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Friday, 06 August 2010

Alzheimer's: Part 10 – The Nursing Home

[EDITOR'S NOTE: For newcomers to The Elder Storytelling Place, the first nine parts of Bill Weatherstone's real-time series about the progress of his wife's Alzheimer's disease, which began a year ago on this blog, can be found here.

By William Weatherstone of The Diesel Gypsy

It is months now since my wife has taken up residence in the local retirement home. I started to relax more since the pressure has been lifted off me. One would think that all was okay now and all the problems would be solved. Not so.

I visit every morning and afternoon. In the morning, I am there about one-and-one-haf hours before her lunch. I find her sleeping in a wheel chair in the lounge. I call her and she still recognized me.

Our routine is to wheel her back to her room slowly and then help her to stand while I hold her left shoulder into me and her left hand into mine while my right hand is on her right shoulder keeping her fully secured.

Slowly we walk back to the lounge, turn and return to her room where she is very tired and I pick her up and lay her on the bed. She is asleep as soon as she hits the pillow.

I have to install the side rail as a precaution. Her roommate robotically gets up for lunch time and tries to take my wife down towards the dinning room. They caught her in time before my wife could fall while disoriented. Since the rail is up before lunch, her room mate will not try to get her up.

In the beginning, she would physically fight the caregivers when they got her up in the morning to wash and dress her. Lately she has been more co-operative than I expected and could not understand why. The floor manager told me that it takes about six months of routine before they finally get used to the procedure and surroundings. It has been half a year or better now and feels like it has been just a few weeks.

She had to be transported to the emergency a few times with haemorrhaging from the nose requiring blood transfusions. The heavy drugs that she had been taking when she was her normal size were now double strength because of her lost body mass. She has been taken off those particular drugs and seems to be coming around much better.

NOTE: All the ambulance drivers know and kid with her and she does not give them any static. When she sees them while in the hospital, she knows she is getting out of there.

When you go to bed after midnight and then get a call at 2:00AM saying that your wife has been sent to the emergency ward at the hospital, it scares the hell out of you. The first thing that comes to mind is, “Is this the end?”

The waiting to get in to see her is horrendous. You cannot enter until she has been stabilised. This has happened four times so far and always in the middle of the night or very early morning.

Walking on her own now is nonexistent and she only walks with me holding her. I have had to order a custom wheel chair because of her condition and size. The chair that was on loan was far too large and awkward.

The supplier came in and measured her up for a new one. While they were measuring, I curiously asked if it would be in the hundreds of dollars. The woman said no, try thousands. I almost crapped myself as well as yell for a nitro pill and grabbed my heart.

I guess I scared the hell out of them and I quickly informed them that it was just a little injection of senior humour, and that they were too young to pick up on it. And by the way, the cost was in the thousands.

Fortunately all is not lost. Between the government grant and the assistance from a local club, my cost was nil. I have given the club a letter of gratitude explaining that when my wife can no longer use the chair that it will be donated to them to do with as they wish. It is a perfect size for a child and they make donations for the sick kids. Today a ton of financial worry has been lifted from my shoulders.

I had some business downtown one day and had to eat lunch in a restaurant. When paying the bill, I was given three peppermint after-dinner mints. I made my way to the nursing home for the afternoon visit.

As I entered the front door, there were a couple senior ladies sitting around in a grumpy mood. I offered them a candy each and said (as I gave one to each), “Sweets for the sweet.”

They soon came to life and lit up like a Christmas tree. One was getting frustrated because she could not get the wrapping off. I stripped it and gave it back. She responded with, “Will you marry me?”

I said that I was sorry but my wife has a licence that says I am hers and I cannot marry anyone else. They all started laughing out loud and I took off upstairs.

After that, I have always carry a dozen or so mints and go through the same routine. It is at the point now that when I hit the parking lot, they all head for the door to greet the CANDY MAN.

Staffs tell me that some of the most miserable ones are starting to even smile when I joke with them for a few moments. Yes, and even the staff get a cut of the action to sweeten up their day.

The other day, two 90-year-olds were sitting on the porch looking a little grumpy, so I gave them a mint each and then accused them of just hanging around trying to pick up a couple young guys. I guess that made their day, because they were still giggling when I got to my car.

The Candy Man has left the building.

One day was really depressing for me. I had many problems on my mind, but still made my visiting trip. One of the staff (the secured floor manager) asked how I was and, as usual, I answered with “rotten.”

He said, “why”, and I responded with, “depressed.”

“No problem, Bill,” said the manager. “We have an empty bed available that you can have and not only that, you can have a job here. You seem to be able to handle these residents and make them react; some even seem to come out of their shell for a bit.”

Ha-ha, yeah, right. A truck driver helping the mentally sick? You must be kidding, I should be a resident.

It’s a challenge every day to visit and see the slow deterioration of my wife. I still, after all this time, cannot leave (every day) without a tear in my eye. I use more from her box of Kleenex than she does.

I must add that the staff in this home are AAA-1 and I could not ask for better. My wife is their favourite and always comments on her winning smile.

NOTE: It’s a shame. Her room mate has a daughter living a few hundred miles away but has not visited in three years. She is not alone in that respect, because 75 to 80 percent on the secured floor never have visitors. It burns my ass to see this happen (abandonment). I speak to them all and usually get even a slight recognition response from the most demented.

How long this will carry on for? God only knows.

PS: I am now in the process of ordering the second box of 1000 mints. (None have been wasted.) The Candy Man will return.

[INVITATION: All elders, 50 and older, are welcome to submit stories for this blog. They can be fiction, non-fiction, poetry, memoir, etc. Instructions for submitting are here.]

Posted by Ronni Bennett at 05:30 AM | Permalink | Email this post


Bill, what a sad and happy story. It reminds me that the slightest things can make a difference in people's lives. Your wife is so lucky to have you.

You are a wonder dear Candy Man.

Bill,this is so much like my experience when my Mom was in the nursing home. There were days I hated, hated, hated going in. I never wanted my mother to die, but I did want it to end. (I know you understand the difference).

The strange thing? There are times I miss it. I miss the way you have to focus 100% when you visit the person you love. I miss the feeling of doing something worthwhile. I miss seeing the residents. And I miss
seeing my mother.

Thank you for your care of those who have no visitors. That might be me someday.

And, take a day off sometime. It's OK. Talk it over with the staff first so they can let you know how your dear wife reacts.

Nice to see you here again, Bill and wonderful to know that you are still "on the job" trying your best to make your wife happy and comfortable.

Just think of the joy you bring to the other residents who look forward to your visits,your smile and your candy...

You are a good guy!

Bill - Another terrific story!

You deserve a medal for your patience and devotion. Also, I admire your self-control. There is no way a box of mints could survive uneaten in my house! - Sandy

Your story is very moving. Such a terrible illness for your wife to be suffering and yet, think how much you improve her quality of life, even now. I am sad for the residents who have no visitors. Your gestures as Candy Man are very touching. You have a golden touch with your manner and generosity. Three cheers!

I have been waiting for an update. Thank you. It is tragic the way we ignore the elderly. Seventy-five per cent get no regular visitors! I admire the way you add joy tot he lives of the other residents.

One of the most touching things I have ever read was:

A man would go to the nursing home each morning to have breakfast with his wife who had Alzheimer's. One day one of the nurses asked why he came every day since his wife didn't know who he was. He replied: No, she doesn't, but I know who she is.

This piece also one of the most touching things I have ever read. Your wife truly married a "sweet" man.

Thank you for the update. I have been wondering how things were going for you. You are a terrific guy and, as Marcia noted, your wife is lucky to have you. So are the residents whose lives you brighten.

You are also an inspiration to others who might be in your shoes someday. Kudos to you.

I second all of the above, and thank you for the joy you bring to all.

You are a saint, pure and simple. Wish there were hundreds more of you.

Thank you for your postings, Bill. May the sweetness you bring to all the lives you touch daily return to you a thousand fold.

We are at the edge of the woods.
The path leads straight into the shadows where now you stand.
My sister.
The late night, dawning hours of the morning calls to the hospital where the same question is answered over and over, and over again.
The weight loss, the flicker of recognition, the repetition.
The nurses who are so grateful you are there, when there are so many who have no visitors at all.
A toast, Candy Man.

Kudos to you--you must have been a wonderful husband to your wife before she acquired Alzheimer's--a truly horrible disease! My husband would do the same for me, I know, and I for him. Still, my primary thought as I read your story is that I SO wouldn't want to put my beloved husband through what you are experiencing! I hope I go quietly in my sleep--one way or another--while I'm still more or less me.

Like many older people, I'm sure, it's not death that I fear--it's how I get from here to there and how much control I will have over the end of my life.

Thank God for men like you! And what a crime that so many people like your wife have no one to visit them. They may not recognize the visitor, but they need and are uplifted by a visit from someone who cares. Thank you for caring, Bill.

Hey, Bill:

My dear friend Joe's wife, Corrie has Alzheimer's. I wrote this after my wife and I visited Corrie. Joe and I were in a gospel quartet, and that's where the music comes from.

When we arrived at the nursing home, they were just bringing Corrie down the corridor. She was slouched back in her wheelchair, seemingly oblivious to everything. Old Mister Alzheimer had stolen her away, leaving us with a pale imitation of the quick witted and fun-loving woman we had known and loved for so many years. We brought a plant and a card for her, and Joe tried to make her aware that we were there. She had her eyes open and was wearing her glasses, but it was difficult to know what images were registering in her mind. Despite all of Joe’s loving efforts to talk with her, she didn’t respond, other than to occasionally utter a low cry, as if she was in pain. Joe kept asking her if she had any pain, but the questions hung there in
the warm corridor air, fading away with no answer. Joe asked me to read the card to Corrie, so I
squatted down in front of her wheelchair and read it to her, telling her how much we love her and how are keeping her in prayer. With that, she attempted to string together a few words into a sentence, and for the first time, I felt that I was breaking through to her. Whatever remains of Corrie was trying to reach out to me. After talking to her for a couple of minutes, I squatted down next to her again, resting one hand on hers that was lying limply on the arm of her
wheel chair and placing my other hand gently on her shoulder. I leaned forward and looked deep into her eyes and began to sing.

“How much do I owe him?” I sang. There was a dim flicker in her eyes as she sat there listening. “Remember that song, Corrie? That was your favorite song that the Messengers sang.
You used to play it on the piano.” Corrie can no longer feed herself, and her piano playing days are long over. But I knew that Corrie recognized the song, and I sang the chorus for her.

How much do I owe him?
How much do I owe him?
How much do I owe him?
He died just for me, just for me

“The next time that we come, Corrie, I’ll bring my guitar and we’ll do the song together,”
I told her. “I will if the good Lord is willing,” she answered. It was the first time in a long time that she had spoken clearly in response to a question. Neither Joe, their grandson Keith or the nurses had been able to get her to answer a single question. But she understood what I was saying. She used to play that song over and over again on her piano when she was still home with Joe. It’s still in there.

Candyman - you are wonderful. I am reading a book called the 36 hour day which deals with dementing illness and the tolls it takes on caregivers and afflicted. Knowing first hand what you are going through for my Mother In Law had it...my heart goes out to you. Her's was a quiet passing from life disease...she just drifted away over a period of time...I hope and pray my husband and I just "go"...JUST HUG HER AND LOVE HER and do what you do...you are a gem!!!!

I have wondered where you have benn! I am glad to see you have written an update, perhaps I have missed something earlier?
I hope that you have some relief, even just a bit ...that may come from chasing around the home duties.I know that you still suffer as she continues the journey into emptiness. My husband is on same journey, though in fragments. It is not at all predictable, and so that keeps one in a state of anxiety (even though we don't feel it so obviously) Each day is different, sometimes each hour. I send you prayers to keep strong as you watch this final sail out to sea.

Candy Man, Bless you for your grace in showing mercy and love.

I have instructed my kids that, should I (God forbid) ever suffer from Alzheimer's Disease, they are not to visit me any more, once I don't recognize them. I have worked in an Alzheimer's wing of a nursing home, and do not want my kids to ever have that sort of memory of me.

There is no Bill in my life to look after me, so I just hope to God that I don't have to go there.

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