Again and again, Caring.com member caregivers talk about how their support groups save their lives (or, at least, their sanity). Literally, they say this: "My support group saves my life." "My support group keeps me sane." And Caring's geriatric experts often describe how they refer caregivers to support groups because they're among the few, but most critical, ways they can help families.
If you can't find one that works for you by calling your local Area Agency on Aging or asking at the doctor's office, you have another option. You can start your own: The do-it-yourself (DIY) support group.
If the very idea of "founding something" on top of everything else you're doing seems daunting, consider these advantages of DIY:
A group that you start is one that you can control the schedule and location. (Maybe you do it at your own home, so there's no travel necessary for you and your fellow caregivers wouldn't expect perfect tidiness.) If you live in a remote area, it may be hard for you to get to a big hospital-based meeting, yet there may be two or three other caregivers also in your area.
You can share with whomever you like. You can decide on the size, and whether it should be all kinds of caregivers, only those caring for someone with dementia, only women, only members of your church, or so on. A "support group" can be a fancy name for three friends who are all in caring situations and get together over coffee every Friday.
You can set the format. You might divide the time between sharing (a.k.a. venting) and learning, for example. Invite a guest speaker, perhaps from a local clinic or stress-management center. Or frame your support group like a book club -- pick books for caregivers or about the disease you're all dealing with. Discuss what you've learned -- then vent.
The Family Caregiver Alliance has pulled together a detailed how-to guide for those interested in starting support groups for families of brain-impaired adults.
If you've done this, please share any tips. Or if you're in any kind of support group, share why it helps and what you like about it, to help others structure a great and truly supportive support group.
Now nearly 4 years and only improving with the long term friendship of the carers who are gratefull for the work and enjoy the set-up and seem to be very fond of my ideal patient husband. Would't swap it for any alternative care now.
Caring.com now has a feature that enables caregivers to start their own support groups on this website: http://www.caring.com/support-groups Scroll to the bottom of that page and click the "Start Your Own" button to get started. You're also welcome to participate within the existed Featured Groups at the top of the page.
I try to be patient as I'm aked questions over,over, and over again. But at times I loose it. Then she looks at me from her bed and says" Thanks for taking good care of me" and smiles. And that makes it all worth while. My husband goes to work each day, and so much I feel trapped here, because I must be. I have a sitter come a few hours twice a week, and for us to go to church and have lunch. I know I'll miss her horribly when the Lord takes her, butwe have had our problems in the past,I must try and keep praying all day long for Jesus to give me patience and strength. Thanks for your support and suggestions.
I have been attending a support group for several months. You can tear up if you so desire, and express you concerns no one thinks anything about it. Everyone in the group are having different time in there loved ones downward trend. Some have lost there spouses, they also have great input. They have sorrow but have relief that the loved one no longer suffers. Please look into attending you'll get a hug and lot of understanding.
I have been involved with the Well Spouse™ Association, http://wellspouse.org since 2000. It's a group that offers peer emotional support to husbands, wives or partners of people with _any_ chronic illness and/or disability. The spousal relationship is different -- more intense -- than other family relationships, such that a spousal caregiver feels a depth of emotion and grieving over losses, as the illness of their partner progresses -- that is different from the emotions felt by other family caregivers. The WSA has local area support groups, and I ran one for 3 years, until my first wife died, and I moved to the U.S. There is also an online forum, but the face-to-face support groups are the best, and we hear lots of comments from people who feel they were "saved" after discovering the WSA and joining a group. Disease org. groups are great for the ill spouse, but they are not focused on the needs of the well spouse, which is where we come in. Paula, thanks for this post, I hope it helps some people on this site and encourages them to look for a support group. Richard
I just need someone to talk to that really understands and living thru it. My mother has lived with us for 7 yrs. and now has moderate dementia. I now have a sitter come in so my husbnd & I can go to church, or grocery shopping., And going to join a group at church, I need this so badly, I feel so far from my Lord. And hopefully will be starting in the fall, shawl ministry group, meets also once a week. So this will help me to get away for awhile, to keep, me, and who I really am. I pray for strength to get thru each day. Any advise would be quite apprecitated. Brother will take her 2 times a year, and no more. But I'll take anything now, to get a break. Thanks, my first time with this. God Bless.
Financial problems are huge for us. While going through things trying to find things to sell, we found some records that it turns out the Library of Congress wants as nobody else has them. My husband is having to walk the box with the records carefully packed in it for about 1 mile round trip to get it out today on Fed Ex, but also to save gasoline. We have borrowed from everyone we can. What we can't afford next month gets cancelled - water, garbage pick-up , car insurance (which means the insurance company alerts the DMV we no longer have insurance and our licenses are suspended), my pain management doctor appt , my pain meds, etc. The only place to really hold a meeting is at the public library which is now all the way on the other side of town. The Chronic Condition group, if it is still meeting, is for everyone who is living with a chronic condition so it is not especially designed for or about caregivers. What I have been told in the past while I was working with abused children and their families, was that caregivers were just too busy to go to meetings like this, even though they knew it was good for them., etc. They also have trouble in this mainly rural area finding someone to stay with the loved ones and/or the children while they are at the meeting.
I have run a caregiver DIY support group for my Alzheimer husband for the last 3 yrs. This keeps me busy mainly with the roster organizing 10 caregivers. I do a stint every day myself plus all the meals, supplies etc I was referred to a home support group who supply me with care 47hrs per week The rest of the 24/7 is mine. I do realize finances would limit a lot of people but I have taken a mortgage which doesn't worry me as the children are so happy their Dad is so well cared for and when our time is over our property will be sold, the mortgage over and the balance shared. I think the time is now to take advantage of what you worked for as there are no pockets in shrouds. The coming & going of different caregivers gives variety to us both. I am careful to keep the shifts short, under 4 hours so no boredom sets in. The morning carers do the shower, washing and cleaning. Later ones take my husband out in the wheel-chair or vacuum the house. I teach hospice girls Mah jong which seems to keep my man in some sort of interest. The night ones feed him and turn him during the night. They are all self employed so no worries with PAYE or ACC etc. I do believe what I have set up is rare & maybe the only one but it suits me not to have to visit a rest home daily or to get depressed with all the other patients in a dementia wing. Maybe this will give some food for thought in giving a go to a DIYwhich is very rewarding for someone you love.