Non Traditional Caregivers Support Groups

dzalz

When this first all started I tried to go to classes but in my area - they were all really just certification classes for nurses so they could check a box. Different titles same sheets. Same quick pace. I remember this one older guy was just dying for some answers and they shushed him because they had a lot to cover. I just got up and left after that. I can read and watch videos on my own - I don't need to watch or listen to other people read what is in front of me. I reached out again a few years later about a walkathon saying I wasn't comfortable promising to raise money but could we just show up and maybe meet a family to bond with  and the emailed response was enough for me to never contact the group again. I know it would have been easier just to sign up with a fake name or lie about intending to raise money but I shouldn't have to lie.

My experience with my local group is that they more a fundraising group that does some superficial things while they check boxes and support paid professional caregivers. And I suppose that is needed. I would vote for more empathy and let's drop everything to support family members would be better and sadly while I am filled with empathy. I am not the best at sharing it either.

I think it would be good to be in a support group but I can't be in a traditional one. I don't want to go and harm or insult how someone else is handling things. But I am not going to let someone tell me I HAVE to do this or she will have to be in home some day because you can't handle this. Just because YOU can't handle this does not mean I can't. Every situation is different but two extended family members died of COVID in homes and family wasn't allowed to see them for months and didn't even know about the COVID until they were dead. And to me that is a bigger hell than I could handle.

 I need a place to be able to swear and yell until I start laughing. I need to do this so I don't do it to my parents whose thoughts and actions I now understand more than they do themselves but I still have to let them be independent without letting them know I have to orcherstrate that feeling of independence so they don't get lost or hurt. I need a release so I can let her help make dinner or clean even though that help will double or triple my work. I need someone to bitch with about how all those outside the home think I just mooch free rent and that my parents don't seem that bad. And to bitch some more when those same people see the reality and call me a saint.

The advice I think newbies really need is to learn how to gauge just what you can and can't share with out of state siblings. Too little and they think this is all no big deal. Too much and they think you can't handle it. You have to learn who you can rant at. And you need to learn how to respond to people who don't want you to help them because you have your hands full. Well sometimes a different kind of hands full is a break.

For some reason I thought after 14 months inside and basically alone that the reopening of the world would help. And instead it has made things more lonely. It is never going to be better is a fair thing to think but sometimes you  have to actually say it aloud to someone who knows you just needed to say it so you can forge ahead and find moments to laugh and moments to cherish.You need someone to understand that saying negative things and thinking sad thoughts doesn't mean you are giving up and that you can't do it.

I thought I was doing great then I ran into an *$%& and his hate just jumped inside me and it has taken days to try get it out of me. All that darkness found a crack. Now it needs flushed out. Maybe this will do it.

I guess all I really wanted to ask was is there a support group where I can yell obscenities until I laugh and tell funny stories about sad things. Or how the idea of Groundhog Day meets Abbott & Costello life sounds fun and some days is fun but there is also this understanding ending is destined for at best the Big Lebowski or Butch Cassidy but with a metaphorial understanding it is going to be a gut punch like The Mist. The calvary may be coming but not in time for this performance. 

AND THAT IS OK. That having to watch Big Time Rush and ICarly all the time with Mom and terrible Bruce Willis/Nick Cage movies with Dad and neither remembers ever seeing them but you can never forget is OK. I just wish there was someone who I can talk to about Ted Lasso and Wayne.

 I need to be able to be empathatic one day and then short and shut off another day.

COVID ended all my bar friendships and I am too old to go to new bars and meet new people who are exactly like the old people.

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.