Not deferential enough: Letting go

Posted Wednesday, October 19, 2011 in Opinion

Not deferential enough: Letting go

by Gina Hamilton

A friend and one of New Maine Times' reporters lost her husband this weekend, after a long, painful battle with Alzheimer's disease. 

Like any loving spouse, Avery first tried to nurse her husband herself, but as his condition deteriorated, she and he moved from less restrictive situations to more restrictive situations. When one couldn't work for whatever reason, and he would have to be moved again, he would spend weeks in the hospital until he was stabilized enough to risk another placement and a suitable placement could be found.

This took a toll, not only on Don, but on Avery, too. And it was a very lonely battle — she had to be there to sign papers, had to be there to calm Don, had to be there or on call 24/7, even after it was clear that he needed long-term, round-the-clock care.

There are different levels of dementia care in Maine, and very few could handle Don's unique needs, it seems. Some people will never need more than a little gentle assistance, a reminder that it is their granddaughter Mary who has come to visit. Some will need to be monitored constantly to make sure they don't wander away and get lost in the woods in January. And some, like Don, need robust, full-time nursing.

Avery basically put her life on hold for years while helping ease Don slowly out of his. And they, in a sense, were luckier than most, because they had the means to at least find care, even if it was not exactly what Don needed. They had some options.

Most people in Maine do not have those options. 

Possibly because of our aging population, more people die of Alzheimer's disease in Maine than in the nation as a whole. For every 100,000 Mainers, 28 will actually die of the disease, as opposed to 23 nationwide, according to the Kaiser Family Foundation. Many more will "live" with the disease. 

Reading some posts from those who are dealing with Alzheimer's in Maine without fiscal resources, many have help from kids and other family members who move in with the couple, and that often opens up more issues for both the impacted patient and the spouse. Others hope that Medicare will take care of all the expenses of a nursing home or in-home caregiver; it won't. Still others are quite alone, shocked by the diagnosis, and helpless to do anything about it. All they can do is make the best plan they can for their own future and hope it's enough, but they are still with it enough to know that it probably won't be.

Maine, understandably, has a strong Alzheimer's Association, but even so, it is virtually impossible to find everything a patient or the caregiver might need to get by.

As the patient moves through the stages of Alzheimer's, from the minor forgetfulness that could simply be part of growing older to brain impairment so severe that patients can't swallow or breathe, the caregiver becomes increasingly isolated. 

It is difficult to let go of the love of a lifetime. This cruel disease robbed my friends of a sweet sunset filled with laughter, travel, and shared memories. Avery will need help from friends to readjust to living again, and we will all be here for her. 

If you know someone who is going through this pain, do everything you can to help. If you don't know anyone personally, contact the Alzheimer's Association and help people you don't know with your dollars or time. 

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