Connect
← Return to Lewy Body Dementia at age 51: Anyone else with early onset LBD?
Discussion
Lewy Body Dementia at age 51: Anyone else with early onset LBD?
Caregivers: Dementia | Last Active: May 5, 2023 | Replies (89)Comment receiving replies
@IndianaScott @cmiddlet I wanted to comment here, and please, if this is not the right spot, tell me.
What you are going through, have gone through, is something so many of us experience. The degree that you decide to disclose a health situation, is yours alone, whether it is to family, friends, or co-workers. There is simply no guessing how others might react, nor how considerate/inconsiderate they might be. From my own personal experiences, I am not the same person I was 5 years ago, neither physically nor mentally. I accept that. What is difficult is for others to point it out, in a desparaging manner. That will get my hackles up, and my response is not always pretty! I value my privacy, but do try to educate people when possible, and hope they will treat others in a more compassionate manner from then on.
Ginger
Replies to "@IndianaScott @cmiddlet I wanted to comment here, and please, if this is not the right spot,..."
Connect
Thank you for your insight. I am hearing impaired (worn hearing aids since 4) and I understand being ashamed/embarrassed. With LBD, it is so different, with symptom severity constantly changing. It's clear cut to diagnose hearing loss while LBD and related things are very difficult to diagnose and treat.
Most people who ask me "what's wrong?" I think want to help. Its just hard because I want to protect my husband's dignity but at the same time, I am trying to figure out how to be a LBD caregiver and I could very much use help from friends and family.
I was mercilessly bullied in school for my deafness and my husband and I don't care what strangers say about either of us. We have helped countless friends and family who dealt with cancer, AD, ALS, suicide, cerebral palsy and many other conditions. When doing so, it was certainly helpful to understand the situation so we could help in the most meaningful ways and to know what to expect down the road.
LBD is really tough to explain. I was just wanting to know how others might have explained to caring friends and family who want to help but don't understand what LBD is.
My daughter, 15, suggested saying "he has a neurological condition. Thank you for your concern." - for close friends and family, not strangers or casual acquaintances.
It is a tough subject, it is very helpful joining this group because your experience and comments help in navigating this journey with grace.
Every day I pray a cure is found.