Aging parents - late life (end of life?) costs

[cricketwife]

I'm looking at moving my mother to a different facility and it will be an increased cost.  Depending on the option I choose - shared room, vs. private room, it will be a lesser or greater increase. I'm trying to weigh using her money to give her the best quality of life possible, with making sure there is enough at the end.  If she never had to leave this place, she could afford the better option until the end of her life.  But I'm curious, especially if your loved one had Alzheimer's another form of dementia, did you have increased care costs? More hospital bills?  Was the "very" end of life more expensive than like, 3-5 years before the end?  I hope this question makes sense.  Of course I don't know how long she will live. She's stae 6 or 7 Alzheimer's and sadly, in great physical shape.  2 years ago, I couldn't imagine her living more than another 5 years. But now, I feel like this could go on forever.  Any insigth, anecdotes, etc would be great.  This is a post and run. I'll check back later!

ETA: I'm "liking" posts to acknowledge that I appreciate your reply.  None of this is likable. 

[pixy0stix]

Typically end of life care is more expensive as it's more hands on. My grandpa's progression was relatively quick, but he went through 3 different facilities during that time. Each one more expensive than the next as his needs became greater and his dementia progressed.

[janegold]

It was more expensive for my FIL as we needed to hire a lot more help, but he was at home. A lot of it was covered by his Medicare hospice benefit, thankfully. We did look into moving him to a facility (my MIL ultimately preferred to care for him at home) and in the last year, his condition quickly progressed beyond what assisted living / memory care would have been able to support; he would have needed a nursing home, which do tend to be more expensive than AL. He did not have a lot of other medical needs in his last year though, thankfully.

[Tacocat]

I’m sorry you’re going thru this and making such tough decisions. My mom passed last year from a brain tumor that she opted not to treat due to the location and risk/outcome of treatment. I realize not the same as Alzeihmer’s, but she did go from living alone to needing more and more hands on care as the tumor grew larger. My sister and I had to make similar decisions once it was clear she could no longer live in her apartment even with someone there all the time (she started falling and trying to get out of bed because she’d forget she needed help). Anyway, we ultimately decided that we wanted her to have the best care possible and opted for a facility that was more expensive but knew she would receive excellent care at the end of her life. My sister and I were so glad we made that choice as the staff was beyond caring and we knew she was at peace at the end. Good luck and hugs to you.

[fn2187]

Regarding the single or double room, I think there’s more to weigh than just costs. I had a love one pass away in a facility in which she was in a double. Her roommate was incredibly helpful. She would sometimes yell to get a nurse in the room when my love one couldn’t. She’d tell us (family) things that had been going on that nurses failed to tell us. Of course you always have the chance of a bad roommate but it worked out for the best for us. Also I think it helped our loved one not feel totally isolated.

[mokes]

I sent a PM

[cricketwife]

Oct 22, 2024 17:08:31 GMT -5 fn2187 said:

Regarding the single or double room, I think there’s more to weigh than just costs. I had a love one pass away in a facility in which she was in a double. Her roommate was incredibly helpful. She would sometimes yell to get a nurse in the room when my love one couldn’t. She’d tell us (family) things that had been going on that nurses failed to tell us. Of course you always have the chance of a bad roommate but it worked out for the best for us. Also I think it helped our loved one not feel totally isolated.

I'm glad you shared this because if anyone else reads this thread in the future, I think it's a very good point.  In our case, all the residents have dementia, so roommate or not, they will be of no assistance. 

Due to various circumstances (evacuation due to Hurricane Ian, timing of my SF's death, etc), she has been in several facilaties in the last two years.  She has both had a roommate and not had a roommate. Two years ago, I thought a roommate was a positive. If nothing else, I thought it would be nice to wake up and not feel totally alone in the world. It also has the added benefit of being cheaper.  Two years later, I see it differently.  It seems to be more of an agitation that there's a stranger in the room.  Though it's not enough of an agitation that I would rule it out and of course, we all do what we can afford.
  
I, personally, also prefer that she not have a roommate. If the roommate is napping or not out of bed yet (she's a late riser) then I can't go in the room.  My mom also ends up wearing her roommate's clothes a lot because they share a closet. (It's all labeled and they have two different sides, but it still happens a lot.)  On the one hand, none of that is a big deal.  On the other hand, I know my mother would NEVER choose to have a roommate and it feels like a minor late-in-life dignity. 

All good thoughts and it helps me process. 

[mrsslocombe]

It's been wildly different for each family member. My MIL's personal care cost was fairly low, but her final hospital bill was astronomical (but thankfully covered by her supplemental insurance). Her doctor bills definitely increased a lot because she was getting biweekly infusions, and those added up, she had a lot of prescriptions, she broke a hip three times, frequently needed PT, etc. Does your mother have supplemental insurance? That is one key thing to keep in mind when it comes to medical costs.

My FIL so far hasn't had much change in his care cost so far, but he's only a year into the shit hitting the fan for him.

My grandmother lived for 20+ years in a her retirement community, and the only increases were due to inflation.

My gut feeling is, give her the best quality of life right now. If things change in the future, then you will change with it. Especially if she is in a state now to be able to "enjoy" the higher quality of life.

[jackie011]

We just went through this. My MIL passed in August, after spending almost exactly a year in a SNF. It was a very upscale, everything is included kind of place, and we went into this knowing they would be able to provide care for the rest of her life. If you had asked me on July 16 if I thought she would have passed a month later I don’t even know how I would have responded. The nurse manager called us once she saw that she had lost 25 lbs in a few months and was showing very little interest in eating. We had a meeting with her medical team and decided to start the hospice process. She passed two weeks after that phone call.

There were no additional charges for the (amazing!) hospice care she received. My FIL had prepaid funeral arrangements and I think there was a final payment that he owed for that. She didn’t have any hospital stays beyond the initial incident that sped up the process of moving her into the facility.

She was diagnosed with dementia in Fall 2017, so about a 7 year process.

[bee20]

For Alzheimer's specifically my uncle was expected to live less than a year in a care home, but then he lasted 4. Some places allow you to transition to medicaid if you run out of money after entering with your own assets, that might be worth checking into.

That being said, most elders in my family have had roommates and it's no worse privacy wise than having someone take care of your daily needs at end of life.