JOAN’S BLOG – MON/TUE, APRIL 12/13, 2010 – THE EVOLUTION OF AN AD SPOUSE

There is not one of us who looked in the “help wanted”  section of the newspaper and sought out the position of AD spousal caregiver.  The job comes with no salary, no vacation days, no sick days,  immense stress, and unimaginable heartache.

None of us had a choice in taking on the job, but I took it on willingly, thinking I would always be caring for the man I adored, and that his memory would slowly fade until he died. I, and perhaps most of you, had no idea what was ahead. We had no idea that the person we loved would disappear long before the disease claimed their lives. We had no idea of the personality changes, rages, loss of reasoning, judgment, and conversation. We had no idea of any of it. At least I certainly did not.

In researching information to write this blog, I found “Stages of Caregiving” were defined as: #1.Learning about the disease and how to be a caregiver; #2.Finding help;  #3. Heavy care – feeding, changing, dressing, managing, etc. #4. Letting go – relinquishing the care to professionals. None of this was what I was looking for to discuss what I have gone through since the life altering diagnosis.

My April 8/9 blog on Throwing in the Towel (scroll down to read blog) and your responses to it ( Message board topic: – Joan’s Wednesday Blog- Throwing in the Towel) gave me much to ponder about where this journey has taken me. I realized how far I have evolved in my education, adjustment, and acceptance, which is more related to the “emotional stages of caregiving” that I wanted to discuss.

Looking back through my blogs, I am able to clearly see the stages I have slogged through. Many of you have experienced the same. Many of you are cheering that I have finally reached the acceptance stage. I am simply surprised at how much I have evolved. My stages may not be the same as yours, but there will be something in all of them that you recognize and to which you can relate.

1. Shock and confusion -but not the way you think. I was not shocked that he had the disease. I was shocked at what the disease turned out to be. I thought he would be forgetful. It was the sudden, and in his case, it was sudden, irrationality, inability to reason, and lack of judgment, that sent me reeling. I could not understand what was happening. I had no idea that screaming at store clerks, making no reasonable sense during a discussion, or ensuing temper tantrums were part of Alzheimer’s Disease.
2. Trying to fix it – I wanted my old husband back, and I thought that calm, rational discussion would bring him “to his senses”. I tried and tried and tried. I consulted social workers, psychiatrists, psychologists, and neurologists. This went on for over a year. All to no avail. I finally accepted that my husband was not coming back.
3. Mourning the loss – I sobbed and cried for months that my husband, our relationship, and our old life was gone. I was so depressed I could not get out of bed in the morning. For the first time in my life, I was put on an anti-depressant. After another year or more, I finally accepted the loss.  
4. Adjustment – Those of you who live with a spouse with Alzheimer’s Disease know that there are constant declines and losses of function. With each one, we caregivers must adjust our expectations and care management. We also mourn each loss as if it were the first one. But we adjust to the realization that this is the manner of our life.
5. Acceptance – I have been told since my first day in Support Group that I will never have peace until I have acceptance. As recently as last week, our member Starling, responded to my “Throw in the Towel” blog by telling me that adjustment was not enough; that I need to find acceptance. It has been 8 years since the first subtle symptoms appeared; 7 years since we both knew there was a definite problem; 5 years since misdiagnosis; and 3 ½ years since diagnosis. I continue to adjust to all the changes, but I have finally reached acceptance. I cannot change our Alzheimer future. I cannot say I will not have my angry, impatient, heartbreaking, and furious days. I will. But maybe this new found acceptance will help me deal with it better than I have been.

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The Alzheimer Spouse LLC
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