From my observation, it seems that most caregivers are on the journey largely on their own. Yet there are millions of caregivers in the U.S. alone. It seems there should be opportunities all around for caregivers to connect in person, support each other, and trade ideas and problem solve together. This seems like a missed opportunity. I see caregiver in-person support groups here and there but not nearly as much as I would expect give how many of us there are. I'm wondering if you know of organizations that structure these opportunities already. Perhaps I just don't know about them. Thank you.
Some Churches or other houses of worship have support groups as well.
The Support Group that I attended for many years was discontinued when COVID started and talking to members of the group my friend and I decided that we would start it up again. So we found a location and started making calls. It is a "Peer driven support group" and it is what many need at this time.
So moral of the story here is if there is not a group and you think there is a need START one.!
There are many Support Groups on line as well.
For me, getting out the house to attend a caregiver's support group would only complicate things, so online is a better option for me.
Getting a caregiver in for a few hours 1 time a month will give you a bit of a break that is well deserved and important to your mental well being.
It will get you out of the house and your loved one will be just fine with someone else taking care of them for a few hours. They may even benefit from someone else staying with them for a few hours.
The communication with others is important. As well as getting to express what you are going through. And there may be some that have gone through what you are dealing with n ow and you may help someone that is having a problem that you may have "solved".
As caregivers "we" are isolated enough as it is adding "self imposed isolation or mandated isolation" on top of that is not good mentally. I have seen many friends decline over the past 18 to 24 months. I can only think that isolation did not help.
This forum is great, on line groups are great BUT neither has the human connection that meeting with a group has.
We are not meant to be solo creatures we need the contact and connection with others.
If a group is not possible at least connect with friends and meet with them in person. One of the things that happened to me as a caregiver is that friends stopped asking me to meet them for lunch, dinner, go for coffee because I was busy taking care of my Husband this isolated me even further. Getting caregivers to help me allowed me to reconnect and helped keep me sane. (although that might be up for debate, the sanity part)
They of course had to start meeting on Zoom 2 years ago because of Covid, but just a month ago started meeting back in person.
You cannot put a price on this kind of support group, as it's vitally important for the caregiver to get the support they need and to not feel all alone.
No one understands better what we caregivers go through, than another caregiver who has walked or is walking in your shoes.
You're right. We need more support groups for caregivers. Ones like the one I attend that meets weekly and where everyone gets a chance to talk and share with the rest of the group exactly what they're going through. It's a game changer for sure and in my case, a life saver as well.
I was new to the diagnosis of dementia for my wife. I contacted the ALZ hotline (or whatever it’s called) and was told about a caregiver group meeting near me. I attended the Dementia/Alz caregiver group once a month before covid shutdown came up. A caregiver (private pay) came to our house to be with my wife while I was out. At the first meeting, I left wondering why I even attended. But I went to the second meeting, got a little more out of it. Third month, “Hey! This is pretty interesting.” After that, they couldn’t keep me away.
There was only one rule at the meeting. What was talked about there was not to be discussed outside of the meeting with anyone.
Some people came for one or two meetings, others had been attending for many months. I got a lot of information from the people and got respite time also.
For me, in-person meetings worked. Others don’t have time or don’t care to meet that way. That’s fine. I say “What works, works.”
It's very interesting that you went from "wondering why I even attended" to "After that, they couldn’t keep me away" in about 3 meetings. If you don't mind sharing, how did that happen, how did it grow on you?
I find in my neck of the woods that most of the Caregiver Support Groups are held at Assisted Livings and/or Medical Facilities. The last thing anyone of us needs to do is go to another medical office. To me that would not be a night out. I think if small group neighborhood gatherings were held in a local Cafe, coffee shop, bookstore, etc. a suitable environment that would be conducive to looking forward to attending as opposed to another medical appointment.
However, these groups could be advertised in doctor's offices. A lot of Elder Attorneys host caregiver groups at Assisted Livings. That can be a good thing for people who are starting out and need advice.
You could start your own, perhaps a conference room at a library or Church hall.
They are definitely needed. The Pandemic everything needed to be done online but it's nice if you host a meeting in your neighborhood then when you go to the local supermarket you run into other members.
I belong to my local Church prayer chain. Each week they call me 2-3 times with prayer requests. This week I am having 2 members over for coffee. These are people you can confide in who don't gossip and are of the same Faith. For me this works! Amen...
This forum has done more for me than I could explain. It has given me friends living the same life. I have received very good advice and been able to give in return.
Your book title is SO good. Congratulations on publishing it!
Also this group holds annual in-person/Zoom caregiver 1-day meetings (called Fearless Caregiving Conference) throughout the country free to caregivers, where local vendors for caregiving come to share their services.
You can also set up a meeting at a restaurant somewhere. Or maybe contact local churches. Maybe they have one. Good luck.
When I would take her to luncheons with her friends, there were other women (and one man) who attended via a caregiver. We didn't exactly chat with each other, merely smiled to each other as our elders made their sometimes wacky conversations. There was a certain comradeship in sharing the time with each other and our elders but this was not really a participatory time.
Taking Mom to her water exercise class was quite different. While the elderly did their exercises in the pool, those of us who transported them gathered in pool-side chairs and tables and talked. In my mind these talks were much better than a support group because it was so un-pressured and informal. Usually the chat had nothing to do with actual care-giving. It was simply the chat of very different people who had one thing in common: we cared for an elder who could no longer drive and often needed help with other aspects of daily life. Most of us struggled with storing/transporting walkers, wheel chairs, electric scooter, etc.
Similarly, when taking Mom to senior center classes there were often other transporters who would sit in the common room and chat for the half hour of the class. I found these to be restful and reassuring. There was the small comfort of sharing a predicament with others and casual chat about normal life that happened to include the care of another human being. That sense of "normalness" was quite restorative in a way that a "support group" is not.
For some, I am sure that there is value in the structured setting of sitting in a circle and "sharing" experiences. For others, myself included, it seems much more supportive and natural to simply meet with others as a natural part of waiting for Mom while she was doing things that interested her. In the years that I was taking my mother to various activities I found that waiting for her while she did her 30-60 minute activities quite restorative. There was nothing to prepare, no special appointments. I and others like me simply showed up as part of our elder's lives. We grew to know each other and enjoy the acquaintanceships as part of our caregiving.
So often caregivers express a loneliness, both their own and that of their elder. Getting the elders involved in group activities ends up being quite rewarding for them and us. In my case it was particularly rewarding and restful as I didn't even have to sign Mom up for these things. One sister, a retired school teacher, was very good at organizing such things. For those of you who have a relative or inlaw who wants to "do" something, but is not local or can't be physically involved, it may be a good thing to let them be in charge of some activities. Let them know your schedule and let them talk over the possibilities with your elder. In our case all it took was for the coordinating sister to request a catalog of senior events and classes from the Parks and Recreation for the nearest town. Mom was a rural resident and had to pay out-of-district prices, but even with that, the costs were quite reasonable.
Also, Leeza's Care Connection, leezascareconnection.org has a variety of support groups and resources for caregivers both virtually and in person.
Hilarity For Charity has dementia specific support groups for every age range that meet virtually.
I Googled "Alzheimer's Support Group" to get my research going. Two caregiver friends of mine Googled "Parkinson's Support Group near me", and another Googled "Autism Support Groups for Parents".
Groups of every kind are all over the place.
I went to 2 before Covid hit and it was at the second place that I met someone who told me about the third place which turned out to be the better fit for me. Insight Memory Care Center (IMCC). We Zoom meet every Thursday at 2 PM. They are located in Fairfax VA (and just opened another site in Sterling VA) but there are Zoom participants that join in from out-of-state. The Zoom meeting are very comfortable. The members are likeable, adult, goodhearted and supportive. It is very well lead by highly credentialed normal people.
It has been praised by tons of people not only for their group meetings but for their on site programs. They are genuinely unique and incredibly giving of information, resources and time.
You should give it a try to see the standard by which other support groups should be held to.
Good luck finding support, I know caregiving is very difficult.
In a previous post I said I used private pay to pay for the aide coming in while I attended meetings, I neglected to state I was reimbursed by a grant.
I’m starting to question my own memory loss: My wife was able to stay by herself when I attended the meetings. It was at one of the meetings I heard of grants available for respite care. I was later able to use a grant to pay for respite care during covid.
Clear as mud, right? Lol.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share
You’ve given me (and everyone) a lot of great ideas and I will explore them and see where they lead. If I find new resources that may be of value to others here, I’ll post them to this thread as well.
I did find two additional online caregiver support groups on Facebook. I thought I would share them here in case you’re interested. Both of them require approval to join, but it wasn’t hard to get approved.
https://www.facebook.com/groups/103001490399094
https://www.facebook.com/groups/CaregiversHubSupportGroup
Perhaps we can treat this as an ongoing conversation and add new thoughts and ideas to this thread as they come up.
You are here, on the Aging Care Forum, where caregivers meet daily, 24/7.