My father studying the art...

L1040925 my father studying the art..., originally uploaded by Susan NYC.

...and Sylvia walking ahead....she has a hard time walking at his pace when he's looking at things (which is most of the time).

It used to drive me crazy, walking so slowly alongside him. But now I'm used to it, and I let him paddle along with his feet, at his speed, and try to push the chair only when he needs help.

L1039573 Happy Chanukah

L1039573 Happy Chanukah, originally uploaded by Susan NYC.

my father, snacking

IMG_4375, originally uploaded by Susan NYC.

This was taken in July, 2009, when it was fine for my father to eat ice cream. He was diagnosed with dysphagia recently, and ice cream is on the forbidden list. Apparently it turns to thin liquid as soon as it hits the throat, and he can aspirate it "silently" (no cough) into his lungs, where it will become bacteria that cause pneumonia. At least that's the story I got a few days ago from the nutritionist.

So my father can no longer eat his very favorite food. And it's been years since he could drink his very favorite beverage: beer. His history of alcoholism makes that prohibited.

I had signed a waiver of consent that said my father could have ice cream daily, at lunch and at dinner. At that time I'd only been told that it would become thin liquid in his throat and he might choke. Not knowing the whole story, I figured they were being weird about the waiver.

So I retracted the waiver the minute I understood it could be a death sentence.

Now I'm thinking about it. My father is 94. He has Alzheimer's. He likes to joke around - especially dirty-old-man jokes - and some of the aides and staff at the nursing home are religious and prudish. I've been "talked to" about his language and sexual innuendos (as though I could talk to him, a 94-year-old man with Alzheimer's, and convince him to stop). In all the institutions and floors he's been on, this is the first floor that makes sexual jokes taboo.

(One of the staff said dirty jokes and sexual innuendos are not at all typical of old men with Alzheimer's.  Huh????)

No beer, no ice cream, no dirty jokes.

I hired a private aide last month - someone who was a private aide on a floor he used to be on. She thinks his jokes are funny. And she's certainly not dangerous to his health, the way beer and ice cream are.

The quality of his life has improved since Sylvia's arrival, so I guess my father doesn't need ice cream.

If I sign the waiver and let him have ice cream, am I (as they clearly want me to understand at the nursing home) signing his death sentence?

Obviously my father is going to die, whether ice cream is part of his diet or not.  Am I free of guilt if he's not allowed to eat ice cream?

Am I supposed to feel guilty when my father dies if I've signed another waiver allowing him to eat ice cream again, knowing what I now know?   

Will I feel guilty?  That's a big question.

october 2007

-1043714, originally uploaded by Susan NYC.

Charlotte looks so cute in a dress....

Here she's finally deciding her great grandfather isn't going to do anything awful. Because of his alzheimer's, he makes strange growling noises, and he roars, especially at Charlotte because he thinks it's funny that she's scared.

Now, 2009, she roars back. It took her a while to get used to him - especially since she sees my father maybe once or twice a year.

My father has always had trouble feeling good about himself -with Charlotte he can exercise power because she's little. That's a mean streak he's had in him for a long time - he did it to me, to my sister, and to my daughter. And now he's got another generation to "scare."

I wonder how he'll be with Nathaniel, whom he hasn't seen yet. He may not have the same dynamic with a boy.

My mother had the upper hand with him, though. He was scared of her.

waiting for lunch

L1038932, originally uploaded by Susan NYC.

My father nods off just like the woman to his right, who is at the moment nodding off. The residents tend to sleep a lot, wherever they are. 

When my father first lived in a nursing home, he didn't sleep a lot.  I 'd look around at the people barely able to keep their eyes open and feel depressed that they seemed to be so barely aware of where they were, who they were. 

As my father enters that stage I find it hard to relate to the man who's no longer always the man I'm so familiar with - the man who jokes and laughs and makes fun of himself. 

He still greets me with a big, "Hi Sue!!!" or "Susie!"  He's the only one who ever called me Susie.

he's posing

L1038144 he's posing, originally uploaded by Susan NYC.

My father has a few poses for the camera - this is a version of one of them...I know he's feeling okay if he mugs for the camera - because sometimes he doesn't react at all.

I bought my father a few fleece tops since he likes to be cozy. I hope the aides remember to put them on him.

Lost in Thought

L1034298, originally uploaded by Susan NYC.

Sometimes my father looks very thoughtful. I know (despite his Alzheimers) he has times when he "thinks things over." The other day he told me he was confused, he didn't know where he lives. I feel awful when he says that - what a scary feeling to be lost. I went back the next day - though I don't usually go two days in a row - and he was fine. I wonder if something upset him.

yoga time at the nursing home

yoga time at the nursing home, originally uploaded by Susan NYC.

Taken January, 2006, when my father was still at the Fairfield - a wonderful small nursing home that had exercise, good food, lots of activities, and very little to complain about. But the big thing I didn't like (the doctor on his floor) was enough to have me get my father out of there.

I've always taken my father to a particular Mt. Sinai clinic and a Columbia Presbyterian Alzehimer's doctor - and nursing homes have usually respected her prescriptions, requests, etc. But the Fairfield doctor ignored everything, changed prescriptions, and mocked me when I made requests. I discovered that they had put my father on strong anti-psychotic meds at one point (he suddenly became a zombie) because he told the psychiatrist he had killed his wife. That was his sense of humor talking - which should've been evident from everything else he said. Or at least they should've called me first.

In a nursing home, there can be a written request not to change meds without first telling the family. The nursing homes don't have to comply, and sometimes won't.

Where he is now screwed up his meds, too, but I've since convinced his doctor to at least consider prescriptions from his outside doctor who, she said, sounds like "some fly by night" who doesn't know anything. He's one of the foremost researchers in Alzheimer's, and my father has seen him for nearly 15 years - long before he first went into nursing homes.

(Some things about nursing homes make me crazy.)