JOAN’S BLOG, TUESDAY, MARCH 18, 2008 – THE IMPORTANCE OF SUPPORT GROUPS FOR THE AD PATIENT – IT’S ABOUT SELF ESTEEM

Yesterday’s Blog discussed “Face to Face” support groups for the caregiver spouse. Today is about support groups for your AD spouse. HOLD ON! WAIT! I can hear you now –

“My spouse won’t even admit there is anything wrong with him – how do you expect me to get him to a support group?” 

“My spouse is so full of anger that she will not even discuss it with ME, never mind strangers.”

“My spouse wants to maintain her privacy – she doesn’t want to share any of her anxieties.”

I know. Believe me, I know.  But I ask you to hear me out on this. This familiar scenario is played out often in our support group. We go around the room and introduce ourselves.

New Guy #1 – Arms crossed in front of him; scowl on his face – “I don’t know why I’m here.”  

New Gal #1 – He made me come. He’s bossy.  

New Guy #2 – I came this time to keep her quiet, but I’m not coming again.

New Gal #2 – I have nothing to say.

One of the most painful aspects of Alzheimer’s Disease is standing by and watching helplessly as it shreds our spouses’ self-esteem and feelings of worth. They lose friends because they are not able to “keep up” with conversations and activities; they lose their abilities to provide financial assistance to the family; they lose their initiative to plan and organize simple activities; they lose their abilities to share in meaningful household chores. How would you feel if this happened to you? My husband’s answers are unprintable, but the sanitized translation is that he feels he has lost his self worth.

The support group he attends has given him back some of his self-esteem by demonstrating through listening to others, that he is not alone in his struggles, and by giving him opportunities to share activities with friends who need the same extra time and explanations as he does. Having something to look forward to, whether it be lunch, fishing, or helping a friend with instructions on how to hook up a TV to cable (It took awhile, but they did a pretty good job of getting that thing working) , is far better for his mental and emotional health than sitting alone in front of a TV all day.

I believe that some of the rage and anger displayed by our spouses is in part, due to the frustration of isolation and boredom. Especially for the EOAD patients – imagine what it is like to be in your late 40’s or early 50’s, and have no work; no activities; no friends, as well as being confused and forgetful. I know that Sid is in a far better mood when he has an outing with friends to look forward to. 

I also know that support groups for the AD patient are not the norm, but they are so important. Just as I urged you to try one out for yourself, call the Alzheimer’s Association (800-272-3900) and find out if there is a group in your area for your spouse. If there is one available, I never said it would be easy to get him/her there. That’s where your creativity will have to come into play. Notice that I have no creative solution to offer – some of the spouses I know just dragged their husbands/wives, yelling and complaining, to the meetings. Some never returned; some enjoyed it and came back.  But as with the support group for you, it is well worth a try.

Feedback to joan@thealzheimerspouse.com

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