Sunday, August 9, 2009

Caregiver Aids #10: Support Groups

Don't we all want to be in the company of others who understand deeply what we're going through? Who "get it" because they've been there too? And, specifically for caregivers ... To spend time with others who, like you, have had to live through the diagnosis, progression and challenges of life with an MSer, an MSer who is spouse, child, parent or friend?

I've been part of an MS Caregivers Support Group for ~3 years. It meets monthly, and I make a point of going unless I have an unavoidable conflict. There are usually about 4-5 caregivers and a facilitator, though last Thursday's meeting had 8 caregivers in attendance.

The group is funded by the National MS Society who pays for the facilitator's time. He is a psychologist who is part of the group of practitioners that participates in the weekly MS Clinic I wrote about last month. I had heard of this group while in the waiting room on one visit or another, but it actually took me years to decide to find out more about the group and start attending. I think the trigger for me was finally acknowledging that I was becoming overwhelmed and really needed others to talk with who were facing similar issues in their lives.

During last Thursday's discussion, one of the caregivers mentioned that she really had wanted to come that evening because she knew we would understand what she's going through; that level of understanding was absent in her interactions with others who have never been caregivers.

That's how I feel about the group. Skip and I have understanding and supportive friends whose company and friendship we need in our lives. But there's nothing like the understanding you get from someone who is another MS caregiver. It's great to be able to meet with the group, do a roundtable of "checking in" and be able to talk about your current state in life, hear what others are going through, and have a free flow of reactions and dialogue based on whatever we each bring to the table that day.

I wondered how many caregiver support groups, especially those that are for MS specifically, exist in the US. I went to the NMSS site and drilled down from there to the new england chapter site. After about 8 or 10 clicks, I found two support groups in the greater boston area, including the one I attend. I wondered if other regional sites contained such info. I searched in California, trying out the LA and San Francisco area chapters, then the Connecticutt chapter. I found stuff for caregivers, but no support groups specifically in any of those three sites. Perhaps a direct call to a specific chapter could yield information.

On the national NMSS site, in the section for friends and family, the sidebar navigation included links to some national caregiver sites. I went over to two of them, the Well Spouse Association and The latter is totally commercial (IMO) and looked like it was set up to sell a particular book and seminars to support the vision of caregiving outlined in that book (the seminars had a modest cost for enrollment). The Well Spouse Association is a foundation established by Maggie Strong, who wrote Mainstay, about her experiences as a well spouse to her husband with MS. This group has support groups all around the country that are sponsored by volunteers. It listed a couple of contacts in Massachusetts. There are definitely possibilities out there to research for support groups, especially if you live in a major metropolitan area in the US. The WSA-sponsored groups, though, won't specifically concentrate on MS.


Herrad said...

Hi Cranky,
A MS caregivers Support group would be excellent but as far as we can see not available here in Amsterdam.
ps Think I need to investigate will let you know.Could be helpful for Richie.

Cranky said...

Herrad - hope you can find a group for Richie. I really enjoy my group.

awb said...

I wish the wife would go, the local meeting is right here in our neighborhood! She doesn't look at herself as a caregiver yet. I brought it up to her last night after reading this, and she started crying. I think it would do her good, me too.


Cranky said...

Andy - it's a hard thing to accept that you're a caregiver, even when you've been playing the role for a while, so I can understand her reaction. Pretty great the meeting is so close (if she does take advantage of it).

Richard Anderson said...

Dear Cranky:

Thanks for the mention of the Well Spouse Association, . It is true that we are not exclusively for spousal caregivers of MS patients, but about 30% of our members do have spouses with MS.

What we offer par excellence, is the emotional support that spousal caregivers, with their special intimacy relatonship with their partners, eventually come to recognize they need.

Studies have found that of all family caregivers, spousal caregivers are the last to self-identify. No wonder our mottos are: "You are not alone" and "When one is sick, two need help".

I also write a blog on Care Pages, here:

Cranky said...

Richard - thanks for your note. I'll check out your blog, too.

Patrick @ Caregivingly Yours said...

Years ago I gave it a try. If memory serves me correct it was sponsored by Well Spouse Association. Basically the problem was that NO ONE was dealing with the level of caregiving that I was. It was night and day. People did not really want to know about what could be their future.

Caregivingly Yours, Patrick

Cranky said...

Patrick - sounds like they were not able to give you support. You probably scared the bejesus out of them! The group jokes that we scare off first time visitors, many of whom do not return for a second meeting.

wellspouse said...

Patrick (Daddy Leer):

Years ago the Well Spouse Association was a different organization. There are a number of people now whose ill spouses have high-maintenance level MS just like you. What we offer is emotional support through local area support groups, and/or an online WSA Forum and we aim to help people regain some measure of balance in their lives, so that their caregiving is not 24/7 all the time. -- the need for respite breaks.
BTW, you have put a lot of work into your site -- it's very good.

Cranky said...

Wellspouse - thanks for your compliment. I know your comment was intended for Patrick, but I think I'll prowl a bit on the wellspouse site to see what more it has to offer.