My Dad is 97. He has dementia but still lives in his own home (Mom died 8 years ago). He can feed himself, bathe, dress, all the daily tasks. He REFUSES home care or assisted living. My 75-year-old sister drives 45 minutes each way 3x a week to visit, bring him food, etc. I don’t live in the same state, but I spend one month every quarter with him. My sister and I have gathered all the info about all options. We can afford those options. But Dad refuses and he can’t remember any of our conversations nor does he believe when we tell him the odd/unsafe things he’s doing. He has bad arthritis in his back and must use a walker. He is bored and lonely (doesn’t remember when my sister visits so he thinks he’s been “abandoned”). We know he needs stimulation during the day but don’t know what to do! He sleeps and watches TV. We’ve tried puzzles, books but his cognition doesn’t allow for those activities anymore. He often says “I’m wasting my life” so he knows what’s happening but won’t let us take him to adult day care. Or have “strangers” visit. He doesn’t belong to a church. The neighborhood has changed over the years so he doesn’t really have neighbor friends. My sister is doing as much as she can. We hate to see him just sit there, getting worse and worse. Any advice at all would be so appreciated. 😢
Do the right thing and place your father before you find him at home not breathing one day.
If he hasn't appointed anyone POA and he's getting along ok for now you may have no way to force him to do anything differently. You're spending four months a year with him? That's a lot. How independent is he REALLY and how much are you and your sister propping him up? You may be in the position a lot of us are/have been in where the best you can do is keep an eye on him and be ready to make changes when there's an emergency or hospitalization.
Dad belongs in memory care. He's no longer capable of making his own decisions, so you and sister must do what needs to be done. My husband is in memory care now, and I have no regrets about finding him the best possible care for his condition, which is now severe dementia. He is comfortable and content there. I wish you luck in finding such a place for your dad, and SOON.
Hopefully he already has his affairs in order. I've known several elderly men who lost their wives and never updated their Wills, Trusts, the Title to their house, bank accounts, cars and other important property. It creates a big mess when they don't get these things done. His estate would be tied up in Probate for several YEARS if that happens.
The other concern is LIFE SAFETY. I'd be afraid he wouldn't know what to do if there was a kitchen fire. He wouldn't be able to get out of the house quick enough, or use a fire extinguisher. This is more important than having relatives come visit and prop him up.
If he is bored, he would be better off in placement. Does anyone have POA?
“My 75 year old sister drives 45 minutes each way 3x a week to visit.”
You are also I’m guessing 65 or older, and you travel out of state to spend “one month out of every quarter with him.”
I say stop the madness. It’s not making him any happier and nothing you can do would! I’m willing to bet that if you both moved in with him and waited on him hand and foot 24/7 he would be no happier than he is now.
Instead, ask yourselves what you want to do with your own remaining years!
If you could go back in time to when your dad was say 50 and your sister was 28 and tell him he would one day be 97 with dementia and arthritis, living alone, refusing all suggestions even though he can afford them, other than his two daughters twisting themselves into knots, with him complaining about everything anyway—would he say “sign me up! That’s exactly what I want and what I expect you both to do!” Let’s hope not! Even if he did, would it make any sense?
You don’t mention whether you or your sister have children but if you do, are you hoping /expecting any of them to do for you what you do for him?? Either or both of you could encounter health problems of your own any time.
Wishing you courage to change. He will never tell you or give you permission to do so.
“ There is no more happy “ for an elder with advanced dementia.
Call your father’s local County Area Agency of Aging . I did this for my mother , they sent a social worker out who deemed my mother unsafe at home , in order to place her .
Have a facility picked out ahead of time .
I also agree with others that getting him into a good, reputable facility is a wise solution. You won't be done managing things, and he probably won't stop complaining, but at least he will be safe, nurished and will have access to a social outlet -- and his family can get off the hamster wheel and have some peace of mind.
Like others, I'm hoping he has an assigned PoA. This person needs to read the doccument to see if there is a criteria to activate it, or if it is "durable" (effective immediately).
If he doesn't have a PoA, then you can opt to use online PoA forms and then finalize the document in the way required by his home state. This will work and I've done it for both my MIL and Mom as long as you are confident no one in the family will contest the PoA. Make sure it is durable. This is faster and much less expensive than working through an elder law attorney, Otherwise you will need to pursue guardianship, which is time-consuming, espensive and can be draining if he doesn't cooperate.
Or, you will need to report him to APS and he will eventually get a court-assigned guardian who will take over all of his care and finances. The family is outside of any knowledge of the decision-making. They may be consulted (we were in the case with my SFIL) but you will no longer have any insights or access into his finances or medical decisions.
His current situation needs to change as soon as possible or else your family will be making critical decisions in a crisis.
My father is 97 with dementia also and is in a nursing home. He could care less about doing anything other than eating donuts and sleeping. He is simply not capable of doing more than that..
If there is a POA and its immediate, get him placed in a nice Memory care. If Springing you will need a Dr or two to declare him incompetent to make informed decisions and he needs 24/7 care. If he has no money, there is Medicaid. If he has some money use it to get him into a nice Longterm care facility that takes Medicaid. When money starts to run out, apply for Medicaid. Do not take him into your home.
He cannot live alone anymore.
You could try the nurses at home or going into a nursing home but it sounds like that won’t work because he doesn’t remember.
I am going to start right now and say that I am of the belief that if someone has been diagnosed with any dementia they should not be living alone.
Your father no longer has the capacity to determine what is safe for him.
If he does not recall your sister visiting and bringing him food 3 times a week he should not be alone.
Who is his POA for Health?
If no one then you or your sister may have to seek Guardianship.
the option to get the ball rolling might be to report him to APS as a Vulnerable Senior.
You could contact the local Senior Service Center near him and talk to a Social Worker. They may help.
Last option and this may happen anyway........ is to wait.
Wait until he falls and your sister does not find him for 3 days.
Wait until he leaves to go get the mail and can't find his way back.
Wait until an "official" from the Gas Company comes to check the meter and asks to come in to check something and your dad gets robbed.
What happens if your sister gets sick or hurt and can't visit dad for a month?
You have SO much good advice here. What a wise and caring community. Place your dad in a memory care facility where he will be safe. You'll be pleasantly surprised at how good the staff is at engaging even the most senior of seniors in the activities and socialization. Most importantly, he'll be safe. And you and your sister can get off the demanding treadmill, and enjoy your dad for himself rather than as a demanding disruption.
Good luck sorting it all out. Let us know how it goes.
I really feel for your situation with your dad. Ours is not much different. There are six siblings, and most live near by and step in during the week. One of my siblings and his wife are living with mom, but they get relief during the day because we share the burden.
We are currently discussing this very thing. A home health company come in certain times in the week to help with the things that had burned out my sister and her husband.
Someone who really needs the help probably won’t like it, and then not agree with it. Then, you have to decide how much ‘independence’ they will be allowed to have in the decision. The day will come when it will be necessary.
It is so difficult to watch a parent you love decline. After all the years they cared for us.
If he won't have strangers visit, or won't go to an adult day care, and doesn't have any friends nearby, he's just going to be bored and spend his days unstimulated.
It is unfortunate to watch, but if he has cognitive impairment, and doesn't remember who has visited, there isn't much to be done to fix this.
My once sociable husband suffered a massive stroke at the age of 53. Now, 11 years later, he is content to lay in bed or recliner and watch TV all day. He's been doing this every day for 11 years. The first few years, he was still pretty fuzzy headed and didn't really watch or understand or interact. Now, he is directing me to change the channel and deciding what he wants to watch.
He doesn't like anybody coming by. Even his kids and grandkids. It interrupts his TV watching.
You can leave your father be, if he stubbornly wishes to stay in his home, and "waste his life". At some point, when he becomes unsafe on his own, you can move him to a care home, where he will find other residents to interact with. Or just to watch.
Moving him to a care home now might be a good option for him and for you.
If he doesn't remember his family visits and doesn't understand unsafe behaviors, it is time.
You might try telling him there is some kind of safety problem with his home which requires him to leave the home until fixed and you have found a great place for him to go (ALF you have chosen; preferably one with memory care unit). I know this is a white lie but at this point you need to do what you have to do in his best interest. He may not believe you, or agree to this, but you will need to be firm. This would at least get him in the door and hopefully he would adjust after a while.
Good luck!
I am so thankful for this forum because it speaks truthfully to the special challenges that we have in making these hard, but necessary decisions for those in our charge.
Best wishes, and be strong!
She also has a dementia therapist that has been visiting her 1x week to help her understand her brain changes and just sort of sneak in some therapy-someone for her to talk to that is not family. We’ve also recently had to add a home OT person that is coming 2x week. With all that someone is laying eyes on her 5 days/week. My sister and I both are within 20 mins of Mom so sis takes her to dinner several times a week with her family. I am in charge of finances and more of her daytime drop-in visitor when I can. I’ve also recently linked her CPI security account to mine and can see her on the various cameras around her exterior and ive started remotely setting her alarm late at night and disarming it before she wakes in the morning. She forgot a long time ago how to do this and it just makes us feel better knowing the alarm is set. None of this is what we want-we want her in AL so she is with people and has options for activities. Her biggest complaint is boredom and being lonely. But we’ve tried for years to get her to move- unsuccessfully. We tell her these are the trade offs of living in your home. Alternatively, the trade off of having people around and not being lonely is living in a retirement or AL community. The therapist says her biggest struggle is not having PURPOSE. It’s just so hard to find that when the memory is so unreliable…can’t remember friends to call, or anything to talk to people about. So i just continue to watch her every so often (on the cameras)as she walks in and out of her house all day-waiting and looking for anyone to come visit. It’s really sad but i have to remember that by never making a choice for her future, she chose this. Best of luck to you with your dad-you are not alone.
When a person is inflicted with dementia, you do not leave it up to them to make quality of life / care need decisions. Their brain chemistry has changed as they lost / losing brain cells and do not have the cognitive ability to make decisions on what is best for them.
They will always say "no" -
Most people, as they lose their independence want to / try to hang on to whatever perception they have of their independence. However, you dad doesn't have the brain capacity to understand what he needs.
You / the family need to make decisions for him, understanding he will resist.
I feel for your sister, at age 75, taking on the responsibilities she has. I believe you need to discuss getting a CASE (or care) MANAGER to manage his care and hire caregivers as needed.
You say he knows what's happening.
If that is true, than I believe he might not have dementia - he may be in the process of losing more of his cognitive abilities. Whatever the case, it sounds like it is not safe to have him living alone and making 'any' decisions which involve his welfare/best care. He can't and isn't able to do so.
Read Teepa Snow's website.
Study / learn how to communicate (with compassion / understanding) with a person inflicted with dementia - you do not engage them in decision making. You do what you need to do and expect the transition to be challenging for him (and the family).
First, you do not 'explain' anything.
You might say things like:
This is temporary. Until the house plumbing is done.
Going to a facility where they have either assisted living or memory care unit. And, you get his room ready with his furniture / furnishings so it looks familiar. You do not tell him where he is going until he is there ... Then you tell him that you (and he) are visiting a friend of yours - in other words, you keep him as calm as possible and give him hope.
There appears to be more needs here than dealing with him being bored.
He isn't able to focus, may often feel / be confused / anxious / depressed.
Is he on medication?
You need to deal with the underlying issues - and needs.
Yes, I understand that he feels he is 'wasting' his life.
Get volunteers or paid professionals (care providers who know how to interact with him, not 'just' cooking and doing laundry) to take him out, if you think he would be okay out in public, or even going for a ride - to the park or something.
I think many adult children feel they are respecting their parent by listening to them and doing (or not doing) what they say they want; may feel intimated to do something else ... there comes a time when you / family need to step up and in to manage his quality of life / care needs, when he cannot, REALIZING it is hard and you do it because you love him. (He won't understand this.)
When you realize that he will always refuse and that his brain cannot do what he thinks it can / is doing (functioning as if he doesn't have dementia - or even if he is aware of some aspects, he 'still' wants to do what he wants. He will never want change; he wants what is familiar. It is frightening to be confused, losing one's mind / abilities and going into the unknowns ... which is what is required as these serious life transitions are present.
Sounds like he either may need a 24/7 live in care provider or moves into a facility. What's keeping him from walking out of the house and getting lost? or going out when it is freezing cold with just his underwear on?
Hire a person that understands dementia and know how to interact with him to take him out or do whatever you feel he can do. Just 'be' w him.
If he decides to sit and watch tv, then that is what the caregiver does, too. They talk to him, perhaps play music or watch videos (sports, travel, history, art).
Be sure to have all legal documents in order.
Ensure your sister has more help / support. Sounds like she is doing way too much at age 75.
Gena / Touch
The 36-Hour Day: A Family Guide to Caring for People Who Have Dementia, Memory Loss - Johns Hopkins Press Health Book. After 35 years, still the indispensable guide for countless families and professionals caring for someone with dementia.
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• choosing a residential care facility
• support groups for caregivers, friends, and family members
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Gena / Touch Matters