My 91 year-old dad has been in assisted living for two years; he had a stroke five years ago, and was diagnosed with vascular dementia shortly thereafter. He had been living by himself since my mom died 13 years ago. I live 500 miles away in another state. I have his POA, and I arranged for his Veteran’s benefits as his fiduciary. I’m a widowed, childless, only child, so it’s just me and him. We talked about moving him to be closer to me, but he didn’t want to leave his friends and family who visit him often. He thinks he can still live by himself in his house; the reality is that he doesn’t remember to take medicines, he doesn’t make meals, and he hallucinates and sometimes wanders the neighborhood at night. To stay in his house, he would need someone to stay with him full-time. I wouldn’t want to try to manage an agency or private caregivers from 500 miles away. I can’t move in with him because I would have to quit my job as an IT consultant and that would jeopardize my future retirement.
The solution we’ve settled on is that he stays in the AL for three weeks each month, and I work at my job back at my house. One week each month, I pack up my laptop and drive to his old house (which stands empty the other three weeks) and pick him up from AL and bring him back to his house for the week. I work from his kitchen table, while he watches TV or does his house chores like sweeping the porch or tending his plants. I cook and he washes the dishes; this isn’t “show timing”, he does this consistently every week. We have a regular restaurant tour, and I usually plan activities, such as ball games or fishing trips.
This has worked for the past two years. He doesn’t remember what happened 10 minutes ago, so he forgets about being at the AL by the time we’ve driven away from it. I have given up on explaining to him why he can’t stay in the house by himself anymore; I just drive him back to the AL which he doesn’t recognize until he gets to his room. Then he remembers and wants to go back home. Leaving him there breaks my heart; but I know that he’s safe. I always worry that he will be a problem for the staff after I leave, or have to go through an adjustment again. I always ask the staff after I go back how he is doing or if he is any problem; they always say he’s not any problem; he’s usually forgotten about anything that happened that week. I have a caregiver from a local agency who visits him (she's my "eyes and ears" on the facility); she reports the same thing.
During this past two years, Dad’s cognitive decline has been slight, but noticeable. The staff said that he has periods where he hallucinates (thinks his wife or mom is in the hospital) and tries to leave the building. The staff said he tried this a few times last month, and they recommended moving him to the memory unit. I took him to see his behavioral neurologist and family physician; they agreed that it was a good idea since it is a more secure unit and there’s a higher staff/resident ratio. I moved him last month.
The memory unit director doesn’t think taking him home each month is a good idea. She said that Dad needs to think of the memory unit as his home now, and that what he really means by “home” is his childhood home.
I don’t agree. Dad can tell you the address, street by street directions, and show on a map where his house is. It makes him happy to be there. He built or worked on everything in the house. Now, he just talks about what he’s going to do, he’s not able to actually do any work, but at least he can be “on set” for his walks down memory lane. He says that’s where “his memory is” and “where he should be”. I can’t make it happen 100% of the time, but I can make it happen for one week a month.
I don’t want to take that away from him.
I’m preparing for a care conference when I visit next week. Any advice appreciated.
As your dad progresses with his dementia and he will, he will need to feel like his new place is home. It is so hard for you to watch, but it will be the best for him.
My mom went two times back to her home because my dad couldn’t tell her “no.” She did okay the first time, but the second time she got really confused after returning to the facility and then threaten to commit suicide. Now, she wouldn’t have, but she got overly confused and couldn’t process everything.
She ended up in a behavior ward for a week. That was the worse week I went through with my mom, she was this 5’1” little 72 year old woman and surrounded by alcoholics and drug addicts. She was safe, she didn’t know why they were there, but it was very heartbreaking for me.
I know this is hard to hear. Your dad could be different and for now he does ok when you take him back.
My concern for you and him is what could happen.
My suggestion is 3 fold. One is to keep him where he is and let him adjust to it.
Two is to continue to do exactly what you are doing, but understand that at anytime it could change. Three is to find a place near you and move him now before he goes down more with dementia. He will have time to adjust before the processing and confusion gets bad. You will be able to see him more and do things with him. Bottom line is no matter what you decide, what he needs most is your love and your friendship. What you need is to know he is safe, comfortable and getting good care.
Since I’ve been though this once with mom then my dad, both have passed on, my choice would be to have him near me.
He may not like it at first, but just talk to him, tell him your thoughts. Let him know that although you know he wants to be at home, you just cannot make it happen for him. Tell him you want him near you so you can be together more. Bottom line, time together is larger than any house. Good luck, I know it is hard. I’ll be praying for you and your dad. ❤️
Unless the MC director can give specific examples of how the trips home negatively impact your dad (not them) when he transitions back to MC, then there’s no reason to stop taking him home. His wants and needs are what’s important here and as long as you’re able to meet them, it all works. The caveat here is if his transition back causes him distress and this manifests as agitated behaviors. That’s not a good feeling for him.
If you’re really wondering how it would impact your dad to miss his once/month home visits, you could see how he does with not taking him home for a month.
I answered last night but didn’t notice it was you and your sweet dad.
Last year you were dealing with his auditory hallucinations. At that time it was a radio he heard. You were contemplating memory care then.
I think you are exceptionally tuned into your dad’s needs and I love that your life is manageable with your spending a week with him every month. I wish everyone could manage elder care as well as you have. Such a great balance of keeping him safe and allowing him to spend time in the home he obviously loves.
So good to see you back on the forum.
Thanks again.
Thanks for your reply
I can’t speak to ALZ or dimentia like others. My mom has Parkinson’s without dimentia (may happen in future, who knows?). Hard to know how important routines are for your dad specifically. Some say routine in general is important so switching him back and forth is not a good idea. That’s so tough to figure out. Just curious...Did he like routine before ALZ or was he more ‘laid back, easy going’ kind of guy? Still, you and he have to adapt to what is best for him, even if it’s difficult. Not easy to do.
I wish you and your father well. You sound like you research carefully so I would trust your decision.
Has to be hard doing all of this from long distance. Obviously it is important to you to have a relationship with your dad.
I read about placing a camera in AL. Do you see a benefit to that? What does the caregiver do besides report back to you? Is it becoming harder for your dad to manage overall? He sounds fairly independent with little supervision while with you at his house or am I wrong in assuming that?
Is it that he is becoming confused at AL after being home for a week? Is the flip flopping getting to be too much emotionally for him? Is there a quiet area for you to get some work done at the AL? You can still be nearby and he may find comfort in that.
The routines don't seem to matter to my dad because he can't remember what happened 10 minutes ago.
The AL facility will not permit cameras in the facility; it's written in the lease. I'm not too worried about his treatment there because my aunt and two of his friends are there. This is a small town, and they all grew up together.
Still, the facility has changed ownership once since he's been there, and there was a lot of resident assistant staff turnover in the AL floor of the place. I've met everyone that works in the memory unit, and they have all been there for at least 3 years. I'm hoping he'll like the memory unit better since he's getting more attention.
Thanks for the reply. Best wishes to you and your Mom.
But your concern is not what is generally true, it is what will best support your individual father's quality of life. And you are at a tricky juncture when it comes to knowing what the answer is.
The main drawback is the constant switching. In a perfect world, a genie would pick up your father's house and relocate it to where you live - and staff it with a 24/7 care team, of course. His connections with it are going to be even more deeply embedded than most people's are, given that he built it. He isn't (yet) recalling home as where he grew up.
When you visit him and it's time to set off to the house, is he expecting it? If you didn't prompt him to get up and go, would he remind you?
You're right about it being a "tricky juncture". That's a good question about if he's expecting to leave when I arrive to pick him up at the AL facility. The last time, I handed him his coat and he asked where we were going...
Then, other times, the first thing he asks me is why he's not at his house, and when am I going to take him home?
Thanks for the reply.
If he doesn't cause any problems when he returns I can't see a problem.