Follow
Share

Dad is sleeping pretty much most of the time now, about 23 of the 24 hours of the day. Still drinks his protein shakes 2x per day. He started refusing all other food (cream of wheat, eggs, etc.) his usuals about 3 weeks ago. And now he rarely gets out of bed - not even to smoke! Just when I tell my family that I think he's getting close - yesterday he gets up, dresses, and comes out to watch the live bear cams that he loves on the tv. Today he's back to bed -he's been asleep since yesterday afternoon. Just looking to see if anyone has experience with this and what to expect? I've talked to his doctor who just says that it's a normal progression of the disease. I know they stop eating, drinking, etc. But the re-bounding yesterday, and getting up and even sounding almost like his old self Wow!. It was so strange. Today he's gone again. ??? I'm wondering if this stage of the disease last months or ? Does anyone have experience with this. Thank you in advance!

Is your dad now on hospice? If not, why not?
Why are you making nutritional drinks that will prolong his life and his suffering, and the suffering of all who stand witness?

Please allow Dad to sleep, speak with the doctor about Hospice care, and don't push nutrition.
I am so sorry.
My brother was diagnosed with Lewy's and he literally prayed to be able to beat its progression to his grave. He did so by dying of sepsis from a small sore about 1 1/2 years after diagnosis. As a nurse I knew what was coming, and so did he.
Death is far from the worst that can happen to us.
I am so sorry, Mama.
Helpful Answer (2)
Reply to AlvaDeer
Report
Mamacrow Aug 11, 2024
Thank you! Yes, Hospice is forthcoming. I spoke with his doctor this week to begin. I believe they will be coming in Tomorrow. The doctor has had me offer the protein shakes for him - I do not force food on him or the drinks - I just place them there on his bed table - if he wants them he can drink them. If not - that's okay too. This past week it's hit or miss - 1 or 2 - yesterday it was 2 - today so far zero! So, I'm not pushing food on him, it's just there If he decides he wants it. I've even had the talk with him about death. I asked him if he was afraid, and he said no, and asked me not to be afraid - which I'm not. I told him not to be afraid to leave us - we'll all be just fine - you go when you need to Dad! I've been caregiver to my Grandmother (cancer), Mom (heart disease), my Husband (multiple organ failure), now Dad. So death to me is just another phase of life. I pray he goes easily and soon for his own sake. No one wants to waste away in a bed. I was just wondering how long this phase might last , but I guess it's dependent on each individual - makes sense. I've never know anyone with LBD - so not sure what to expect other than what info I get from watching Youtube videos on the subject. Thank you again for your support.
(4)
Report
Just go with it.
I will share my experience with my daddy.
When he did not get out of bed I knew the end was coming - didn't know how long but for an active man I knew. Seven days before he would feed himself and chew his food. It wasn't a lot for a 246lbs man but thats what he wanted. Four days before he passed away I had made him breakfast but he would not chew, it just sat in his mouth. I told him to chew and he just moved his jaw up and down. I called hospice - but because it was Sunday I had to wait for a call back. When they called back my daddy had gone into a coma and I told them that I could not wake him. My point is as long as you dad is drinking, waking, and doing go with it. If he sleeps he sleeps if he drinks let him drink - just make sure that he is sitting up so he doesn't get the liquid in his lungs. Also, hospice will walk you through everything - the hospice people I have worked with (mama, daddy, sister) they were all great and talked me through every step. Know as I have written this I have said a prayer for you and your family during this time. Hugs
Helpful Answer (2)
Reply to Ohwow323
Report
Mamacrow Aug 12, 2024
Thank you so much for your reply - Very much appreciated. Thank you for the prayers! I just hope he goes peacefully!
(1)
Report
First I will say that I hope you have hospice on board by now.
Then I will say that what your dad did yesterday sounds like what is called rallying, which often happens shortly before death.
The hospice nurse can answer any questions you may have about end of life, but only God knows that day and time that He will call him Home, so just enjoy whatever time you may have left with him and make sure that you leave nothing left unsaid.
Lewy Body dementia as I'm sure you know is the second most aggressive dementia with a life expectancy of just 5-7 years, and with your dad being 96, I'm sure his time here on earth is more limited.
So again just enjoy whatever time you may have left with him.
God bless you.
Helpful Answer (1)
Reply to funkygrandma59
Report
Mamacrow Aug 11, 2024
Thank you! We've covered all the bases. He's just waiting. poor guy! I'm doing my best to keep him safe, comfortable & well-cared for until his time comes! I think he was rallying as well. It was very unusual - his memory was even more clear - he remembered one of the old bears that he loved from last year - Otis - Where's Otis he asked! Wow, I was shocked!
(2)
Report
Ask a Question
Subscribe to
Our Newsletter