JOAN’S BLOG – TUESDAY, JUNE 10, 2008 – BECOMING LESS A SPOUSE AND MORE A CAREGIVER

When I was 21 years old, I became a wife. I didn’t give the role much thought at the time. It was 1970, and although I had just graduated from college, it was expected that I get married as soon as possible. That’s just the way it was. The women’s movement hadn’t grabbed hold of me – I had no desire to be an independent woman on my own.  I didn’t mind. I was madly in love, and I wanted to be with Sid 24/7 forever.

However, there was enough independent spirit in me to reject my grandmother’s and somewhat of my mother’s generations’ idea of wife as “servant to husband.” I didn’t take well to that idea. So we built a life together as partners, helpmates, lovers, friends, supporters of one another’s hopes, dreams, and ideas. We enjoyed each other’s company; we loved going grocery shopping together as much as snorkeling together in Hawaii. We talked; we argued; we shared the same values and political views. And if I couldn’t get him to see that of course my political position was the correct one, we agreed to disagree. I was secure in the knowledge that he would always be there to fix my financial blunders, navigate the way home, lift me up when I was down, cheer me on when I was up, and I would be there to do the same for him.

Then along came Alzheimer’s Disease. In the beginning, because no one tells you otherwise, I honestly thought I would remain his “wife” throughout the disease. I thought that his memory would continue to fade, until I had to bear the pain of him forgetting who I was.

Well, we all know how misinformed I was. Instead, I am watching the activities, ideas, conversations, and dreams slip away, as his comprehension, reasoning, memory, and judgment erode. Conversations turn into sentence by sentence instructions; decisions are made alone; memories of enjoyable moments of barely weeks ago, become mine alone, discussions turn into screaming matches because of his misinterpretations and inability to express what he means, and my lack of patience.  My role as spouse/partner/lover/friend is slowly morphing into that of mother/therapist/boss/caregiver.

It was only after we had started sliding into this Hell on earth, did a social worker share with me the words of a doctor she worked with – “As time goes on, you will become more and more of a caregiver, and less and less a spouse.” I suppose I would not have understood what she meant had she shared those words with me earlier. In any case, I certainly now understand that is the fact of Alzheimer’s Disease and marriage. And I hate it.

I read the Message Boards and cringe at what is ahead for me – I did pretty well in the role of “wife”.  As many of you have expressed about yourselves, I don’t think I’m doing so well in the role of “caregiver” or “care partner” or whatever more pleasant name some people choose to give it. I keep making miserable mistakes; keep wishing I could be more patient and accepting; keep trying to do better.

Those of you at the end of this journey have come to terms with it, or so you have told me. Those of you at the beginning of this journey, I share this knowledge with you so you will not feel guilty, ashamed, and alone if this metamorphosis of your relationship is making you miserable. And those of you who are in my stage – maybe you are coping better than I.

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