So It's a Memory Disorder After All. Damn.

Within five minutes of showing up for yesterday's visit I found out why my father was resistant to seeing the head and neck surgeon.  It seems he has no memory of the surgery at all.  As far as he's concerned, he's had a bandage on his head for years.  The aides give him a new one every day.  He thinks it's stylish and he looks good in it.  Why change a system that seems to be working?  He was convinced that visiting the doctor meant an entirely new round of treatments and he couldn't understand why he needed any.  It could only come out badly.

Here's a lesson.  I've been convinced -- I've even been telling friends and acquaintances -- that the popular conception of Alzheimer's is wrong.  Everybody talks about it as though it's a memory disorder when what it really affects is cognition -- the ability to manage thoughts and processes.  For example, you look at the daylight outside but can't take that fact -- that visual impression -- and extend it into a fully developed thought, like "it's Wednesday afternoon, July 2, 2008."  Forming the thought -- locating yourself in the calendar -- is a hugely complex task with many steps and if some of the steps are disrupted, you can't get from point A to point B -- from the sense impression of daylight to the extreme abstraction of the calendar.  What seems to be memory loss -- the inability to recognize people or remember events -- is really a failure of abstract processing.  You can't put the parts of a face together into a person or put a few stray memories together into the story of your life.

Well, maybe.  But suddenly I'm forced to say that there's also a basic thing called memory and that fails, too.  How else to explain the fact that he had a huge life experience -- the surgery -- seven weeks ago, and it's now gone without a trace.  It's not just that he has a sense impression (say, recalling that he sat in a waiting room in a gown) and he can't make anything more of it.  It's that the sense impression itself isn't there.  Not just a processing failure -- there's nothing to process.

I guess that in a lot of cases, memory is the first noticeable capacity to go.  In our case it wasn't.  There were years of progressive cognitive failure -- first anomia, then aphasia, then difficulties with reasoning (how to use consumer credit) and processes (how to write checks), then the sleep disruptions and disorientation in time and behavioral issues and problems in visual processing and basic thought.  But until this year, memory stayed relatively intact.  He lost distant personal history through the course of the winter, and in the spring he began conflating people and events, and now it's summer and the close-in events have disappeared.

It seems predictable when you think about it.  Alzheimer's affects the whole cortex ("diffuse cortical illness" is the technical term, I think).  Given that everything is involved, there's no way to predict what capacities will go at any given time and in what order.  To us it was a cognitive problem for the longest time.  But now we're coming out where everybody else does.

A little later on in the evening he launched into a long consideration of his living conditions.  He is, he said, thinking for the first time of moving to New York.  Keep in mind that he lives in New York.  But of course I didn't try to contradict him... wanted to see what would emerge.  He thinks, he continued, that he's better off staying where he is, in Atlantic Beach (a small community in Long Island where he spent childhood summers, and where he later bought a house so I could, too.  We left there in 1975).  What's good about Atlantic Beach, he said, is that all his services and doctors are close by, and in New York that wouldn't be the case.  But he's wondering about it because winter is coming on -- what will Atlantic Beach be like in winter?  This will be only the second winter that he's been there.  But he worries about leaving, because this is the home that "our mother" (a combination of his mother and my mother) lived in, and it's the home she died in.  And it's the home where he grew up...

But then, there's another consideration, he said.  I don't live in Atlantic Beach.  Is it fair for him to expect me to keep traveling to Atlantic Beach to see him?  After all, I need to have my own life.  So maybe it'd be better if he lived closer to me...

I went with that since it's been on my mind -- told him that if he wanted to, he could always consider moving to Washington, where we'd be closer and he could see us more.  And he could live less expensively (he'd been concerned about the cost of New York).  And as for our mother, well, we have a lot of history in this apartment, but on the other hand, when she was alive, we were there to take care of her, so she never had to live on her own the way he does.  Maybe if she had, she would have decided to live somewhere else...

But the important thing, I told him, was just to think about these things and keep in mind at the same time that we don't have to decide anything at any particular point.  We can be flexible and always make it the main priority to do what's right for him...

So there we are.  Short-term memory is totally wiped out.  His sense of where he lives and under what circumstances is completely incoherent.  But the emotional core is still there and so is the ethical capacity (he wants to do what's right for me).

Will try to work with those until they go, too.

Comments

[Julie]

Hi Alan,
I'm thinking about your father's comments regarding his moving
to New York, ect. and from different events that have happened to
us lately, I'm wondering if he is trying to say he is ready to
make the move to be closer to you and to be where someone can care for him more efficiently. I have recently had to be more
alert to listen to what the message is behind the words and not so much the words themselves, so am just wondering. I'm sorry to
hear he seems to be losing ground.
Hang in

[Shira]

I am the sister of the DOROT volunteer who has visited your father every week for the past year. She recently did a search on your fathter to try to learn more about his life, and discovered this blog. You can imagine that it was distressing and disarming for multiple reasons. I, personally, am saddened that, in the great time you take to catalog your and your father's sad journey, you have in no way acknowledged her committment to and interest in him over the past year. She has shown an interest in spending time with him and trying to offer him a weekly diversion, and has asked nothing in return. I feel that it would offer your readers (if you have any) a positive outlook if you had at all taken time to reference my sister's small contribution to your father's life. DOROT is an amazing organization and is owed more respect than you have given it.

[Alan G. Ampolsk]

Julie --
I think you're right -- both about the need to decode what he's saying, and that he does seem to be willing to consider a move. I'm not sure if he's all the way there -- and I want to be careful not to force the issue. While it'd be convenient in many ways, that's only part of the picture. He gets something out of stability, too.

That said, the pace of thing suggests I'll have to consider this soon -- maybe very soon.

Thanks, and I'll try to keep hanging. And will keep you posted.

[Alan G. Ampolsk]

Shira --
You make a very important point. DOROT has been a big thing in my father's life for longer than you realize. He and my mother were DOROT volunteers themselves up to about a decade ago. That's how I know about the organization and it's why I reached out to them. Your sister's visits have in fact meant a lot to my father and you're right that I'm overdue to acknowledge both her and DOROT. In fact I've been meaning to add a DOROT link to the "support crew" list. As I'm sure you can imagine, managing this process is hugely time-consuming and I'm chronically behind -- not only in regard to DOROT, but on a number of things that have a direct bearing on my father's physical and financial health. Nevertheless, I hope you and your sister will accept a sincere apology and look for a more prominent acknolwedement soon.

While I understand that you're frustrated, let me suggest a different way you might have expressed the same idea: "I can tell from reading your blog that you have a great deal to contend with, from managing logistics to coping with your own grief to trying to maintain balance and keep your life going. Nevertheless I'm sorry that you haven't yet acknowledged the work done by my sister and by DOROT as an organization. I know your many readers would value it if you told them about DOROT and the difference it makes in your father's life. I hope you'll be able to give her and DOROT full credit when your demanding schedule permits."

Now, if you put it that way, you'd have made all the same points without giving way to hostility or insult ("readers... if you have any...") You'd be acknowleding a teaching that you and I have in common -- namely, that we're both created in the image of G-d. Which in practial terms means it's usually a good idea to give the other guy the benefit of the doubt.

Again, thanks to your sister for her visits and thanks to you for writing.