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← Return to Lewy Body Dementia at age 51: Anyone else with early onset LBD?
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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)Comment receiving replies
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?
Replies to "Thanks for replying, Colleen. My name is Carrie. I've used the cmiddlet handle a long time...."
Carrie, that's a great question to a very common situation. When my husband was diagnosed, I was accepting of his disease and wanted him to be accepting as well. I have had epilepsy since I was very little and have always answered the question, "What's wrong with you?" No problem. So, one day, my husband wanted to go into a store by himself to ask a question. I encouraged him to start the conversation with "Excuse me, I have a question. But first, I should let you know I have the dementia, so I may ask you to repeat yourself." He came out of the store happy and excited. His question was answered, he found a new friend, and he realized he was accepted as he was. He still lets people know he has dementia although now he is losing his speech along with other skills. Test telling people who you know. This is a way of educating our society. You will be surprised at how many people know someone who has the exact same disease. There are lots of compassionate people in this world too. It's a GREAT conversation starter. 🙂
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Hi, @cmiddlet I'm Scott and my MIL was diagnosed with LBD while my wife fought brain cancer, which gave her multiple dementia-like symptoms.
I fully recognize that each patient, their disease, journey, and caregiver are unique, I did want to share our experiences about your question about "what's wrong".
With my MIL, my FIL was in full denial and embarrassed to tell anyone at all for the first couple of years that anything was wrong with his wife. Interestingly when he finally did open up, every one of those folks said "oh, we always knew something was wrong" so they knew all along and he ended up not having some folks help, who were willing to.
With my wife, it was a bit different. She was intensely private about her disease, symptoms, etc. I think this was basically due to the significant number of family and friends who ghosted on us due to her impaired mental/emotional abilities. I gave her the privacy she wanted and left disclosure up to her but did tell a few friends what her situation was when they eventually
approached me and asked, always in private.
The only "situations" we had were early on when my wife was able to go out with us in public and some uncaring individuals would feel the need to comment about my wife, within earshot of her and our family. The first time this happened our son was with us and quite publicly ripped into the guilty party regarding their lack of courtesy (to put it mildly). Interestingly, after that when it happened again, she must have taken heart in our son's example and it was my wife who would rear back and unceremoniously and bluntly explain her situation.
Not sure if this is helpful or not, but wanted to share.
Strength, Courage, & Peace