When does this end? Advice needed

vtech1951 · November 2023

Heres our story,,we live in a small town in rural Kentucky, seeing as there are no good memory care homes my MIL lives with my brother in law she is 85 years old, was assigned hospice in Jan 2023 6 months later, hospice renewed for another 6 months,,coming up for another 6 months renewal in a couple of weeks,,mother is bedridden, cannot walk, can be placed in wheelchair for the day, has no interest in TV, music, or cannot carry a conversation at all, falls asleep around 10 or 11pm and wakes around 7 and does not nap at all during the day, is only interested in eating all day or screaming nonsense all day, she has to be changed 6 to 7 times a day, spending a fortune on caretakers everyday, is in a misserable or bad mood 90% of the time, I wish I was making this up!!

Marp · November 2023

I'm so sorry. I wish I had some pearls of wisdom for you.

Hopefully, someone else will.

SDianeL · November 2023

unfortunately there is no answer. So sorry you are going through this.

harshedbuzz · November 2023

@vtech1951

I am sorry your family is dealing with this.

It's hard to make predictions around the rate of disease progression because it can be very individualized and there's always the possibility that something else could be a cause of death. Tam Cummings has a chart that breaks down averages; she would say most PWD who make it to stage 7 live another 1-2 years. That said, it can be all over the place. My dad passed within weeks of hitting his first indication of stage 7; my aunt lived about 2 years in stage 7.

Losing weight and loss of appetite is often an indication that the end is more likely within 6 months or so. With my aunt, she went through a couple phases where she refused food and liquids for a week or so leading us to believe she was ready to pass but then would return to eating with gusto. Dad's appetite and ability to self-feed remained, but his digestive tract was not working well (the brain controls it all) and he was losing weight at a noticeable rate.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

If she seems agitated and angry, the hospice doctor could prescribe something for her mood which would make this situation easier for all involved.

Given your description of your MIL, she is no longer a candidate for a MCF-- she'd likely need a SNF. It isn't unusual for those living in rural or isolated places to have to travel an hour of two to find an acceptable place.

HB

Emily 123 · November 2023

Hi vtech,

One of the horrible things about this disease is that the people who have it tend to be pretty healthy otherwise, and so the decline is the main healthcare issue for them--they don't have some other big catastrophic event that takes them away earlier. They do say that a person progresses through the stages at about the same rate, so if it takes two years to go from 3 to 4, it'll take 2 years to transition into stage 5. See what you think about the Tam Cummings tool HB shared.

Is a skilled nursing facility an option? Are you or BIL comfortable enough with the hospice team to discuss if that might be reasonable? Sometimes talking with folks that cover the area you live in can help. Ultimately it's the decision of the POA/primary caregiver as to what they want to do.

This is a weird suggestion, but can you see if playing music from when she was young might soothe her? (Headphones, if she can handle them). Sometimes that can help them be calmer. I agree that maybe hospice could adjust her meds to help her.

vtech1951 · November 2023

Thank you for the TAM Cummings Chart, it was very helpful! Based on the chart here is where she is at...

Stage 6

PAINAD-

Breathing-1

Negative Vocalization-5

Body Language- 8 or 9

Consolability- 2

Actively Dying Assessment Tool- No Symptoms

missylane72 · November 2023