Non Traditional Caregivers Support Groups

dzalz

Jo C.

Hello dzalz, I can see you have quite a challenge on your hands trying to find a support group that is unique to your needs.  I have been working with dementia since 2006 when multiples of our LOs were diagnosed with dementia which began our caregiving journey, and have been active on this Board since that early time.  I have seen and assessed many support groups over these years and have never found one such as what you describe you want for yourself; but that does not mean that there is not a connection out there for you.

Each person is different, each group is different; many of those groups do serve good purposes for different dynamics even though they were not a good fit for you. 

I have read your Post twice, and it dawned on me that such a group that would fill those dynamics you describe in all probability truly does not exist . . . . . however, it suddenly did dawn on me that you would in all  probability be well served by having a one on one experience where you could let everything out and curse and rant all you wish as often as you wish. 

There are counselors that specialize in families who are living with dementia care and their specifics, that would be a place that would be specific to what you describe you wish for yourself.  Some of our Members do decide to use the one on one support approach and it is tailored for each person's dynamics and it has worked well for them.

You may later, come to a time where you are more comfortable with those traditional groups; but your needs and wishes as they are now seems to need a very non-traditional setting and I think you will be most successful in finding that with a one on one approach.

The Alzheimer's Assn. also has a 24 Hour Helpline that can be reached at (800) 272-3900.   If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can at times help us with our problem solving.  It may be that there may possibly be a support setting that would function as you wish for yourself near your geographic area; the Consultants may or may not have such information.  Worth a try.

I send best wishes your way and hope that you will be able to find what you are looking for,

J.

storycrafter

Thank you for your post, dzalz. I hear you and think I get much of the gist of what you're saying.

The pandemic has made the inherent isolation and difficulty of finding such support in pre-pandemic times, even more challenging, adding another loss on another loss. For me it's made things feel more raw, ongoing and relentless.

I wish I had strategies and solutions, but I don't. Am struggling with the same fickle process of mourning. In the meantime I've put it out to the universe that I'm looking for a one-on-one grief counselor as I cope with the death of my father after a long, intense caregiving process, and the continued slow decline of my husband who has FTD (Fronto Temporal Dementia, young onset).

Sending wishes for strength, wisdom, peace, and may you be blessed with the support you seek and need.