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← Return to Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65
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Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65
Caregivers: Dementia | Last Active: Mar 27 7:33pm | Replies (58)Comment receiving replies
We are new to this group, and I did post once, but didn’t get a connection, which is what I’m looking for. The “hugs” don’t help, pardon my bluntness.
Today is our 38th anniversary. We’re 57 years old and have 3 YOUNG children under the age of 5. He was diagnosed 10 days ago with dementia…more tests coming including MRI this Friday. Neurologist is leaning toward frontotemporal dementia and concerned about how fast it’s taking over.
I am a full time teacher. I have absolutely no idea how I’m going to face this challenge alone.
Replies to "We are new to this group, and I did post once, but didn’t get a connection,..."
@brn2tch
My husband’s first neurologist (March of 2022) didn’t mention dementia. The second neurologist (August 2022) said she felt he had FTD at our very first appt with her. And she ordered a NeuroPsychEval (Jan. 2023) and still felt the diagnosis was FTD. She wanted to do a lumbar puncture and PET scan. She actually scared me and I wanted another opinion. The third neurologist (June 2023) was not very kind (he chuckled at me asking questions about mold—my husband’s work environment led me to this question), but he did offer us a referral to another neurologist (at a university) that we accepted. The fourth neurologist (August 2023–at the university) after his testing diagnosed my husband with Early Onset Alzheimer’s.
I wish I had the right words to offer you—I don’t think I do—but if calling someone who has been in a similar situation would be helpful, I would be more than happy to talk with you. I understand feeling alone. I feel like at some point all caregivers feel alone. I was a high school counselor before retiring to be a full time caregiver. I had just enough years in to retire with turning 55. I may not have answers —but I understand the value of being able to shed and share emotions.
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@brn2tch I read your note about "hugs" don't help, pardon my bluntness. When I first started on this site, I received the same thing, but many of those people, started posting value-add information. Just give it time. You're young/ 3 young children, I'm sorry you are having to deal with this at such a young age. the world as you know it, will change, you know that, because you'll be just like every other caregiver. on this site. In your case, you will need onsite support, maybe sooner than later, depending on how far into the dementia he's in. As for your teaching job, only time will tell what happens and how quickly it happens. I'm sure you have good insurance. So start looking into the financial and medical aspects of things, so you know what's he's eligible for, and how that can help you navigate through this. I was so much fear in the beginning with my husband's diagosis (MCI) but I'm finding getting more educated on resources, what's available, etc. makes me feel better. Hope this helps in some small way.