JOAN’S BLOG – TUESDAY, MAY 28, 2013 – IMPRISONED AND ABUSED

Recently our member, Wolf, wrote on the message boards likening the situation of an Alzheimer Spouse to that of an abused prisoner, which elicited serious thought on my part, and prompted this blog.

If you have ever watched the TV show, Criminal Minds, you have learned that some of the most cruel criminal torturers have brilliant minds. They are adept at subtlety, seemingly innocuous persuasion, have expertise in one or more fields such as chemistry, engineering, and computer science, to name but a few. The best of them have one more attribute – patience. They can stalk their prey, or hold them prisoner for many years before striking the final blow.

This is what Alzheimer’s Disease does to Alzheimer Spouses, often patiently for so many years, that we are not even aware of it until we find ourselves housebound, friendless, physically debilitated and lonely, having lost the ability to live in the outside world, to engage in conversation, to socialize. We are slaves to our captive, Alzheimer’s Disease.

I was absolutely sure that I could avoid becoming an Alzheimer abused prisoner. After all, I did everything right, didn’t I? I started this website to help other Alzheimer Spouses cope. I researched and learned all I could about the disease. I went to Alzheimer conferences, seminars, and a support group. For years, I networked with Alzheimer experts, and shared their knowledge and recommendations with you. Most importantly, I followed my own well worn advice to you – Do everything sooner rather than later. That is what I did, from getting all legal matters in order as soon as my husband was diagnosed, to moving to a continuing care community years earlier than I was ready, to sending him to Day Care before I thought he needed it. I applied for Medicaid well in advance of needing services, so when they were desperately needed, they were in place for him.

Yet none of my advance planning seems to have made much of a difference in my own emotional health. Here I am, mentally, physically, and emotionally exhausted from constantly tending to my husband’s physical and mental needs. No matter how much love, respect, friendship, and partnership there was before Alzheimer’s Disease, no one can withstand the total subjugation of their own needs for years on end. The love and the life shared for decades cannot make up for becoming the tortured prisoner of the ultimate Criminal – Alzheimer’s Disease.

My life has become what I have warned against since I started this website. In spite of my valiant efforts to find non-Alzheimer friends and activites, I have no social life, no non- Alzheimer friends close by, no outside activities, and no one with whom to converse. Oh, I have tried, but almost every time I get the chance to escape my prison, another emergency with my husband comes up, and I need to drive him to yet another doctor appointment. Or he doesn’t feel well enough to go to Day Care. Or there is a last minute incontinent situation.

There is no doubt about the need for placement for the betterment of both of us, but while I work that out with Medicaid, I am imprisoned and abused by Alzheimer’s Disease. And wonder if I will have the ability to rejoin the world when the time comes.

I must mention one light in the darkness of my life. I do have a friend with whom I would share a friendship even if she were not an Alzheimer Spouse. We try to find time to do SOMETHING fun occasionally, when she is not being called to her husband’s facility for an emergency, and I have a few free hours while Sid is in Day Care. We rarely succeed on the first try, but we keep at it. That’s all we can do.

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©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
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RECENT BLOGS:

What if it Were Me? - April 19, 2013 - My caregiving stress has led to impatience and grouchiness, which has made me think about how I would feel if I were in his shoes.

The Cardinal Rule - April 29, 2013 - A reminder, due to my lapse, to never, never, ever, try to explain a complex incident to your spouse.

Caregiving is a Killer - May 15, 2013 - A blog in response to the unthinkable tragedy suffered by one of our members, whose father, in the early stages of dementia, killed his wife, who suffered from chronic, unalleviated pain, and his daughter-in-law, (our member's wife), who was deep into Alzheimer's Disease, before killing himself.

Nothing to Say - May 21, 2013 - Attending a non-Alzheimer social function made me realize how isolated I have become.

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