Another Support Group Disappointment

WIGO23 · January 7

I have now tried four face to face support groups in two different cities. All of them were failures. The facilitators let one or two people dominate the time; most of what was talked about was not relevant to our situation (stories about grandkids & travel etc.); no agenda to help share caregiver tips and actual opportunity to learn new skills. It was a waste of time for me. Is anyone out there in a face to face support group that is worthwhile? If so, how did you find it? And yes, I have tried Alzheimer’s Association and the State & Local Eldercare programs.

jgreen · January 7

Hi @WIGO23

I’ve found what I need right here with this group. I’m not much for having to schedule time and drive somewhere to meet with other caregivers. Usually if I have to plan something, inevitably my plans fall through. With this forum I can log on whenever I have some time and follow threads that are meaningful for me at the moment. I can also flag them and re-read.

I love this group! Everyone is so kind, caring and understanding. Plus great advice, and a few laughs along the rocky road.

Sorry I can’t be more helpful. I hope someone out there can give you some good tips.

Chris20cm · January 8

https://alzconnected.org/discussion/75041/another-support-group-disappointment

it seems to depend on the leader. When the leader of a good local group retired, the group wasn't the same and after a few months it was discontinued due to lack of interest.

Victoriaredux · January 8

The groups you found may be escapes for the members - a chance for an off topic breather . Can you suggest they play a Dr Natalie/Teepa etc video on a tablet and then do a group discussion about the topic before they move to non-Alz topics? Or start your own sub group that meets say 30 minutes earlier ? Then people can stay or go after.

Biggles · January 8

I agree with jgreen the support group right here is the best ever. Kindness, compassion, real hands on experience, knowledge sharing and it goes on and on. You can laugh, cry, share experiences and vent big time without ill effect or judgement. Before I found this group I was in a mess the medical profession had nothing to offer so I went to the Dementia Association they had a monthly coffee morning I thought this would open a few doors but all they did was scare the living daylights out of me with how my DH would deteriorate and how expensive Care Accommodation is. I got a Schnoodle puppy for support had him trained and the Dementia Association said he wasn’t welcome, so that finished that group for us. Way too negative. Also had failures with OzCare and Angliicare so don’t bother with them either, but I have had great success with Sailability and simply our local off leash dog park (we go most afternoons socialising for me, stimulating for DH and fun exercise for our Schnoodle). Sadly I suggest you have to continue trying hopefully finding a way that suits you and your LO. Come here often and ask as many questions as you like the answers might surprise you. Good luck.

harshedbuzz · January 8

@WIGO23

I'm sorry you hit another wall. Local support groups are so dependent on not just a leader who is willing and able to take charge of the group, but also who is at any given meeting.

Our local group was great because our leader was totally in charge and made sure everyone who needed input had their time. In fact, she often started the meeting with those folks intentionally. I recall her diplomatically showing one stepson the door as he kept interrupting his mom. Over time members do bond and catch up socially, but that needs to happen before or after the meeting. When mom was still involved, they had a Christmas luncheon at a very nice restaurant at which dementia-talk was forbidden.

HB

Maru · January 8

https://alzconnected.org/discussion/75041/another-support-group-disappointment

We have a great group. The leader is a retired professional of some sort and is obviously used to presiding over meetings. He makes sure that everyone has a chance to share. He is also up on new treatments and research. if you are in a big city there may still be a group out there for you.

Timmyd · January 9

For those who are active in an effective local support group, is there anything you get from the local support group that you are not getting from this online group?

I have not yet done a local support group, but I am planning to do so for the opportunity to exchange information and experiences with local resources such as medical providers, in home services, and memory care. Are people involved with local support groups getting good information on these local provider topics?

sandwichone123 · January 9

The best thing I found from my local support group that I attended for only a few months was that they had a lot of experience with local resources of all types—which docs were easy to work with, facilities, home care, everything.

BikingOldMan · January 9

https://alzconnected.org/discussion/comment/263064#Comment_263064

I am in a local support group that I have found to be very helpful. It is held at a local AL and MC facility and led by a staff member at that facility, however it is NOT sponsored by the facility. The leader is compensated by the ALZ association. Meetings are once a month. Generally there is a visitor who speaks on a topic of interest to caregivers (i.e. an elder care attorney on getting paperwork taken care of). Sometimes a presenter will be presenting about services offered by their organization, or other programs that might be beneficial to caregivers. Each attendee has an opportunity to share a bit of why they are there (if they desire). Confidentiality is stressed as appropriate. I found out about the group through a social worker that works with my DW's primary care Dr. Since the group is local to me (<5 miles) I have run into a couple of the attendees at other locations. There is nothing like a real hug! Attending regularly as I have over the past year I've come to feel quite comfortable in the sharing that generally happens later, after the presentor. I find value with my local support group that complements what I see here. I've never left a meeting where I wished I'd not been there.

Lgb35 · January 9

I would love to find more people dealing with semantic primary progressive aphasia. It is different enough that I am struggling with what to expect. We are on the verge of taking DH driver’s license)doctors appointment Monday) if he doesn’t have a license he won’t be able to work anymore. He is a salesman and is all over the state.

???? · January 10

I belong to the local ALZ association support group. Our leader works at allowing everyone time enough to talk. He starts out with does anyone have something really important that they need to talk about. You might try talking with the leader after the meeting about your concerns.

deemac13 · February 3

Can I ask please, what time of the day/evening do your face to face groups meet and how often?

I attend a face to face, at 5:30pm once a month. There is never more than 2 people including myself, that show up. That time works great for me because my daughter can stay with my DH. Just trying to figure out why more people are not showing up. It is a relatively small community and there is an option to zoom in if someone cannot get out of the house.
The information is posted on facebook and flyers in the community.
wish we could get more people to show up.

Kat63 · February 3

I attend a local caregiver group and I too am in a smaller community. At first we had just a couple people attend and the other person had a mom with dementia who lived out of state, so we had very different circumstances. But lately we are getting more people to attend and the past months meeting had two men attend, both caring for their wives. We had very good discussion and helped each other, to the point at the end of the meeting we all exchanged phone numbers and want to start a Facebook group. The lady that leads our group works for a local hospice agency, but is very careful to not talk about her company. She makes sure everyone gets to talk and we too have had guests speak on different programs. I find it very helpful and always feel good after our meetings.

Michele P · February 3

https://alzconnected.org/discussion/75041/another-support-group-disappointment

My experience has been the same. I was helping the group members and got nothing I needed. I found that a private therapist who has lived this with family was the best option.

Another Support Group Disappointment

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