JOAN’S BLOG – MONDAY, MARCH 17, 2008 – TO GO OR NOT TO GO – WHAT TO DO ABOUT SUPPORT GROUPS

The issue of whether or not to attend a “face to face” support group was raised this weekend on the Message Boards. I addressed it briefly in a post, but based upon the e-mail I receive, it seems to be a problem with which many people are wrestling.

There are a variety of different types of groups, but most of you who write are referring to “Caregiver Support Groups”, so I will address that topic today.

Almost every caregiver spouse in our group has voiced a variation on these statements:

“I came in here the first day looking warily at everyone. I didn’t think I belonged here, and I didn’t know what to expect.”

“I was a mess when I came in here the first day. I did nothing but cry.”

 “The first time I came, I ran out in the middle of the meeting, got into my car, and left. I didn’t come back for two years.”

“I didn’t think I had anything in common with these people, and I didn’t think they could help me.”

Except for the person on the two-year hiatus, most of these people came back to the meetings and became regulars.

So if you are questioning whether a support group meeting is for you, as you are finding out throughout every stage of this journey, you are not alone.

Before attending even one meeting, you need to ask yourself what you expect to get out of it. Are you going for advice to help you learn how to deal with your spouse’s illness? Are you looking for information on Alzheimer’s Disease and its progression? Are you looking for emotional support?

Once you answer that question for yourself, call the Alzheimer’s Association (800-272-3900), and tell THEM what you need. Ask for a group in your area that is addressing YOUR NEEDS. If your spouse is in the early stages, and you go to a group whose spouses are in nursing homes in Hospice Care, you are not only going to be “freaked out”, as one of our group members so aptly put it, but you are not going to get your needs met.

Also, try to find a group that consists mostly of “spouses”. As we all know from this website, our emotional issues are completely different than those caring for parents. One spouse in the middle of a group of adult children caregivers will feel like the proverbial “fish out of water.” But the general information on Alzheimer's Disease that is dispensed at any of these meetings, whether for spouses or other caregivers, is invaluable. You would be amazed at the wealth of resources available that so many different people can inform you about.

If there is a group that you feel will suit you, I urge you to try it out more than once. It may take a few times for you to get the “feel” of it. If, as many of you have said, you don’t think you are ready for it; you don’t “mesh” with the other members; or you are just plain uncomfortable with a “face to face” group situation, you do not have to return.

I was desperate for help when we joined our group – I needed information, advice, support, anything I could get my hands on. I was at a total loss as to how to cope with this “stranger” Alzheimer’s Disease had dropped into my life. 

As those of you who read my Blogs regularly know, my Support Group has become my lifeline. I received the information and advice I was seeking, as well as a lot of hand-holding when I needed it. In return, I am now able to give the same to others.

Many of us have become friends outside of the group. We share and understand each other’s problems as only those going through the same struggles could. These are friends with whom I can laugh, cry, give and receive emotional support, and just plain have fun if we choose.

I feel the need to mention here that my group does not just consist of female caregivers with AD husbands. There are many caregiver husbands of AD wives. It is just more difficult for the caregiver guys to get together and “bond.” You men aren’t much for “bonding” . Don’t think that stops us women from trying. We are on the phone with the caregiver husbands offering whatever support we can.

It is possible that there are no groups in your area that meet your needs. If you are the industrious type (a.k.a. – pushy?) , you can lobby for a new group. Ask the Alzheimer Association social workers if they have had other calls for the type of group you want; ask them to contact those people; find a facilitator, and start a group!

“Face to Face” groups are not for everyone, but I would urge you to give them a try. You have nothing to lose, and you just might gain a whole new group of friends.

Please post comments under existing Message Board Topic: Live action support groups

Feedback to joan@thealzheimerspouse.com

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