JOAN’S BLOG – MON/TUE, JUNE 29/30, 2009 – UNDERSTANDING THE MEANING OF “I MISS MY HUSBAND/WIFE”

In the beginning, before I knew the full scope of what Alzheimer’s Disease would do to my husband, to me, and to our life together, I thought I was the only Alzheimer spouse who threw her arms around her husband, sobbing, “I miss you! I miss you! I want you back!” Those are some of the first words I wrote when I began pouring my feelings onto paper (Welcome Blog – July 07).

It is difficult to pull only one theme from the message board posts, but if I were pressed, I would say that  missing the spouse that we have loved and lived with is top of the list. No one tells us that long before Alzheimer’s Disease drains their physical and cognitive abilities, all of their memories, and returns them to an infant state, that their personalities will change, often to such an extent that we find ourselves living with a stranger. This has been a predominant theme in many of my blogs, but I took notice lately, that so many of you are expressing the same emotion on the message boards.

A drastic personality change is often one of the first signs that something is amiss, but is mistaken for depression, menopause in women, midlife crisis in men, and a host of other reasons. I have written that it is often the cause of divorce.

Many of us have enjoyed a close partnership of a marriage, one of love and mutual respect, one of compromise, humor, and sheer enjoyment of being with one another. What shock and confusion we feel to wake up one day to someone we do not recognize. In my case, it was the lack of rationality that shocked me. We had always been able to discuss each other’s occasional “bad behavior”, understand one another’s point of view, and compromise or change the behavior. But when seemingly overnight, he was no longer able to understand that he had done anything wrong (screaming at a store clerk; yelling at me because I did not wake him up to ask him how he was feeling when he had a stomach bug; throwing a tantrum because I asked him to sweep the kitchen floor while I was out doing errands), I was shattered. I pleaded with him to be reasonable ( In hindsight, that was quite a joke), alternated between speaking calmly, screaming at him, not speaking to him, and sobbing myself to sleep.

Who was this person? I did not like him. I was too ashamed of my feelings to share them with anyone. In sharing them with you, I have found that my situation is common to The Alzheimer Spouse.  “I miss my husband/ I miss my wife.”  I believe that is one of the strongest ties that binds us all who read and write on this site. We miss our spouse. No one but a spouse of an Alzheimer patient could have any understanding of how that is possible when our spouses are still living. We sit by helplessly and watch the person we knew disappear piece by piece.

As the disease progresses, there is no more rational conversation, often no conversation at all. There is no longer an adult with whom to interact. We are caring for a child in an adult’s body. We seem to no longer be spouses – We are caregivers. We miss our spouses.

I am grateful that all of you have found the spousal support and understanding you need on this website. However, there are thousands of spouses who are still suffering and confused, because their doctors did not advise them of what AD could do to their spouse’s personality, nor were they offered any specific spousal issue support. Not much of it exists out in the field.

Yet, I have been told, by those who know, that no matter how much our spouse changes -mentally, physically, and emotionally- and no matter how much we mourn each change, when death comes, we mourn again. We miss them again.

I have also been told by many who have seen this journey to the end, that there is life after Alzheimer’s Disease. As with any death, there is pain, sadness, and grief. But once one has worked their way through those emotions, there remains memories of the good times, and a new life to be lived.

P.S. AFTER I wrote and posted this blog, I noticed a new message board topic started by Sharan - Feeling Alone. She and the others who commented, are expressing the feeling noted in this blog. Please post all comments about this blog under that topic.

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 ©Copyright 2009 Joan Gershman

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