Sylvia, keeping her eye on my father

L1040924, originally uploaded by Susan NYC.

Yesterday I took pizza to the nursing home, for the three of us. When Riverdale Pizzeria has the pizza with marinara sauce, we're in luck.  The three of us really enjoyed it, even cold.

That's my father's file at the Alzheimer's doctor

L1039567 my father's file at the Alzheimer's doctor, originally uploaded by Susan NYC.

My father has been part of a Columbia Presbyterian Memory Disorder study since 1997. He had his annual memory test today and scored the same as last year.

Now that he's getting food he likes, he's feeling and looking better. I can't help but think that has something to do with his good score on the memory test. He's still hungry all the time, though.

That's Dr. Scarmeas - terrific guy.

Feeling Pretty Good today

L1039543, originally uploaded by Susan NYC.

My father's annual memory test was today. He scored the same as last year - amazing.

The weight loss was in large part due to his being fed the wrong food. Now, apparently, he eats a lot - and he likes most everything he's given.

He's bounced back, I guess because he's eating more.

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.

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.

sylvia started yesterday

L1038077 my father & sylvia, originally uploaded by Susan NYC.

Sylvia arrives just before dinner, so she sits with my father and makes sure he gets enough to eat. She said he ate a lot tonight and last night - fish both nights, which he loves. And she'll take him downstairs or into the nice lounge after dinner so he doesn't have to sit in the tv room. And she puts him to bed. I think it'll work out fine.

He choked on this milkshake

L1036540, originally uploaded by Susan NYC.

My father isn't eating correctly. He almost choked to death on the thick milkshake - he was sucking it in and not swallowing, and it was sitting in his mouth and throat and I didn't realize - and suddenly he started choking. He was able to expel it - with great effort and without the Heimlich, fortunately. His bones are so fragile, the Heimlich would break his ribs. I don't know if he's less able to swallow, or forgetting, or what.

He'll be evaluated probably today, probably. The speech pathologist coincidentally was within earshot of the choking and witnessed it all and went back to his floor with us and reported it. We'll see what they recommend. There are some tests that they might want - but I'll talk to his regular (Mt Sinai ) doctor about them. She knows my father - he's been going to that clinic for decades.

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.

watchful, early september 09

IMG_6130, originally uploaded by Susan NYC.

Things were bad the evening I took this - about a month ago.  Many residents were restless and an aide was nasty to two different women. My father takes it all in but rarely comments on what goes on. I know it upsets him.

Sometimes it's with dread that I visit my father.   I don't know if the place will smell of soiled diapers.  I don't know if someone will be screaming and others screaming "Shut up."  I don't know if the tv will be blasting with some loud game show in the space everyone gets packed into sometimes.

dad walking with a walker - but now in a wheelchair

dad . L1056788.jpg, originally uploaded by Susan NYC.

January 30, 2008. My father doesn't use his walker anymore, as far as I can see. When I ask, I'm told he does. But this is probably the last time I saw him use it.

My father's first room at the Hebrew Home

L1051013.jpg
Originally uploaded by Susan NYC

The light is great in my father's room. But the curtains are always closed when I go in. I pull them back. . He has windows facing south, too, perpendicular to this wall. Those curtains, too, are always closed. (They're broken, so my father couldn't open them - he doesn't have the balance to reach up and pull them back.)

And the aides don't put the blue quilt on the bed - it's lightweight and washable, just so he'll have something cozy - so that's another thing I do when I arrive: take the quilt out of the closet and put it on his bed.

I guess they always sleep in the white sheets I see when I go into the room. The rooms are warm, though.

In the summer the rooms are usually warm, but when the air conditioning broke, the rooms were unbelievably hot. I just happened to visit the day after the master air conditioning system broke and went out immediately to buy a big box fan.

The air conditioning was broken for several days. They never informed families, so they could bring fans.

A note: my father's bruises are almost healed. But now he has a sore on his lip. I wonder how often he gets to wash his hands.

my father wrote this letter to God today

my father wrote this letter to God today, originally uploaded by Susan NYC.

11/20/06: We were in the waiting room, waiting for his Alzheimer's doctor, Dr. Scarmeas. My father finished writing and tucked these pages into the tablet. I asked what he'd written and if I could read it. He said, "It's a letter." I asked to whom. "It's to God," he said and handed over the pages.

My father wrote this while we waited to see his Alzheimer's doctor. I've been giving him pen and paper to draw or write, and he's been writing rhyming words and playing with language.

I guess that visit to the synagogue yesterday gave him something to think about. He said he wouldn't give the letter to a rabbi, though - he didn't think the rabbi has a direct line.

I told him I'd save it.

Since my father said "Sure" when I asked if I could show it to the doctor and to the resident who was sitting in on the appointment, I'm taking the liberty of showing it here.

Save me from antiquities
My body is full of them
My soul cries for renewal
And fresh goals
Doubly a new interest
In people and living
Where is there a good body shop
Doctors have increased life
of Body Parts - but not
the will to use them

Send me a Signal
that to keep trying
might be successful
and I'll do it.

As of now - its all
down the drain -
FLUSHED

Future - Ambition -
unknown -

An Angel skilled
in rehabilitation will
be welcome.
A. Zever

(I asked who A.Zever is - he said, "As Ever..." and smiled)

engrossed

engrossed, originally uploaded by Susan NYC.

4/25/06 My father has always loved to read. Here he's at the Fairfield nursing home, where he had good light and a (plastic) wing chair to relax in. I brought him loads of magazines from my daughter, who got them through airline miles and saved them up specifically for my father.

Now he still has magazines, but he's in a dark room at a different nursing home, and he doesn't really enjoy magazines any more. He can't really read them - but I'm not sure he could read when he spent all those hours leafing through them.

My father used to fall asleep reading books or the newspaper on the couch when I was little. I don't remember seeing him actually read.

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.)

dad taking a walk

dad taking a walk, originally uploaded by Susan NYC.

10/10/05 I was amazed that my father lived through this hip fracture. The hospital was awful. The hip replacement was so poorly done that his gait was off forever after that. I forced him to do the exercise in rehab, and he actually got back to walking with a walker. The staff was amazed that he lived through it.

He had falled in the Hyatt, in Yonkers, and was found in front of the refrigerator on the floor. That was the second hip fracture - the first put him into nursing homes forever.

This second fracture meant he had to move from the Hyatt to a regular nursing home - in this case the Fairfield.

Mrs. Ascher

Mrs. Ascher, originally uploaded by Susan NYC.

Taken in May 2005 at the Classic Residence by Hyatt in Yonkers. My father lived there for a while until he fell and broke his hip. Great place for people with Alzheimers.  Clean, cheerful, happy.

When Mrs. Ascher saw me aim my camera across the table at her, she paused and smiled for me. She used to write young adult novels - and, her daughter told me, published eleven (if I remember right).

Mrs. Ascher had a real crush on my father.  If I took him out for lunch, she got mad at me and told him off.  He didn't have any interest in Mrs. Ascher.