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.

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 night table

my father's night table, originally uploaded by Susan NYC.

3/29/09 My mother bought that photo wheel decades ago. I've changed the pictures. The one showing is a picture of a family vacation we took in the early 80s - the only family vacation I remember we ever took. Other trips together were to see my mother's family in NYC, and I didn't ever consider that a vacation. (I grew up in western Pennsylvania.)

For a long time my father loved looking at his pictures - he has a lot of them. Now, though, he doesn't remember who's in them and rarely likes to look at them. He does, however, love looking at pictures of himself. There's a computer on his floor at the Hebrew Home, and I play the Flickr slideshow of his pictures, which he can watch for a long time. He makes wisecracks about each picture: "big nose," "handsome guy," and provides sound effects: laughter, chuckles, groans.

The gingerale is always there - for medicine, I guess.

I have no idea who uses the phone. I doubt if it's even hooked up. I don't call my father. I'm afraid he'll jump up to try to answer the phone and fall out of bed. That's if he even hears it.

Billy and my Father

IMG_0808, originally uploaded by Susan NYC.

I've known Billy since the 60s, and he's known my father since then. Now Billy lives in Toronto, so he doesn't see my father often. Until this visit, my father recognized Billy.

my father's third room at the Hebrew Home

my father's room at the nursing home, originally uploaded by Susan NYC.

My father has been in nearly a dozen rooms at various nursing homes over the years, I guess.

This is his third room at the Hebrew Home. The first was when he was walking fine with a walker. Then he feel and broke his shoulder. Since he couldn't use the walker (no weight on his shoulder) he went to a floor with more nursing staff.

Eventually he could use the walker again, but they didn't have the staff to get him back on his feet. So much muscle had atrophied. He learned to speed around using a wheelchair, though, paddling with his feet. He escaped a few times to the lobby because it wasn't a locked unit.

Then they moved him to an Alzheimer's floor, a locked unit, where he was given lots of "floor ambulation" and he can use a walker again, but with supervision. He still flies around using the wheelchair, and even though the elevator needs a code, he has still managed to escape to the lobby.

This is the nicest floor he's been on. However, his first room was a corner room with lots of light, overlooking the river. That was definitely the prettiest room. He loves light.

bruised again February 2009

bruised again, originally uploaded by Susan NYC.

He has bruises. Am I wrong to think they're from being steered around by aides?

12/24/07 bruise L1052831-2

12/24/07 bruise L1052831-2, originally uploaded by Susan NYC.

I took this on Monday 12/24, Christmas eve. I asked the nurse how it happened, what it was, and she had no idea what I was talking about. She came with me to look at it and said it was probably from his arthritis. I said, "I don't think so." Then she said it must be from drawing blood. I said, "I don't think so."

There was no incident rreport on this in the book, though surely someone had noticed it while dressing or bathing my father. So I asked that the nurse make a note about it in the book, so the doctor would look at it. She said she would.

The day after Christmas I made an appointment for my father to see his Mount Sinai doctor Friday 12/28.

That day I also called the nursing home doctor. She answered her phone and had no idea what I was talking about. Either there was no note in the book for her to look at my father, or she hadn't seen the note. At any rate, she said she'd look.

I called the nursing home again a few hours later, and the nurse said the doctor had left for the day. I asked the nurse to see if there was any notation in the book about my father's arm. She went to look and came back and said, no no followup.

L1051715.jpg Dignified

L1051715.jpg
Originally uploaded by Susan NYC

I showed my father one of his pictures in the camera the other day, and he liked it a lot. Usually he doesn't really look. It wasn't this picture, but since people have commented that this one makes him look dignified, I should print it up for him.

My father has had a self-image problem for a lot of years. That he can look dignified will make him happy, I think. And he actually has a lot more dignity these days than he's ever had.

A comment on his red nose here.......I've been making a lot of pictures b&w, partly because of the color issue. I'm not good at color on Lightroom. That means his red nose doesn't necessarily show up. It's red because he picks at it. The nursing home staff remember to put antibiotic cream on it sometimes, and when the sores get really bad, I remind them. Then I guess someone writes it up in the book.

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.

Pressure bruises and tv

11/30/07 L1050733.jpg, originally uploaded by Susan NYC.

This is from November, 2007:

My father usually has pressure bruises like this on the inside of his arm. They're from being steered around by the aides at the nursing home.

The past Friday night as people finished eating dinner, I watched the aides steer some residents around by holding them by the upper arms, thumbs inside the elbow on both arms, then squashing them into rows of chairs placed in tight rows with less legroom than a greyhound bus, making them watch television.

I watched this while I sat with my father in the dining room. Channel 7 was blasting the whole time dinner was served - I don't know what time it's turned on, but an aide who had come on duty at 3pm said it's always on when she's there. She said it's always Channel 7. I don't know what's usually on, but the hour and a half I was there it was the typical bloody disaster news - local murders, kidnappings, etc.

The flat-screen tv is mounted high on the wall above the opening between the hall and the the dining area, in the dining area itself. There's barely enough room for the "tv watching area." If someone has been parked in the rows and doesn't want to watch tv, they can't get out until the whole row gets out., and since the walker is parked alongside the sitting area, they also need the help of an aide. So they have to stare either up at the tv or straight ahead at the back of the neck of the person in front - about three inches away.

Keeps them from wandering around, that's for sure.

Shameful, I say.

Charlotte and my father

-1043709
Originally uploaded by Susan NYC

In October Jen & Charlotte & Scott came to NYC for a few days. Charlotte was actually excited about going to visit my father. She had a new guitar to show him (a $10 "street model" which actually works a bit).

It turned out he loved playing the guitar, and even though it was new and she loved it, she let him play with it practically the whole visit. I took a guitar to my father the next time I went.

I bought Charlotte a 10 cent lollipop at the nursing home "store" and she was delighted.

A beautiful day, so we sat outside.

Dad: Napping With his Sunglasses On

Dad: Napping With his Sunglasses On, originally uploaded by Susan NYC.

1/223/07 I found my father curled up when I arrived and put his robe over him. I always wake him if he's asleep when I arrive - he has no trouble going back to sleep. Apparently he hadn't felt well this morning, but he told me he felt fine. (The aide said he hadn't felt well.)

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)

dad & I at the Hebrew Home: newly arrived

dad & I, originally uploaded by Susan NYC.

8/20/06: For quite a while my father enjoyed moving from nursing home to nursing home, from room to room. He was always hopeful, I think, that he'd be less bored. Even at 93, his mind pretty well gone, he still complains he bored. And the staff still marvel at his vocabulary and skills. But they don't engage him in any way. Nursing homes are awful places.

I moved my father from the Fairfield to the Hebrew Home when the Fairfield was sold to a private nursing home company. The Hebrew Home had owned it. I don't know if the new version of the Fairfield was a good place after the transfer, but I do know that staff started quitting right away. A bad sign. I loved the Fairfield - by far my favorite nursing home.