Becoming an Orphan

Visited today for the first time in two weeks.  Heavy deterioration.  He's dissociated from his hands and feet.  He tried to give me one of his hands to take with me (he wanted to lend me a hand, yes, good line, et cetera, et cetera...)  Backstory: E had apparently treated his hands with some kind of lotion.  He enjoyed the sensation and enjoyed that they were soft afterward, and this was how it came to him to share the experience - "Here, would you like one?  Take it!" 

Later, he was lying on his bed with a cat to his right, and he said, "There's a baby here (cat name: Babe) and there are two feet here, so everything's where it's supposed to be."  Then he got alarmed about the television.  It was showing a sports news program on SNY and the stream of images was too much for him.  He told me there was something wrong with the set - "it's all clouds coming up" - and he didn't know what he'd done to mess it up.  Then he got upset because I was sitting on the bed next to him and he could hear me in his right ear, but he could see me only in the mirror, and the spatial situation didn't make sense to him and he wanted to know where I was.

We're finally getting into classic Alzheimer's symptoms.  A couple of weeks ago he looked at a childhood picture of me and asked who the fat guy was.  Last week, on the phone, I told him I was down in Washington, where he'd been when he was in the Coast Guard, and he said, "I was in the Coast Guard?  I don't remember that at all."  I talk to him by phone less often than I used to - at least half the time, I can't get through to him, because he insists on carrying the cordless phone around with him and punching the buttons obsessively.  The phone is off hook and the batteries die and all I get is a busy signal.  Today when he started punching at the phone, I gave him a spare receiver that wasn't connected to anything.  One of the attendants had found it in a closet and given it to him to try to distract him.  It's not very satisfying for him because it doesn't make any sound.  Maybe there's some sort of play telephone I can give him that'll generate beeps or a dial tone or something.

I had lunch with him as usual, and a half hour later he was anxious about whether I was hungry - couldn't remember the meal.

It occurred to me the other day that I don't really have parents anymore.  This is a new thought, though I have to admit I'm surprised I didn't get to it sooner.  My mother died in 2003 and that was clear cut. My father's been disappearing for a while, but even recently, there was still a person there who retained some history and you could relate to him.  For example, he'd ask me about work and of course I'd have to prompt him and help him along, but at least at the end of the process I could get across something more or less factual.  It's only in the past two or three weeks that I've discovered I can't do anything remotely like that.  He'll still ask how my work is going, but he also has to ask what my work is and it's clear that the explanations aren't getting across.  Stray bits of memory and identity turn up - today he almost remembered me as an infant (that is, he remembered being able to hold me in one hand) but couldn't connect that to the full experience of being a father, and in the next couple of sentences talked about how he'd adopted me and how we'd met during the war and how I'd been a friend of his for a long time - since our mother was alive.

There's nothing extraordinary about any of this (note to new readers: as I try to say often, there's nothing extraordinary at all about anything I'm describing on this blog).  And I don't mean to sound self-pitying about it because I don't feel that way.  It's just a new set of facts to deal with.  But it's a little jarring to realize that until very recently, even with all the damage he's taken, there was still a father-son relationship in play and I still wanted to talk to him about work and life and current events and things like that.  The idea that I can't do that at all is new and I'm just beginning to get my mind around it.  He's suddenly no longer a cohesive person I can identify as my father.  I still matter to him and I have obligations to him (in fact there's an extraordinary amount of work to be done) but that's not the same as having a human relationship with all or most of its features present.

We were a very small family.  I was the only child and there were blood feuds and estrangements with all of the other relatives, so my mother and father and I were nuclear in the purest sense.  I guess that's over.  Fine - lot of orphans around, so what's one more?  The only strangeness here is that one parent is dead but I still have to visit him and work with him and manage his Medicaid paperwork and pay his bills.  All of which is a sort of Alzheimer's cliche - people in brochures call it "the long goodbye" and such - but living the cliche is its own kind of weird. 

A related thought, about the blood feuds - you want to go back in time, knowing what you know now, and shake those people, not just the relatives, my parents too, and tell them to get over it fast because what's coming is truly awful - the cancer and the Alzheimer's and lots else because all of them had really bad experiences at the end.  I'll expand on this at some point.

Dwelling on it is pointless of course, but the idea that in spite of still having to care for him I'm an orphan is novel, at least to me, and it wanted to be shared.

I heard today from Assisted Living Facility 2.  They don't accept Medicaid, and that may rule them out, but I still have to do the math - their run rate is lower, and it's conceivable that that he could live to the end there on private pay.  I'm not sure that I want to make that actuarial bet, though.  There's one more ALF still pending, and I'll make one more attempt to contact Nursing Home 4 before I give up on them.  After that I'll be at the short list, and I'll sit down with D, the Maryland care manager, and start sorting through the options and the costs.  Philosophy is nice but the workload is where I left it, and the task for July is to push through it and start an application.  More updates soon. 

Comments

[julie]

Hi Alan, hope you are making progress on your search for a home. I keep hoping the decision will be forced on me rather than have to make it myself. It's the most difficult time I have ever had to live through and I understand completely the idea of being an orphan. I have become a widow with my partner still physically present but long gone mentally. My brother tells me I'm following a different path of enlightenment than most people but I have a hard time seeing
any light in this journey.
Carry on like you do
Julie

[Alan G. Ampolsk]

I guess in my case, the decision is partly mine and partly forced. Or maybe it's just being forced very slowly. But I'm definitely running out of options. That's not necessarily a bad thing...

My wife recommended Chris Buckley's "Losing Mum and Pup" - I opened it the other day and found a set of reflections on becoming an orphan. More proof that we all wind up this way.

For what it's worth - not necessarily very much - I agree with your brother... with the big caveat that I don't think of enlightenment as a particularly happy experience. An East Coast perspective, I suppose.

Hang in!