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My mom was evaluated for hospice last week and they told me that she is at 7a on the Fast scale. When they evaluated her, she was sleeping almost all day, would only answer yes or no to any questions (if she would answer at all), and was hardly eating anything at all. I decided to go ahead and place her in hospice care, because after the last 2 hospital stays (1 in Nov 2021 and 1 in March 2022, plus countless visits for UTIs and other issues), Mom was declining rapidly, has lost the ability to walk, and is completely incontinent. Well since this weekend, Mom is eating anything she can get her hands on, is talking about things she hasn’t talked about in a long time, knows me and my siblings, but is also very restless and anxious! So, I’m wondering if I was too hasty in placing her or if the hospice people could be wrong? Sorry for such a long post, but I just wanted to give as much detail as possible!

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Hi DEM,
You don't tell us Mom's age, but one of your earlier posts in Sept 2021 you said she had been diagnosed 8 months prior to that with mild dementia which you felt was much more severe. You said you had moved your Mom in with you. Now you have had here there for some time and have been witness to her serous illnesses and her deteriorating health and well being overall. So you pretty much do know that overall this is a downward slide.
Hospice isn't a death sentence, but it is end of life care, and there won't be further testing and diagnosis and treatments toward recovery planned. Your Mom will have good support and that often bucks people up a bit with visits from aids, clergy, social worker, RN. This is all a good thing, but I believe over time, over months, you will not see any "recovery".There really isn't a recovery from dementia of this type, nor of the losses that come one after another, incontinence being but one.
I would focus your questions to the hospice personnel now seeing Mom. They are your best guides because they know her best. They won't withdraw hospice from her because she has a few good days.
Hospice recognizes--both they and YOU--that basically you are in the end stages of life. If one week is better than the last that is just great. Enjoy that time. Enjoy the extra care. Try not to second guess yourself when you do know,and have seen where your Mom is inevitably heading.
I am so glad she is having some good days. Make them the best you can. And very good wishes to you both.
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DBM1941 May 2022
Thank you for taking the time to reply. I guess I am second guessing myself but I just assumed that the last stage meant that the person with dementia would be unable to communicate or have any memories of people or want to eat.It has been a roller coaster ride so far and I don’t know why I thought the end would be any different but I will definitely enjoy all the good days that I have left with my mom. Nothing makes me happier than being able to make her laugh and smile!
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Lewy body and vascular dementia can have big fluctuations of symptoms.
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Yes I believe there can be moments of clarity. Moments where you see person again ❤️.

Teepa Snow, dementia care expert, calls the final stage *Pearl*. Like a beautiful treasure hidden within a shell, beautiful when you glimpse it.

Music has been found to reach many brain areas. There was a lovely YouTube of a non-speaking lady who began to clap & sing to a favourite hymn (warning: 😥😥😥).

I don't think the timing for Hospice is an exact science. What matters is that you have support & can focus on care, comfort & still able to share good times. Too many stay locked in their battle-mode, struggling in the trenches alone & miss the connection that may have still been there.

A friend told me she had noticed a surge of energy in the final days or weeks with relatives. Like a candle burning brighter before it goes out. I liked that. However, I don't think it means that any improvement spells imminent end - just that the body is changing. We are all changing every day afterall..

Peace to you.
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