← Return to Lewy Body and weight loss

Discussion
teacher502 avatar

Lewy Body and weight loss

Caregivers: Dementia | Last Active: 3 days ago | Replies (28)

Comment receiving replies
Profile picture for deb28 @deb28

Hi Jan, I am in a very similar situation with my sister Cherie who is now 64. In 2020 we noticed her repeating the same conversations we had just had with her. She also was having a hard time at work remembering how to get on her computer and other things. She had all kinda of testing done. Nothing was conclusive so they defaulted to Alzheimer’s. It has been difficult getting a diagnosis but just this year a doctor at Brigham and Women’s Hospital in Boston diagnosed her with LBD with Parkinson’s which fits all her symptoms. So it took 5 years to get her diagnosed correctly! She is also in the late stages and has lost 30lbs in the last couple months bringing her down to 105 lbs. She’s just not hungry and sometimes it makes her feel sick to eat. She has a rollator now to help her walk. We can’t have conversations with her anymore- she just answers questions. Her beautiful face has no expression anymore. She hallucinates but it doesn’t scare her. She sleeps so much and acts out her dreams. I’ve been working on giving her quality of life, bringing her to see her children, going out to lunch or just for a ride. But it seems that strategy is ending. She doesn’t want to do anything. My heart is breaking. I’m sorry that you are going through this also. To see your loved one slip away from you when they are physically still here is devastating. 💔

Jump to this post


Replies to "Hi Jan, I am in a very similar situation with my sister Cherie who is now..."

Hi Deb, I am so sorry. This disease is relentless and is hard to describe to others because every case is different. My sweet hubby has lost down to 142 lbs and is completely incontinent. Because he was always very athletic, he is still walking but not as well. His vision has been affected and he walks into walls, falls on the floor when he thinks he is getting into bed, sits beside the chair and not on it causing a fall, etc.. He eats, but we usually have to feed him. Somedays he sleeps 22 out of 24 hours, somedays he sleeps 2 out of 24 hours. He does not like to be changed, and that is always very challenging, but we get the task accomplished. I am always tired, but I am also more determined than ever to finish strong and be there for him. I pray you will be able to take great care of your sister and find moments for yourself (much harder than it sounds). God bless you for caring enough to take on an impossible disease, and make your sister's journey one with centered with so much love. You are a very special person.