I attend a support group for caregivers of people with Alzheimer’s and other dementias. It is offered through Alzheimer’s Orange County. I think it is the fourth support group I have attended.
Another Alzheimer’s caregiver recently said to me, “I don’t need a support group. I’ve already learned everything.” I didn’t bother to continue that discussion. Sometimes it isn’t worth the energy to explain something. This was one of those times.
What is the purpose of a support group? What goes on at one? Is it a waste of time to attend one if you already know everything? And probably the most pressing question, why has this woman attended so many support groups?
The purpose of a support group is for people with a common problem or situation, in this time caregiving for a person with any type of dementia, to meet, talk, and yes, provide support for each other. I have wonderful friends who are supportive, but unless they are also caregivers for someone with Alzheimer’s they cannot understand that experience. I have a good friend who has two sons with autism. She attends a support group with other moms of children with autism. Over the years we have discussed that even though we are both caregivers, we cannot understand everything about the other’s experience.
It is such a help to talk to others who can relate! In a support group, the other attendees don’t say things just to be nice. They understand when you say how angry you were at your spouse or parent and they never say, “It’s not their fault.” The caregiver knows it isn’t the other person’s fault; a well-meaning person isn’t telling us something new. We feel much better hearing that others feel the same way or share a common problem.
At a support group people talk and share as much as they are willing to share that day. It changes every time. Someone might have a good day one month and a horrible day the next time we meet. Sometimes people cry and we always laugh about something! We eat! Lately I make sure I bake something for our meeting. Another woman brings candy. Food helps. It breaks the ice with new people and soothes the soul. I bake enough that someone can take home leftovers, easing the burden of other caregivers.
I never go to a support group meeting expecting to learn something. I frequently do, but it isn’t a goal I have for the meeting. I never think that my time has been wasted if I didn’t learn something. What is reinforced at every meeting is the strength of the human spirit. Every woman and man in that room is strong. No matter our age, we are going through something we never thought would happen and we are watching someone we dearly love live through losing their memories and sometimes behaving in ways that make them unrecognizable. While we handle this, we are handling everything else we handled before plus adding the other person’s responsibilities.
People do come to the group with questions frequently. They ask what to do about a specific behavior or what others know about a prescription. Everyone shares their knowledge. What I have learned is that what is difficult and almost impossible to handle alone can be handled with the support of others.
The first few groups I attended were groups for my husband and I to attend together. Everyone started out as one group, then we split into a group of caregivers and a group of people with mild cognitive impairment or early Alzheimer’s. The first group wasn’t a good fit for our schedule. The second group morphed into the third group and added new people. I became less comfortable. People knew my husband and I felt like I was being unkind to him if I talked about things that happened. A support group isn’t helpful if you can’t talk openly.
For about a year I didn’t attend a support group at all. I felt the need to connect with others in a similar situation and decided to try a new group. This one is very close to my house and meets only once a month. It is only for the caregivers and it’s a good fit.
There is one thing that every support group has had in common and that’s a really good group of people. Or course I wish we’d met because we all won the lottery but that’s not the case.
Should you be in a position where you are a caregiver and a support group is available, I encourage you to try it. If the first group isn’t a good fit, try another one, but reach out and support others while being supported yourself.
EDITPRS NOTE: If you have considered a support group but don’t have the time or the ability to go to an on-site group, we’d love to have you join our family caregivers support group on Facebook. You can find it here: https://www.facebook.com/groups/CaregiversConnect/
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I was ORDERED to go to support groups by my mother’s lawyer. This is what I found.
At the Alz Assn…”no that one is for caregivers who bring their person with them.”
At Kaiser Permanent… I am the only person to show up. Am shown a power point presentation and later talk to the “leader”. She is so impressed with me she says I should come address her night support group.’
At Avenidas in Palo Alto… the group sits around large table, perhaps 14 caregivers.Went twice to this one. We go around and introduce ourselves and describe our situation. There seem to be two therapists. Since it is so hard to get away for caregivers, everyone is new and needs to do the introduction. Depending on what one says, one of the leaders goes through file box and brings out a tips sheet or list of contact numbers. By the time the hour is over, we have hardly done introductions.
There was a pretty good one at the Morgan Hill Senior Center I went to years ago..but again, usually there are so many introductions that there is little group interaction. Another group was suggested to me…this run by APS in the county, the very agency that ruined my mother’s life with Public Guardian system. I just about had heart attack when I learned of that group.
The other support group recommended was a PTSD group…which I searched and searched…for really one can get into that mode, complete with flashbacks. OK, almost all have to do with veterans problems, or those who have been sexually abused as children. So that eliminates almost all groups right there. Even on line, there were variations of PTSD, and thought “compassion fatigue” seems right, though somehow demeaning. Oh, I am too tired of caring. No, that is not right. Anyway, this pertains therapeutically mostly to those who are ER nurses, CNAs, hospice people, vets, doctors… and organized help is directed mostly to them.
I have been on many online forums and many turn into rant fests…cause nobody in real life wants to hear the problems, nor get stuck in the morass if they do offer help. I ended up creating a FB group that is secret AND private. … and was lucky enough to have a group of friends and professionals and some long time caregivers, hospice people even… there was doctor, a few nurses, some were nursing home admin people… one gal ran a private caregiving cottage… some professional writers I had worked with, two owners of caregiving websites.
A good book by a woman who runs support groups, and seems to keep them together is “Speaking Dementia” by Frena Gray-Davidson. Think she has website. Have not heard from her in awhile..and she generally does not let things get to “ranty” if I recall. One member of my FB secret group actually had her caregiving crisis come up and used Frena’s info as blueprint on how to handle the situation…
Anyway, Mom a year ago. Oh, no support group at the nursing home, though I tried like crazy to get her outta there and into a dedicated dementia facility…two good ones in the S bay…but no luck. They had wonderful family support groups, parties, etc.