JOAN’S WEEKEND BLOG- NOVEMBER, 17/18, 2007 – THE PROFESSIONALS NEED TO LISTEN TO US – SPOUSES OF AD PATIENTS - SPEAK UP FOR WHAT YOU NEED.

Let me first say that Sid and I do have a caring, competent, devoted group of professional social workers, doctors, and nurses supporting us with information, advice, and padded shoulders to absorb the tears. Without them, we would be in, as Richard Taylor, Ph.d, has termed it – Dementia Divorce Court, and I probably would be curled up in a fetal position in a padded cell somewhere.

However, I believe that we AD spouses need to let the professionals know that our issues ARE different than those caring for a parent or grandparent, and we need support on an emotional level. We need Spousal Specfic Support Groups, in which we can share the anguish of AD induced marital deterioration, and the anger, loneliness, and guilt that accompanies it.

Most Support Groups focus on what I call the “mechanics” of caregiving. How can I get my spouse to take a shower? How can I “AD proof” my house to prevent wandering?  How do I speak so they will understand? All of these are very valid issues. Many I have dealt with in my Blogs, and will continue to do so. We can all use caregiving tips that not only are valuable, but often are sanity saviors.

But my focus is on the marital relationship – A strong, loving, passionate marriage remains so when the partners communicate, compromise, and empathize with each other. AD destroys that ability. So when a social worker says to me – ignore the pouting – why should you care if he pouts? When I am told – don’t discuss; don’t argue; you can’t compromise; you need to communicate on a child’s level – and then I am asked again – Why should it bother you if he’s angry or upset – just walk away- that is when I say – It bothers me because every time I “don’t care”, “can’t discuss”, “can’t compromise”, “can’t communicate on an adult level”, it destroys another piece of our precious relationship. This is what the professionals need to understand. It is for this relationship breakdown that we need support and advice. Maybe there is no advice besides – This is AD; accept it and move on. But we need groups in which these issues are discussed.

I know this because of the positive response this website has received; I know this because of the e-mails I receive; I know this because when I speak in front of a group, spouses respond with affirmation and thanks; I know this because spouses in my Support Group get together away from group to discuss these issues. If I know this, and you know this, why don’t the professionals address it?  

Below is an article that will give you a chance to let your story be heard. I encourage all to participate:

ANNOUNCEMENT: LOOKING FOR YOUR STORIES -  From Boomerbeat Lifestyles Magazine, November, 2007 – “The Alzheimer’s Association, Southeast Florida Chapter is calling for caregivers or family members of persons with Alzheimer’s Disease to share their stories and photos as part of its “Faces of Alzheimer’s “ exhibit at the Garden of Goods Galleries Dec. 6-8.”
  
“The stories and accompanying photos should address the following questions in a maximum of 500 words:
       When did you suspect your loved one had Alzheimer’s disease?
      How did you respond?
      What were your feelings and fears?
      How has being touched by Alzheimer’s disease affected your family?
     How did children in your family respond to the person with Alzheimer’s disease?
     How did you cope with being a family member/caregiver?
    What lesson have you learned as the caregiver/family member?
    What do you want the world to know about Alzheimer’s disease?

Stories may be submitted to ellen.may@alz.org or as a hard copy to Dee Decker at the Garden of Goods Galleries, 12330 SE Dixie Highway, Hobe Sound, FL 33455. Submitted pictures will not be returned, so copies or electronic versions are recommended.”

Writing this in 500 words or less will be quite a challenge, but I am planning on submitting my story. I invite you to join me and submit your story. It is our chance to let professionals know just how destructive this disease is to marriages, and how desperately, specific support groups targeting spouses’ EMOTIONS are needed. It is also our chance to let other spouses know that they are not alone in their feelings.

Feedback to joan@thealzheimerspouse.com

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