The Details
Five months after I moved into my father’s house on Cape Cod to look after him—because he could no longer manage on his own, my brother Al came down from Vermont to stay for eight days so I could have a break. I headed back to Ohio to look after the houses I rent out, but wrote out a detailed list of jobs to take care of while I was gone.
I had quite a routine going with my father by then—and I’m kind of stunned, even now, to look back at it. This isn’t the kind of list that made it into the book, whose evolution, over the years of writing and editing, was always away from the specifics of care and into family stories and larger themes. But this is the real scoop on caregiving, the heart of the matter, the moment-by-moment and less-than-glorious daily round.
Of course I explained everything to Al before I went, but it was complex enough to set it all down in print, so he could consult it:
Al–
Itl ’s still cool enough in the mornings to turn on the heater in the bathroom in the morning; probably always will be. Be careful, though, about leaving it on when he’s in there and the door is closed: he can sit for a long time on the toilet and I think it cooks his brain.
Remember the cardinal rule: Bad things happen in the bathroom. I do leave him in there on his own, and I think there’s something comforting to him about being in there. But I keep track of him. I definitely never go off anywhere when he’s in the midst of his morning routine. When he’s just taking one of his long pisses, during the day, that’s another story.
I find I usually have to undress him these days. Otherwise he can get hung up and just wait there in the bathroom, either sitting or standing.
After his shower, if left to his own devices, he may put back on the same incontinence underwear from the day before. I try to whisk it out of sight while he’s showering.
I generally dry his ankles and feet with a towel, then the hair dryer. Then the Loprox gel with a Q-tip, between his toes.
Keep an eye on how swollen his ankles and feet are. The more they swell, the more he should sit in the lift chair with his feet raised. My basic rule has become: whenever he’s in the chair, his feet should be up. Occasional applications of Lubriderm to his ankles are a good idea.
Water available at all times: on dining room table, next to his bed, next to his chair. He likes tissues to be close by all those places as well.
He’s generally safe and secure with his walker—but this morning I took him to bloodwork, he got out of the car and onto the walker, but the asphalt there has a slight incline—and suddenly he was falling straight back. He would have gone back hard onto his head, but luckily there I was.
Often after meals (it can happen at other times, too) he shows signs of real distress. He can’t talk about it, so I’ve never figured out if it’s his mind or his stomach, or some other bodily trouble. He might sit at the table, or later in the chair, and groan with each breath. It can sound and look torturous, and I don’t know what to do or think about it. Last night he was exceptionally lost (“I don’t know what I’m doing here”), so maybe that played a role. But sometimes I think it’s his stomach acting up. Dad will basically eat everything you put in front of him, so you have to be careful. It’s great that he eats so well, but it’s possible that he’s stuffing himself and then suffering. I try to give him some ginger ale after both lunch and dinner. It might help sometimes—though how can you ever be sure?
No coffee. If he asks for a cup of “real strong coffee,” I give him a wallop of decaf—and usually he forgets all about it long before he finishes it. Alcohol is not a good idea either, and you can probably manipulate his intake down to nearly zero—if indeed he ever asks for any.
He rarely wants to go outdoors, or even into the sunroom, no matter how nice it is outside. I offer, and on occasion he takes me up on it.
If he can brush his teeth every 3-4 days, that’s a plus.
His new medication is Beconase, for swollen nasal tissues. One puff in each nostril twice a day, along with the Azmacort.
Good luck, and I’ll never be more than 15 hours away!
–John
Tags: alzheimer's, caregiving, dementia
