Sunday, June 26, 2011

Summer Time.

I went to a barbecue this weekend given by the owner of the house where Dad lives. The family owns two houses, side by side in a relatively nice neighborhood, and every summer they try to give a barbecue for the residents and their families. A lot of the time, people who used to have family members at the houses stop by too; the owner prides himself on the fact that families are welcomed and involved in his houses.

I took a friend of mine, who had last seen Dad about six years ago when I still lived with him and would bring him by the office where I worked to visit with my friends. She was also involved in cleaning out his house with me. She said later that while she had instantly recognized my Dad, he looked and acted a lot differently from the last time she had seen him. If I remembered correctly, he had flirted with her on that occasion; it was pretty certain that there would be no flirting today. He is, of course, much less animated and talkative, and regards the world now with a slightly suspicious look, as if he's not sure what's coming next but he's pretty sure he won't like it.

Like the last time I visited, I tried to engage him as much as I could, and again I noticed that he would stare intently at my face. I can only guess that somewhere in his brain is the correct identification trigger that indicates I am his daughter, but I don't think it's really accessible anymore. He doesn't know who I am anymore, although I do think that he still recognized a relationship to me-I have a feeling that I now fall in the category of people he knows that make him do things he doesn't really want to do.

In any case, he seemed to be in a decent mood, even managing to find and identify his fork and use it to lift bites of food to his mouth. The last time I saw him eat a few weeks ago, he was being fed, so it was heartening to see that at times he could still remember what a fork and food meant. My friend and I sat next to him, eating our plates of salad and steak, just trying to be there for him. Later, I took her on a tour of the houses and she gave her approval. She said it seemed like all of the staff and the owner treated their residents with a great deal of respect and compassion, and that it seemed like the houses were clean and comfortable. Although I do have great faith in Dad's caregivers, to have the positive opinion and take on the situation of someone I trust was deeply comforting.

All in all, it was a good afternoon. We went out and said good bye to Dad as the caregivers were wheeling the residents back into their houses and the family members were saying their goodbyes. I gave Dad a hug and told him I loved him, and then left him to the people who have also become his family.

Wednesday, June 15, 2011

The Difference.

I was just out of town at my nephew-in-law's graduation in California. We had a great visit, spending time with my fiance's family and enjoying some good sun and good food. In the course of the visit, I found myself spending time with an elderly member of the family; my nephew's ninety-year-old grandmother.

Whenever I meet an older person now, I can't help but compare them to my father. My ninety-four year-old hospice patient is as sharp as a tack. My patient may be old and infirm of body, but has the mind of a forty-year old, understanding current events and able to converse with me about what's going on in the world as well as what happened seventy years ago. It is obvious that the people around my patient still enjoy their company and presence. It was much the same situation with the grandmother.

She moved slowly, suffering from arthritis in her knees and feet, and with the expected aches and pains of a ninety-year-old. She was also quite hard of hearing, but seemed able to manage while in company with a hearing aide. But she was doing just fine mentally, keeping up with all of the conversations she could hear, and aware of what was going on in the world around her. She had a sense of humor and came alive when around the family, laughing and talking. My nephew and his mother obviously appreciated her company and were glad she was still present with them. My father is at least twenty years younger than she is, but he sits at home quietly, saying little and understanding even less, and shuffling slowly when on a walk.

It makes me sad, and it also makes me think angrily that early onset dementia is a horror, one that we still barely understand. Why does Alzheimer's and dementia and LewyBody take one individual and not another, and why sometimes so heart-breakingly early, before a life is even close to being finished. My father has been suffering from the gradual loss of his mind for at least fifteen years now, while these two lovely almost-centenarians continue to maintain their sharp focus. I can only hope that researchers get going quickly on solving these terrible conditions, so that more people can enjoy their loved ones for a much longer time, and don't lose them at such young ages.

Wednesday, June 8, 2011


We had a meeting with Dad's financial planner this week. We first hired her five years ago when we were just starting to get him and his affairs in order. She was with us through moving all of his money from multiple and confusing accounts; through the move from the house to Assisted Living; and through all the family troubles. She knows my family and how we work pretty well. I meet with her every six months or so to check in on how the investments are going and for her to find out how Dad is. It had actually been more like nine months since I last saw her, and in that time a lot has changed, like moving and the engagement, and Dad's move.

We were getting together so she could meet my fiance, and so she could explain again to both of us where the money was, how things worked, and how it was all doing. When he left the room at one point, she said warmly how much she liked him, which, although not necessary, I appreciated hearing. Since she knows my family so well, it felt a little like an older member of my family was giving her approval. But then we turned to Dad's business.

We took a look at Dad's main retirement account and how everything was organized. She explained that the money was invested according to a fairly high risk strategy-investments are often made on a sliding scale of risk and what people are willing to lose. A younger person would probably invest more aggressively, while a retired person would be more conservative and safe. We had deemed it acceptable, however, because of certain safeguards, to invest aggressively, because with dementia, the sufferer can live for a very long time. Since Dad had always been healthy as a horse, we figured we had a good long time to win and lose. She turned to me and said that now was the time to think about changing that strategy, and asked me how Dad was. And I realized that the answer to that question had changed dramatically in a year.

If she had asked me a year ago, I would have said that Dad was still tough as nails and to keep it high risk. But he's become so frail, suffering from one little infection and illness after another, now I'm not so sure. Gravely, I explained this to her and we looked at each other for a moment, both a little shocked. I told her that Dad was so frail that I honestly couldn't say any more, couldn't call how long it would be before the question of risk was moot. And though I had known this before, of course, it just brought it home to me even more strongly. Dad may not last another year. He may be just too fragile. And though I have had a long time to become accustomed to this, it's still difficult.

Together we decided it was time to reduce the risk and change the investment. I know she was just as sad as I was at the necessity and at the news.

Wednesday, June 1, 2011


I have commented before on the most popular question people ask me about my father's dementia. "Does he still recognize you?" is the standard query that everybody has; the unimaginable possibility that everyone seems to think about and fear. It's as if the symptoms of dementia have been boiled down and condensed into one easy-to-understand, if hard-to-experience event. Forget wandering and hoarding, blanking on words and memories, taking the car keys away; this is the only symptom of note-the most difficult.

Funnily enough, it isn't the hardest for me. I don't honestly know whether my dad recognizes me anymore. I haven't heard him say my name in months, maybe a year or more. I think he knows there's some connection between us, but whether he knows precisely what that is, what role I play in his life, I have no clue. When we took him for a drive we kept studying my face intently, I don't know why. I kept taking off my sunglasses and smiling at him in case he was trying to see and place my face in what remains of his mind. When I smiled at him, he didn't really smile back or respond in any way, but I noticed he kept looking at me. I think perhaps, he doesn't know me anymore, and I've had time to come to grips with that.

No, what really bothers me about the dementia isn't my father forgetting who I am. It's the loss of dignity for what was a proud, reserved, principled man. It's seeing that he's wearing a diaper full time now, and knowing that someone must always help him in the bathroom; and knowing how very much he would hate that. It's seeing doctors push and pull him around and examine him without his having any idea of what's going on, or why he must endure this. It's knowing that years ago, he could have fixed every single element in the Corvair engine we showed him, and could have explained exactly why it worked as he was doing it. It's watching my once strong, athletic father shuffle carefully along with help from his caregiver.

These are the things that really bother me. So he doesn't remember me any more. Yes, that's very, very hard and very sad. It's the complete loss of dignity, though, that really bothers me, and which is, to me, the ultimate and most difficult, symptom of dementia.