My mom (77) and dad (82) both suffer from dementia. My mom is way worse than my dad, but my dad has great difficulty walking. She cannot be left alone. My dad sold our family home a year ago, which my brothers and I were very happy about because it was way too much for them to take care of even though they had someone come in to cook and clean. Reluctantly, and only because they had to be physically out if their home, did my father agree to go to assisted living. Not just any assisted living either - it is the Cadillac of assisted living. Beautiful building, well kept, etc. Recently, my dad has been saying that he "has to get out of here". He wants his own house. He complains about not being able to sleep because of the noise and that all he ever eats are hamburgers and hot dogs. He won't tell the staff about the noise (he is next to the laundry room and they run it at night) and the facility always has three main entrees on the menu plus hamburgers and hot dogs. I don't know why he isn't ordering other things on the menu, all I can guess is that he doesn't understand what they are (ie Lasagna) but he knows what a hamburger and hot dog are.
If he leaves he says that he and my mom are going to get a dog (they can't even care for themselves and he wants a dog), and that they'll have 24 hour care. He has a house he wants to rent that has a couple of steps to get into but is basically first floor living, however he is claiming that he is going to remodel the bathroom with a walk-in shower to make it safe. We all live close by and quite honestly have been enjoying the peace of mind that comes with them living in assisted living. I feel like we will be going backward by them moving to a house where they will be physically and socially isolated. Also, I feel like someone (aka ME) is going to have to oversee the caregivers. I've tried explaining to my dad all my concerns but he says this is his life and he's in charge. He's basically being a rebellious teenager. He doesn't remember that he complained about the food the caregiver used to make before they moved into assisted living and that he's going to have complaints about the care in the house if he moves there. I've tried every approach. The worst part is, he has no idea of where my mom and eventually he are headed in the course if this disease. He just doesn't understand that she will require skilled nursing care very soon. He truly thinks they just need someone to cook and clean and be there. Also, my mom is now somewhat used to assisted living. My one brother wants to pursue legal action (guardianship?) if dad forces the issue of moving and my attorney husband says no way to that. I just worry for their safety, and that if they move, I'll be back to overseeing the caregivers and the run ng of the household like I was before they went to assisted living. I should add that I've got three kids (12, 10, and 7) who obviously still require my attention. If they were grown then this would be a slightly different story. My thought is possibly buying a new house for our family that has a first floor bed/bath and having them live with me but still have caregivers for them. I feel like I would sleep better at night. I know that it is probably common for people in assisted living to want to leave, but are we terribly, selfish children for wanting them to stay? Also, how can we persuade him to stay? Do we force the issue legally? My husband says that's basically like severing the relationship. I feel so bad for my parents - they've lost two children and I just want to see them happy, but I feel like he will only complain no matter where he is.
My husband (dementia) LOVED snow. He skied for many years, loved shoveling it, loved everything about it. I talked to his geriatrician and she said this to him, "Coy, I respect your right to decide what risks you are willing to take. And if the things you want to do, like shoveling the snow and raking it off the roof, would only risk dying, I understand why you might want to take that risk. But what is MUCH more likely to happen is breaking a hip. You would not die, but your quality of life would take a drastic dive. THAT is why your wife and I urge you not to take these particular risks!" I hope that your father understands, or could be persuaded to understand, that taking certain kinds of risks is no guarantee of getting out of the rest of old age.
One other piece of advice for you. Do NOT feel about decisions your father makes. This situation is Not Your Fault. You are doing your absolute best to keep your parents safe and in a happy environment. There are many things in this life we have no control over. It doesn't make sense to pretend we should have been able to control them anyway.
Then there is the very real danger of wandering, one block or 50 or 140 miles. It is truly ugly when police and social services get involved. In some cities, you could move from 8 hrs of care to 24/7 in a heartbeat if they are picked by the police, Then the option is home care or assisted living or memory care, once they become part of a social services system after being found wandering.
This is my experience in Washington, DC. It has happened to me. And it is always the caregivers fault.
for at least a year after this client was put in assisted living, neighbors would tell me about their wandering escapades.
Your husband may be right legally. But you need to think about the cost of keeping them alive as well. The dangers of them living in a rental house or at home are HUGE.
You are facing a very tough decision. All I know is that money makes all of this easier. Crass-yes, true-most definitely. Good luck and consult an elder care attorney ASAP.
Mom & Dad need to stay put because their needs are escalating, even if it isn't super obvious this minute, and will continue to escalate. Dementia doesn't take vacations or days off. It just gets worse and worse, and very unpredictably. They are in a stable environment, and I would leave them there. More change is probably going to be upsetting.
You really have to apply common sense and judgment to what mom & dad say from now on. If it seems ridiculous, it probably is and you have to be the adult in the room to make the decision that's not what will happen. You just can't take everything literally at face value anymore. This is one of the bad parts of dementia and it is hard for a lot of adult children to accept because our parents have always been in charge.
There's also a communication skill that has to be learned so our elders don't feel over-ridden, talked down to, infantilized, disrespected, or marginalized. It takes practice to seem as if you are going along without doing anything unwise or unsafe."Well dad, you're paid up for the quarter, and we can't get the money back, so you may as well stay put and not waste the payment. We'll look into it in a few months/weeks/whatever." Whatever it takes to buy time and not have to take action in the near term. "There's bad weather coming." "I can't find anywhere that doesn't have stairs." "Every place is full up for the next 6 weeks." "Movers cost $1,000! I need to find a cheaper mover for you."
"The doctor said you can't go anywhere until spring."
I think it's safe to interpret what your dad is asking for is a return to the way it used to be when life was better. That's gone now and it is so very hard for some elders to get with the program. If they *could* get with the program, they wouldn't need as much help! This will eventually turn into demands to go home again.
In an apartment he would not have help with falls, cleaners, cooks, activity planners, nurses, PT, doctors who make house calls, and 24/7 safety. In your house/on your property, YOU are going to be all those roles day & night like it or not. Nobody else will jump in, I promise.
When my mom was in the senior apartments, she was "going" to do a lot of things that were just ridiculous for her abilities. She was going to get a cab and go 1800 miles back home. She was going to do her own laundry but couldn't find the laundry room on the hall. She was going to do whatever whimsy was in her brain at the moment, but it never happened. She was going to do some sewing, but she could not get her machine threaded anymore, cut fabric (thank goodness), or operate the sewing machine even while she insisted she "was too" doing it. She did pin things a lot, and I hope that help her feel like she was sewing a little bit somehow.
She also would not order off the menu, just like your dad. Not being able to understand and conceptualize of what normal common food items are is a sign they would not do well in a regular apartment environment. This is a little flag warning of cognitive loss. All mom wanted was a hamburger unless I was there to order for her.
The laundry noise is a real problem. Can they be moved to another area? That would drive any one nuts, dementia or not.
Hubby is a lawyer? You got POA? You should determine the direction this takes for your mom and dad. Hubby as lawyer can make it happen. My wife's a lawyer. It's quite handy sometimes!
I think your husband is right that forcing this legally would be damaging to your relationship. And becoming guardians would mean that your parents would have to be found incompetent, and might not be as easy as you think. Would doctors declare him unable to make his own decisions?
He thinks that he can remodel the bathroom in the house he wants to rent. How likely is the landlord to approve of that? Do practical consideration like that get through to Dad?
Speaking of practical matters, can you get them on a waiting list to get into the next open apartment NOT next to the laundry room? Could you arrange for him to always be given a half-serving of the main menu-item along with his hot dog, so he can get used to what is available? (What does Mother eat? Does he order for her?) Or when you visit can you go over the menu with him and Mom and put in an order for the next week? Solving these complaints won't really bring him happiness but they would show that you are very interested in his happiness, and they might buy you some time.
I wish you strength and peace as you deal with this very difficult issue.
I do feel bad for him being next to the laundry room. I don't know how noisy it is, but the sounds of machines running at night would bother me, too.
I feel so bad for older people who have lost so much of the lives. I wish there was a way to rebuild life where they are. I hope that you are able to work something out. However, I wouldn't be depending that any change will make your father happy. Something I would love to see is more cottage-type assisted living facilities, where people would have a little bit of yard to enjoy. So many of the assisted living facilities are like college dorms or hotels. Unless you engage in the activities or watch TV, there's not really a lot to do except to sit around and wait for God. I can understand his restlessness if he is a man who likes to be outdoors sometimes.