IL, AL or MC: Reconciling autonomy with risk of injury and/or death.
Is taking away a person's autonomy to protect them from themselves (to prevent injury or death) really okay? If my parent's live at home and my dad gets injured or dies due to an inability to reason through danger, is that allowing him to live his life his way, or is it negligent on the family's part? Shouldn't we be allowed to live our life at home and if we die, we die? I am struggling with making them do what I think is best rather than letting them just live out their end of life in a way that pleases them. Here is our story: My dad's cognitive ability has declined fairly rapidly over the last two years. I was asked to help him with some financial stuff two years ago and realized he was making some major errors in bill paying. Then he was scammed more than once and I realized he could no longer manage their finances. He willingly asked me to take them over and trusts me with them totally. Since then we have had a Dementia diagnosis that then progressed to an Alzheimer's diagnosis. My mom is very healthy. This last September I used my dad's tendency to always want the "newest and greatest" to manipulate him into wanting to move into a local IL facility. Now he is angry and sad because it wasn't what he was hoping and he wants to move home. At this point he really is living in AL, except he isn't. My mom does all of the care-taking. He is still able to dress and bath and take care of his personal needs. But he can't/won't manage his medications, make himself coffee, toast, a sandwich, a bowl of ice-cream, fill a water bottle, feed the dog....she does it all. He is demanding to move home. I want my mom to have autonomy. I realize my dad cannot make his own decisions anymore, but my mom can. If they move home she will be responsible for the cleaning, cooking, dishes, yardwork, etc that is being done by the facility now. She says she has mixed feelings about it. I have told her we will be the "bad guys" and just say NO for her. I don't want her to get injured at home because he chooses to do something dangerous. Side note: Before moving to IL he climbed on the roof, fell off and landed on her causing her and himself injury. So this is a real possibility. I am just very conflicted. I need to protect my mom, but she also needs to want that. These are grown adults who have lived amazing, intelligent, full lives. Do I really have the authority to take over? Should I take over? My grandfather died in his home from a heart attack because our medications weren't as good as they are now. But he didn't have to live in a healthy body with a diminishing mind, low vision, and loss of hearing. Should we protect if it means manipulation and lack of autonomy? This is just up for discussion. I don't think there is a black and white answer here. I am just wondering what others are thinking on this topic. I'm not looking for what "I should do". I am hoping to hear how others are reconciling these thoughts for themselves.
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If your Mom has all POA's then yes your Mom can initiate a move for them if she choses to.
The parents were lifelong dairy farmers and did not like the menu at the AL and there was not enough butter and cream for their tastes.
The neighbor said both were blind at the time of the move to the apartment.
But to respond to your overall question, which is a philosophical matter, I would say there are indeed times we should take over, autonomy be damned. The main reason is that your dad doesn't exist in a bubble with just himself. Suppose he leaves the gas on, strikes a match and blows the neighborhood to kingdom come? Drives and kills some other person on the road? There are various factors but the answer is definitely sometimes, and it's individual, but there are post marks along that road to assist you. One of them is what I've mentioned before, which is his ability to wreak havoc for others. If that ability is great, you take over faster.
If your parents were good people of course you want to treat them with respect, which includes respect for the aging process. No one asks to get old and frail and suffer from things like dementia. It's just life. For me, I watched and was constantly thinking about whether my parents were making rash (and wild, or APS-triggering) mistakes, or just getting old and losing capabilities. I tried not to just fix my feelings but to just advocate and assist. Like you, I went over their heads many times--but I also stepped aside. It was so hard. (My mother told me in her better days to "decide with her, not for her," and I mostly could.)
Your concern for your mother and her hardship caring for your father, at her age, makes it further complicated. Anyone would struggle as you are, wondering what to do there.
My mother also said she'd be "easy" when the time came for hard decisions to be made, but in fact she dug her heels in and said she wanted to stay at home until the very end. Even then, I was ready with Plan B as I neared my exhaustion point. I had done paperwork and planning and was prepared to execute a move, against her wishes, to release her to a caring facility, when she took a fast turn and died a few weeks later. It was as if she knew I simply could not help her anymore with the way things were (at home, with some home help, but basically me as her person.)
There's a lot of complexity in what you wrote and it seems you've been walking alongside them carefully for a long time, processing all the awful moments when a shift occurs (scams, can no longer make breakfast...) and every decline probably hurts your heart.
I know you don't want advice. You're good to just keep talking with your mom as she navigates what's going on. Maybe she will wake up with a clear directive for you to execute on her behalf, soon. As in, bring Dad home--or definitely keep him there because I can't do it. I hope so.
I so relate to your description of your father, how you leveraged his interest in the newest and greatest to get him to an IL facility. Makes me miss my dad all over again.
I think the biggest mistake here was moving him to AL all alone without his dear wife. Or, are they together in Independent Living and she is doing everything for him? I don't understand why move from their home to independent living. She has probably been taking care of him with cleaning, cooking, medications, for a long time! They are both used to that routine. Although, now at an advanced age, your mother is tired of doing so much and really would like a break!
Instead of paying for assisted living for Dad, why not hire a housekeeper, cook, or an attendant care aide to come to the house to help out with the chores? Also, while you're at it, hire someone for yardcare maintenance.
This way, your parents can be together, in their own home. At some point in the future, their needs could require moving one or both of them to a care facility, for instance, when they are no longer ambulatory, are in diapers, can't feed themselves, etc. If either one of them exhibits unsafe behavior such as wandering outside and getting lost, or leaving the stove on, or the water running, causing a safety hazard, then you know it is time for them to lose their independence and really should be cared for in a safe facility. At that point, they really will not mind so much, as they will require much greater care for their personal needs, and will probably not understand much anyway.
If you do not have POA, I'd still do whatever I could to keep them safe. If they die due to dad's lack of competency and executive brain function, or worse yet, kills mom, how will you feel then? That is the main question, I think.
I had both of my parents in Assisted Living and then Memory Care for mom. After they died, I felt like I helped them to have a good quality of life and a safer lifestyle at the same time. They didn't pass away from an accident but from the disease process and old age. They were kept comfortable at the end, w/o pain or suffering.
We just do the best we can to ensure a decent end for our loved ones, and that no unnecessary harm come to them. Otherwise, we are negligent in our responsibility to them.
And the struggle is SO REAL
for a family to decide when to take over.
When we take from a senior their own ability to make their own decisions on where and how they live, then we are truly taking their personhood from them.
I would be slower to do that NOW THAT I AM 83, I can tell you, than when I was a young Nurse in her 20s.
I think when someone is SO DEMENTED that they are a TRUE danger to themselves (the gas is left on, they are wandering and lost in the streets, their home is full of feces and unhygienic, then we are truly NEGLIGENT in not getting them to safety.
But I think if we are moving them when they are basically capable of knowing how and when to call us or medical for help, and we are just "worried" about small things. About "They might fall" (so might we). They might get sick and not go to doc in time (so might we ourselves). They might not eat well (yeah, right. Us, as well).......................then the waters are more murky.
It is very difficult. I think we need to recognize that when you lose our ability to make decisions we truly have lost our "selves".
I myself think that more elders should be left in their home than I once did. If they DIE of that decision, then to be honest, is that worse than living a few more years robbed of all they are and of all choice and control over the misery of their lives in care? For me, no.
But again, I am 83. I ONCE would have said "No longer very good and stable on your feet, in you go to care". Forgot to turn the low flame off the soup after you ate it? Off you go. House is messy and there's dust kitties under the bed? Off you go. Wouldn't say it now. Gets a tad different when it comes to roost close to home.
Your dad will only continue to get worse, and more than likely sooner than later both will require moving into an assisted living facility.
Your dads brain is permanently broken so I wouldn't under any circumstances even begin to entertain such nonsense of bringing him back home to once again fall off the roof of their home. He can no longer protect himself so someone has to step up and be his voice of reason and keep him safe.
This isn't just about your dad and what he wants because at this point it really doesn't matter what he wants. It's about what is best for not only him and what will keep him safe and looked after, but also what is best for your mom as she matters in this equation too. And she deserves a break after having to look after her husband who's only going to get worse. So keep things simple for her. And don't worry with your dads broken brain this too shall pass.
If at home your Mom is the de facto caregiver, then she gets to decide if she takes on this role or not. It doesn't matter what your Dad wants.
You tell your Dad that the doctor will need to reassess him to return home when had can demonstrate his ADLs. Your Dad still won't like this answer but at least YOU won't be the bad guy. "Dad, our hands are tied until your doctor decides."
I would also only talk to him in the mornings, since he could be Sundowning in the afternoons and hence him wanting to "go home". This is a very common dementia behavior and they are usually referring to a home that is way in there past, like a childhood home.
If your Mom has amnesia and doesn't remember how bad it was when he lived there, and also wants him to come back, then you will need to decide to step completely away and do not help them with the decision or to make the move (do not plan or organize it at all). Let your Mom know she will need to call 911 when they have a problem. You know you will return to orbiting around them, just to have to revisit the facility solution. Stay out completely.
My Mom is 96-years old and lives semi-independently in the house next to mine. This past year she broke her pubic bone and last month, her arm. She went through PT and is back to managing most things herself except grocery shopping and cooking (she doesn't drive any more). She insists on going down the basement to do laundry -- it doesn't matter if I go there to collect it, she will find a reason to go down those Death Stairs. Since she'd be bored to tears and angry in AL, I've decided to accept that one day I will probably find her at the bottom of the stairs. I'm giving her what she wants: to remain in her home until "something" happens.