Rights vs. abandonment. Any advice?
So, after some things I have gone through in the past year and from what I've read here, this is the conclusion I've reached. You should never move into the home of an elderly relative and you should never move that relative into your home, due to the "rights" of the elderly person who can still string 2 sentences together and sometimes have moments of clarity. I've observed if you are living under the same roof and the situation becomes horrible (and it usually does), you cannot move out or risk being charged with abandonment if the person is a fall hazard and has major health issues or cognitive disability.
You cannot force a person to move into assisted living if they are still able to advocate for themselves and express what they do and do not want. The person can literally be living as an invalid, laying in their own filth and you cannot force them out of their home if they say they want to stay. You can certainly contact APS, but there is even a limit to what they can make the person do.
Can you be forced to become a caregiver of a parent who has major health issues and who refuses to leave their home and has no money for AL or SNF? My own parents are aging, but thankfully still get around and drive (although they should not). I expect my mom to outlive my dad. She is a HOARDER so there is no way in heck that me or my sisters will EVER move into her house (I have not even spent the night there in years). So if she ever gets to the point that she is a fall hazard or wheelchair bound and does not want to have a sitter or go to assisted living, what happens?
We've discussed the plan of her living with each of us for 4 months at a time but there is no way to force her to do that. I'm a planner. I like to know all these things years in advance to be able to act on them instead of being shocked by events.
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Many decades ago my dad helped my mom provide care in their home for her dad, then her mom and then her aunt (all elderly, frail and in various stages of dementia). I never heard him complain or make disparaging comments about any of them. Now as a widower in his 90s who has been all but abandoned by most of his children, he is very frail and has late-stage Alzheimer's dementia. I'm not going to abandon him and, in fact I still see him every day, but I stopped being his 24/7 caregiver after moving him into the best memory care facility I could find.
We have had several conversations about home care vs. AL or SNF. I told them if they ever develop dementia or become wheelchair bound, I will NOT be willing to help with their care and my sisters feel the same way. My parents spent 2 years taking turns sleeping on my grandmother's couch and getting up and down all night changing her diapers and tending to her anxiety, which was usually manifested in late night screaming by my grandmother. For this reason, they are in complete agreement that they do not wish that on us. I think the majority of people who have been caregivers for someone do NOT want to burden their children in that way (except for the narcissistic parents). I watched my parents age heavily from this and my father developed heart problems from the stress.
I'm certainly willing to help look after an elderly parent who is able to use a walker and is reasonably pleasant and cooperative about their care and can do some things for themselves. My sisters and I are all in our 50s and have all had back issues, so we do/will NOT have the strength to lift and pull on a dead weight in the future.
My mom had 2 female cousins who were live-in caregivers for elderly parents for YEARS. I don't know if they had promised their parents to never put them in a home, but the father had severe dementia and was violent every single evening/night, hitting, shoving, yelling and trying to escape the house. It was horrible. After the parents died, they found out what was in the will as there was considerable LAND owned by the father and they didn't want to lose his farm and homestead to the SNF. The will gave EVERYTHING to their grandson who they had raised! This grandson did NOTHING to help with their care. NOTHING!
Well, shortly after the parents died, one of the ladies discovered she had cancer and was dead within months of losing her parents. Her sister immediately started getting dementia and is still alive with full blown dementia (probably has had it for at least 15 years). She can do NOTHING for herself, cannot talk or do anything. She is wheelchair bound and is basically catatonic. Grunts, stares off into space, sundowns in the evenings, cannot feed herself, etc. Her daughter also refuses to put her in a home and has been living the same hell for years caring for her. I'm told their house is beyond words as the woman was a huge hoarder and now the house is piled high with junk, has pet feces everywhere, etc.
My parents talk about that situation frequently and are horrified by it. My parents are both currently of sound mind, so it is good to know NOW what they want. They are not rich, but they do have a little property and thankfully they each have a long-term care insurance policy. My dad, however, said he tried contacting the company to get specific benefit information and was told, "You have to actually file a claim to find out what we cover!" He has tried multiple times to get information and has been stymied at every turn, which makes me fear they are paying good money for a unicorn.
This insurance was with a company and policy promoted by NARFE, of which they are very active in their local chapter.
I would like to add that my father has a living will and he is pretty specific about "no feeding tube or artificial means of being kept alive." It is his biggest fear, living any length of time as a stroke victim, at the mercer of your caregiver to change your diaper. My mother voices a desire to NOT have a feeding tube or ventilator, but she has a hard time actually putting it in writing.
Seeing what they endured, seeing what her cousins endured, having had my own nightmares of managing the affairs of 2 elderly aunts and being on this forum keeps these issues on my mind frequently. How in the world does one adequately prepare?
How do we show respect and value the lives of our loved ones without totally GIVING UP ourselves and our families and everything we work for? So often a caregiver has given up his job, home, marriage, health and life to care for a parent that is off the chain crazy, mean, etc.
It is not WRONG to not want to do that and it IS wrong for a parent to expect their children to do this.
You cannot be forced to become a caregiver to anyone anywhere. In some states you may be forced to contribute to them financially, but not to do caregiving.
You do not have to take parents into your own home. (Do you want her to start hoarding in three different places?)
You can assume that your mom will outlive your dad, but there is no guarantee that is the way it will happen. And what if Mom needs assistance while Dad is still alive, but not able to provide that assistance?
What if one or both of them develop dementia?
Making tentative plans ahead of time is prudent, but accept the fact that you cannot cover every "what if."
Do your parents have Medical and Financial POAs assigned? If not, that could be something to get them thinking about right now.
I think you've provided a good analysis of the issues, though, and a good basis from which to start a national movement for better and more realistic handling of old age, or perhaps even local support groups.
Have you thought about sharing your thoughts with a national aging magazine or publication, such as the AARP newsletter? Or presenting them to a caregiver group, or better yet, a group that has the power to make changes or do something about the serious gaps in care for the aged?
I think it would also be helpful if alternatives could be identified, as raising issues which need to be addressed is 1/2 of the problem, the other 1/2 being developing solutions and alternatives. That would be a good article for any aging magazine, and especially would be a good way to try to start a national movement or synopsize the issue for legislators with no experience in caregiving (not that they'd necessarily do anything about the problems).
Thanks for sharing your insightful thoughts.
What's your experience on keeping them clean? Could you take the larger squares apart and dip them into a bucket of soapy water for cleaning? Was hand scrubbing necessary? How durable are them, both from exposure to moisture and pressure of adults walking on them?
Do the undersides get moldy?
You might have to impose the sitter on her. She might choose it if the alternative is nursing home. You can definitely start looking into the process of locating one now.
One other thing to work on is a meeting of the minds with your sisters, now, before the pressure is on. That makes things easier is if you and your sisters are rock solid on the plan. If just one goes rogue it can lead to huge problems.
This might be naïve, but if driving is soon to go, would it free up the garage for hoarded items, or a guest room for yourself?