Lewy Body Dementia Caregiver Support: What would you like to share?

I participated and learned so many helpful things. Part of the study is partnering participants with a mentor. It was SO valuable.

FYI
I filled out the survey form, but after all that, it said it is now closed for new registrations. They may have another study in the future.

Hi Kim @mrjohnwebb. How wonderful that you found the study so helpful. Are you willing to share tips that you found most helpful for you as a caregiver or your partner along the way? May I ask what stage of the journey you're in?

There were so many important lessons, it would take a book to write them all. Perhaps the thing of highest value was being partnered with someone who had already walked our journey. She was incredible. I wish you peace and community if you are on this journey. Check out the LBDA site on Facebook. They have valuable information there and a community that helps one another.

Thank you Kim. I will take a look at that site. I think a mentor would be most helpful to me at this time.
Peace, C

@nmrcdigman Thanks for the intel that the study is closed for now. Have you reached out to LBD Association?
https://www.lbda.org/
I've been able to connect with a co-ordinator of support services who provided many resources. She is a phone call or email away when I have questions or need support. She has even spoken with my mom, when appropriate. Just a thought.

@mrjohnwebb You can't get much better than speaking with someone who's already been down this path.

Hi:
My husband has dementia, but not LBD (he has FTD).
I enrolled in a research study at Oregon Health and Science University, studying the caregiver specifically, and offered info, resources and support. The group no longer meets as part of the study, however we all decided to keep meeting virtually monthly to continue that support. It also led me to a dementia conference I will attend.
Tapping into your resources and support systems is vital and will hopefully relieve stress/anxiety.

@judimahoney thanks for sharing how you're managing stress and anxiety that comes with caretaking for dementia.

I'm in a perplexed position because I'm the only child and caretaker for my mom, along with her significant other of 31 years. He and I have an okay relationship and he will answer any questions I ask however he's not much of a communicator. Their relationship is a non-conventional, unique one and now that LBD is in the mix, I worry about him. He has sent me links of online YouTube videos from doctors so I know he's learning about her disease but isn't really the type of guy to reach out for any help, and honestly he can be oblivious to things at times. It's hard to watch from my perspective -he's got the toughest job of all living there because she's always angry with him due to infidelities and women and children being in the house. All delusions and hallucinations of course but it comes with agitation. I do want to be respectful of him and what he's enduring daily because it's a lot and I don't really know how to help other than daily phone calls checking in and texting to keep tabs on situations and showing up which I do 3 to 5 times a week.

They're both resistant to help but I have applied through Medicaid in our state for the nursing home transition and diversion waiver program - support that comes to the home. Neither of them believe in these types of support so it'll be baby steps, but I feel it's my due diligence to have a plan in place as I know she's not going to get better and things will get harder. Just trying to stay ahead of the curve, respectfully. It's a program that can be in place even if we don't utilize many resources just yet.

Does anyone in this thread who is a spouse or companion have any recommendations or suggestions for a child? What types of support would you want from your child that would matter most?

@rwinney
Great points and questions.
From my children who live several hours and several states away, I can only expect them to be there for me emotionally. Check in calls are great, better if they're video calls. That's just me. Other folks in different situations may say differently.
I rely on support from my husband's sister and a few others in our families who actually check in (one angel sister-in-law and one of my sisters who agree to be with my husband for short periods of time if I can't be with him).
All the best to you. Sounds like you are doing a lot to support them. 🫂