Support Groups for DH
Hello Again - I have found so much support for me, as a spouse of a DH, but not so much for my husband, or for the both of us to attend. He is still at a stage where he might benefit from others' perspectives.
Mostly, I'm looking for outside validation for things like driving…
Warmly,
—CydS
Comments
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What stage is he? A support group wouldn't have helped my husband at any stage, but your DH may be different.
Is he still driving? PWD are impaired and IMO should never drive. If he had an accident, you (both) could be sued for everything you own. Please don't allow him to drive, lives may depend on it.
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even in early stages the ability to reason may be lost. He doesn’t have the ability to understand he is impaired. I doubt having others telling him will help but if you want to try, you can call the toll free number for the Alzheimer’s Assn. the number is at the top of the main page. They may have resources in your area or be able to help you get him to stop driving. I got my husband to give me his keys by telling him if he was in an accident even if it wasn’t his fault that we could be sued and lose everything. The next morning he gave me his keys and never drove again. You could also ask his doctor to tell him he shouldn’t be driving. Sometimes they will listen to their doctors. Many PWDs have visuospatial difficulties judging distance and speed. That’s why the Neuro Psychologist told me no driving immediately after his diagnosis.
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@CydS
There are way more support groups for cargivers than for PWD, although some organizations do sponsor Memory Cafes which are open to both for social interaction. I'm not sure whether there would be a frank exchange of perspective from the other PWD who will likely be further along in the progression of the disease and likely suffer from anosognosia.
In the context of anosognosia, driving is a hot button topic as many PWD think they're rocking their IADLs nicely. Bringing the topic up among those who feel similarly might not work the way you'd hope and could be upsetting for other care-partner couples. FWIW, driving was a hot button topic for my dad. Early on it lead to considerable agitation and aggression. It did improve in the later stages, but he never got thinking her was fine to drive. The very last conversation I had with the man, hours before he died, was about me bringing his car to the MCF so he'd have wheels in case he needed to go somewhere.
HB1 -
Maybe this organization has something that will help.
The description is:
National Council of Dementia Minds is proud to be the first national 501(c)(3) organization founded and governed by people living with dementia. We include individuals with all types of dementia or mild cognitive impairment, including younger-onset dementias.
Our groundbreaking mission is to develop and support a national corps of Dementia Minds groups—composed of people living with dementia—who foster education and dialogue among individuals with neurocognitive disorders, families, care partners, healthcare providers, researchers, and policymakers.
https://dementiaminds.org/
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I think not driving has been one of the hardest things for him. Sorry I still don't have all the acronyms down and he is my ex husband so maybe it would be XDH. When we are driving some place he still talks about wanting a car. When he was diagnosed or I should say confirmed at MAYO a year ago this past August, we had to go to DMV and the assessor wouldn't even give him a driving test because the recommendation from the neurologist said he should not drive and that was a second opinion that said the same thing. His license was revoked and indicated void on the license. It has gotten easier and once we sold his car, that helped.
I do agree. Don't let him drive no matter how upset he gets.
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I found this last week and can't wait to dive in… The browser tab is open on my computer… just waiting for me to find the time. Work has been very busy and DH had gigs both Saturday and Sunday. Thank you for sharing!
—CydS
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Hi. This sounds great. I'm caring for my husband, newly diagnosed. What have you noticed about his driving?0
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Hello, @Nancy13 - Sorry for the delay in responding… been a week… My DH is still a great driver - and from what I've learned that could change quickly. I've started conversations with his Dr, and I'm starting us both in support groups where he can talk to others and understand he needs to stop. As soon as I tell the insurance company, I'm sure he will be dropped. So, enjoy it while you can, but know you don't have much runway with regard to your DH driving future. Hang in there!
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@CydS
The way dad's policy was written, his coverage was voided the moment the dementia diagnosis was made independently of me notifying them or him losing his license. My own policy is the same.
HB0 -
I don't think the insurance company will support a dementia patient. An accient could be financially catastrophic
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@harshedbuzz Oh… wow… OK, so if we have the same policy - do you think I should still need to make changes? Thank syou!
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@CydS
It's a question for your agent.
With my parents' policy, the rate came down with him off of it.
HB0 -
This is such a thoughtful thing to be looking for, and the fact that he is still at a stage where he could benefit from peer connection and outside perspective makes the timing genuinely important. For someone who might respond better to hearing things from peers rather than a spouse, a few specific options are worth knowing about. The Alzheimer's Association offers Early Stage Social Engagement programs designed specifically for people in the earlier stages of the disease, where participants connect with others who are navigating similar experiences, and these programs often include a parallel caregiver group so both of you can be supported at the same time without being in the same room. The Alzheimer's Association also offers a program called Early Stage Partners, which pairs a person with dementia and their care partner together in a group setting, which might be exactly the kind of shared experience you are describing. For the driving question specifically, an outside voice carries so much more weight than a spouse's, and an occupational therapist who specializes in driving evaluations can conduct a formal behind-the-wheel assessment that gives a professional, neutral recommendation, which tends to land very differently than a conversation at home. Some neurologists will also write it into their clinical notes as a direct recommendation, which removes you from the position of being the one who takes the keys. The 24-hour Alzheimer's Association helpline at 800-272-3900 can connect you with local early-stage programs in your area since availability varies significantly by region.
I hope these resources can help:https://www.dementiacarecentral.com/caregiverinfo/careforcaregivers/support/
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Please note that this post is a year old. Themes are still relevant, of course, but all the digging up of old posts is growing tiresome—and the original poster has surely moved past the issue by now. @JPJardinel: Are you an employee of the home health company that is linked in every post? I have been wondering.
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@JPJardinel
The other piece to dredging up older posts is that many are old enough that there is a very good chance the original poster is stage 8 and long gone from here. While the information could be useful to others, the original poster will likely be getting a notification of your response which could be an unhappy reminder of what they've been through.
HB1
Commonly Used Abbreviations
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DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
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FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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