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

Posted by Rachel, Volunteer Mentor @rwinney, Feb 14 12:54pm

My mother was diagnosed with LBD and at a recent neurology appointment her doctor handed me a study that Rush University is conducting for caregivers of Parkinson's and Lewy Body dementia patients. I thought I'd pass it along in case anyone was interested in taking part. It's a 12-week program for education and support which includes resources, surveys and possible compensation for participation.

Learn more here:
https://redcap.link/PERSEVERE1
or email persevere@rush.edu

I myself will not be taking place in the study but wanted to extend it out to those who may be interested. I will say that receiving support is invaluable. Watching my mom's decline with MCI turning into LBD, I find myself on a roller coaster ride of challenges and emotions, and know I'm not alone. From the changes of mood, memory, and physical abilities, to the very disturbing hallucinations, delusions, and agitation. What caregiver advice do you have? Do you have tips to share?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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Rachel, Volunteer Mentor | @rwinney | Mar 28 12:41pm
In reply to @judimahoney "@rwinney Great points and questions. From my children who live several hours and several states away,..." + (show)
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@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. 🫂

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@judimahoney Thanks. I am, but somedays it doesnt feel like enough. It's time for home health aids as mom isn't (can't) changing clothes, cleaning body/teeth, house. She sleeps in full clothes and jeans. Her companion just says that she wont do anything for him when he tries to help her.

These past fews weeks kicked into another phase after increased meds for hallucinations/delusions of infidelity, families and children in her home. She wont sit long, continually pacing and moving things around the house. Fell again. Her bright spots may make sense with memory but primarily she makes zero sense and nothing is believable anymore. She needs care for companionship, nutrition and scheduled structure also.

The gravitation of mourning the loss of each part of her can be so gutting, but I'm trying to remain present and value each phase of who she becomes and cherish her while I have her.

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