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.
In-home care for a person living with Alzheimer's includes a wide range of services provided in the home rather than in a hospital or care facility. It can allow an individual living with Alzheimer's or another dementia to stay in their own home and can also be of great assistance to caregivers.
I can only strive to keep her in a safe and clean environment, I can not make her happy nor can I restore her emotional well being.
Please be sure to think about yourself and your needs. You need to build and enjoy your own life as well.
Other than that -- follow your heart and your good judgment.
Again, one size does not fit all, and as the decline becomes more evident, than you will make the arrangements of providing more care on a full time basis. Please research also of signs of the end of life to know the non-medical signs of knowing what to look for as your father comes to the end of his life. God bless you for being a caring and engaged daughter.
God bless you, you are an excellent daughter! Good luck!
I appreciate the advice about moving him closer to me, and that's probably in the future. Where he is now is his hometown; we have local family and life-long friends that come to visit him, and in his long-term memory, which still works pretty well. If I bring him to live with me, his social circle shrinks to only me. I hope he's still able to continue living where he's familiar for a while. However, I've been shopping for skilled nursing facilities near me, since I think that will be the next step, and I want to have a plan ready.
Dad's cognition hasn't declined that much in the past year; it's strange how this happens--he can still beat me at checkers, but he can't begin to play scrabble (used to be good at both). He knows every melody and lyric of obscure country songs from the 50's, but can't remember where he slept last night. He cleans the kitchen counters better than I do. This hasn't changed much in the past year.
I'm starting to worry more about him getting physically weaker. Over the last two years, he has fallen several times; he's always been able to get up by himself. That's why he said he didn't need Medic-alert. I tried to tell him he's been lucky that he hasn't broken a leg or hip. No sale. So, I went with a tech solution with sensors and text notifications (I still use the door alarms when we're at home).
Thanks again for your helpful responses.
I will support your beautiful efforts. You are giving him so much happiness that he deserves. God bless you dear. He probably loves being with you too. These days of his are prescious and to be cherished.
Maybe you can get help from the VA or Medicaid and get him a live in aide. Not so hard to manage from a distance. My friend had one for her mom and she was wonderful! If you can find one he could probably go home and he could wear a device that locates him if he should wander. Alzheimer’s association gives 24 hour counseling to care givers regardless of the type of dementia. Good luck!
My experience with memory care is that no matter what your concern is, they tell you it's the dementia. Like your dad, my mom remembers things and I Know she does.
Best of luck to both of you!!
COPPERTINO
lizzy
If its easier for you, and I know you want to see him, he is your only family from what I read, so move him closer to you. Who is going to argue?
Take his own furniture etc to the AL, make it as home like as possible. But it just upset my mother the few times she went back to her house after moving. Imo a clean break is easier in the long run
There is one phrase that you typed, and it is very important: “but I know that he’s safe”. As the POA (and fellow human being), that is job #1. Always keep that in mind, as you plan going forward.
If your dad does not have a problem with the way you are currently doing things, then I would say continue. Keep in mind that as your dad’s condition in the area of dementia continues to decline, you might consider ending this travel to home. I took my mom, who had advanced Alzheimer’s, home for a weekend. In her mind, she thought it was a permanent move. It was all I could do to get her back into the car and take her back to the nursing home. I was scary. I will never forget it. So, monitor your dad’s dementia and overall condition.
If there would be a physical problem at home, do you have a backup plan? For example, if your dad would fall, do you have several people you can call on to help lift him back up? These are simply things you need to plan for.
So, as for taking your dad away from the nursing home, I don’t see a problem, as long as you have planned carefully, since his mental and physical condition will continue to degrade.
I am also single with no children. What I found with my mom was that it was much easier to take her on vacations with me. Even when she had advanced Alzheimer’s, and was in what turned out to be that last six months of her life, I would take her on trips out of state (though only a couple of hours away, should there be a problem). Taking her back home would have been a problem, but going on a vacation or short trip is something she could grasp and somehow continued to know that she would not stay and would return home. Home, then, became the “apartment” at the nursing home.
I hope this somehow helps.
Blessings to you and your father.
May I ask your indulgence once more, I can not feature a MC that even allows this. It’s not just about your fathers return adjustment, they have state regulations and other residents to consider, which would be highly confusing to them. I’d bet his returns are going to be very different going forward. Maybe move him closer to you idk, but AL really didn’t have a chance of real adjustment.
Please have an open mind for this meeting.
And to the suggestion you move him in with you, oh Lord. Don’t jeapordize your income and work.
I believe the bottom line is that each case is different.
Perhaps it is finding the balance of "when" it is the right time to end the week home visits. Defining what those signs look like, and how to make the transition easier for him. For instance, bringing his favorite chair, some of his plants, and a few things he built himself so that his mind still finds familiarity.
Be sure to mention the differences with your Dad (he can tell you the address, etc), provide context for the Director and try to partner with her expertise and with your insight about your Dad's personal situation to come to the best solution.
I hope that the care conference goes well!
If your dad is private care, which I assume he is, then you will be ok with your plan. If he is on Medicaid assistance, it may not be possible to do that. I’ve heard there is a stipulation about leaving the facility for more than a day or so.
I personally, think moving forward, it will be hard to get your dad to go back to the facility. I hope it doesn’t get to that, but if it does, how will you handle that? They can be very stubborn and hard to handle as the disease progresses. (So sorry)
I pray for wisdom for you!!