One needs to tweak what we truly want in healthcare, but inarguably we have the best healthcare available for the majority of our citizens for a country our size/population. We also have a lot of personal freedom, and certainly there are some people that choose not to navigate our healthcare system effectively for their circumstances.
Bordering on a political type of comment, as is my response. I hope people can continue to see both of our comments and not have them removed from CC.
I do believe some tweaking can be done for some more care stages before nursing home - which often happens when resources ‘run out’ or when lower cost of care can be done with more care in affordable assisted living. Many people end up in skilled care (nursing home) with Medicare/Medicaid provided care.
You are resourceful - knowing the right way to speak to those in the medical setting, and also had a lot of family that also were involved locally. Your siblings and you did an awesome job with your parents IMHO.
To provide an update, SIL has read the NY Times article (her husband is in the hospital, and they know they need to make some decisions about their home) - and I cut and pasted a few relevant comments from the article’s comment section (SIL is not a NY Times subscriber so she could not see the comments). These two are good ones for her to digest:
“As a Home Health and Hospice Clinical Liaison (now retired) after 25 years of that (45 in nursing) this was my daily reality. I was the bad guy MDs and hospitals and families requested. I had to listen to many patients in absolute denial about their circumstances. Usually it takes a health crisis until they agree to any changes. And then we scramble to make a plan. Then we have to ask hard questions. It matters how much money they have for home assistance. It matters how much they are willing to spend. It matters how high their acuity level is. It matters how much family can assist. This all needs to be discussed. A patient can stay in a home if they can afford to. But ALF is expensive and provides little care once ill. Home is preferable but a plan has to be made and those plans cost money and time from caregivers. There is no safety net unfortunately. I retired but still get many calls asking for help sorting this out. I am happy to help but honestly at age 66 myself, I hope to just keel over from a massive MI. Because this is daunting. My best advice to adult children is to have a frank talk and the first step is fall prevention. They need to set up a house to mitigate this. Then financial reality. Then home logistics. A plan based on reality can help but this is still very difficult to navigate.”
Here is a Canadian reply to the article “My father hid my mother’s dementia as long as he could. I remember the day the switch flipped for me from child to “parent” my own parents. Given my Dad was a trial lawyer that was not easy. After he cancelled 3 of the appts I made with the Geronotologist for Mom to be assessed, I flew one province over to take my Mom myself. He came along. The doc had to make my Dad leave the room because he kept answering the questions Mom was being asked. So it was me who got to sit there and watch my Mom draw a clock with the numbers outside the circle and bunched together, with the hands together but on the other side of the clock. When I got out to my car, finally alone, I cried because I knew we had a hard road ahead of us. I was also Executor for my parents estate - one in 2016 and one in 2021. So now, at 68, both myself and my husband have our Estate plan settled and have I simply ordered my kids to sit down and review it with us - especially important in our blended family. We are rural so we plan is to live here until we cant drive and then we are moving to an Independent Living Retirement Home (Ive got it picked out) in town and one of our kids is taking over the house so we can come out to the lake now and then. I quit drinking, weight train and ride my bike and work on flexibility and balance daily.”
The care coordinator at the hospital where my MIL was treated after breaking her pelvis told us that if we have a strong disagreement about our loved one being discharged, we can tell the doctor that we will appeal to Medicare. She said that can often result in a delayed discharge without having to actually appeal to Medicare.
Yes, I never actually had to appeal, just knew if I talked about appealing, they would stop and listen to understand what family was trying to convey. We just wanted safety for the patient and would strongly advocate for that. Yes, we were lucky there were many of us and we all wanted that.
The thing is, it’s a LOT of work for the org to fight an appeal, so they will listen and see if an appeal can be avoided and the listening by the org helps patient and family come to better options. While an appeal is in progress, patient keeps whatever is being appealed—the service, staying in the hospital, etc.
Thank you. It has been ok. There is an aide there 24/7…which has been necessary. It is still exhausting for my mother. He really should have gone to rehab. Visiting nurse came yesterday and in-home PT will start tomorrow.
He is much more lucid, though he still has bouts of confusion. He’s been on a medication (anti-convulsant) that really knocks him out, so lots of sleeping. When he first got home, he went up to the second floor, then came down and has not gone up again since. He’s been sleeping on a sofa. Walking with a walker and a lot of assistance (his legs are very weak), can’t get himself up out of a chair.
He’s still treating my mother pretty poorly, telling her that if she wasn’t so weak, she could help him get up out of the chair . I guess short of a lobotomy, that wasn’t going to change.
My mother did end up calling his cousin/attorney to talk to him about what is going on wrt changing his will to leave money to my cousin. He hasn’t mentioned anything about that in a few days, but it may rear its head again. I am hopeful when he really closer back to himself, they can have a rational discussion where she explains how much it is costing just to have this help now and how foolish it would be to assume he has a spare $100k to give away before they are both gone.
My daughter is walking in her MSW commencement on Wednesday. There is simply no way he can attend, but we’ve been sort of whispering about it, because I can see a scenario where he throws a tantrum about not going and worse, gets angry at my mother because she is going.
So as not to make this update a complete downer, I will end by saying his eyesight is improving and so I am hopeful that the other neurological problems that he’s had for a long time will also improve.
A lift chair might be wise for your father. It will move him into position so he can grab the walker without having to lift himself up. It also reclines so he can sleep in the chair.
My father insisted that my mother drive the Jeep into our field and tow the lawnmower out (he had gotten it stuck) and was very angry that all of us said that’s not a thing. Vascular dementia sneaks up on a family and what might seem cranky or difficult can be an irreversible decline. Another unpleasant part of a difficult puzzle, for sure.
In a matter of time, it seems your family will need another psych eval on your dad to confirm some form of dementia. IMHO you or your mom needs to call his cousin/attorney and indicate that with his medical condition ongoing and somewhat diminished mental facilities your dad does not have the mental capacity to make any legal changes. Your strategy is good in that the care coming in is ‘required’ to avoid going to rehab.
For a lift chair, perhaps you have a couple of options and let him choose which one. If he says he doesn’t need it, again use the rehab angle. Maybe if you decide on a particular chair and give him an option of color. Give him something to choose. Give him options between two good choices on a lot of things that he may not want to do. For example, if he gives a hard time with taking medications “Do you want to take your medication now or in 10 minutes?” - or “Do you want to take this part of your medicine now, and take the rest in 10 minutes?”
How old are your parents? 24/7 care is expensive. Is there a timeframe to evaluate changes in their living situation?
They are 85 (him) and 83 (her). I’m not sure about a timeframe for evaluating how sustainable this is. Their (misguided) idea all along was that one of them could take care of the other and that live-in help would only be needed for the surviving spouse. The visiting nurse did say that if a doctor recommends it is needed, relocating to a rehab (which would not cost them much, if anything…thankfully they have very good health insurance) is absolutely possible. My father said yesterday morning, “Maybe I could have used a few days in rehab” but then seems to have forgotten he said that when the visiting nurse addressed it, and kind of blew up at the possibility.
For now, they can afford to have him at home, as difficult as it is for her. If it appears it is going to be more than a temporary situation (few weeks), we will have to have a conversation about what to do.
At MIL’s AL, the D of a resident organized her community in an effort to purchase a baby doll for each resident. She personalized each doll for the respective residents & organized a baby shower on Friday, where she passed out the dolls. The pictures are so precious … the looks on residents’ faces as they gaze at and snuggle their babies is so heartwarming. There is a picture of the woman MIL sits with at meals, and she is clearly thrilled with her baby. Unfortunately, my MIL isn’t in the pictures, and SIL never mentioned anything about it … I know she got a doll, because the organizer showed us her doll when we were there last week (we had to leave before the shower). MIL doesn’t talk on the phone anymore, so I guess H will have to ask his sister if she likes her doll.
Some couples are willing to gamble on their housing situation. (We’ll probably be ones who gamble a bit, but with risk mitigation plan - ie stay in house but if needed use the downstairs den/guestroom and attached bathroom.)
I am relieved that Dad (turning 99 next week) will be returning home from rehab tomorrow(?), thanks to the good support he will get from his much younger wife. BUT gosh, frustrated how she really resists all family suggestions of coming to help and/or getting hired helpers. At least she finally agrees aid is needed for showers, something I’ve suggested for two years since she has a bad back. There will be PT/OT from Medicare for a few weeks after he gets home, but they need more help. Alas, their house-of-many-stairs makes everything harder. Too bad they’ve really never come up with a mutually agreeable “next chapter” housing.
My dad is not doing well at home. He is quite depressed about the pace of recovery/regaining function, but also not doing the things he needs to do to aid in his recovery (doesn’t want to get up and walk). The visiting nurse and OT came to the house yesterday and both advised my mother that he would be better off in rehab, where he won’t have a choice about working on these things. In one of his more lucid moments, he agreed to go. So now my mom is coordinating having him assessed for eligibility to go. It will likely be at least a couple of days before there is a bed for him.
I think this will be the best thing for all. I understand why my mother wanted to try to have him at home, but he’s just not going get better there.
Good that your dad agreed to get more care. But darn - sorry about the breathing challenges. From what I’ve heard, patient needs to be admitted to hospital 3 days (not including time held in ER) before Medicare will pay for rehab. Not sure in his case though, since he recently was hospitalized.
. I guess short of a lobotomy, that wasn’t going to change.