I moved my Dad (who just turned 90) to an assisted living facility four months ago because his memory problems are to the point where his doctors, our family, and I don’t think that it’s safe for him to live alone in his house any longer. He has not “adjusted” as the facility staff said he would; instead he is becoming more depressed.
I’m his only child; I moved to another state right after school because that’s where my career took me. We both lost our wives at about the same time ten years ago. I don’t have kids, so both of us live alone, 500 miles apart.
Dad had a mild stroke two years ago. He fully recovered physically, but he started having memory problems shortly thereafter. Last year he was diagnosed with vascular dementia. I started paying his bills and convinced him to stop driving. Up until this spring, he had no problems living by himself (with some help from his neighbors and family who live nearby). He sometimes gets confused about where he is, and the neighbors told me that on two occasions he was out wandering around the neighborhood in the middle of the night. They got him home safely, but it is still frightening. Dad doesn’t remember any of this. I used technology to the extent possible to support him at home (set alarms to remind him to take medicines, monitor the pill box, monitor his movements throughout the house to detect falls, etc).
His memory has degraded to the point where he forgets that he’s on medication. The neighbors suspect that he only eats when they bring him food each evening. This resulted in him being hospitalized for a week this past May because of high blood pressure and dehydration. He could barely walk when he was in the hospital. When he was strong enough to be discharged, the doctors said it was no longer safe for him to live alone and recommended that he move to assisted living. He refused at first; to get him to agree, the medical staff at the hospital told him that it was only for rehabilitation so he could recover his strength. I signed him into a facility near his house where he has stayed for the past four months.
I visited two weeks ago to pick him up for our fall fishing trip. Because of the care he received at the facility over the past few months, he is much stronger. He had no problem walking a quarter of a mile to the dock or climbing stairs at the ball park. He still likes housekeeping—he cleans up the kitchen, made his bed, and cleaned the cabin where we stayed on our fishing trip.
He did not want to go back to the assisted living facility. His neighbors and I had hoped that he would adapt to his new community, join activities, and make new friends. It’s been four months now and it’s not happening. Dad says he likes the people there, but he misses his tools and home projects. He does not believe the “rehabilitation” story anymore. Every time his friends or I stop by to visit he wants to know if he is going home. He says that he should have the right to decide where he lives.
I’m certain that if he leaves assisted living and I leave him alone in his house, he will wind up in the hospital again, or worse. I want him to move in with me, but he doesn’t want to move out of his house and give up the frequent contact he now has with his friends and remaining family. I can’t move in with him because I’m not in a position where I can fully retire. I quit working full-time right after his stroke and took a consulting position where I can work remotely some of the time. This allows me to visit him one week a month. He won’t let me hire people to come to his house because he is determined that he can live by himself. He’s really upset that I’m spending money on assisted living that he says is “unnecessary and unwanted”.
We’re planning another trip when I visit him next week. I’m not sure that he will get in the car when it’s time for him to go back to the assisted living facility. I am heartbroken that I can’t do more to help him. He’s a “Greatest Generation” father—WWII veteran, mentor, and best friend. I want his remaining years to be as happy and comfortable as possible for him; I’m trying to balance that against concern for his safety.
I read “Being Mortal”, a very good book on this issue by Dr. Atul Gawande. It helped me understand the medical community’s point of view. Dad’s doctor says the enforcement mechanism they use to ensure patient safety is the state’s Adult Protective Services, but he said they are only called for extreme cases.
I’m considering letting him come home and take the risk, although I would still hire people to visit him for at least a few hours each day to make sure he eats and takes medicine. I’m worried about the wandering though, but it has only happened twice.
I would appreciate hearing how anyone else has solved a similar dilemma.
Thanks for reading this long post.
I understand your dilemma and I can only speak for myself, but I would not consider moving her back to her own home. Dementia does not get better, it gets worse as time passes and even though I would hire people to come to her house, there's always the possibility that someone wouldn't show up as planned, etc. and then my mom would still not be getting the best of care, like she will in the MCU. Before I had to move her, I had hired a nice lady to come in and spend some time with her, and do some light cleaning, but after awhile I could see that things weren't getting done and that the lady was not staying that long because she just had too many clients. I'd rather not go through that again. Since you can't be around all of the time, like I was, I would put some real careful thought into moving him back to his home.
I'm sorry that I can't help you with your dilemma but I wish you the best of luck with your dad. Please keep us informed.
The sad reality is he's only going to get worse and at 90, that timeline may be short. This unhappiness phase that he's in now may last a few months and it wouldn't be worth it to move him back home and have his health decline so quickly that you're worse off than where you started. As our parents age, the choice moves from happiness to one of safety. Your dad is safe now and well cared for, from what you say. Don't put him back into a dangerous situation just to make him happy. With dementia, it's like parenting a 2-year old child. The child would choose happiness over safety, but as a loving parent, you do what's right for your child and the first consideration is safety.
Her doctor ordered Home Health for her at my request. They come in once a week and take her vitals and are available for wound care, etc as needed. (So dad's dehydration, etc might have been caught sooner if you were connected with a home nurse). She also has an aid through them that allows her to have two baths a week and her linens changed.
Next I added a morning aid to come in and assist with the medication. This was after not taking thyroid meds correctly led to secondary problems. While the aid is there, she reminds aunt to change her clothes, brush her teeth, etc. and makes her a hot breakfast that always includes eggs. So she is well nourished. In addition she gets rehab to help with her balance.
Next because I realized I was getting worn out with the weekly trips I hired a couple (aunts great nephew and his wife) to take over buying her groceries, making her food and snacks, picking up meds from pharmacy, filling med box and various and sundry things that I kept putting off due to being stretched too thin. They also manage the morning aids. This allows me to come in and actually have time to enjoy my aunt instead of thinking I have to do everything each week. I pay them for one hour of work per day. Sometimes they do more, sometimes they do less. It works out. They live near by and can get to her home in minutes. The added benefit is they include their daughter and new baby in evening meals a couple times a week and aunt is at the heart of her family. I recently took a picture of the 9 month old baby sitting in the 90 year olds lap. So sweet.
So the key is to get the first person in the house. Maybe the HH nurse, after that hopefully he will see everything is going to be okay and it gets easier. I have the Arlo cameras. They are wireless and can be moved around to where they work best. You could set them up before he comes home and see what you think. With a late model smart phone you can check on him all the time. Of course you could also use your computer to check. No monthly fee from the icloud unless you want expanded services. There are many cameras and services available.
He can always go back to AL. Quantity vs quality of life is a consideration. At 90 they have had quantity. I love that you take him on the trips. But make him agree to changes before you bring him home and yes he will forget that he agreed but you just remind him that he did and let him see by your manner that is nonnegotiable.
At some point (by adding more hours) I'm sure it will be less expensive to pay for AL than for home care but if she has the funds then I will keep her where she wants to be.
My heart goes out to you! My husband is also an only child. In some ways, it's hard for him not having a sibling to confer with. But in many ways, it's very nice not to have anyone to argue about decisions with. I know this wasn't part of your original question, so please forgive the unsolicited advice. Do seriously consider moving your Dad closer to you. My husband's parents lived a few states away and had friends, neighbors, and cousins whom they relied upon heavily to support their independence. But when the crises came, it was my husband who had to take time off from work and travel to take care of things. He was quickly running out of vacation days, and his time away was putting a strain on our family, as we still had six kids at home at the time. Their doctors and hospital social workers finally convinced all of them that they needed to move closer to us. It was sad that they had to leave the home they loved, but they like their new home, especially because it means they get to stay together and out of a facility (for now).
Adjusting to the limitations of old age is not easy and made more difficult by a compromised brain. We all face those adjustments as we grow older. If your dad did not have dementia, and a friend of his was in his position, what would dad recommend?
Finding some activities with tools or such would be good for him . I am 80 and miss doing some of the things I used to be able to do, but recognize that that is life and look for compromises and for things to do within my limitations. He has lost the ability to properly evaluate his situation and to make alternative choices. You are doing a great job of caring for him!
I understand that vascular dementia, while it doesn't get better, can be stable for long periods, so he could be this way for a while. On his good days, he appears to have no problems at all. It's hard to tell someone who just cleaned out the kitchen, did a load of laundry, and took out the trash (climbing a flight of stairs in the process) that they have to go back to assisted living.
Dad thinks that because he can still take care of a house, he can take care of himself. I told him if that were true then he wouldn't have wound up in the hospital. He tells me "it won't happen again", but I don't believe it.
Your responses reinforce my thinking that his wandering is the most critical risk. The AL facility is designed to prevent this and they do a great job. I'm probably going to keep him there, but I'm also going to do more to get him busy with something.
Thanks again for all your kind responses.
I find it very hard yet necessary, as the legal surrogate, to have to make a decision for another human being, especially when they change their minds so much due to the illness. It is draining and it hurts the heart. I understand that.
Yet, there has to be a way in the facility where they feel useful. Mom is not a person to pass the time with crafts, or just listening to music. I am still figuring out how to keep her engaged, as my Mom has always helped others and now she has not much to do.
So, kudos for keeping him in the ALS. Now, trying to balance their stay there so that they feel needed and human is the next step. I am with you. Thank you for your question and to all, thank you for the answers as they helped me too!
You like the AL, right? I’d suggest you ask admissions what their census is like.
If this is a very popular AL and full with no empty beds..... what if there’s no place for him at this AL in a mo or two when you find once again he just can’t be living alone? Unless dad pays them to hold his room.
Years ago when I was first starting the maze that is dealing with our aging parents, I mentioned to moms gerontologist that I was concerned about dehydration (mom still had her home, did lots of house & yard work, put in raised beds in her 90’s type). The doc very matter of fact said, she’s ok...it’s widowed men that this is a issue for & that the night of or day after a high heat index day (central TX) the ERs just knew to expect elderly men coming in dehydrated. The old roosters were out working in the yard & over doing it. Dehydration leads to other issues like confusion, dizziness, low or high blood pressure, difficulty walking, fall risk. Technology only goes so far, left on his own something going to happen. Most likely a bad fall & if so, it’s hello hospitalization and rehab at a NH where he will end up staying at.
I’m guessing that your focus has been on his care & rightly so. But you do want to clearly look at his finances. Hopefully he has plenty of $ saved for AL and eventually MC or a NH. At 90, he’s outside the actuarial tables so you imo kinda have to overplan his costs. Like 2 -3 yrs of both AL & NH. 400k - 500k. His house & the Lake cabin will continue their costs too. Outliving savings happens as the costs of care are just staggering.
Having said that, I would tell you to not take him to live with you. The adjustment to the facility he's in NOW, which is close to where he lived, but not close to you(?) is a better fit than uprooting him and moving him 500 miles to your place.
You would need a LOT of outside care. He is on the precipice of being MUCH less able to do for himself--dementia and aging doesn't "get better" over time. You know that.
As far as him adjusting to the new living conditions, 4 months isn't very long. It's really up to him to decide if he'll participate in activities. Likely there are 4xs as many women and that may be a real negative for him. They are not going to give a 90 yo man power tools and let him putter. Would you WANT him to be puttering around in the garage with power tools at his age?
Give him more time, continue to do what you do as far as visits and activities and stay firm about him staying where he is and receiving the care he needs. I know this is hard.
You are a good son and obviously want what's best for dad. Keeping him safe and healthy is number one priority and that's what you are doing.
My Ma was not coping, another sister had put her into assisted living, being in her own unit attached to a rest home complex.. she hated it.. Didnt cope and got worse
The reason she wasnt coping and it had nothing really to do with the place tho it was the worse setting for her who wanted street lights and shops. but it was a country place set in huge grass surroundings so she worried who was going to mow it as she didnt want to.
Doesnt matter how many wanderings your dad does he has done them and they will only increase
The crunch finally came when a ***x*** sister happened to do her visit to Ma on her way home and found her outside the unit wandering around on a stormy night, she had been looking for the cat, and didnt know the way home. That sister put her to bed and did give her a cup of tea and a hotty to warm up with and left her !!!!!!!
Of course she came down with pneumonia and landed up in hospital which is when I took over and started setting rules.
It was obvious she wasnt going to cope in that rest home situation, the rest home had failed on many occasions and so I had a meeting with the social workers etc and organised for her to be in a 'normal rest home setting. Hoping that she would soon get some of her marbles back if she was fully cared for and maybe go into an assisted life unit within the building.
I told the hospital if she came to my place she would have to live in the kennel, and rolled off the list of situations that had occurrred at the rest home she was in. So waited for a room at a place she kept saying she would go to.
She lasted 6wks there and in that time the police returned her 3x , a nice tourist couple took her back [ her address was on her walker]
So that rest home refused to have her.
They had her assessed again in one of her aggitated states and she was for secure unit level.
That was over 3yrs ago and sadly she still hasnt settled.. The reason is not the place but cos of her illness she has now a memory of about 30sec and is in a bubble of her teenage days. Occasionally she might remember she has some children and her husband is off having an affair. [ her minds way of knowing he isnt around] he died 4 yrs ago
Your dad will never adjust to what ever you do. and thats why there are secure units etc, the mind is constantly playing with him and he will hate the present because he knows not one bit of it.
At the beginning she got told by the rest home nurses that I had put her there so of course I was everything under the sun she could call me. I told them it wasnt me and to say it was the doctor. I would explain that she got double pneumonia and the hospital wouldnt let her go home. She was unable to argue with that.
Seems you can say the hospital said your dad couldnt go home also, as he needed help.
I think you have enough to help you understand why he cant cope at home. I will just say at 94 and weighing now just 42kg she still moves the furniture in her room around every few weeks, no one ever knows when or how she does it. so being able to cope and do washing and put garbage out, isnt the clue to coping or not coping. But can they turn around and get back home in the evening is
So it might be that your dad is actually adjusting better than it appears.
Just putting in my two cents worth.
On one of my mother’s many trips to the hospital we set the conditions for her return home. She reluctantly agreed, but it kept her home without another trip to the ER for several months.
Good Luck
Reading the posts tonight confirms my feeling that AL is the safest place for my dad. In the last few days, I’ve talked to my his doctor and my cousin (a hospice nurse) and they agree this is a tough call. I don’t think he’s “show timing” when I’m there; he kept the house in the same condition when he was living there alone. The neighbors tell me that his bed is always made and the kitchen and bathrooms are always clean.
I have checked the cost of 24/7 caregivers that would stay with him at his house. They would cost nearly three times as much as he is paying now for AL. This is for a reputable agency who handles getting qualified caregivers; basically, it’s outsourcing his care to them.
I really don’t want to move him away from his hometown because he has many people (three this week so far) who come to visit him. His next-door neighbors are like part of the family to us—my dad watched their kids grow up, treating them like grandchildren. I think my dad may be closer to them in some ways.
Dad and I have had the same conversation a few times now…Dad still insists that he can live by himself. I tell him that if that was true, he would not have ended up in the hospital. He says that he’s better now and “it won’t happen again”. I tell him the reason that he’s better is because he’s been receiving good care at AL. He says he can take care of himself on his own. I tell him he wouldn’t like it if he forgot his medicine and had another stroke or fell and broke a hip. He says he understands there are risks in life, but he wants the right to live the way he wants.
I don’t have an answer for that.
Do our parents have the right to make bad decisions? I don't think that a court would declare him incompetent at this point.
Thanks again for all the helpful responses.