http://www.kevinmd.com/blog/2017/03/death-blessing-right-time-place.html
Can I post this link? It seems apropos of the discussions we’ve been having and I thought of HiMom’s siblings especially.
I really like Kevinmd and think he makes a lot of nice points in his blog and has a lot of poignancy in his posts. Yes, this resonates with me. I hope everyone can have such a peaceful farewell.
Nice link, @somemom . The patient being well enough to know and express their wishes was critical there.
I had to say “no more” on behalf of my father this month. I knew his suffering “better” than he did, due to his memory loss. The tally was readily done, because he had shared his “quality not quantity” philosophy years ago and a body that can’t move, swallow or remember, however cheerful the disposition may remain, is not equipped to carry on. The groundwork for this was laid both over a lifetime and refined over the last 4 years, with careful medical input and no whitewashing for distant sib who could easily minimize the decline.
This stuff declares itself. Good when nature is definitive, but when there are options for treatment, however theoretical, considering the context can make all the difference. Great teachable moments for our adult kids, too.
I am back on this thread as I am dealing with 2 aging parents. They had been living IL in a CCRC until a month ago when mom had an aortic dissection. Long story short, she was able to get a stent and spent 3 weeks in ICU before being discharged to the nursing side of her community for rehab.
Dad however is a T1diabetic with a traumatic brain injury, so he was unable to stay in IL by himself. So within a few days of mom’s emergency, I arranged for him to move over to the nursing care side (at full pay!!!) because I could not live there 24/7 more than a couple days. He cannot administer his insulin himself and needs monitoring for his blood sugar. Otherwise he is healthy and is extremely bored in nursing care.
So I just found out after 8 days of rehab that insurance has decided she is fit to discharge, even though she cannot do any ADL without assistance. The social worker was shocked. Luckily she can remain where she is for now because she has a life care contract, but we will now be responsible for all costs beyond room and board.
My stress is that I do not know what to plan on for their longer term living, once mom rehabs to as good as she will get. There is absolutely no way she can go back to being responsible for dad and I even question whether she can live with him as the brain injury has made him so obsessive about things. He calls me 8 or 9 times a day to ask how mom is doing, when will he go to dinner, how can he help, why does someone come in to empty his trash, and on and on.
I live an hour away and am debating moving them to a personal care/assisted living place nearer me. I hate to remove them from all their friends and church to a place where they will know no one and which is a big step down in terms of peers and lifestyle. Yet I realize that they are only going to age more and get less independent.
I cannot afford, or I don’t think I can afford, to keep dad in the nursing unit much longer - it is $400+ a day!
Finally, how do most people handle all this? I am pretty well-educated, with lots of resources and financially stable. I was able to work half time this month because I was at my parents for most of the month but I cannot continue to do this. How do people who work shift work or need a full time income with no flexibility handle aging parents? It is its own full time job!
@surfcity can your Dad be handled in the assisted living side? Or can he go back to IL with some sort of an extra fee for BS monitoring?
The question you asked is so apropos, how do we know when something is recoverable. In his last year FIL had issues, he sawthe PCP, cardiology (nuclear stress test), hematology, gastro, urology and multiple ED visits, expensive tests, expensive medical care, ambulance rides. Over those few months his walking got worse and worse and one day he could not walk, for no apparent reason, he did not walk for his last six months. But the six months leading up to that change and subsequent realization were difficult and the three weeks between failing to walk the first time and being kicked out of AL were rough, no one knew if the not standing and walking was temporary or a new normal.
As younger people, things go wrong and we assume we will get better, tough to know when to accept the new normal and when to fight it in a senior.
We made so many treks to deal with them, many friends and family commented they could not take the time from work to do it. We lost a great deal of income dealing with all the emergencies 
The rehab days were probably cut short due to ‘failure to progress’. You can ask what the parameters are for her to progress better to get evaluated for ability to use the full Medicare rehab days (21).
What typically happens is the elderly use up their financial resources and then their skilled care (nursing home) is then paid by Medicare/Medicaid.
@surfcity - one spouse able to live at home is able to keep the house and some assets, but you clearly need professional advice in your state and theirs (if you are not in the same state) to decide how to move forward with the particulars of your situation.
Some decisions may be made regarding continuity of their medical care - but only an hour away may not be significant. Facilities often have their own MD and NP who take care of the medical needs of the residents.
It is an intense period for you - not only dealing with the emotions of your parents health decline, but decisions and financial issues all blended together.
Try to gather as much info on resources and options in their community and yours. Ask a lot of questions, including “if these were your parents, or if this was your dad or your mom, what options would you consider and how would you progress?”
BIL is considering a bigger place so if parents need to spend more time or 24/7 time with him, it can be managed - he lives an hour away from them, but many of their specialists are in his location. As a RN that works PT, I could help except we live 850 miles away. Another BIL lives about 5 hours away and visits and helps as he and his W can. Another BIL/SIL spend some vacations (as we do) to help take care of things and them as we can.
SOS is correct about learning the rules of both states. My mother lives at home with a 24/7 live in for nearly 8 years and we moved 1200 miles away. She spent down her money and we thought we would move both of them near us. In applying for Medicaid, we learned that she would have had to reside in our state for one year before being eligible. If I knew that ahead of time, we would have moved her and continued to spend down for the year. The 24/7 option has been working the best in her case. The same woman has been with her all this time, (if anyone goes to heaven, it will be her). I don’t know if it is a viable option for you to move them closer to you with 24/7 care in a condo or apt.
Medicaid rules do probably vary state by state - the state one lives in also carries some of the costs in coordination with Federal Gov’t. Fed Gov’t was giving inducements for states to expand Medicaid, but Fed Gov’t was only helping with some of the first years. I am sure it is more complicated, but most people would have made the assumption that spent down assets would have made one eligible in another state. Wow. Good thing to share @ECmotherx2 .
I guess it is like the IRS - their rules don’t have to make sense, you just have to follow their rules.
Medicaid. Everyone’s plan B. My mil is living with her "crazy " daughter who is paying herself 4-5K per month out of mom’s funds, which she transferred into an account she alone has access to. We doubt she has a Medicaid compliant caregiver agreement in place. Worst case is she exhausts mom’s funds, mom will be ineligible for Medicaid for however many years of nursing home care the gifted money would have paid for, and some of the other siblings are sued for payment, PA being a filial state. I’m sick about all this. And we are seeking guardianship.
@surfcity I have anticipated being in your situation any day now, but I have anticipated it for about 3 years now. My parents are physically well but both have dementia and in IL at a CCRC. I know that any major medical crisis for either one of them will throw the other off mentally as the familiarity of each others presence keeps them functional.
First, do you know their financial situation? What I did: About 3 years ago, when I felt confident Mom and Dad could make decisions, I brought them to a lawyer, signed POA documents, and organized their finances. I am a co-signer on their bank account and know what comes in monthly, what cash is in reserve, and have changed the investment strategy from less stocks and more cash. It has given me peace of mind to know how much they can afford and how long.
Second, meet with the social worker at their CCRC and/or the director of the facility. If possible, have a team meeting that includes the director of nursing. They can help you come up with a plan that may be a combination of home visits, assistance with ADLs, AL, nursing home care, and whatever time you can contribute. They have much experience working with families just like yours. They can give you an approximate monthly cost for different options. I do this about once a year in anticipation as they all know my parents and their situation. Just a note, my parents have continued to do much better than expected and nobody felt they would still be in a IL situation now.
Let us know how it turns out.
Thank you all. I woke up this weekend sick as a dog so I haven’t had the ability to reply in more detail. But I will!
Hope you feel better @surfcity!
Thank you everyone for your replies. @GTalum especially hits the nail on the head. Fortunately I am well aware of their finances and have been managing them for them for the last 3 years.
The real issue is my dad’s behavior is so draining and relentless, that I don’t want mom exposed to it. She had complained to me about what a pain he was becoming, and (to my dismay) I just kept telling her that he can’t change so she needed to let it roll off her back. Well, after living with him for a week and now getting 8 or 9 phone calls a day and having to talk him down about everything, I feel horrible that I did not intercede earlier.
There current community is geared mostly to IL and they do that well. They have no space in PC. But even if they did, I guess that would mean the costs would double as I’d have to pay for a unit for mom and one for dad.
I can’t figure out how in-home aides would help the situation either, other than helping mom with her ADL until she gets stronger. They won’t be there to stop dad from wandering in to mom’s bedroom at 4 am to ask what the plans are for today and that sort of thing.
I have asked the social worker to talk to dad’s caregivers and see what they think he needs. The problem is, I think they don’t see this. Every time I am there they tell me how compliant and pleasant he is. Meanwhile, I am getting an earful about the “suspicious” people who are bringing his meds (“why should I take pills from a total stranger??”) and he breaks down on the phone worried about mom when she is actually getting BETTER and not worse.
What surprises me about ending the nursing/rehab coverage is how devastating an aortic dissection can be. Sounds like they caught hers early and she avoided full open surgery, but is she recovering her mobility and mental function? Unfortunately, I have some family experience with this, the type A. It seems (maybe I’m wrong, for her procedure,) but she may need more than simple ADL. Eg, breathing and exercise routines, any rx regimen. ??
And if your mom does stay home, couldn’t a home aide both help her and run interference with Dad? It may prove just as expensive but, eg, days and overnight, keeping him from disturbing her.
Oh gosh, FIL fought the meds being brought by nurses, he made them explain every pill, every time, and sometimes randomly refused some, but not all of them
Does Dad now need 24/7 supervision? I think I suggested aides and wondered if they could do Dad’s ADLs for Mom, but it sounds more like it’s someone to watch over him
My mother has 24/7 aides in the house to watch over my dad, who has Parkinson’s and some degree of dementia. And when I say “watch over,” that’s exactly what I mean! Someone’s eyes are trained on my dad every minute of every day, including while he sleeps, so that he won’t get up by himself, which he tends to do no matter how many times he is told that he should wait for help. He does not have even one iota of privacy anymore, but I will say that he also hasn’t had any more falls and thus has stayed out of the hospital, which was the point all along. One shift comes in for just the 8 hours overnight, so that someone stays awake while he sleeps. So that kind of supervision is possible, as horrible as some aspects of it are!
@HImom, in DH’s family, the sibling that was least mature, and had been most dependent on the parents well into adulthood was the one that had the hardest time letting go. The one that had depended on them least into adulthood had an easier time making necessary decisions.
Your sister is probably frightened, immature, and maybe feeling a little guilty about help she has gotten from your parents. It doesn’t excuse her accusations, but maybe gives some context. “Willing to let them go” and Wishing they were gone" are 2 very different things, but she may not be able to see that.
In the meantime, my very independent and cognitively strong mother is having a heck of a time recovering from a hospitalization. The Occupational Therapist told her that it could take 3 days of rehab for every day in the hospital, which made her feel much much better about not being able to get back to her routine as soon as she got back to the CCRC. We’ve gotten her to agree to a helper in her apartment 3 days per week, especially since she hasn’t been able to drive since she got released and needs someone to run errands for her.
Not sure whether this a temporary setback or the start of a long slide, or something in between, but I’m glad we’ve found a caregiving company that she will agree to work with.
I guess with a large family, there are bound to be differences of opinion but it’s tough when they get so strident and misinterpret what is said and hurl personal accusations.
I really think some of my sibs have a hard time with death and it may be partly religious or just different experiences we have all had. I’ve lost many older patients to death–by the time they died, they were pretty exhausted by living and struggling to breathe. I see that at some point people might not want ALL that medical science can do to provide a pulse and keep one “alive.” My folks are still doing well but life can bring changes to everyone.
I’m not sure it’s a matter of maturity so much as life experiences.