I have not posted in a long time, and I never thought things would go downhill so fast. When I last posted here, I was looking for ideas to deal with mom's incontinence. She's 86, with dementia and diabetes. I got an aide, for 4 hours daily, to help her in the bathroom and other ADLs. Mom’s at least walk very slowly to the bathroom.
In June, mom got pneumonia, was hospitalized, went to rehab, did well and came home and walked so well that I was stunned at her speed. However, as the PT from visiting nurses stopped, mom's walk became slower and unsteady., The aide or I would be around her to help.
In November, mom slipped & fell at home, had hip surgery for a fracture, went to rehab for a month. This time the rehab was a total flop - mom just refused to walk, would not even sit up on her own and rehab sent her home last week. We got a hospital bed and mom became practically bedridden.
Then last weekend, mom was just not her usual self & seemed to be in a coma. We rushed her to ER, turns out she had UTI & her sugar levels had shot up. She's now stable and back to her usual self and will come home with recommendation of home PT.
I doubt if mom will work with home PT. She just doesn't want to get up and says, "she will walk tomorrow, or she walked already today," etc.
Despite the dementia, does it mean she remembers falling & is scared?
In the November rehab, I attended some of her PT sessions, bribed & begged her to get up but nothing worked.
Is bedridden the new normal? She can live for another 10 years like that?
DH aunt,96, goes back on hospice tomorrow. She has been on rehab since the week after thanksgiving. She has been increasingly bed-bound for the last year. She had speech, ot and pt. Complaining bitterly about each.
Amazingly I received a text from her therapist one day saying she was on the parallel bars with an excellent attitude. Most days she totally refused, said she would get up when she wanted to.
For her, the best part of going back on hospice is her long time CNA (with hospice) will be back. This CNA gets her out of bed for a shower and will then have her up in her wheelchair for a good portion of the day. Lying in bed all day leaves her more susceptible for pneumonia and bedsores. So I’m hoping she will return to that routine of sitting up but after having been separated from her CNA for so long, hard to know.
On the other hand, my 87 yr old uncle, fell in late October. His hospice nurse was visiting when he threw up blood and the nurse encouraged my cousin to take him to the ER. Over the next two months he was in three hospitals, a rehab and then a private care home. Cousin was not able to handle him alone anymore and needed help. She would pick him up and take him to the senior center he enjoyed going to for lunch. He seemed to be doing well. He was sitting holding hands with a lady friend at the senior center on Friday, the 16th. They made a date for her to come play cards on the next Monday. The following day after having a good breakfast and lunch, he was taking a nap. The aide went in to change him and as she was helping him turn over, the aide heard a soft gasp and he was gone.
We can’t help but wonder how long they will live and probably the most accurate answer in the big picture is … not long…but in the moment we have to take one day at a time.
Anyway, I will ask the Dr to write a script for home hospice then - the hospital nurse practitioner at the hospital said won't qualify for hospital hospice since mom's vital signs are ok. I'm going to increase aide help for another 2 hoursr/day who will move her from the hospital bed to wheelchair & back. I cannot afford more aide help/facility since Mom won't qualify for Medicare/Medicaid for another 2 years.
Certainly she has Medicare now and if she has Part F, they pay days 21-100 in a SNF. If your do decide to place your mom in-care, the private pay will expediate her qualifying for Medicaid. You may want to look into the 5 year look-back in Medicaid rules.
Best -
This is a place she was going to reach sooner or later even without all the things that have zapped her strength, and I am doubtful that she can ever regain her ability to walk again after so much time has passed. Rather than pushing rehab exercises to keep her walking I would focus instead on her being able to at least bear weight long enough to stand and pivot; this will allow you to get her into a wheelchair, onto the commode/toilet and onto a transfer bench for showers. Just getting her up and moving every day will greatly increase her quality of life and reduce the care burden.
Home hospice sounds like a good idea Weary. Sending you a hug and a prayer for strength & peace as you walk this journey with mom.
It seems possible that mom's latest fall might have also involved a stroke. Even if an initial CAT scan or MRI was done at the time and showed nothing, our experience was that sometimes evidence of a strokes shows up later.
Do you have a wheelchair for mom?
yes, we have wheelchair, hospital bed, shower chair & the toilet commode. I don’t have ramp though .. will look into this later
thank you for replying
Enjoy your Holiday with your family.
yes, I have asked for home hospice consult
I'd say you should insist mom at least get into a wheel chair and use her arms and legs to propel herself around, if such a thing is possible in your home. Keep her out of bed during the day and for meals, etc. The likelihood of her living with dementia for 10 more years is slim, especially if it's vascular dementia which has about a 5 yr life expectancy to it. My mother lasted about 6 yrs after she was diagnosed, but she had dementia a couple yrs before then. Your mother seems to be on a downward spiral lately, which also happens sometimes with dementia, so that can signal her life expectancy is shorter than you realize. Mom was on a pretty steep downward spiral for a year before she passed. I'm not sure if your mom is Medicare approved yet, but if so, look into a hospice evaluation now.
I know how difficult this journey truly is, and the wondering what's coming next is so hard. My heart hurts for all you've been thru and have yet to endure. Stay connected to support, get rest and respite as you can, and stay strong. All the best of luck.
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