My Dad (who just turned 90) had a mild stroke three years ago and was diagnosed with vascular dementia. After recovering from the stroke, he continued to live alone in his house without any problems. I’m his only child, and I live 500 miles away in another state. Since his stroke and diagnosis, I stopped working full time and took a part time position that allows me to work remotely (with the exception of monthly in-person meetings where I have to be in town). For the past two years, I’ve taken more responsibility for his care. It started with POA so I could pay his bills and manage investments; then I started visiting more frequently. It’s a nine hour drive (each way), so I usually plan to stay there for a week. For the past year and a half, I’ve spent one week each month at Dad’s house where I make sure he gets his medicine, good meals, and grocery shopping and laundry done. He doesn’t need much care beyond that. This arrangement worked fine until about five months ago when he started forgetting that he was on medication. The visiting home health nurse sent him to the hospital for severe hypertension and dehydration because he had forgotten to take his meds and eat. He also had two instances of wandering around the neighborhood at night. He was discharged from the hospital under the condition from his doctors that he couldn’t live alone. They recommended assisted living. I moved him to a facility near his house where he’s been the past five months. He was weak when he was in the hospital, so he was told it was for “physical therapy”, which was actually true for the first month. Dad made it clear to me and the AL facility staff that he didn’t want to be there. The staff told me this is a common problem, and they told me he would eventually “adapt” to his new home. They told me to “just leave” and don’t visit for a few days. I reluctantly followed their directions (it’s one of the hardest things I’ve ever had to do). When I returned to visit him after a few days, he had his clothes folded on his bed, ready to pack to go home. (I had taken his suitcase home). The staff advised me not to take him out of the facility for several weeks to give him time to adapt, make some friends, and get “into the resident routine” of planned activities and events. Again, I followed their advice and waited four weeks; he was still very depressed and wanted to go home. He was also much stronger, had gained some weight, and was walking without a walker. I didn’t want to leave him there for months waiting for him to “adjust”; he’s 90 years old and his dementia could worsen at any time. I want to spend as much time with him as I can, doing whatever he likes to do while he can still enjoy it. Since he moved to the AL facility, we have spent our week together each month taking short trips (fishing, ball games, or to family parties). We stay at his house like we did before he moved to assisted living. He’s really glad to be home and is much more relaxed and happy than when he’s at the AL facility. The AL staff cautioned against taking him “back home” because it may confuse him about where he is living. This doesn’t seem to make any difference to me. He usually doesn’t remember where he slept the night before. He does remember that he doesn’t want to go back to the AL facility because he “doesn’t need any help” and is “willing to accept any risk” of being alone. I know he’s getting good care at the AL facility, and I want to keep on having our time together each month taking trips instead of being at the hospital. I’ve had to use deceit to get him to go back to the AL facility each time; it’s easy to do because his memory so poor—although this changed this last month. I think the AL facility might now be a “long term” memory, which he can access much better than short term. I’m visiting him next week, and we’re planning a short fishing trip, baseball playoff games, and a few trips to his favorite restaurants. I really want him to adjust to his new home at the AL facility. I know that he misses his house that he built and lived in for 60 years, but he can no longer manage it by himself. I’ve tried to get him to move to my house, but he doesn’t want to leave his friends and family (he gets about 2-4 visitors per week at the AL). I lined up a home care agency to provide care so he could stay in his house, but he refuses to have any “strangers” in his house and he “doesn’t need anyone” to help. I can’t move in with him because I still need a job. Is the present AL arrangement with me visiting one week per month the best solution? I know that taking him home each month improves his mood and lessens his anxiety. Is this a good idea? Should I stop taking him home and sell the house? I really don’t want to do anything at this point…I’m just looking for ideas or other thoughts.
Bringing Dad back home, as you already know, would mean he would need around the clock care but as usual it is not uncommon for an Elder to refuse any strangers in the house. You would find yourself living with Dad and having to quit work, something not recommended.
I agree with the Staff, taking Dad back to his home for a visit does not work well... it is like starting all over again with Assisted Living. Eventually Dad will say he wants to home, but that will be going back to his childhood home, where life was simpler and fun.
You mentioned taking Dad back to his house improves his mood and anxiety, but once back at the AL center, the Aides no doubt have their hands full as Dad will be upset wanting to pack and go home.
Since Dad enjoys ballgames, fishing, eating out, that tells me his brain is still doing ok and if you approached Dad about selling his house, you will run into major resistance. You might have to wait until his dementia increases or if he says it is time to sell. My Dad [in his 90's] told me to sell, but it took me months to go through all the things in the house, so extremely exhausting :P
Keep us up-to-date on what progress you make with your Dad.
This is tricky--he needs to be in the AL, the very reasons he's doing better and wants to "go home" are because he is receiving the care the AL provides. He goes back home, be begins to fail and you're back on the hamster wheel.
He CAN'T take care of himself, that's why he's in AL. Of COURSE he wants to go home., I never met a soul living in an ALF who didn't want to go--but most accepted that living with round the clock care was best for them.
I think going back home would be hard on him, but if it's refreshing and pleasant for him, and he KNOWS when you leave he's going back to the AL--then it's fine. If he gets sad and depressed and starts arguing or fighting with you to move him home--then it's completely counterproductive. You have to make that call.
We moved Mother and Daddy into my brother's place 20 years ago. Sadly, the home daddy built and loved so much was just falling into ruins since they couldn't care for it and we kids all had families and lives and couldn't help them keep it up. Financially, also, it was a burden, so it was sold.
Mother has never been back to the house. Losing it broke her heart and she doesn't even like to see pictures of it. I've been back a few times and the family who lives there has had me inside to see the improvements. It gorgeous!! Made me realize mom and dad were severely neglecting the place.
This is a call only you can make. Do you want the emotional burden of knowing dad lived alone and all the potential hazards that come with that---again?
My mom is stage 7 Alzheimer's but lives with us. She is mostly home bound, but we do take her out a bit. She enjoys going on a car ride. Our family is planning a trip out of state. We purchased a motor home and are planning on loading mom in and taking the trip. Even the hospice doctor says why not, she can sit in the reclining chair there and sleep in the bed as easy as doing it at home. I think she will enjoy it. Keep on living and enjoying your dad while you can!
Your extended visits are, I'm sure, brilliant for your father; he clearly is getting a lot of enrichment from them. It would be a loss if they didn't continue.
Having said that, the regular disruption is going to scupper his chances of getting maximum benefit from the facility; not least because they motivate him not even to want to make anything of his life there. He doesn't need to - he's got better things to look forward to. And that's letting alone the usual guidance that people with dementia tend to struggle with change and new routines.
Would it be possible when you come to stay for you to base your activities around the ALF so that it remains his home even when you're enjoying your vacation together?
I’m not considering letting dad live alone in the house; the only way I would is if he had live-in helpers. He already said he won’t agree to that. I’m not considering selling the house, at least not yet. It’s the place where Dad feels most comfortable and least anxious. I don’t have time to deal with all the stuff that has accumulated over the years and it gives me a place to stay when I’m there. When I’m not in town, It sits there empty for three weeks. I installed security cameras and alarms and the neighbors are great about watching it.
While he is at the AL facility, he is polite with the staff, talks to other residents, and is his usual friendly, social self. The staff says that he is no problem, and they have seen no change or decline in his memory the five months that he's been there. Nearly every day, he tells the staff that he’s “going home”. Sometimes he folds all of his clothes and puts them on his laundry basket on his bed, so he’s “ready to leave”. He calls his empty house and leaves messages to my mom (who died 11 years ago) that he is coming home. He sounds cheerful sometimes and despondent other times.
The AL staff says Dad’s behavior doesn’t change on either side of my visits. It’s probably because he doesn’t remember where he slept the night before. The first day I bring him home, he doesn’t remember being at AL. The first night away from home (whether it’s back at AL or at our fishing cabin) he doesn’t remember being home. If I remind him of an event or detail, he remembers.
I’m the one that has a handful when I try to get him to go back to the ALF. When I pick him up, I explain to him about why he’s living here in AL and why he can’t live in his house alone. We go over our plan for the week, explaining that I’ll be with him while we’re in his house, and that we’ll be coming back here at the end of the week. He forgets about the conversation after a few minutes.
He remembers that he doesn’t want to go back to AL, he just doesn’t remember where it is. I have had to resort to telling him that he has a physical therapy appointment at the AL. I drop him off and tell him that I’ll be back after work. Which is all true, but it’s a three to four week period. It’s worked so far. He forgets how he got there, he just complains that he can’t leave. (Security is very good at this facility).
It breaks my heart to see him just wanting to go home and having to be the one who won't let him. I know it's the disease's fault, not mine, but it still sucks.
Thanks again for your helpful responses. I’ll see how it goes with him next week.
Oh, regarding making paragraphs when one post on this website, it all depends on what type of device you are using. I am on an old fashioned desk top, so paragraphs show up when I place them. On some devices one has to triple space in order to get those paragraphs in place.... give that a try, hope it works.
I also use Firefox, so I am able to make the box that I type in much larger by pulling down the right bottom corner of the box. If you see about 6 or 7 tiny dots in that bottom corner, than you have that option :)
Your question about taking your dad back to his house, struck me because I think that we all want to make our LO's feel better. I think that we, even though we know they have dementia, still see things through our eyes. We envision that it might be nice to see this or that or visit this place, but, I think it's important to realize that their ability to process information is not the way ours is. They can't appreciate a short visit and then realize it's time to go back to the facility. It may confuse them or scare them or even set them back in their adjustment.
I recall a couple of times taking my LO out from the AL. She seemed fine, knew that she was living in the AL, liked the AL, but, when we returned to the parking lot....she didn't know where we were. It all seemed strange to her and she was afraid to go inside. This upset me. What would happen if she refused to get out of the car? Fortunately, I was able to get her into her wheelchair and back into the building. I took her to her room, activity room to see her friends, staff, etc. It took a while for her to acclimate. She continues to get disoriented when out of her surroundings. I'd keep that in mind, so as to be prepared to handle it, if your dad reacts that way.
Good luck with your dad.
Sunnygirl, he's paying for AL with his savings, and I've already got an elder care lawyer who is making the financial moves to get him set up to qualify for benefits (he's a WWII-era vet). That's been a journey--enough for another topic thread! I also wonder if I'm still early in this process, since it took seven months for your LO to adapt.
Staaarrr, your experience with your mom (as well as a few others on this thread) makes me think hard about bringing him home to his house each month. It doesn't seem to make any difference when he goes back, but I will watch more carefully and get my "local family" to visit more often right after I leave to see how he copes.
Thanks again, everyone.
Of the many things that bother me about having to place mom in a memory care facility is how devastating it must feel to be yanked out of your home.
Folks everyday at her facility are either waiting for a loved one to come get them or they are looking for a way out - up until recently, I took mom out to appointments, dinner and movies but never near her home of nearly 70 years -
she still asks to go home and it's not to her childhood home - she knows where she lived and at least a year ago at 93 could draw a map to get there - she still thinks of walking down the street to see a friend she has known since she was 18
On an outing before we had found the right anti-anxiety med for her, she put up quite a fight with me about going back inside her facility - I literally had to use every ounce of strength I had to pull her in with her hitting me and yelling for someone to call the police
Now, that she is too immobile to get in my car, I feel badly that she'll never get to do something fun again so do as many fun things as you can with dad as their health can change in the blink of an eye
We had two beautiful days of weather for a fishing trip with two of his friends. He loved being outside and on the boat (the cabin was heated, but it wasn't that cold out). We watched a lot of football and visited his favorite restaurants and some of my cousins. He forgot that he had been to the facility; couldn't remember it's name or location. He really can't remember where he slept the night before.
When it was time for me to leave, I told him that he had an appointment for physical therapy. He got in the car, we drove back to the AL facility and he didn't recognize it until we got inside. I left him in his room, once again feeling guilty and hating the fact that I have to choose between his happiness and safety.
I'm glad you and your dad had such a nice time on the fishing trip. Thanks for coming back and letting us know how things are going. I hope you get to go on another outing with him real soon.
Don't sell his house, if his assets eventually run out he can keep the house while qualifying for Medicaid. Personally I would use a property management company to rent out the house so that he gets a little income. Don't try to manage the rental yourself from far away; what if you get a 3 am call that a pipe has burst or the heat is out?
It will be hard for you to adjust to leaving your dad in AL all the time, but you're fortunate that he can go out fishing, to ball games, etc. Enjoy these outings while he still has the ability.
Hugs. Take care of yourself.
I want to share just my personal experience with my aunt, who's 95 and lived alone (very far from where I live) until 3 months ago; not only she refused to have a "stranger" in her house, she didn't want to leave a spare key to the cleaning lady who helped 2 hours per week (that was the maximum she would allow!). She didn't even want to allow a doctor in her house because he was a "male" and it wasn't ok for a single woman to let a "male" going to her house. Imagine.
3 months ago she fell. Somehow I convinced her to give the spare key to the helping lady, and thanks god for that, as the week after she fell again and was on the floor for almost 24 hours, alone. It was just a coincidence that the cleaning lady was meant to go the day after, otherwise she could have been on the floor for a week!
When we called the ambulance we were all so scared, and this gave me the courage to really put my foot down; either she accepted help at home or she was going to the hospital. She was so furious with us but she was scared too and I admit I took full advantage of that. I didn't even wait for a reply, I just hired a 24/7 carer for her, hoping and praying that it would work...
3 months later: the carer is her best friend, she put on weight, she's more happy and peaceful she's been in years. The carer has managed to make her accept the doctor so she's regularly checked now and is in much better health. She often calls me to thank me and I can feel in her voice she finally feels safe.
Some people adapt to hospice, some other, especially if they are very independent, don't. Just follow your instinct, and don't be afraid to try with a carer at your dad's place, even if he says no at the beginning. You fully deserve that peace of mind, and it is a very good compromise for your dad too.
Many blessings, keep us posted!
I’m just wondering if the visits home are kindling long term memories and adding stress for your dad. I would wean him off these visits.