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Hi! I'm new here... I'm a granddaughter taking care of a grandfather with LBD

daniellekr88
daniellekr88 Member Posts: 2
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Hi. I'm new here. I'm a granddaughter caring for a grandfather with lewy body dementia. I talked to a lady at AA WNY chapter and she suggested I try some support groups. A little back story about my journey so far... My grandfather is 94 and over the last 2 years has started having symptoms of LBD. He accuses almost everyone in our family of stealing from him, has memory problems, loses items daily, hits when he gets angry, barely complies with taking daily meds, is having falls and over the last 2-3 months he's been having hallucinations. I am currently caring for him at home because he doesn't want to go to a nursing home. He is also very defiant and pig-headed about having any kind of help other than me. He says I am turning him into an invalid by getting him Life Alert and such to keep him safe. I am getting burnout and I know that his 'behaviors' as the doctors call them are likely just going to be getting worse. Any suggestions and/or support I get is very much appreciated!

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  • SDianeL
    SDianeL Member Posts: 3,421
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    Welcome. Sorry about your Grandfather. I learned here that you can’t reason with someone whose reasoner is broken. Read the book “The 36 Hour Day” which will help you help him. Search online for dementia caregiving videos by Tam Cummings and Teepa Snow. As the disease progresses you will need help. That can be hiring caregivers for home which is very expensive or placing him in a Memory Care facility. Don’t wait to have a Plan B.

  • daniellekr88
    daniellekr88 Member Posts: 2
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    Thank you for the advice. I just purchased 'The 36 Hour Day' and I'm hopeful it'll help me! :)

  • JPJardinel
    JPJardinel Member Posts: 67
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    I'm really glad you found your way here because what you're describing is a lot to carry, especially as a granddaughter who stepped into this role without a roadmap. The combination you're dealing with, accusations of stealing, daily falls, hallucinations, medication resistance, and physical aggression, is genuinely one of the harder clusters of Lewy body dementia symptoms to manage, and the fact that you're doing it largely alone and at home says a lot about how much you love him. The detail about him calling the Life Alert an attempt to make him an invalid really struck me, since that kind of fierce resistance to help is so common with LBD and so exhausting to navigate when you're the one trying to keep him safe while also respecting his dignity. Burnout at this stage isn't a sign that you're failing, it's a sign that you've been giving everything without enough coming back to refill you, and that's exactly what support groups are for. I hope this community gives you some of what you need, because you deserve to not be doing this completely alone.


    I hope these references can help you:
    https://hopebridge.care/early-signs-of-lewy-body-dementia/
    https://en.wikipedia.org/wiki/Lewy_body_dementia
    https://www.alzheimers.gov/alzheimers-dementias/lewy-body-dementia

  • SusanB-dil
    SusanB-dil Member Posts: 971
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    Hitting when he gets angry is unacceptable. Do tell his doctor asap. IF you don't have the HIPAA accesses, you can still tell his doc what is happening, they just are not legally allowed to reply back.

  • Michele P
    Michele P Member Posts: 549
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    I am glad you found this group. A few suggestions: speak to his neurologist about medication for the aggression. Safety is always number one and you are not safe. A geriatric psychiatrist should be on his care team as well to help with medication for his symptoms. You need a plan b in place now. Tour memory care facilities and put him on a waitlist list now. This is already more than you can handle, understandingly. If you have the DPOA to care for him, look into agencies for in home care. This disease will break you in two. You can’t do this alone.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more