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Mom's lived with with hubs and I since dad died here in hospice care here 5 months ago..I dread the transition back in 8 weeks because she's come so far since dad died and I don't know if I'll have the energy to reestablish her trust after 8 weeks of no routine and over stimulation in a cluttered house....Mom is telling me she's happy here but then tells sister she needs to get back to her house to "clean". I know I'm overthinking but I need help and thoughts on how to make the best of the situation.

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Maribeth,

I did homecare for many years. When a person has dementia and is taken out of their routine for any amount of time it causes setbacks. Taking someone to a different place and a whole new dialy routine will be terrible. Your mother will lose whatever level of independence she still has and it won't come back.

You say in your profile that your mom declined fast after your father died and she moved in with you. Her dementia is worse now so an eight-week stay somethere else away from you and the routine you worked so hard to get her into will be a disaster.

Funkygrandma has the best suggestion. Tell your sister to come to your house for eight weeks and you and your husband rent a beach house or something and get a break from your mother. Or even a nice AirBNB.

If your sister is insistant about taking mom for eight weeks, tell her that she will have to keep her permanently then because she will not be able to keep acclimating and transitioning to new places.
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MaribethD May 27, 2024
Thank you for this. Pretty much what I'm feeling but aware I'm emotional about the whole life changes! Just hoped for some perspective from others who've "been there, done that".
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I see that you have excellent, if opposing advice below.
You know more about Mom, sis, and this entire situation than we can gather from a few pages of history on your profile and in your note.
Therefore my advice is "it's up to you".

BUT, and most importantly, when a child becomes a caregiver it changes everything.
Suddenly you feel responsible not only for the care of an elder but for the happiness.
With being 91, incontinent, sleep disordered and suffering all the other age-related declines added onto the latest of having lost her husband?
There is going now to be NO HAPPINESS for mom. It is asking too much. Not only that but there have been in 91 years many instances where mom was unhappy that had NOTHING to do with any decision of yours.

Don't take on responsibility for happiness. This isn't a happy time in her life now.
Whatever adjustments she has to ANYTHING now is not going to be simple of easy, and what adjustment ever way?
What is important now is YOUR survival. And for me that means you are going to have to have some modicum of "a life".

I pass the ball back to your court. Don't expect any decision you make to result in perfection. Perfection isn't an option in all this.
Welcome and I wish you best luck.
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MaribethD May 27, 2024
Thank you . I'm just needing some perspective here from people who don't know me and thus might take my side because of loyalties. I just hope to be responsible in advocating for what I believe to be best for mom. It comes down to what is best for the "child", not me.
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Maribeth, you wrote: "Facility care will only happen if she becomes violent or health needs dictate."

Keep in mind that no matter how great your support system is today, it can disappear in the blink of an eye. It shouldn't be only mom's health needs that dictate. Yours are important too. A big part of that is mental health, so please be sure to look after yours. That means, sometimes, letting mom's needs be secondary.
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You and your brother have POA so you get to make decisions for mom based on what's best for HER, not on what your sister is "demanding". That's the whole purpose of having POA to begin with......preventing someone from putting mom in a situation that's dangerous or unmanageable for her. Which is what your sister is trying to do. She may be ignorant of dementia and what it looks like, thinking Oh Mom Will Love Being Back Home, Yay! In reality, mom will be disoriented, completely out of sorts, and run the risk of falling in a cluttered space. She's already feeling the need to "clean" the house, which is obviously a very bad idea.....so you can nix the whole hare brained scheme. If you think sister can manage mom in your home for awhile, and knows ANYTHING at all about dementia, then offer her your home to stay. But I wouldn't offer it for 8 weeks! Again, ANY change in routine is discombobulating for an elder with dementia. And guess who will have to fix the mess afterward? You.

Use your authority as POA, together with your brother if necessary, to present a united front that mom is not to go back to her home with sister for 8 weeks. What possible GOOD can come from it?

My condolences on the loss of your dad.

Good luck to you.
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BurntCaregiver May 27, 2024
@lealonnie

The only possible good that can come from the eight-week stay with the sister will not involve the mother at all.

It will do the OP good to get a break from being the 24/7 caregiver.

After reading Alva's response, it can honestly be said that at this point it's not about the mother's happiness because that part of her life is over.

The OP needs a respite break from caregiving for her mother and what would be the easiest way for her to get that respite break and what will least impact the mother's daily routine.

Having the sister come and take care of her in the OP's home is probably the best way.
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Your profile says that your mom has dementia, and I can tell you from experience that someone with dementia, does SO much better staying in their daily routine, than having it disrupted and having to get adjusted all over again.
Although it does sound like you and your husband really need a break from caring for your mom, so would it be possible for your sister to come stay at your house for the 8 weeks, with the first week you showing her first hand what moms routine looks like, so she can continue on with it while you and hubby get away for the next 7 weeks?
That way all involved would be happy...mom stays in her routine, sister gets to have full-time care of mom, and you and hubby would get a much needed break
It would be a win win for everyone!
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When someone with dementia says she wants to "go home" it is usually because they are Sundowning. The home they are referencing is some place deep in their past where they felt safe or had good memories, and not necessarily the home they most recently occupied.

My Aunt with advanced dementia sundowned and wanted to go home every afternoon like clockwork, even when she was sitting in the home she lived in since 1975.
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MaribethD May 27, 2024
Thank you for the explanation of Sundowning. Still new to the whole caregiver experience and am so grateful for this forum!
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Maribeth, if you are not handling everything well (not that you aren't doing a good job) and it is adversely effecting you and your husband, let sister take mom and you get a break. Most caregivers would be over the moon with an 8 week respite.

During your respite, please consider if keeping mom in your home is really working. You and husband matter too and she may need facility care, for all of your benefit.

Changing the care plan is in no way a failure on anyone's part, it is part and parcel when dementia is in play.

I am so sorry for your loss.

May The Lord lead, guide and direct you in the new season of life.

May HE give you grieving mercies and peace as you deal with all the loss and change your life has endured recently.
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MaribethD May 27, 2024
Thank you for your advice and even more for the prayers.y church family and Stephen Ministry have been amazing with their support and love.
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Me, I would say "YES" thank you, take her, gives me a break.

Any consideration being given to sell her home and use the funds to place her in AL where she can associate with people her own age?

My mother is 99, so your mother could live for a very long time, will your marriage withstand a third party in it every day and is that really how you want to spend the next years dealing with?
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MaribethD May 27, 2024
Selling the house is not really a consideration at this point I'm leaning now toward saying screw it, take her, if she slides dramatically then sis will have to belly up for facility care and work it out. At 91, it may be a moot point in 8 weeks anyhow (although the family history has multiple women who have lived 100 plus years....) 😀
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I think that you have already considered the disruption to your mum and the hassle that will give you. So, you clearly have your eyes open about the difficulties of care giving and the problems associated with dementia.

Against that, you have to weigh the respite that you and your husband would gain from not having to look after your mum for 8 weeks. Having a rest is not to be sneezed at!

If it works that is.

I'm not convinced that your sister is equally open eyed about the difficulties of care giving for a person with advanced dementia and associated complex needs. It is possible that a week or two in and your sister won't be able to cope any more.

It might be better to persuade your sister to stay in your home for 3 weeks - one week to teach her the routine (as previously suggested) and, perhaps, for you both to reconnect, yourselves. Then the next two weeks, you and your husband go on holiday and relax.

If that works, do it again. Getting help with your mum, even from a disorganised person, could really ease the pressure on you.

There is no advantage to your sister taking your mum back to her old home. It would be so unsettling for her. It could also be distressing - missing her husband, wondering where the children are who are now grown and taking care of her etc. So, keeping her there could be disastrous.

If you live near enough, a brief visit followed by lunch or a different activity that your mum would enjoy (to persuade her to leave without making it obvious that she won't be returning, plus to help distract her if she was upset by the experience) might be a better option. Otherwise, I wouldn't risk it, in your shoes.

Then sell the house! Your mum is never going to be well enough to live there again, sadly. Some truths just have to be faced.

I hope that whatever happens, it works out for all involved.
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You already know that if you go along with your sister’s ideas, you will be in the position of basically deprogramming your mom when she returns. If you are even able to.

Why place your mother in a vulnerable place? It will only confuse her.

Please don’t consider pleasing your sister. Your mom’s needs and your sanity comes before your sister’s desires.

You have had your mom living with you. You know her situation best. Your sister is not familiar with your mother’s condition. If she understood the situation, she wouldn’t rock the boat.

Tell your sister that her ideas aren’t in the best interests of your mom. If she wants to debate the matter, just tell her that you have already decided against it.

I am very sorry for the loss of your dad. I read in your profile that you haven’t been able to grieve because you have been caring for your mom.

Please take breaks when necessary. Ask your sister to help, by coming to your house to assist with your mother.

Do whatever is best for you now. Your sister will have to adjust accordingly.

Wishing you peace as you continue on your caregiving journey.
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Anxietynacy May 27, 2024
I had a GMA that went to visit her grand kids for a week. Very loud rambunctious group,

Came back , just was never the same, probably a tia, she had a stroke like 6 months later
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