New Here: Looking for support/community for "secondary" caregivers, extended family

Meredith Alz

Hi Everyone. My first time here. My sister in law was diagnosed with early on-set Alz about 16 months ago (after about 4 years of misunderstood difficulties) and seems to be progressing very quickly. I'm with her at least two days a week as a secondary caregiver to 1) spend time with her and 2) help take some of the pressure off my sister (her partner). As heartbreaking as it is, I love the time with her, but as she progresses, things are getting more stressful and complex within the family. I'm wondering if anyone knows of caregiver support groups for secondary caregivers and/or family members who aren't the primary partner or caregiver. I could use some support.

M1

welcome to the forum. I doubt that any support groups are exclusively aimed at secondary caregivers, but I can’t imagine that you wouldn’t be welcomed at any support group no matter what your role. That is certainly true here (this forum has been more effective for me than any local group, mostly because it’s larger and therefore has more depth of experience). Your local Alzheimers Association chapter can probably direct you to local groups. Individual therapy can also be very valuable in working out family conflicts, in my experience.

ohfarmgirl21

Hello Meredith …. welcome to the club no one wants to be a part of, but here we all are.

I am in a similar role. We live on connected farm lots to my in-laws, so 1/2 mile distance max. Our lives are very intermingled with multiple daily interactions. Having been recently laid off from my marketing role that had me traveling a lot and very busy, now that I'm home I can see the "oh wow, I could never do this day in and day out. We have a wonderful relationship, always have, but living "with" some one the way we do, well … you all know.

Thoughts on caregiver support … I found a group through the Alzheimers Assoication that meets once monthly. I also started using TikTok to get educated and build community there. So many content creators are taking on this topic and offering, or modeling, what are good tools and resources to help us all through ALZ. Those would be my #1 and #2 recommendations.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Most support groups, including this online forum, are open to anyone who is in a supporting role whether than is 24/7 hands-on, for a person in a facility, as a family member of any stripe in a supporting role of any kind. You could certainly attend a local group. The main website has links to local ALZ Assn chapters with can give you time/dates for in-person and virtual meetings.

I attended a local group with my mom even though she was certainly dad’s full time caregiver; the moderator welcomed me because she saw my role as supporting mom. There were 2 folks discretely asked to find another group in mine— one was the stepson of a PWD who was undermining his mom in the care of her longtime DH and the others were siblings who came and bickered wasting time (she referred them to a MSW counselor who does family therapy around dementia). I also participate here.

IME, the local group was awesome for the social connection mom felt as well as the local tips like which barbers are good with PWD or which MCF would suit a challenging PWD. This place is better for specific problems. If you have a concern you can share openly and will likely find a few folks who have been exactly where you are.

HB

fmb

This forum is the best for immediate feedback and answers to questions, but an in-person group is good, too. If you can't find a suitable group through the Alzheimer's Association, try contacting local memory care facilities or even hospice organizations. I know of at least two MCFs in my area with dementia caregiver support groups that are open to the general public. I attend a general caregiver group sponsored by my DH's hospice that is open to the general public. Nearly everyone attending is caring for someone with some form of dementia. My DH has stage 7 ALZ and lives in an assisted living facility with hospice services, and my mother also has stage 7 ALZ with hospice and lives in a MCF 1000 miles away, making me her secondary caregiver after my brother (holds POA).

Whether primary or secondary caregiver, and whether the loved one is in the home or a facility, many of the issues are the same. We have discussed everything from specific care issues to preventing caregiver burnout to grief.