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Monday, 13 July 2009

Alzheimer’s: Part 1

By William Weatherstone of The Diesel Gypsy

My name is William (Diesel Gypsy) Weatherstone. All is fact, as it happened.

A brief rundown of my background is that I have retired from highway transport after 50 years over the road. I am 73 years old, with no family on my side - children, brothers, sisters, parents – none, and the two nearest living friends are 450 miles away to the east and the other, 2,000 miles farther away in the opposite direction.

My wife of 45 years is 79, with one brother 400 miles away who apparently has no interest outside his immediate surrounding family. So much for that. We are on our own here in the North Country (Canada).

My previous knowledge of Alzheimer’s has been little to nothing. It was something that slowly crept up on us. My wife used to look after our banking while I was on the road and into retirement, doing a great job. Just last year, she started to have entry problems and asked me if I would take it over again. Without question, I did.

From there, I started to notice little things in her speech as well as forgetfulness creeping in. Our annual medical was due so we went together (at her request) and I mentioned it to the doctor. She gave my wife some simple tasks to perform and a few questions to answer verbally. The outcome was, either progressing dementia or Alzheimer’s disease.

I questioned the doctor on the side and asked the difference between the two. Dementia, apparently, can carry on for years and years. I was informed that it could be one year or 20 years. Shocked, I said that I don’t have 20 years. If anything happens, she has to go first; after that it doesn’t matter what happens to me.

We went to Sudbury, Ontario (120 miles east of here) for a CATscan and it proved positive.

She received new drugs to help retard the disease, but new things started creeping in quite fast. It was too fast for me to grasp.

I had a rotten few days as she developed a virus-type symptom, throwing up constantly. I had to call for an ambulance to take her to emergency. She was there eight hours and stabilized. Me? I was a nut case.

A few days later, while I was talking to her, she passed out and again I called 911 in a panic and had her transported to emergency. It was a little more dramatic this time. They found out after extensive testing that this time it was a mild heart attack. It was five days before she was released to go home.

Since then, my world has been turned upside down. Neither of us has been in a hospital overnight and rarely sick other than a bad case of flu now and then over the years. Since getting our annual flu shots for the last ten years, all has been well.

On a daily basis she started the downhill slide. She was up and down, out of bed every ten minutes or so and started wandering around the apartment. Scary! I was lucky to get two hours total sleep a day for the next three days.

I ended up calling the doctor for help with my own health. I was stressed out completely and ended up getting a couple pills to relax me and reduce the mental stress.

From there, I found out from the doctor that help was available. The Red Cross made a sitter available for me two hours a day, three days a week. It relieves the anxiety for a short time. Any relief is welcomed no matter how small.

You have to realize that bringing in a stranger to be a companion and then taking off could be critical. I made it a point that I would be there for the first meeting of the sitter, to check her identity and compatibility between the two. Fortunately all went superbly and I felt no pressure leaving them alone together. Since the first meeting, we have requested the same lady on a continuing basis. To which she agreed. All was compatible.

From this point on I have become our household’s official Mr. Mom. I do it all now, bathing and dressing her, shopping, laundry, housecleaning, cooking, car repairs and anything else that comes along. I must add here that she, no mater what mood, is still in control of her body functions even if robotic. It works for me and is the one function that could drive me over the edge trying to clean up after. Hopefully, in time, I can adjust to the problem. Who knows.

From that point, I now have a greater respect for the woman who takes care of the household as well as her man and/or kids. It is no easy chore.

Since being involved with this medical problem, which I had assumed was rare, I have come across many, many people who have been through this devastating experience. I have heard horror stories about how the caregivers went almost insane as the patient had no concept of what he/she was causing. As well as some cases where the spouse just got up and abandoned the patient. This new generation's attitude certainly is not old school.

This space is not the place for me to describe my thoughts about these abandoning-type people; my disgust is extreme and I would be censored and even possibly sued for defamation of character or some other weird political correctness.

I feel that perhaps I should chronicle my experiences from this point on, and try to describe what happens on a daily basis. The simpler the better as I am a trucker, not a writer, so I will try and describe events as they actually happened.

Who knows; perhaps someone else new to this experience may benefit from what I have learned as I feel my way through the destructive labyrinth of Alzheimer’s Disease.

Not having the experience of raising any children of my own, it seems at this late stage in my life, that I am now having that experience through my wife.

All of these events have progressed from the last six or seven months. Now, as far as taking her out in the car, I have to hold her hand to stabilize her walk and then get her in the car and do up her seat belt.

When I had to go down town for a necessary trip, I had no one to sit with her so had to take her with me. The weather was in a torrential downpour for the previous couple days. I would keep her seat belt on and lock the doors, jump out and into the office for three or four minutes and back again heading home. No problem.

That is, until a couple days ago when I did the same thing but had to park two car lengths away from the office so I could not see the car. I ran in and (locking her in the car and strapped down in the seat) got held up for a couple extra minutes, ran back out to the car just in time to see her out and walking away in the opposite direction, scaring the hell out of me.

I yelled, she stopped, and seeing me, then came back. I asked why she had gotten out of the car. In the extra few moments, she got an idea that she was abandoned and I would not come back, so she started to search for me. She could not get her seat belt on by herself, but sure found away to get out when she really wanted to.

Now my time and appointments are screwed up unless I can get a sitter. I can’t take another chance like that again. I have now become a prisoner in my own home, with this child-like person who has become my guard.

Other things have crept in such as her obsession that I will leave and never come back. She will lay down for a nap while I am in the next room on the computer. She will sneak a peek at me about every ten minutes, just to make sure I am still around. This can go on most of the day and at times I feel that my patience is about to explode.

If I leave to go to the bathroom and am gone for more than two minutes, she will be standing outside the door to make sure that I have not left. The odd time she will slowly and quietly open the door to doubly make sure.

There is broadloom throughout the apartment and you cannot hear her coming; she is right behind me again. It drives me nuts. This process can carry on for almost forever, so I’m told. I just hope to hell that I am strong enough of mind and body to see this through.

I will try and chronicle events as they happen from here on. Hopefully, someone entering this stage of life will benefit from my experiences.

[EDITORIAL NOTE: 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 02:30 AM | Permalink | Email this post

Comments

It's hard to know what to say. You are certainly brave to be writing your experience through this very difficult time. I wonder if you have sought out a caregiver's support group--live, or on-line. Besides respite care, a support group could be very helpful. Thank you for sharing this intense experience.

I so respect you for telling your story and living this tough experience on your own. If you lived near me in Montreal, I'd go over and give you a hand. You are an angel. Montreal has the CLSC walk in clinics, with social workers, home assistance, and we also have meals on wheels. Check around your area for volunteer assistance. Take care of yourself.

I am so sorry this has happened to you both. We have a senior center here with a drop-in "daycare" for people with assorted dementias and/or alzheimers. Social workers might know of anything like that in your area!? Good for those uncovered appt.s or just a nap for you.

Yes, William, please contact your local Health Dept.and ask about services that might be available to help you.

Even if you have the wrong division of services, they are usually very nice and helpful and will lead you in the right direction to the person you can speak to about your situation.

Please call soon so they can start helping you as I am certain they will.

Good Luck,William, you are a good husband and I admire you.

In January of 2007, we began our long slide downward with our friend Duck. He had a largish group of friends, but as his dementia became apparant, they all faded away. After a number of falls, he could no longer take care of himself, and we had to place him in a nursing him. Over the next year and some, we grew to admire his dignity as all else about him vanished. We were there every day, and he's still fresh in our thoughts.

I do appreciate you sharing this story about your journey. My husband and I are traveling a similar journey, so much of what you describe is familiar to me. I have found the Alzheimer Association to be quite helpful, and support groups are wonderful for getting tips from others about how they deal with the challenges.My husband is not amenable to having someone in the home to help. He too, feels fearful of abandoment and being alone for even one hour. It does make for a challenge to get the usual chores for taking care of one's home taken care of. The very best of my wishes for patience and peace to you, my friend.

PS. I admire your website too!

I'm so glad you've found a little bit of help. As others have said, please look for more help in your community. Most importantly, if/when friends offer to do anything - say "Yes," and be specific about your needs. A casserole every now and then or just a friendly visit with your wife will be a great aid to you.

I never understood the how and why of support groups until I made this journey with my husband. Even with everyone telling me to "take care of the caregiver," I soon became the poster child for caregivers who don't. This was my responsibility, I told myself, I can't impose on others.

What helped most was a course given free at an AD resource center. It was called "The Savvy Caregiver." Then I understood, and when my husband reached the point where he no longer knew my name or the part I played in his life, I looked on it as an indicator of the progression of the disease, rather than a heartbreaking moment.

It wasn't easy for me to take that course. It entailed a two hundred mile round trip once a week. Fortunately, my husband was still able to be left alone for a few hours. I urge you to call the nearest AD resource agency. They have all sorts of information that will help you make it through this difficult tiime, as well as make you a better caregiver.

My thoughts are with you. And one more thing--there IS life after Alzheimer's for you.

I only know of 2-3 other people who have gone through this and your story parallels theirs. I am so sorry. Please know that your telling of this can help so many people now and in the future.

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