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Friday, 25 March 2011

Alzeimer's – Our Final Chapter???

By William Weatherstone of The Diesel Gypsy

Since my wife entered a private retirement/nursing home, I have encountered a multitude of new requirements to enter a government assisted nursing home (for life).

In the beginning of this disease, we had to register for entry to an attached nursing home to a hospital which, of course, had a waiting list a mile long. That was my eye opener to the extent of this disease for which I had no idea, but learning fast.

I could not go ahead with any plans concerning Muriel’s necessities without having the power of attorney, which I investigated and acquired. Ready to proceed, I was shot down again dealing with government red tape.

I learned that the power of attorney comes in two parts. One is to take control of an individual’s property such as banking, disposing of properties, wills, etc. Now I find out that it does not include power of attorney over health and welfare.

So I cannot enlist her in a home without her consent. I have a doctor's report stating that she cannot make rational decisions on her own. Now I am spending more days of frustration trying to put the proper paperwork in order.

Living in northern Ontario, Canada, there are not all that many location choices to choose from. In this province, I was given three choices of preferred locations in our area. Our own town of Elliot Lake was the first choice. Blind River was my second choice, but is 60 km (36 miles) away.

After touring the third choice 160 km (100 miles) away, I strongly rejected that location. I approached the proper controller with this decision and was given permission to choose a location outside our territory. It is about 130 km (about 78 miles) in the opposite direction from here.

I toured the facility and approved it. That was over a year ago. Since then the rules were changed to allow five choices, but the extra two were too far away to consider because they are not attached to a hospital.

In any case if the location is out of town, I will uproot and dispose of everything and then follow her to wherever she has to relocate to.

In our particular region, if you cannot afford the horrendous cost of a nursing home, you may apply for what is known as a forced separation between married couples (financially). This is another tool that I had to learn about from scratch.

We only have the old age, government pensions coming in which was not enough to carry the cost of the private retirement/nursing home. To raise our income we were instructed to apply for the forced separation so as to raise our separate incomes to single status which gave us a considerable increase as two single individuals.

We barely scraped by getting her into the private home with our combined income, which consumes all of hers and a portion of mine. I also have to supply her accessories, such as diapers (Incontinence) and toiletries out of my portion as well as maintain our apartment and living expense. It’s called scraping the barrel.

It has been over a year now in the home, but we are slowly moving up in position for the hospital locations. The way it works is that as each of the selected locations has openings, your name rises up the list. Sometimes, if you are in worse condition than those above you, they will move you up past them in position.

If the third choice comes available first, you must accept the move. If you turn it down, you cannot reapply for six months and then you start at the bottom of the list again. This can take years.

Once you accept the first opening, you can still stay on the waiting list for your favoured location and then be moved there when the time comes.

I will accept the first offer and stay with it. I feel that the move will be traumatic enough for her and would not take her through that a second time. It was hard enough getting used to the first location.

The advantage of the government assisted home is that they are attached physically to a hospital and can service any emergency on the spot whereas her private location has to call an ambulance when required.

The final advantage is that they will take all of her pension which is still far below the actual charged residence fee, and supply everything for her well being. It is a shared room but you still get the same attention as a single private room.

It will save me hundreds of dollars each month for supplies and certain drugs. They will leave $100 dollars off the pension for hair dressers or TV cable or phone.

Wherever we end up I will be within walking distance of her. The cost of transportation will be zero.

I am still wary of problems regarding paperwork and procedures. It seems that the unexpected always pops up when least expected and you go crazy trying to keep up with the new surprises.

Now we are still playing the waiting game. In the beginning, I asked the question, how long does this disease take? Answer: It could be one year or 20 years. My response was, we don’t have 20 years.

So in the meantime we are waiting, waiting and still waiting.

Muriel's Wheels

NOTE: At the time of this writing, my wife’s nursing home is in lockdown because of a viral infestation. I cannot visit her daily until the virus is dissipated. The waiting, waiting and more waiting goes on.

[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


Hugs from here. We did all this recently with an old friend.

Thank you for sharing this. I'm surprised to learn that Canada, too, takes all your money if you have to go in a nursing home; I thought Canada's national health care covered nursing-home care. That notion of a forced separation seems kind of cruel to me; why bother? Why not just some sort of certification? I hope you can give yourself credit for the fine job of caregiving you are doing.

Oh William, I am so sorry for the stress you must be enduring.

I, too, was surprised that your national health care doesn't pay for everything. This disease is horrible robbing Muriel of her identity and you of a happy retirement.

So sorry for what you are going through. Thank you for sharing all this information. I plan to copy this for my friend who may be facing this in the future, if and when the care of her husband becomes too much for her, at 80, to continue to do.
You are helping others!

When I trained to be a hospice volunteer back in 1999, one of the veteran nurses with the program pounded into our heads the absolute necessity of setting up a revokable living trust that assigned medical and financial powers-of-attorney.

Unmarried at the time (and soon to be so again), I asked my closest two friends to be my successor trustees.

Now that I am in my 60s and far more educated about the pitfalls of our medical system, I can see that putting such heavy responsibilities on friends who are my age could very easily become an unreasonable burden.

I have no children, so it is up to me while I'm still fully engaged to plan my dotage. I'm now investigating continual care retirement communities (CCRCs) in California, which seems to have a good regulatory framework and a highly involved, activist CCRC consumer group.

The idea is I'd go in while healthy and be carried out feet-first. The entry fee is quite steep, the monthly fees expensive, but no more so than if I were in a nursing home and certainly a nicer place than an all-Medicaid home. And, in California once you're in a CCRC they can't kick you out if you run out of money.

I'd be interested to hear if anyone in TGB-land lives in a CCRC and whether you think this is a good alternative to letting the system beat you down, which it surely will.

I am glad to see this update, though very sorry for the situation that you have. I hope that you are taking good care of yourself. It is so common for caregivers to forget to take care of themselves. I wish you the best in this journey.
The cost, both financial and on the caregiver, is monstrous. I am in a similar situation with my husband. The money is flying out the door!

Your narrative as the other writers have said is very valuable and instructive..good karma to you for holding up and being what we all hope we could be as a loyal partner..

So many wash their hands of this responsibility, send their loved ones off to... whoever knows where... and go on with lives of their own. I admire your loyalty to your spouse, especially because she wouldn't know the difference if you were with her or not.

You are an unsung hero. Stay strong and know that you can lay your head on your pillow at night and know that you did your best.

Thank you for this timely reminder re getting Health Advocacy in order and also investigating possibilities long before they become essentials.
Many Thanks - Good Luck and keep strong.

Thank you for sharing this vital information from the trenches of taking loving care of your Muriel. The complexities are mind boggling. Do take care of yourself through it all.

Stories like this strengthen my determination to provide for my own Final Exit before I reach the stage where I am nothing more than a constant financial and physical burden. I know that my husband, if still living, would do everything for me (and I for him) that William is doing for Muriel, but I hope I can read the handwriting on the wall in time to spare him that, whatever life-ending illness may befall me.


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