parent care

[steady saver]

This has been quite a year!

Please be prepared that this is a purge more than anything. I'm not expecting any ideas really. I just need to vent.

DH retired just over a year ago. His sweet dad passed away 6 months later at age 80 after dealing with many years of health issues. He and my MIL were living in an assisted living center at the time. MIL has long-term degenerative disease and will likely live perhaps another 3 years but who knows. She is now in a skilled nursing facility. She has LTC that is covering most of her expenses.

My father (just turned 91) fell in Sept and is still in rehab center though was released a week ago...trying to move him to skilled nursing but Covid lockdown put the breaks on that. Now my mother (84) is showing signs of dementia that she had previously been able to hide.

I know none of this is anything new. Except it is to us. My dad has some dementia, with memory and decision making worse since the fall but he is still sharp about some things. The challenge is that my father, a wonderful man is so many respects, can also be extremely challenging and demanding. The other challenge is that my father who has always, always prided himself on his financial prowess did not, it turns out, plan well financially. He planned just fine if both he and mom were to die blissfully in their sleep with few health issues to precede them. It has been an emotional nightmare. My parents have enough money for my dad to be in a skilled nursing center for about 3 years. They own their own home. Their monthly income should mostly support my mother once he passes (within 3 years!) but her memory issues are becoming very, very apparent and I am already thinking "memory care." She is literally "deer in the headlights" about simple things. That has me concerned. I am in a different state. I have two sisters within 30 min of my parents and another sibling also out of state. We are dividing tasks up as much as possible and I'm so grateful that is going relatively well.

I know I'm rambling. Here are the two things that go round and round in my head:
1. We're in the process of applying for VA benefits for my dad (he served for 4 years in the Air Force). If he gets them, then there's a facility in their city, closer to one of my sisters. But it generally doesn't have private rooms available but it gets good reviews. If he qualifies she'd be paying roughly $1300 a month verses $6500 a month at the facility he's about to move into. My mom will not consider that AT ALL, and my dad irrationally says they'll both just move to Mexico "where care is cheap." Two of my sisters (one who is definitely not in a position to help out financially and the other doubtful) agree with my parents that he should not consider the VA option. Geez
2. I admit I'm just angry. We have LBYM our 34 years of marriage, have just retired and are just now on the cusp of doing things that actually cost money. My parents weren't super extravagant but they didn't deny themselves either. They traveled extensively (over 50 trips to Hawaii, some for months at a time...), bought nicer cars than we have. In the meantime, My DH has a 50% chance of inheriting the same disease his mom has. Work is behind us and I want to do all those things we planned for and dreamed about. I figure we have about 10 years before his illness would really start to kick in if he has inherited the gene. (And no, we don't want to know b/c there's nothing we can do about it if he has it) We don't have LTC insurance but have planned and prepared for his care and mine as well. We do not want to be a burden to our children. I want to finally DO the things we've dreamed of and yet I find myself feeling guilty b/c it might possibly require my dad to move to a different skilled nursing facility if he lives more than 3 years. I've already resolved that my mom will likely need substantial financial help and I'm preparing for that. But I'm less inclined to jump in to rescue my dad b/c the facility he ends up in isn't his first pick.

I want both parents to "finish strong." I'm just wrestling with what that means for both them and us.

Thanks for letting me vent. It's strangely helpful.

 

[teetee]

Our family is currently going through the hospice planning stage for my grandfather who is 97 years old. His mind is mostly gone (good old dementia) and my aunt, my mother, and I are taking care of him in his assisted living apartment sponsored by the state government.

It only gets more difficult after they need someone to care for them until they pass. First is the fall, then stroke, and then cancer (often in that order). Any of the three can render the elders lose their mobility.

I hope you don't get the family drama that we are having. Any sibling grudge will likely trigger the drama. Then the relationship won't be the same.

Dementia can last for years. It is eventually up to the durable power of attorney to decide whether if your FIL/MIL should sell their house and move into a nursing home. Then once both LTC and the money from the house run out, it is up to the kids to decide who can take care of them and who provide the financial support.

It is a long race and the goal is to do all you can to provide some quality and dignity for the parents in their last few years. But more importantly, you will need to maintain your own family's life balance. Having money would be helpful but it is the time spent and the care giver's mental state that becomes challenging.

Try and see if there is any local care giver association or church with similar program and take part of the meetings. It helped me so far.

 

[Teacher Terry]

It’s been my experience that VA nursing homes have been difficult to get into. Usually the veterans were career and/or totally disabled. So that’s not likely a option. Most people are in nursing homes less than 3 years and at his age I would be surprised if he lived that long. Medicaid will kick in once funds are exhausted. When I chose a home for my good friend I made sure once her money ran out that she could stay in the facility using Medicaid. Don’t put your travel plans on hold. Life can be short. Considering all the expensive trips that they took they could have saved some for their care.

 

[aja8888]

If a Medicaid nursing home is the eventual solution, please take the time to personally go inspect them as they can be dreadfully bad.

My ex-wife ended up in one and it was a disaster...dirty, low number of staff, two inmates to a room, and had a list of inspection discrepancies as long as your arm. No no one fixed any of the discrepancies year after year.

 

[Souschef]

I agree with Teacher Terry. I had disagreements with my late MIL about the fact we wanted to travel. Apparently, she and her husband were at a convention somewhere when one of their parents passed away.
I basically told her we were going to travel whether she liked it or not. I have a spreadsheet to keep track of our travels, and when my MIL finally passed away, I showed my late wife how much travel we would have missed if we listened to her.

 

[steady saver]

It’s been my experience that VA nursing homes have been difficult to get into. Usually the veterans were career and/or totally disabled. So that’s not likely a option. Most people are in nursing homes less than 3 years and at his age I would be surprised if he lived that long. Medicaid will kick in once funds are exhausted. When I chose a home for my good friend I made sure once her money ran out that she could stay in the facility using Medicaid. Don’t put your travel plans on hold. Life can be short. Considering all the expensive trips that they took they could have saved some for their care.

IF (and that's still up in the air), my dad qualifies for VA nursing home, we've already looked at it based not on VA status but b/c it was recommended by a hospice advisor. It was nice and homey and seems on the up and up and has gotten good reviews. It's just that they don't have any private rooms.

 

[steady saver]

If a Medicaid nursing home is the eventual solution, please take the time to personally go inspect them as they can be dreadfully bad.

My ex-wife ended up in one and it was a disaster...dirty, low number of staff, two inmates to a room, and had a list of inspection discrepancies as long as your arm. No no one fixed any of the discrepancies year after year.

We had a horrible experience with a medicaid based rehab facility once and my dad was in and out of there in less 24 hours. Horrible, awful place. It was one of those things where we had to put him somewhere and that was a recommended place. We got him out of there as fast as possible. I wouldn't put my worst enemy there. So we are very, very mindful of care, cleanliness, kindness, etc.

 

[steady saver]

I agree with Teacher Terry. I had disagreements with my late MIL about the fact we wanted to travel. Apparently, she and her husband were at a convention somewhere when one of their parents passed away.
I basically told her we were going to travel whether she liked it or not. I have a spreadsheet to keep track of our travels, and when my MIL finally passed away, I showed my late wife how much travel we would have missed if we listened to her.

The good thing is that my parents would never tell me NOT to travel. I'm just trying to figure out how to make it all work.

 

[steady saver]

Thank you all for some thoughtful replies.

I'm considering possibilities and am able to step back and look at some different ideas with a fresh perspective. We will ultimately help out my mom, of course, and am just thinking through options in order to do that while still leaving space and money for us to do things. I am not rushing in to "save the day" for my dad at this point. They still have the funds to cover things for now. But I won't put either parent in a place that I wouldn't consider myself.

 

[Buckeye]

IF (and that's still up in the air), my dad qualifies for VA nursing home, we've already looked at it based not on VA status but b/c it was recommended by a hospice advisor. It was nice and homey and seems on the up and up and has gotten good reviews. It's just that they don't have any private rooms.

Do you know why your siblings say 'no' to VA care? Have they visited the location? Having a roommate might actually be a bonus wrt mental stimulation.

 

[ivinsfan]

Why do you envision your Mother costing you money. You aren't clear on that point

 

[steady saver]

Do you know why your siblings say 'no' to VA care? Have they visited the location? Having a roommate might actually be a bonus wrt mental stimulation.

One sibling doesn't say no. In fact, she thinks they're being elitist. The other two and my mother are appalled that he'd have to share a room. As my mom says, "your dad doesn't want to make new friends. He wouldn't do well." To which I replied "well maybe it's because he's never forced to have to play well with others..."

Both of the naysaying siblings have seen it and said it is a very nice facility with very nice people, that it is an older building but that they have an attached preschool which they thought was nice. But the sharing of a bathroom/shower and the almost certainty of a roommate (they have a few single rooms but they rarely come available and there's a wait list) leave these siblings and my mom horrified. That is where I lose my patience. I tend to agree with my older sibling who thinks they're all too rigid.

 

[steady saver]

Why do you envision your Mother costing you money. You aren't clear on that point

Sorry. Thank you for making me slow my brain down long enough to put some of my thoughts to my calculator...

My thinking is that is that IF my dad lives long enough to go through their savings then that leaves my mother with a modest monthly income and a home. I am anticipating the probability of my mom moving into assisted living within the next 3-4 years (She'd be 87 or 88). I say this because (and I may be wrong) I think she is not going to be able to live on her own past that. She already needs help and I see that continuing. Luckily she is in a patio home community and has made some friends, despite my dad having no interest in making any.

My crude calculations that take into consideration her monthly income when Dad passes combined with the likely income from the sale of her patio home will give her roughly 5 years of care.

So IF my Dad lives roughly 3 1/2 years (which is not out of the question) and IF my mom then needs to move into assisted living about that time, then she would have 5 years of finances to pay for her own care.

This is all rough, with lots of what ifs, but your question came at a time that I was already beginning to bring myself down to earth and try to think logically about all of this. And, you know, I think it will all be okay. And I think I've already come up with an option for paying for her care past that if needed. My mom is a gem of a person. I love them both; it's just that my dad can be very demanding and difficult and entitled.

Moral of the story for me: Don't get too caught up demands and guilt trips but stick with the facts, stay calm and give thanks for the patient folks on ER.org

 

[ivinsfan]

SS, the Medicaid/nursing home situation in this country means one spouse doesn't have to spend themselves into poverty while the other spouse gets care.



If and when your Dad goes into skilled nursing at that point look at the rules in their state, you might be surprised. Very often a portion of their assets will be split off for your Mom and her living expenses will be set aside first when figuring their monthly bills. IOW don't spend every penny of their money on a NH and then go look at Medicaid options...


In my experience many Medicaid accepting homes are pretty darn nice and give good care. 8 years from now your mother will be 92 and very likely in a NH as well. There is little knee jerk thinking going on. You haven't even seen the VA places, you had a bad experience in one Medicaid place, why would your Dad have been placed in a Medicaid place for rehab. He isn't on Medicaid is he? The nicest NH in our town takes MC with no problems.



As for the VA home it's a new idea and sometimes people just need time to get accustomed to things.


Staying calm is easier said then done and a lot of times the problem isn't the parents its all the infighting between the adult kids. From your numbers there a six people pounding their chests about how this should go and that's way,way too many.

 

[Amethyst]

I totally empathize. What a horrid end to a life of striving! Makes one wish for Kurt Vonnegut's public suicide booths to be a reality.

Just because reality (care needs, finances) make such an arrangement necessary, doesn't mean people are elitist or wrong-headed to dislike it. Even though I'm pretty sociable, I would hate having to share a room and bathroom with someone I didn't choose.

Since dad can't arrange his own care, everyone, including him, will have to deal with what's available. Meanwhile, let 'em rant.

The other two and my mother are appalled that he'd have to share a room. As my mom says, "your dad doesn't want to make new friends. He wouldn't do well." ....

But the sharing of a bathroom/shower and the almost certainty of a roommate .....leave these siblings and my mom horrified. That is where I lose my patience. I tend to agree with my older sibling who thinks they're all too rigid.

 

[steady saver]

The plus in all of this is that, overall, all siblings are doing their best to work together and to bring their area of expertise to the table. No fighting though we may have difference of opinions here and there.

And just to clarify, yes we have seen the one and only VA place in that city. There is admittedly one other one that is not acceptable in any way to any of us at all. And also to clarify, it is not a matter of if and when Dad goes into skilled nursing. He IS going; it's merely a matter of waiting for the quarantine period to end at the rehab facility he's in before the nursing center will allow him in. He cannot go home; my mother isn't able to handle him at home anymore, even with help.

The biggest challenge is my mom. She says everything is bad - "he can't go to the VA place b/c he can't share a bathroom" (this is even if he gets a coveted private room), "he can't handle quarantine," "he doesn't want to make friends," blah, blah, blah. I tell her "mom, we have to be positive and show him things will be okay. He's handled a lot in his lifetime; I think he can handle XYZ" By the way, quarantine in this definition means that he can only have visitors one at a time. Not exactly what my poor inlaws went through last year for weeks and weeks at a time...

 

[ivinsfan]

SS your Mom is in denial and that's pretty common, denial can also bring on paralysis and make people unable to make any decisions. Just saying No repeatedly doesn't mean that you can keep something from happening.



Things should calm down as the reality of Dad's condition and the black and white of finances come into play.


Your posts made it sound like there was some siblings squabbling going on. I suggest you all decide if it's majority rules or if one veto is enough to stop any plans.

 

[Scrapr]

WRT to Medicaid homes our experience with parents was if you can get into a Assisted Living place & private pay for a while (6-12 mo?) then the AL will switch you over to Medicaid pretty easy. (after your assets are spent down) Mom & Dad had enough assets to private pay. Their Social Security covered the Assisted Living costs. When they got moved to Memory care the paid the delta. IIRC the Skilled Nursing was the money bleed. I don't remember the cost but it was $$$$.

Good luck to you & your family.

 

[braumeister]

FWIW, there is a VA home that DW and some of her friends have made one of their pet charities. They go out there a couple of times a year and sponsor ice cream socials and things like that. The residents love it. It's a fairly nice place, with good staff. Nothing fancy, nothing high end, but perfectly acceptable. My father spent the last few months of his life there and died there. I used to visit him every few days during that time and I never found a single thing to complain about.

 

[gauss]

Below are some of the things I figured out during the last 5 years between when DM got her dementia diagnosis 5 years ago and when she passed away last month.

-gauss
---
#1) Doesn't the VA have a program ( VA Aid and Attendance ) that will help pay for care outside of a VA home?

#2) Are you looking at Assisted Living facilities with fancy pianos in the lobby and things like that? You can find many of those places around here for the $4,500 /month price tag and up. My mother lived the last three years of her life in a mid-market place that cost $1,800/month plus another $500 for 2 meals/day. She had a private entrance, 2 bedrooms, full kitchen full bathroom, living room with vaulted ceilings and a view of pine trees that shielded the road. Quite nice IMHO.

#3) Not all dementia patients will require "Memory Care". Typically only those that tend to wander, show behavior problems, or need a great deal of constant oversight.

#4) You shouldn't need to sacrifice financially your retirement because of your parents needs. That is where the Medicaid LTC program can help out. They will need to spend down there assets first and not "gift them" away first in order to qualify so an inheritance may be off the table. I worried much about this when DM got her dementia diagnosis ~5 years ago. When the time came, I got her into the mid-market place 2 miles from my house so I could do much of the caregiving. In the end, she was still living below her means to the end, and I ended up getting a nice inheritance so you really don't know how it will end.

 

[steady saver]

Below are some of the things I figured out during the last 5 years between when DM got her dementia diagnosis 5 years ago and when she passed away last month.

-gauss
---
#1) Doesn't the VA have a program ( VA Aid and Attendance ) that will help pay for care outside of a VA home?

#2) Are you looking at Assisted Living facilities with fancy pianos in the lobby and things like that? You can find many of those places around here for the $4,500 /month price tag and up. My mother lived the last three years of her life in a mid-market place that cost $1,800/month plus another $500 for 2 meals/day. She had a private entrance, 2 bedrooms, full kitchen full bathroom, living room with vaulted ceilings and a view of pine trees that shielded the road. Quite nice IMHO.

#3) Not all dementia patients will require "Memory Care". Typically only those that tend to wander, show behavior problems, or need a great deal of constant oversight.

#4) You shouldn't need to sacrifice financially your retirement because of your parents needs. That is where the Medicaid LTC program can help out. They will need to spend down there assets first and not "gift them" away first in order to qualify so an inheritance may be off the table. I worried much about this when DM got her dementia diagnosis ~5 years ago. When the time came, I got her into the mid-market place 2 miles from my house so I could do much of the caregiving. In the end, she was still living below her means to the end, and I ended up getting a nice inheritance so you really don't know how it will end.

VA will pay for home help which is not an option b/c my dad needs skilled nursing.
We aren't looking for Assisted Living - Dad needs skilled care. No pianos, no grand landscaping, walking trails or fancy dining areas. The place we found has a homey feeling and a Basset Hound comfort dog... And skilled nursing is expensive. The place he is moving to today is $1000 less than the skilled nursing center attached to the rehab place he was at. But still $6500 a month. It is what it is.

 

[Amethyst]

Dementia is progressive (if you can call a slow but steady drain-circling, "progressing.")

If you live long enough with dementia (people can live 20+ years with it, depending on their underlying health), wandering and not remembering where you live are part of the "progression," as is becoming unable to speak coherently. From what I've read and observed, aggressive behavior is not inevitable, but steady loss of independence is.

So, if the patient lives long enough, they are going to need constant supervision. Big, big bucks. "Memory care" places are basically 3 hots and a cot, with a lock so the patients can't escape. But for hour-to-hour supervision and care, you will need to hire aides, possibly 24/7.

#3) Not all dementia patients will require "Memory Care". Typically only those that tend to wander, show behavior problems, or need a great deal of constant oversight.

.

 

[Teacher Terry]

Many end up in diapers and needing to be fed. Some forget how to eat and need their food puréed. Truly awful!