Death Has a Life of Its Own II: He's Verbal Again

A long phone conversation Thursday with P, who was just back from a three-week vacation.  She said my father was at talkative as ever.  I didn't believe her - figured she was just describing some of his new vowel sound-based flights.  So I was a bit stunned Friday when I showed up for a visit and he recognized me immediately and launched into an extensive monologue, just like the ones he was able to produce during the first days in the nursing home, or even in the last days in the New York apartment.

The gist was this: there was something he needed to get for me, we need to go up to Broadway to get it because we had people coming over, and he wanted to make sure he did the right thing by me and got me what I needed. we'd have to go up to Broadway to get it, and then his mother was going to come over but not until Tuesday... or... when is she going to get there?  He went on like this nonstop for about 40 minutes.  There were even some old, apartment-style interruptions.  Someone had turned on the TV for the patient in the next bed - it was tuned to CNN, which was showing President Obama's meeting with Congressional Republicans.  My father noticed and interrupted himself and nodded toward Obama and said, "Oh, there's that guy again."

Underneath the spectacular verbal flights, the same recent symptoms were playing out.  He began to fold and re-fold the bedcovers, then he tried to offer me the bedcovers, then, at around minute 38, he began to get agitated because there was something he needed to do to get ready for his visitors, and as usual he started to try to hoist himself out of bed.  And because he couldn't, the agitation got worse.  I decided to leave at that point.

I'm not remotely sure what to make of the sudden return of his speech faculties.  I think the best answer is, not too much.  Apart from the verbal flood, his condition hasn't changed.  He's still immobile, still going through the same repetitive obsessive motor behaviors.  His attention fails and the distress sets in at about the same point.  We're all tempted to confuse verbal facility with intelligence - the fact that you're loquacious and produce intricate sentences doesn't mean that your cognition is sound or that you have a clue what's going on.  For further proof, turn on a news channel and listen to the pundits, or read a book or article by one of those business gurus.  So to me this doesn't mean recovery or improvement.  It's just an odd overlay on the constant decline.  My take is he's now a stage 7d patient who can talk a blue streak, which is nonstandard but doesn't really change the picture.

So the monologue isn't something to celebrate, in the same way that when he crashes, that isn't necessarily something to mourn.  Since I live in a world of mixed feelings, I'll even admit to a small degree of disappointment - oh, god, you mean he's going to hang in like this for another year?  On the other hand, there was in fact a kind of connection going on - I wouldn't say we had a conversation, but we had more gestures toward one than we've had in a couple of months.  There won't be many more conversations, so even the rough outline of one is something positive.

The real headline is that - as I already knew- death from Alzheimer's isn't a neat linear process.  There's lots of backing and filling, and there are crashes that aren't crashes, and there are improvements that aren't improvements.  It is what it is, and it's not going to conform to a structure or to anybody's expectations.  As to causes, it's possible that getting him off the Alzheimer's meds - not to mention the lithium - helped him regain some capacities.  In the course of my conversation with P, she told me she was relieved that the schedule of meds had been reduced almost to nothing.  In particular she was happy to have gotten him off the lithium.  So much for that little science experiment. 

I asked her my new ritual question - seeing him the way he is now, do you think we made the right decision about enrolling him in hospice?  "Yes," she said, "I was relieved to hear you'd done it.  Because that's the only way you can refuse all the tests they'd want to put him through.  I mean, why do blood draws?  What are you going to learn and what are you going to do once you learn it?  There's no point."

I also talked with her about the whole misadventure with Dr. H.  She said she'd heard about it, but wanted to hear my take on it, and once she'd heard it, she said she'd take it up with the administrator.  Good enough.  I mentioned, again, my surprise that they don't automatically shift over to the palliative care physician when a patient goes on hospice.  She thought that was a good suggestion.  I'm still surprised that they've never thought of it.  Wouldn't a protocol like that just be common sense?

In the meantime, we are where we are - same as always, but every so often you get a clear reminder that things are going to go their own way and that, yes, death has a life of its own.  I'm no longer all that willing to work with predictions.  The week or the month could bring just about anything in just about any sequence.  We'll have to ride along  and see where we wind up.

Comments

[Susan O'Connell]

Alan -
Thank you for publishing your experience here. I've been caring for my father since June, 2008, when my mother died. He's quite a bit younger than your Dad, but has been battling a number of neurological disorders for many years. He took a fall in March, which led to a prolonged hospital stay (during which he lost two toes and had arterial bypass surgery), followed by inpatient rehab in a nursing home. He was discharged to my care in June, and has been in a steady decline ever since.
Although I wouldn't wish this nightmare on anyone, it's reassuring to know that we're not alone. My best wishes to you and your family,
Susan O'Connell

[Shu]

I recognize (a) the folding repetitiveness [we eventually made an assumption about its being a sort of control-in-the-midst-of-mental-chaos thing, that was some self-soothing; eventually there was a counting stage that we realized was a pain control technique that helped my mother), and
(b) the need-help-to-go-somewhere-so-I-can-make-things-right mode (this was a heartbreaker for me because I could never get her convinced, and have it stick, that everything was handled and all was okay)

Alan, "it" will come for your dad and is probably already in the process of doing so. Because I tried to take pictures at the nursing home so I could share with family, I've been able to look back through the last 9 months (actually can look back further to her baby pictures, but that's not the point). This gave me clear visual cues for when she started actively dying (a topic I found to read up on via my phone while I sat next to her in the last days at the hospital).

The change was so THERE, and I wished I'd had enough insight to recognize it as I guess I would have been less surprised as the stages kicked in.

I hope not to have to go through waiting with someone who is dying again, not anytime soon, but the experience was frustrating, scary, profound, joyful, and absolutely tore me up (for my own sense of loss). Even though I lost my mother to the disease some time before all the ending stuff, who she still was - the core - was a precious relationship and I would have honored it forever, although she so wanted to GO.

I know you already know -- it's just not easy. And everything changes.

Hugs to you, hugs to your dad.

Supportingly,
Shu