Tuesday, July 17, 2012

Alzheimer's Disease is a cruel kick-in-the-pants

Truth be told, in many ways, I lost my mother several years ago.

She was diagnosed with 'probable' Alzheimer's Disease in 2004. Within a week or two of the official diagnosis, we had homecare services started for her, after she took nearly a week's worth of pills in one day because the pill packs we now had for her were too confusing (a year before, she hadn't been on ANY medication, so she hadn't needed to learn how they worked).

Homecare was there to help her out (and keep her safe), and the rate at which we had to increase the level of care she was receiving was as rapid as lightning. Enough to make your head spin.

Before we knew it (less than 4 months after we started with homecare), we had people in to care for her twenty-four hours a day, seven days a week.

This took coordination and cooperation from all three of homecare, my brother Al and myself,as well as a private company. There was also constant communication between myself and my two brothers, typically through E-mail, and much patience, love and support from our respective, wonderful partners.

Al and I, being the ones who lived in the same city as Mum, did a lot of the day-to-day things involved in Mum's care, including taking our own "shift" with her. Our other brother was no slacker, though- he had to manage the financial end of things, and I'm sure he felt, at times, helpless in that he couldn't do more due to the distance.

After a while, we fell into a pattern, although Mum's needs and temperament fluctuated wildly, particularly during the short, grey days of winter. When one of her cats became ill, it fell upon me to take him to the vet to find out what was going on. Diabetes. Since it had become so very difficult for Mum to adapt to new situations, we tried our best to avoid drastic changes in her day-to-day life. This meant, in spite of all common sense to the contrary, that we now had to add two trips a day back and forth to Mum's house to give the cat his insulin shots.

Now, I readily admit this was challenging at times for me, what with having small children at home, but we had two cars by this point, which helped enormously. My brother, however, does not own a car, and so for him, going over to help out with the cat meant taking the bus.

And still we managed to carry on with it for quite some time.

Then one day, while we were out for our annual day at my auntie's cottage, Mum fell and broke her hip. My poor Mum, in pain and so confused as to what was going on, had to endure an hour long ambulance ride to the hospital.

I rode with her, and while I wasn't in pain, let me tell you-
                                    1] that highway was bumpy, and
                                    2] ambulances don't have cushion-y shock absorbers ...

She ended up spending 7 weeks in hospital, and because I am trying, in my life, to release the negative and see the positive intention in people's words and actions, I will not here describe that experience. 

Short version: it was tough. At times awful, even.

Because Mum's disease was progressing so rapidly, those 7 weeks were detrimental to her independence. There was an incident involving a homecare worker, and Mum was panelled for placement in a nursing home.

Anger. Hurt. Betrayed.  these are all words I could use to describe mine, my brothers', and my mother's feelings surrounding this decision, which was forced upon us whether we wanted it or not.

Again, I could go on about the efforts (or lack thereof) on the part of certain people involved, but I am trying not to dwell on the negative ...

Once Mum was in the longterm care facility, my brother felt it was important that we empty out the house and sell it, as quickly as possible. I'm not entirely sure why he felt we had to move on it so quickly, but in the long run, once it was done, it was one less thing to worry about.

Many people, at one time or another in their lives, have to do the difficult task of sorting through the home and/or possessions of a loved one who has passed away. Doing this task when the loved one is still living, but won't be returning to their home, feels wrong on so many levels.

I do not wish to villify my brother. The job needed to be done, and our mum could go on living for years. Paying for the maintenance and upkeep of a house that wasn't being used made no sense. But it was hard.

In clearing out and selling her house, I felt as though I had lost my mother. Fortunately, the task of deciding who would take what went rather smoothly, without, so far as I ever learned, any resentment arising out of it. Given that this is an area in which such issues often come up, I pleasantly surprised that we managed to avoid them. That was spring.
The following summer, Mum fell ill. Fever, aches, chills, she became unresponsive and stayed in bed for over a week. She recovered from the illness, and I began working with her to get her to stand and walk whenever I came to see her.

Unfortunately, I myself became quite ill (ended up in hospital with pneumonia, in fact), and by the time I was well enough to go see her again, she seemed to have forgotten how to stand or walk. She never walked again, in fact.

It really wasn't all that long after her illness that she all but stopped speaking, too. She would still speak a little bit to myself and my brother, but even so, she wasn't saying much.

When we went to see her, we found ourselves wheeling her around the courtyard at the home, looking at the flowers and, essentially, talking to ourselves in an attempt to communicate and connect with her. "stupid bloody small talk" is what she would likely have said, if she could, but while it felt silly to be talking to myself, being silent felt so much worse.

Now I really felt as though I had lost her.

Not every visit was horribly bad- if Mum seemed particularly unresponsive on a given day, I would resort to mentioning the name of her best friend, or saying one word; "bananas".  If I said the name, Mum would respond with bananas, and if I said "bananas", she would respond with her friend's name.

This has to do with a story from a number of years before, involving her best friend, another mutual friend who could chat your ear off, and a bunch of bananas on a cold winter's day in a grocery store parking lot. Mum's friend said that J had talked to her so long, her bananas had turned black, and for whatever reason, as her disease progressed, this story became funnier and funnier to her, and just reminding her of it was a guaranteed smile.

People want to show compassion. They want you to know that they care. For me, this means that people often ask me, "How's your Mum?".

I hate to say it, but I absolutely dread that question, because I haven't the foggiest clue how to answer it. Do I go with the quick stock answer (such as one would give when asked "how are you today?" by an acquaintance in the street- "Fine", we usually say, even when maybe things aren't so "fine"), or do I really tell them what a personal hell it is to watch someone you love disappear, slowly but surely, right before your very eyes?

The stock answer, btw, is usually "Oh, you know ...", or "Well, she looks like my Mum, but she's not really herself anymore."

No answer I ever give feels truly satisfactory.

As I have been known to say in the past (and will continue to say in the future, no doubt);

"Alzheimer's sucks."

'nuff said.

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