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.