But overlaying that, like a skin, was an interesting new layer of mannerisms and ways of behaving. My father was a whole new man; together we would learn new things, develop a new relationship and have adventures I never could have anticipated.

“This shopping cart must be Communist, it always pulls to the left!” Dad said, with a sly grin, in the middle of shopping at Safeway.
“Yeah, you’re right. Maybe it’s a democratic cart,“ I said, bagging up some fruit. I heard this every single time we went shopping, often several times in the same trip. There were multiple carts with bad wheels at the store and Dad always said his line like it was the first time he’d thought of it and always with the same grin. I knew it was repetitive, and not particularly clever, but Dad had become a jokester, something once deeply buried within him, and I was all for encouraging it.
It was remarkable what stayed and what went with this illness. An incredibly modest man became someone who scratched himself and urinated unashamedly in public. A shy, reserved man began flirting with women young and old, suggesting they go out with him. The most mundane memories had become the piers of his mind, while the vital information sloshed uneasily between them, like water. Perhaps it only seemed that way because he talked constantly about the unimportant things in a bid to remember them, to hold on to them. The fact that he was an engineer deeply defined him. Several times a day, he regaled me with stories about flying in an empty jet with Boeing test pilots, tweaking the flight systems he designed, yet he rarely spoke about my mother. Was it because he didn’t remember her? Or because he did and wanted to keep the memory close to himself?

Book Excerpt

"Can there be any task more difficult for a child to face than having to parent your parent? Stepping in to care for a parent with Alzheimer’s, who will henceforth need every decision made for them? Weathering the inevitable and understandable anger and resentment, often focused on their caregiver? All while dealing with the fact that your parent will ultimately forget all about their lives and their loved ones. I had made the choice to take up that burden. What made it even more difficult for me was my relationship with my Father. He had been physically absent for much of my childhood and emotionally distant when with the family. Throughout my life, I felt that he didn’t know how to build a relationship with me. Nor did he seem to want to know who I was. At a crucial moment in my life, he had neglected my physical and emotional needs, leaving me alone dealing with a near-death illness. When I recovered, he never acknowledged I had an illness, never recognized that said illness might be making my life extremely difficult to lead, and withheld the financial or physical help I might have needed.
I was sacrificing precious time and energy caring for a man who not only hadn’t acknowledged me in the past, but due to the nature of his illness, was not able to recognize what I was doing for him in the present. If I wasn’t careful, I could completely disappear; a forgotten shadow able to feel nothing but resentment, bitterness, and anger. I was fortunate to have a therapist who repeatedly pulled me back into the present, reminding me why I was doing what I was doing. I knew that I didn’t want to miss anything during this long goodbye. I wanted a chance to connect with Dad before it was too late. She helped me work through old anger and resentment while living with Dad, and showed me that while he would never be able to go back and change the past, the exchange and the connections we were making now would give me rewards to carry into the future."

Personal Post

It's a very strange thing, seeing my father get more and more frail. The man came down with fewer than three colds in the entire time I was growing up; he never got sick, or at least never admitted it if he did. He was one of the healthiest people I knew, which made it a problem as he fell further and further into dementia. We knew that while his brain was unhealthy, in body he was like an Olympic athlete, and he could live forever. But over the last year or two, I've been taking him to the doctor more and more, usually for some sort of infection that started off small.

I got a call yesterday from a visiting nurse service asking for permission to go visit him to treat a boil on his leg; something his caregiver had told me about and for which Dad had taken a course of antibiotics. Apparently, the boil hasn't healed completely and the doctor wanted a nurse to assess it. I suppose a boil isn't that serious, but the fact that my father is growing more and more frail, falling victim to one infection after another, makes me thoughtful. At times over the last seven years, it seemed like he would live forever, but now I'm wondering sadly if his time is a lot shorter than I thought.

Hospice

It's so great to see new followers, and also to get notifications of other blogs like mine! Keep up the good fight, everyone, and thanks for continuing to read.

I had another visit with my hospice patient. It was earlier in the day and he seemed a little more energetic. This time the wife was leaving us to run errands; a family member would stop by in two hours to take over. She showed me where the emergency numbers were and the DNR orders. All hospice patients have Do Not Recussitate orders and I'm required to know where they are in case an ambulance needs to be called. The nature of hospice is Death with Dignity; no heroic measures are usually taken.

We decided to play chess again, and he roundly beat me the first game. The second game went a little longer, and I actually made a few moves on my own that he approved of! In the end, we called it a draw as he was chasing me around the board and was feeling tired. He did say, kindly, that I had the potential to be a good player if I really put my mind to it and practiced. I thought that was so nice and it encouraged me to keep playing! We discussed briefly the theory that women make worse chess players than men because they aren't as aggressive; but he was of the opinion that women ended up winning because they were safer and husbanded their resources better. Either way, I hope to practice on my own so I can give him a decent game without assistance!