First Visit: Not Bad

Just got back from the first visit.  It went well.

On the way there, thoughts, speculations, questions - is it going to be a betrayal?  An entombment?  The answer to his problems?  The answer to mine?  Some of the above?  All of the above?

Once I sat down with him, quick realization - he's in the right place.  In fact it's remarkable how right it seems, and how his life in the New York apartment looks, by contrast, like a horrifying fiction that went on way too long.  By that I mean, you see him in the new setting and realize at a gut level that he's a profoundly demented person.  When he's surrounded by other profoundly demented people that's absolutely clear - he seems to fit right in.  When he lived on his own - when he was surrounded by familiar things - then however bad he was, and however well you understood that intellectually, you'd nevertheless see him through the lens of his past life.  Even when the dementia was really bad, you could also see the person he used to be and the home he used to live in and it softened the impression somehow.  Not anymore.  First thought - wow, he's really far gone.  Immediate second thought - it's good that he has all these nurses and specialists around because that's exactly what he needs.

Impressions... I met him in the common area on the dementia unit.  He was dramatically cleaner and better kept than he had been - he'd had a good shave, his clothes were crisp, the house dermatologist had treated his scalp with some kind of lotion and the lesions were much smaller.  E wasn't able to keep up with any of that.  She meant well but it was getting beyond her.

It took him a while to recognize me - he had to work at it.  I'm not sure he ever placed me fully but we got most of the way there.  The context threw him (I'm a different person because I'm in a different place) but pretty soon he'd gotten it established that I was the boss and all the people there worked for me and I was Alan and I had a relationship with Alan and I had a young son called Alan and a couple of daughters, too.  In other words, he connected me to all the associations he'd had for me in New York.

He was very talkative and energized.  Mainly interested in looking for work.  He had a copy of the Washington Post in front of him and was interested in seeing if he could do something for them related to sports (a reference to his magazine editing days?  Probably).  He was able to make out the word Washington on the masthead and determine that this was an out-of-town newspaper and that it shows he's not in New York.  That would be OK except that it feeds his obsession with getting back to New York.  He pointed to an exit door and told me I ought to use it because that's the way to get to Broadway (exit = Broadway).  Wanted to know when we were going back to New York (apparently, and not surprisingly, he asks about this all the time).  I told him it would be a little while because we were fixing some things up there. 

As always there were moments when he seemed lucid (though overall his speech was a little worse) but then he'd launch into a conversation with the gentleman sitting across from him and ask him if he wanted to come and work with us.  The gentleman sitting across from him blinked and looked slightly distressed and didn't say anything because he doesn't say anything - he no longer speaks.  Another gentleman came by and patted my father on the shoulder and said, "I'll be right back."  My father seemed pleased about this but it was the only conversation between them.  All this while I was watching him from two perspectives at once - closely focused on his face and his eyes, and widely focused on the periphery, taking in all the other residents.  I kept matching his weird manic energy with the whole array of late-stage patients and thinking to myself - as I said - that it seems right that he's here.

The visit was loosely supervised by P, the person in charge of behavioral assessment.  I'm sure she wanted to see how my father reacted and how I reacted and what the interaction was like between us.  Afterward she told me that she thought it had gone well and I could now feel free to visit at any time.  She mentioned that his rages have died down - he still shows flashes of anger but nothing like it was during the first week, when he'd get so enraged that his face was totally transformed.  She said they've worked out the meds now in a way that smooths him out, and they'll provide an as-needed dose if he shows signs of deeper rage.  I think that's great.  At times in the past - like when New York Medicaid took over his case - I've been concerned about agencies that want to medicate him for their convenience.  That's a worry when you think about nursing homes, too.  But nothing along those lines is happening here.  What they're doing seems like smart management - he shows signs of distress, and you give him something to take away the distress.  He's not any less lucid - lucidity is relative, of course, but a drug stupor would be evident and he doesn't seem drugged or stupefied.  He's more relaxed and seems more content, which you'd guess is more enjoyable for him, not just easier for the staff.

When we first showed up, P told my father that I'd be able to visit for about a half an hour.  At some internal level he must have been processing this because at exactly the half-hour mark, he reached out and shook my hand and told me that I really ought to get going before the traffic got bad.  I was stunned.  You'll recall that when I visited him in New York - especially in the late stages - it was all I could do to get out the door, and that was after four or five or six hours.  This is the first time I can remember, since he first got really ill, that he threw me the cue to leave.  And after so little time... I could react to this in all kinds of ways but the way I actually did react was to be hugely pleased.  Maybe it's an aberration and he'll go back to the old clinging but what I think it might mean - what I hope it means - is that I'm suddenly less central to him now.  There are a lot of people more directly involved in his care than I am, and he hasn't seen me for weeks, and that might mean that he's less dependent on me, and I can take a step into the background.  Which, if it's true, would be ideal.  It's time for me to move into the background - that's one of the reasons for moving him to a nursing home.  There's not much I'm able to do for him now, and suddenly there are a lot of other people to take care of him and for him to relate to.  I'd like to think that I've delivered him where he needs to go and I can begin to stand down now.  I had the same thought - about delivering someone into good hands - when I brought my mother to hospice, and then to Woodlawn.  This is different, but in broad outline, maybe not.  In any case it feels like a move toward a conclusion, or at least a phase shift.  It's welcome, if so.

The adventures are going to continue, of course.  Monday, the staff will transport him to an appointment with a urologist in Bethesda.  He came up with a high PSA number, and given his prostate cancer history, they want to check it out.  He had a PSA spike a couple of years ago, that then went back down.  It turned out to be related to a cold.  So I don't know that this one means anything.  I'm glad they're going to look at it, though.  I'm also glad that they didn't want me taking him there.  The nursing staff asked me if I wanted to drive him and I said no - I haven't taken him to doctors' appointments for the past two years.  And if I take him to this one, so soon after his arrival, he's going to be upset about the appointment itself, and angry at me for taking him there and then back to the nursing home instead of to New York.  So I decided to leave it to the professionals.  P told me she thought that was the right move.

Apart from all that, though, the only task is to figure out when to visit next, and see about getting into a visiting rhythm.  I suppose that'll happen naturally.  I'll think about it and look at my calendar as soon as I get over this afternoon's reunion and my blood pressure goes back down.

Comments

[Flouncy]

Alan, have you read the Hard Choices booklet?

It's free here:

http://www.hardchoices.com/

I mention this only because of the PSA test and urologist visit you mentioned.

Many of us start turning down tests and related diagnostic procedures like that, because we wouldn't treat aggressively anyway. Plus, getting urine and blood samples for lab tests can be very traumatic for people with advanced dementia. And more invasive albeit nonsurgical diagnostic procedures can be very traumatic as well. Just imagine, for example, a digital rectal exam or pelvic exam with instruments for someone with dementia who gets upset about bathing and changing clothes!

Along the same lines, very few of us with moms in their 70s and 80s who have dementia authorize mammograms, regardless of family history, etc.

[Alan G. Ampolsk]

Flouncy -

I don't know the booklet, but I'll have a look. I'm completely sympathetic to everything you say. During the admission process - in my role as proxy - my first move was to get a Do Not Resuscitate order in place. I also refused a pneumonia vaccination (I gave the OK for the flu vaccine since that's a community health issue), artificial feeding and such. My take has been and continues to be that he'll be much better off if he dies of something other than Alzheimer's, so I'm trying to manage accordingly.

The reason I'm OK with the tests is that I want to be able to manage his situation based on the best available information. For example, I just cut loose the private-pay aide service, because I can't afford it over the three years before he qualifies for Medicaid. But if I found out his timeline was shorter, I might be inclined to pay for the aide to give him better quality of life. He's not going to have a good experience getting tested - he used to hate MD visits in New York and this will be harder because of the disorientation - but my hope is that he'll gain something back if the news isn't good. As always, I'm dealing blind and my decisions are subject to change. In fact, when I filled out the admissions paperwork for medical decision-making, I mostly checked the boxes for "other" and wrote in, "Consult with me before administering treatment." I want to be able to work on a case-by-case basis.

I guess we'll see how well that works out.

[Jackie]

When a parent is in that condition it's a very strange position for a son or daughter to be in. Nothing is normal. We can only do our best to treat our parents with dignity, not ever knowing what our parents feel or know about the situation. We guess, but we cannot know. I have been following your journey; I can understand because only recently I had many of those same situations to face. In the end we do what we have to knowing that the we are the only one who can judge our actions. I think you have done very well. Try not to be hard on yourself; take care of yourself and don't neglect your other relationships while you are taking care of your father. It's a very sad journey. What a terrible disease!