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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.

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I'm sure their recommendations come from experience with most MC patients and I'm sure for most they are absolutely right. However it sure doesn't sound like the transitions are hard on your dad or you and the 3 weeks in and one week home are working really well for both of you still. I am so impressed and touched by your pattern and can hear how much it means to you as well as Dad to be together in that house so my vote is keep doing what you are doing. He is obviously the exception when it comes to transitions/moves and if you need back up they should talk to the staff in his AL wing since they can confirm it is good for him and not a cause of issues. You are so in tune with your dads needs as well as your own and you will know if and when this isn't a good program anymore. Maybe he doesn't wander at home with you because he is so happy and his mind doesn't have the need to search for anything or anyone else. If this becomes less enjoyable and problematic for you don't feel any guilt about deciding that's the time to stop either, I really believe what works so well here is how happy it seems to make both of you. Keep following your instincts!
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If you can continue to spend the time, and this makes your dad happy, do it. Sounds like this makes you happy too. These will be the last few moments you get to spend with your dad. At 91, tomorrow is promised to no one. After he's left to be with his wife, trust me, you will be happy you did. These last few remaining days or months will be fresh in your mind and YOU will remember how happy you made him.
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Oh Hi Linkabit!
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.
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Linkabit14 Mar 22, 2019
Thanks 97yom... I feel bad that I don't contribute much here; the consulting business keeps me busy pretty much full time. The support that reading this forum provides is wonderful.
Thanks again.
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What the memory care unit director is telling you is sound advice as far as it goes. It generally holds true for people with advancing dementia that they do better with a structured routine in an unvarying environment. It helps to minimise their disorientation in time and place.

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?
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Linkabit14 Mar 21, 2019
Hi CM,
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.
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You’re amazing! What a great job you’ve done looking out for your dad! He’s truly blessed to have you. Unless and until these visits either become too hard for him or you, keep doing what your doing. You’ve found a balance that works, so hard for so many, congrats on it!
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You are my hero. The love and adoration you have for your Dad comes through every word of your post. Know that whatever you decide, based on all the information you have, is the right decision. I am preparing to place my husband of 39 years in a Memory Care community (the word facility just sounds wrong). I'm not sure what is more stressful--caring for him alone at home, or the idea of leaving him in a strange environment being cared for by strangers, initially. There just are no easy answers, solutions or alternatives.

Blessings to you and your father.
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Invisible Mar 24, 2019
I, too, didn't want to leave Dad to the care of strangers, so I got immersed in his memory care community to know who the other residents were, their families, and the aids. You end up caring about them and they care about you.
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You're doing an amazing job. I'd say that as long as you can give your dad these one-week visits, do it. It may be harder on the nursing team when he returns, but it's all about him at this point, not their convenience.
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Having been through this as well, I would say follow your instinct and also do what gives you the most time with your dad. It is difficult (or it was for me) to spend a ton of quality time with my mom at her AL. It sounds like for a week out of every month that you and your dad are happily enjoying eachother. That is such a treasure. Believe me, in the end you will not beat yourself up for the little things, but you might beat yourself up for the time you did not spend. I think what you are doing sounds beautiful. it doesnt matter if he forgets it 10 minutes later. The only regrets I have from my time as my moms caregiver are the times I could have stayed longer and didnt, and the times I felt resentful because I was stuck with such a burden. When they are gone the love you shared truly is all that matters.
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Ok.... I'll try not to be too negative here...you're doing a great job it sounds like managing a difficult situation...I'm a nurse of 30 years have worked in long-term care. Am a mental health therapist and lost my mom two years ago and she was in a dementia unit. if I were in your situation I would encourage the staff to be part of the solution rather than part of the problem. By this I mean what if they start talking to your dad the day before and help him anticipate making the change. What if you leave a photo album in his room that shows his house. He and you in it doing activities... and they talk to him about it and show him pictures from time to time? I made a box for my mom and had memories from her earlier life on small pieces of paper and they would read these and talked to her at times. She enjoyed it... And they got some ideas about who she was when she was younger... Maybe the activities department would have more ideas... Hope this is helpful...
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I'm going to answer this first and then review the other answers. Just buried my father and if I could have given him what you are giving your father, I would have. Moved my father (also at 91) directly into Memory Care from his independent living apartment of 14 years. He did not want to move but he was having falls and with the last one he could not call for help on the medical alert button, so laid there until I found him the next morning. We moved all his stuff into Memory Care while he was in rehab and went directly there. 2 weeks later, I drove him past his old apartment building and he didn't know it. Never completely bought off on the idea that memory care was his new home. Thought it was another transitional place and "home" was probably where he grew up. But he did miss family life and wanted someone to stay with him. This is the part you are able to give to your dad that I didn't. There was no way he could live with me; I couldn't lift him if he fell and could not be there 24/7, nor is my house easy for someone in a wheelchair to navigate. But being caged all day in memory care with nothing to do isn't a great quality of life. Your dad is stimulated by return to family surroundings if only just to putz about with the reassurance you are there. If you can do and want to, it is a real gift to him. But it is also a lot of work for you and his house sits empty 3/4 of the time. I wanted my Dad to have a sense of community after living alone so many years and I think he did eventually adapt to it. They should have activities, be flexible to his needs, be trained in dementia behavior (including hallucinations) and you can help foster that community for him. You might start calling that special week "vacation" and transitioning him over to full-time memory care.
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lizzy1952 Mar 24, 2019
so sorry for your loss of your dad. I too, went thru it with dad and mom three weeks later. I will keep you in my prayers.
lizzy
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