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Lewy Body Dementia at age 51: Anyone else with early onset LBD?

Caregivers: Dementia | Last Active: May 5, 2023 | Replies (89)
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@colleenyoung

Welcome @cmiddlet.
51 years of age is just too young for any diagnosis in my opinion. @jen26 @dadbrother2022 @kellywilbanks @teacher502 @larryh123 and others know about an LBD diagnosis at age 50-ish first hand.

You sound like a very organized and structured person. That will serve you well. Am I right in assuming that's your comfort zone to be organized and helps you deal with the chaos of emotions you must be trying to manage?

How did you explain the news to your children? How are they dealing with it?

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Replies to "Welcome @cmiddlet. 51 years of age is just too young for any diagnosis in my opinion...."
cmiddlet | @cmiddlet | Feb 9, 2023

Thanks for replying, Colleen. My name is Carrie. I've used the cmiddlet handle a long time. My husband and I have been married for 31 years. Our kids came later (they're 12 and 15). One advantage is since I've known my husband a long time, the changes are certainly more apparent to me. I learned through counseling that LBD patients can be very clever at hiding and I found myself in an enabling role to help him hide his many symptoms. Now that he is coming to hopefully understand and accept it, I hope it will make it somewhat more tolerable.

We have a very good family therapist who is helping the kids understand what's happening. It is hard to accept and the therapist has experience with LDB patients, too. The unpredictability and uncertainty is something she is working with all of us on. Building emotional resilience is what we are working on now.

One thing we are struggling with is how do deal with people who ask what is wrong with my husband. Some ask us if he has cancer or an injury or what. He doesn't want to tell anyone. That makes it hard, because there is a line between privacy and secrecy. Can anyone weigh in on how they deal with people asking what's wrong?

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