Geriatrician
Comments
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I'd take the doctor's advice. There's no harm in asking for a hospice evaluation. The rules are a bit more lax for dementia patients and accepting help from hospice does not necessarily indicate that she will die within six months. There are a number of posters here whose loved ones have been on hospice for more than a year.
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hello I will definitely discuss this with my siblings! Thanks
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Hi and welcome. I am sorry for your reason to be here but pleased you found this place.
It's great that your mom has a geriatric specialist; they can be an excellent care option for a PWD as they are much more aware of the impact of dementia on those who have it and their families. It is stunning how often other PCPs and specialists don't factor in dementia when ordering tests and procedures.
I'm a little confused by a couple points. Who is your mom's POA/guardian? Who does she live with? You say mom is homebound but you took her to a doctor's appointment? You mention the need for assistance with ADLs; is she also incontinent? (Incontinence is a good indicator of the stage of dementia) What does "fight to live" look like to you? (I'm not being snarky, it's just the people I know who had dementia-- dad, 2 aunts and a friend's mom-- became so apathetic there was very little interest in anything)
Tam-Cummings-LLC-Handouts.pdf (tala.org)
I can understand the desire to improve mom's physical conditioning. Dad spent almost all his time sitting or lying down and became very deconditioned by the mid-stages of dementia. He'd previously been fairly athletic-- golfing 5 times a week, swimming laps and even lifting weights. Dad spent some time in the hospital in the early middle stages and was discharged to a SNF/rehab. Because he was used to "going to the gym" and "trainers" he actually cooperated, but 15 months later when we asked the PCP to order PT for him, dad simply refused to do any of the homework assigned between visits and the PT dismissed him. TBH, he struggled to do them with the PT because of motor planning issues related to his dementia. The latter scenario is very common in med to later stages.
A day program might be a good option for you and your mom. It could give you some respite while giving your mom supported socialization and dementia-informed activities she might enjoy.
The suggestion for hospice is not an indication that her doctor has given up on her or that her death is imminent. They can offer some hands-on help with things like bathing to supplement what you do and supply things like DMEs (hospital beds, lifts, wheelchairs) which can make care easier as well as incontinence supplies which can become a big expense. Most folks wish hospice was engaged earlier once they get used to the concept.
HB
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Welcome to our little niche, sorry for the reason though.
Definitely get a hospice evaluation. If your mom’s admitted they will likely be an invaluable added layer of support. We are one of those that had hospice on board for 1.75 years. As M1 said, a dementia patient is often not the average hospice patient, who’s life expectancy is 6 mos or less.
We also used an adult day program for a bit, which was good while it lasted. My mom was doing PT prior to moving her here. We elected to continue PT but that was only feasible for a short while. There comes a time that it’s just not a realistic goal for a dementia patient. Mom used a walker for a long time, then she became wheelchair dependent. Eventually my mom became home bound too. Leaving was just too much for her, even just around the block to my home. Finally she became bed bound.
This is all so heartbreaking. I’m so sorry you’re in the middle of this unfortunate journey. Thanks for sharing, keep coming back with whatever you’re feeling or questioning or screaming inside about. There’s bound to be quite a few folks that understand and can provide support.
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"she has a heart of gold and is sweet" same situation here EXCEPT that my dementia patient is mean and nasty!
"There are a number of posters here whose loved ones have been on hospice for more than a year" I can atest to that statement with no end in sight!
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Hello my sister has POA for my mother and yes she is incontinent. She can tell you when she has to go to the bathroom but cannot clean herself. We can take her to the dr but her legs are weak so she would need assistance x 2 to get into the wheelchair and car. I was thinking about going to a day program so she can socialize with others but we are still open to anything g.
thank you for your response
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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