1. < Caregivers: Dementia

Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

Posted by gail60 @gail60, Jun 19 11:31am

Per the mentor's suggestion, I am starting a thread specific to Caregivers whose Loved One (LO)/spouse/ partner has been diagnosed with dementia while they were younger than 65. This diagnosis is quite different from geriatric Alzheimer's in that it strikes able-bodied people in the prime of their lives while they are still building careers and caring for families. This creates a different set of challenges and the effects of the disease can be physically, emotionally and financially devasting to the patients, their spouses and children.

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

gail60 | @gail60 | Oct 2 9:42am
In reply to @milomiles "My 59 yo husband has recently been diagnosed with early-onset Alzheimer's. I work full time and..." + (show)
@milomiles

My 59 yo husband has recently been diagnosed with early-onset Alzheimer's. I work full time and he does not yet need constant care, but I know that day will come. I am hoping to connect with someone in a similar place to talk about our fears and realities.
Are there any virtual support groups for spouses?
Thanks for any insight.

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I was asked to start a feed specific to Early Onset Alzheimer's.
https://connect.mayoclinic.org/discussion/caregivers-early-onset-alzheimers-diagnosis-age-19-to-65/

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gail60 | @gail60 | Oct 22 9:36am
In reply to @laughsloudly "Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I..." + (show)
@laughsloudly

Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I am 46. He doesn’t have a diagnosis yet - still doing testing. It’s strange because some of it points to EOAD (hypometabolism in parietal and temporal lines and precuneus; memory loss, trouble with executive functioning, abnormally low abeta42, unable to work as an attorney), but then other things don’t point to EOAD (no amyloid plaques, normal ptau/abeta42 ratio), so it’s strange. Definitely impacting our day-to-day life though. My husband is seeing Dr. Taner.

What is your situation?

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Hi, How did it go with Mayo? I have no idea why it took me so long to see this message. We are 4 years into the disease process and beginning the severe stage. It's been a cruel and heartbreaking journey. We saw Dr. Graff-Radford and in a nutshell, he said, there was nothing he could do and to go live for today.
Getting the correct diagnosis is often difficult and drawn out. I hope you have some answers by now.

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gail60 | @gail60 | Oct 22 9:43am
In reply to @milomiles "My 59 yo husband has recently been diagnosed with early-onset Alzheimer's. I work full time and..." + (show)
@milomiles

My 59 yo husband has recently been diagnosed with early-onset Alzheimer's. I work full time and he does not yet need constant care, but I know that day will come. I am hoping to connect with someone in a similar place to talk about our fears and realities.
Are there any virtual support groups for spouses?
Thanks for any insight.

Jump to this post

Hi Milomiles, Lorenzo's House and Alzheimer's Association are supposed to have some good virtual groups for us. My greatest resource has been a private Facebook group for females only with spouses/partners who suffer from early onset, "Early-onset/Young Alzheimers Female Spouses Caregiver Support Group" Because it is private, I can not link you. You have to find it and go through the vetting process to get in. There is a lot of wisdom there. The administrators stay on there toes to make sure only female partner caregivers get in - no men, no family members. It is a very specific point of view.

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Funcountess | @funcountess | Oct 22 6:05pm

My husband fell 2 times within 12 months. In the hospital he was drugged with the wrong drugs, end result was dementia. At an early age he was an invalid. He could no longer walk or feed himself. Medicare: he was too young for. Nursing homes and caregiver agencies were only interested in money.
I hate to say how much I went thru only to have him die. I feel blessed I was able to write those checks. I still feel responsible because I told him he needs to be checked out. Some neurologist from Egypt tells me he’s only vitamin deficient, which was a bunch of crap.
That community hospital is out of business, and another one in its place.

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blue2 | @blue2 | Oct 25 12:49pm
In reply to @milomiles "Thanks for responding. I completely understand the dread feeling - mine starts when I am driving..." + (show)
@milomiles

Thanks for responding. I completely understand the dread feeling - mine starts when I am driving home from work. I know the day will come when I need to be home with him and I am just so scared and uncertain of everything. He has also been embarrassed by his diagnosis. My husband has always been the smartest man in the room - everyone would hand him their phone or call him for their tech problems. This is just such a devastating disease.
I will send you a private message if I can figure out how and maybe we can set up a call sometime?

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Hi Milomiles,
Sorry I somehow missed your response.
If you would still care to chat privately, as we seem to have things in common, I would like to know how you are doing.

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