Questioning the advisability of moving mom with Alzheimer's back and forth between home & sister's place.
My adult daughter and I live with my Mom (85) who was diagnosed with Alzheimer's a year ago. Within the past month it has become clear that Mom is no longer safe at home alone (hard of hearing, not remembering to eat meals but also snacking all the time, not staying hydrated, confused about what can safely go in toaster oven or microwave, and no longer able to manage her meds on her own ...) Mom has a medical alert pendant but takes it off and probably wouldn't know what to do if an emergency arose, anyway.
I had thought that when the time came for Mom to need assistance or caregiving outside what I am able to provide, outside help would be the solution so Mom can stay at home. She has always expressed that is what she wants. Mom stayed with my sister while my daughter and I went on vacation last month. My sister and her husband live 1 hour away and are planning to eventually take Mom in full-time (they are preparing space for her now). They are self-employed and believe they can handle most of the caregiving (sister was formerly a nursing assistant in a nursing home decades ago, and recently retired from her massage therapy practice, so she will be good with the healthcare aspects of long-term care).
Meanwhile, and for the long term, my sister believes that shared caregiving -- moving Mom back and forth between what my Mom considers "home" and my sister's home -- is the best caregiving option. Mom has isolated herself socially since well before her diagnosis, and a nursing home or other outside residential caregiving situation would be torture for her at this point. Mom also doesn't think she needs someone around her 24/7, or starts ranting about being ready to be put in a home if that's the case. (Maybe because she tried to care for my stepfather who also had Alzheimer's, she knows both sides of the coin here.)
I work full time and for the past month have been able to manage working from home on the days my daughter is working, only leaving mom alone for less than an hour on very rare occasions to run a quick errand. That has been a good short-term solution. I'm looking into in-home care to help when neither of us can be there. I don't believe my sister is willing to come spend time with mom during the weekdays. She took Mom to visit with her for 3 nights last week to try and get her used to the idea of staying with her, but until they have space ready for mom to call her own up there, it's not a good place for her to be (she has to sleep on a spare bed in living room, no lifted toilet seat, inaccessible clawfoot tub, disruption from pets during the night . . . ) Right now my sister's home is a construction zone and she does realize it's not pleasant for my Mom to be staying there at this time.
However, I see how disruptive it is for Mom to come and go during these short stays, and it breaks my heart to put her through that. When she came home last weekend she said she never has to go back there (my sister's).
On the other hand, my sister tells me that for years my Mom has told her she doesn't want to live in her current home (too big) and that Mom has issues with me and my daughter. It's difficult to tell what is the disease talking and what is family dysfunction at this point. At any rate, I think that until my sister is ready to take mom in 100% of the time, Mom should stay here except for short visits - maybe day visits to familiarize herself with my sister's place. My sister thinks that having Mom with her during my workweek and here at "home" on weekends is a feasible "shared caregiving" solution. I have serious reservations about that -- I believe it would just be too hard on Mom. It would be hard on all of us, quite honestly -- but my sister doesn't or won't see that aspect of it.
Routine and consistency seem to be key points to maintaining a level of security and balance for Alzheimer's patients. I suppose that once Mom's cognition declines to the point where she doesn't know where she is, it won't matter where she is. But in the meantime, I question whether this proposed "shared caregiving" is really a good thing.
Let us look on the bright side. Sister is offering to share the load. Her suggested way of doing that is not going to work, but she doesn't want to be thought to be shirking. She also doesn't want you turning around in future and saying "well you never lifted a finger while I had mother so I'm not doing anything now." Note: I am not suggesting you would ever do such a thing, I'm just pointing out the sort of anxiety that can take over people's thinking.
She doesn't want you taking over.
She probably does remember mother griping about things, and being generally anxious and miserable - I expect you are too - about mother's decline she's upset and worried about *everything.* As you too must be. I'm just sorry that sister's remarks got too near the knuckle - I expect it's true that mother said these things, but also that she was either talking for effect or talking plain nonsense. And to be honest, what she's said for many years is all very well, but you three are coping with the situation *from now*. All previous bets are off.
But You Are Right. The disruption would be hopeless, from your mother's point of view. Much better for her to sit tight until such time as she can be permanently moved.
What about going off at a slight tangent in discussions and suggesting a shared care plan not just for now, but further into the future. What about respite breaks? What about communication channels? Show that you're expecting to be supportive once sister has taken over, and you may find that some of her anxieties are relieved.
@ Countrymouse -- I do appreciate my sister wanting to "share" in the care but it seems it is only on her terms. When Mom says she does or doesn't want something, my sister doesn't honor that. I sincerely believe that in spite of her mental state, Mom does have the right for her wishes to be considered as long as what she wants isn't harmful to herself or another.
I appreciate having this forum to get input from others who've walked this same path -- thanks again!
I'm not sure why it would be hard on all of you for your sister to have the care of your mom on the days you are working. I can see that it might be disorienting for your mom, but how does it make it hard for YOU? It seems like that would be a win/win as far as you go....for you mom maybe not so much.
I know that for my own mom, she could talk a mean story all day long about the absent sibling.... just to have her give the same mean story to THEM about ME. She played us all against each other. Disease? Probably, Maybe, We'll never know. So how can you really know what she wants? Because she told you so? Hmmm. Does she also tell you she took her meds when you know darn well she didn't? How about does she tell you that she doesn't need to go to the bathroom, when you know she hasn't gone all morning? Food for thought....
Perhaps you CAN do the shared caregiving before your sister gets her house set up for you mom. Maybe you can just do it as if it were a super fantastic adult day care situation where you would be willing to drive an hour to drop her off in the morning. And maybe your sister could bring her home after dinner....or make a stop for dinner part of the drive home?
Would it kill anyone to try? It might make your mom unhappy. It might not. It probably WILL be disorienting for your mom, but then so is a trip to the doctor or the store. It probably will spread goodwill to your sister, if that's worth anything to you. It will probably help your sister see that it's not all wine and roses for you with mom. Maybe sis is feeling left out and wants to have time with mom before "Mom's cognition declines to the point where she doesn't know where she is".
I don't know your family but I know that in my family I'm trying really hard to get over the resentment I feel towards my siblings because even though I was the best and most available person to take care of my mom, they had to "let her decide". Let the person who's brain is broken make decisions on where to live. So she picked the place she knew she could do whatever she wanted. Never mind that my SIL is bipolar and not taking all her meds all the time and has drug dealing friends/neighbors. So 3 years later she is violent with them and they have her taken by ambulance, strapped down, to the hospital and a psych hospital. THEN ALL OF A SUDDEN, WHAT SHE WANTS ISN'T SO IMPORTANT ANYMORE.
Unfortunately for all of us, we live 12 hours apart. If we had lived only an hour apart, we could have worked something out along the lines of what you and your sister are talking about. I would have LOVED that. But by the time I got to have time with mom, she is totally out of it, just gone. Time traveling and asking me every night if I'm working tomorrow (I guess I'm her nurse?). My brother and SIL had her and didn't appreciate what they had and never bothered to learn how to talk with her and ultimately caused her to become agitated and physically violent.
I guess what I'm trying to say is by all means, consider your mom and what would be best for her in your decision making. Just don't forget all the others in the equation and what would be best for them. It might not make me popular here, but I don't think that any life is worth more than another. Also, if you want something to happen, you can make it happen. And if you want it to fail, you can be certain that it will fail! You CAN mitigate the effects on your mom if you try. It might not be the best solution for HER, but it might be the best solution for ALL OF YOU. Ultimately, you might find that after a few meltdowns on the ride home from sis' house, or AT sis' house, she might be happy to leave mom to you until she can keep her at her house permanently.
The first Friday Sis and BIL dropped Mom off at my house she was very anxious. She had delusions. She was so confused that I was glad I had experience with dementia care or I would have freaked out. By Saturday things seemed pretty normal. She wasn't anxious and we went on a little outing to a plant nursery. When I drove her back Sunday evening (1 hour trip) she was just a little anxious about whether she was going "home" or to Sis. This arrangement went on for 14 months. It probably wasn't ideal for Mom, but it didn't seem harmful either. And Sis absolutely needed the respite! So this was the best arrangement we could make for everybody.
Then Mom's dementia and mobility problems progressed to the point where she could not get optimal care in a private home. We placed her in a nursing home close to the other two sisters. Sis was devastated. She knew she couldn't continue but she had all the usual guilt and what-if feelings. It took her a few months to get past that. Mom had a rough adjustment to the NH but when it finally clicked, she was content there. She absolutely blossomed! She went to all the activities, loved the food, loved having her hair done right on the premises. I think the transition between her apartment and NH was good for her, but I don't think staying longer at Sis's house would have been good.
Some observations.
1. Each situation is different. Jody is certainly correct that it depends on the caregivers as well as the care receiver whether shared caregiving can work.
2. Dementia gets worse. Always. Even though they are building on to their house, the time may come when Mom will be better cared for in a nursing home. This should be acknowledged from the beginning.
3. Visiting at your sister's "construction zone" is not preparing Mom for living there in the eventual setting. In fact it introduces another transition. Things will be improved but they will be different. "Different" can be really hard on many (but not all) persons with dementia. She is used to her own house with you. She is getting used to the construction zone with your sister. Then she is going to have to get used to her new digs. Depending on whether your mom is disturbed by "new" things, perhaps you and your sister could consider removing that middle transition, so Mom goes directly from her house to her new home.
If she can't handle living in 2 homes, then no, you can't do it.