Connect
Going from Stage 6e to 7, Lewy Body, What next?
My mom is on hospice in a memory care unit. It appears she's in the process of entering stage 7 of DLB. I prefer to know exactly what to expect and when, yet I realize this isn't feasible. BUT... what should I expect?
Currently, she falls all the time and for the past week or two, has about a 10-second memory. For the first time, she called me by the wrong name yet I could tell she knew who I was. She wants to sleep all the time but agitated in the eve with sundowners. Eating now about 5% of 1 to 2 meals. Lost 30 pounds since last year.
But, she can speak but sometimes makes no sense.
I put all the symptoms in AI and asked for life expectancy, maybe I shouldn't have. It said 6 weeks to 3 months on average. But, no telling.
Will she plateau like this for months? This long goodbye is heart wrenching. Thanks for taking the time to read, it helps to express what is going on.
Like
Helpful
HugInterested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Connect
I know it is so hard to see your mother like this and to wonder what is next. I am so sorry! I think the fact she is in hospice care means medical personnel think she is nearing the end of her life.
That said, I would caution the use of AI to “stage” Lewy Body Disease. Unlike Alzheimer's, LBD is not classified in stages, because LBD is far more variable and less predictable than Alzheimer's. I recommend you avoid AI to predict end-of-life scenarios in LBD, and instead, consult Mayo Clinic and/or the Lewy Body Dementia Association.
Your mother is lucky to have your love and care.
-
Like -
Helpful -
Hug
9 ReactionsTalking through what you see happening can bring a softer perspective about it. Just talking out loud, or writing it (here for example) can relieve the pressure to understand by giving value to observation. In that process there can be a subtle kind of understanding. A kind of acceptance maybe.
May you find peace in your steps this day. Me too.
-
Like -
Helpful -
Hug
7 Reactions@nelms Thank you for your input. I tend to overthink and I appreciate what you wrote.
-
Like -
Helpful -
Hug
2 ReactionsUPDATE: I realized I want to focus on life more than impending death. A friend asked me, "If you knew the exact date, what would you do differently now?" My answer, nothing. I'm doing all I can. I stay in the moment when I'm with her and my focus has changed a little which brings more peace.
-
Like -
Helpful -
Hug
6 ReactionsIf she is eating 5% she will not go on very long depending on her current weight? Was she over weight to begin with? Drinking is a better indicator. My biological mom passed 5 days after no drinking. My step mom passed 3 days after no drinking. Is she on morphine? Mom started morphine every couple hours with occasional Ativan. Passed 2 days later. Drew her hands up to her chest a lot, picking at the sheets, legs/ feet restless, once marbling of skin or extremely cold hands & feet you have hours left. Hope this helps.
-
Like -
Helpful -
Hug
2 ReactionsThanks. No she was 137 or 138 one year ago. Today she is 108, 5' tall. Last week, she started picking at her fingers and fingernails until they bleed. I have sense read up on it. She is on a pain patch after a bout of refusing meds or spitting them out after nurse leaves. I think she's in a rally. She's doing better than she has in months.
It's confusing when she seems better on one hand, but she has trouble following a simple direction, like "Let me see your hand."
-
Like -
Helpful -
Hug
1 Reaction