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my sister has primary caregiving responsibilities for my Mom. She put Mom into a nursing home about 3 years ago. Mom was living with me when she was in the early stages of Alzheimer’s, but decided after a couple of years that she wanted to go back home (I live 6 hours away). My mom leans on my sister exclusively and calls her all the time - she will not call me. My sister does not like to go to the nursing home and most of the time will send others. She retired in late 2023 with the plan that it would give her more time to go see mom. But it can be many weeks between physical visits - she lives 20 minutes away. I go see Mom monthly and call her 3-4 times a week. A few months back, my sister had a health scare and said she had to pull back from caring for Mom - so I hired a caregiver to go into the nursing home a couple of days a week - that’s still in place. My sister is the poc for the nursing home. My sister seems to be experiencing compassion fatigue- she just doesn’t want to be bothered with Mom’s care. And I am resentful. Even though Mom does not live with her - and she doesn’t work - she seem to be overwhelmed and does not wants to go spend time with her. Mom is in the middle stage of dementia and is scared - and my sister can be short with her. I see that the nursing home is the safest place for Mom - but it drives me crazy to have her there. What can I do long distance to help my sister and how can I help protect and care for my Mom given my sister’s disinterest? This is ruining my relationship with my sister. I feel she has the time and Mom depends on her. I have considered bringing Mom back to live with me or renting a place there so I can physically be there more. But I’d have to turn my life upside down and sstill probably couldn’t afford it. We have been told moving her will only confuse her more. And her needs have changed so much. Any recommendations?

Take moving mom back to your home off the table. Her dementia has progressed and will continue to do so, the living arrangement of before won’t be anything like that now. Have an honest, non accusatory talk with your sister. Kindly ask about her burnout and fatigue. Suggest moving mom to a nursing home close to you and see if that’s a viable plan. I wouldn’t worry so much about a move confusing her, as her whole world has sadly become confusing. She’d be better off with one nearby relative who wants to be involved than one nearby who’s exhausted and burned out
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Reply to Daughterof1930
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Moom63 Jan 15, 2025
thanks for the response! I like the idea of trying to move her into a nursing home closer to me. Very helpful and action-oriented response
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I’m sorry but I feel the need to give you my opinion which is you are in the wrong here in terms of your relationship with your sister. You have no right to decide how your sister spends her time.
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Moom63 Jan 15, 2025
Thank you for your feedback. You don’t have all the info. It was a commitment she made. When a commitment is made - I think I have a right to expect that she will live up to it. She is paid - not much - but we do have a personal care agreement signed and in place.
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Give your sister a break and time to come back to herself. Just bc someone is retired doesn't mean they have to be on call. I'm retired. I'm exhausted mentally and my parents don't even live with me. If I had health scare on top of that? Your Mom is safe and cared for and has an extra caregiver. You say your sister "put" your mother in a nursing home. I wonder how bad it got before she had to make that heartwrenching decision.

I'm with your sister on this one. She probably has caregiver ptsd. Give her space. If she feels up to seeing mom she will, if she doesn't that's her choice for what is best for her right now since your mom has care. She is where she needs to be.

If she has compassion fatigue that's understandable and I think the best thing you can do right now is have compassion for her. She has a right to have a life that doesn't revolve around caring for someone who already has care.
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Beethoven13 Jan 15, 2025
Yes, to all of this. Its exhausting mentally and physically. Even if you have paid help. Leave your sister alone and let her live her life and recover. If you want to step in and start being the primary contact, that would be great. Maybe you can alternate every 3 months. So you each have 3 months of Freedom.
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You have no right to decide how your sister should feel or how she should be spending her time! Burn out is real, and so is compassion fatigue and health scares. And going to visit an elder with dementia in a SNF all the time takes more out of a person than you can imagine. Mid stage dementia is a whole different ballgame than early dementia, i can tell you that from experience. Going to see my mother exhausted me and stressed me out like nothing else on earth.

Stop judging your exhausted, overwhelmed sister and be grateful she's stepped up to do anything, ever. That's my suggestion. So many siblings stay 100% out of the caregiving picture 100% of the time. She sounds in need of compassion herself right now, tbh.

What you can do to help your sister is either move mother into your home or into a SNF closer to where you live.

Good luck to you.
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Bulldog54321 Jan 15, 2025
Exactly. For instance, I had a nervous breakdown after caregiving. I lost myself.

Obviously their care contract is null and void; her sister has the right to terminate their contract.

OP is very rigid which I don’t understand. The very clear answer is to move mom back by OP so OP can give mom the attention OP feels mom deserves.

And you are very right about how the stages are different. Sister sounds mentally exhausted and depressed and sister has the right to not go see her mom if she can’t handle it.

All OP is doing with her judgements of her sister is adding to her sister’s stress. If OP can do it better, then OP needs to step up and do that. Problem solved.
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I agree that with Daughterof1930. You can move your mother to a nursing home near you and become the point of contact. This will give your sister an opportunity to deal with her health issue, recuperate from her burnout, and address what might be clinical depression; and you'll be able get peace of mind by taking care of the issues that you feel your sister might be neglecting. Yes, the nursing home will tell you it will confuse your mother but they all say that; it will be temporary and with your help she can get settled in.
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You "preserve" your relationship with your sister by acknowledging that you both have done the best you could with your mom, and that you both have a life outside of caring for your mom and that your mom is now receiving the 24/7 care she requires.
You both have paid your dues and now it's time for you and your sister to live and enjoy your lives to the best of your ability, and if that means that you sister doesn't go on regular basis to see your mom....well so be it.
If you feel that someone needs to be visiting your mom more often then perhaps you should go more often or rent a small apartment or Airbnb near her so you can spend more time with her.
But don't try guilting your sister into doing something that she's just not prepared to do, as she has more important things on her plate right now, namely her health. That will only widen the rift.
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Reply to funkygrandma59
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Beethoven13 Jan 15, 2025
Yes.
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You could hire private aides (sitters) from a home health care agency such as Visiting Angels to visit your mom in the facility and provide companionship. I see this quite often at husband's memory care. The resident grows accustomed to having a "friend" visit, and they are less lonely. The aide can be the same one twice a week or once a week or whenever, which lends continuity to the visits. Don't move mom in with you. If you do that, you will find out soon enough why sis can't keep it up. Demented parents are not the best of company. It's hard work even being in the same room with them sometimes.
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Moom63 Jan 15, 2025
Thank you - we do have a person coming twice a week - Mom loves her. Will keep that going for sure. Thanks for suggesting and validating as an effective strategy
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There really is no good answer to aging and esp. aging with dementia. Not everything can be fixed. You and your sister aren't responsible for care and for making things all better. If mom is in care then her house and her care and meals are addressed. Few people even HAVE family nearby to go over a whole lot to visit.

You can make decisions for what YOU do, but really cannot make decisions for your Sister. She will speak with you about her choices, and it really is up to you to support those choices. Your mother is in care. She will not be happy about that. Old age is grief and loss. But neither can you MAKE her happy with constant coming at her beck and call.
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Moom63 Jan 15, 2025
I think you may be on to something that I need to sit with - not everything can be fixed - that is powerful. Thank you for that insight
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Maybe you could offer your sister a break for a week or two. let her take off on a vacation somewhere and get away from the stress. Perhaps you can stay in her house while she's gone.

We have a daughter that comes in once or twice a year for a week or two while I take off and go skiing or whatever. My next break may be to Branson, Missouri. That's a wonderful relief that helps keep me sane.
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Reply to jwellsy
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Let the situation be what it will be . Your sister is burnt out . Visit when you can But I wouldn't Move her .
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Reply to KNance72
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Your mother is being cared for. Your sister is done. Visit as often as you can but don't expect that your sister is going to change. If you want to be more of a presence in your mother's life, then relocate back. But do not expect your sister to step up.

I am where your sister is now. I live in California and rent an apartment in NYC so that I can be near my 96 y/o father (who is in a LTC facility) for big chunks of time. He has mild dementia and a plethora of health issues that don't seem to be life threatening. I was hoping that my father will have passed by the time my lease is up on July 31st. It does not appear that it will happen the way I hope.

After 5 years of traveling cross country for caregiving, I am done. I have no intention of renewing my lease and will be drastically cutting down my visits to a week or so every three months. I can't afford it anymore and I am tired of living out of a suitcase. I don't feel much compassion anymore. I didn't realize when I started this routine in 2020 that this slog would go on as long as it has.
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Reply to Hothouseflower
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Yes, please move your mother in with you or to a nursing home closer to you. Then you will get a clue about how much it takes to care for your mom. You "feel she (sister) has time and mom depends on her". Give me a break. I'm the sole caregiver for a sister who has been in MC for 2 years now. And I cared for her the years prior when she should have been in MC. I'm also retired. I have hired visiting angels to visit her in MC to help myself. My 3 brothers are not interested in helping at all, never visit, but I tell you, if one of them talked to me like you talked in your question about your sister, I'd tell them to take over the caregiving, and I'll get my life back, and thank you! Wow, just wow. Please take over the caregiving since you think you can do it better. And be grateful to your sister for all she has done. Your sister has her own life to live.
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Reply to roadtrip54
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Your sister is burned out .
You need to accept that . Your sister is not choosing to do less . She literally can’t do what she was doing before . Many of us make commitments regarding caregiving that we end up breaking due to burn out .

If you were in your sister’s shoes you very well could be burned out . I think you need to give your sister grace . She’s doing the best she can right now . Watching a LO’s decline can be harder for some than others . The far away relatives also tend to be critical of those with boots on the ground . Swooping in with advice . The close by person has more stress than the far away person who gets to live their life more removed from it .

Either move Mom to a nursing home near you , or accept the situation as it is. You can’t force your sister to visit .
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Reply to waytomisery
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Some of these answers are so ugly and harsh and I apologize for how people are responding on here! Caregiving is extremely difficult especially dementia. Dementia is hard to watch happen to anyone, let alone your own loved one. Try giving your sister some grace because it is hard and I am sure she is honestly trying her best while also looking out for her own mental health even though it may not look that way in your perspective. You may see if you can visit for a week or two and give your sister a short vacation or at least some rest to release some stress while giving yourself much need time with your LO. You can make sure your LO is happy and content where she is or if you have any concerns, you will be there to ask the facility any questions. If your mom is lucid enough, you can even ask her if she is happy. My papa has late stage dementia and it is rough. We do in-home hospice care and we have nurses that come in 3 times a week to aid in bathing, etc. but it is definitely not for the weak. It takes a huge mental toll just watching what is happening to him and not being able to fix it. It takes an endless amount of patience and there will be moments where you feel so overwhelmed with all different emotions and it is a lot to take in. I love my papa so much and I am so happy that we are able to care for him in the home as he has taken care of us, but it is extremely difficult and is important to know just how hard it is before making a final decision on your mom. My advice would be to really think out all of the options, do your research, give your sister a much needed break and then have a sit down to discuss with her on next steps of what yall need to do to make sure mom is getting the very best care she needs plus if your mom is able then just ask her. I wish I had asked my papa about all of his wants while he was able to still somewhat communicate. Hope this helps ❤️
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Reply to BeKind3
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Thanks everyone for your feedback! You have given me a lot to think about, I am grateful for your insights. I know I have to remove my sister from the caregiver role to give her the rest she needs. There is no way around that. I will address that directly now that I know what it is. Since my mother is in a nursing home, she is cared for 24x7, that is a real blessing, and while I may not like the conditions, she is safer in a nursing home than in my home or her own home. I also learned it’s ok to move her. At this stage - she is going to be confused wherever she is - I always felt that at some point this would be true - but the professionals have always said otherwise. I also learned that there are some things about this situation that can’t be fixed. I have to acknowledge this hard, cold fact as I concoct all types of plans to rescue her. To those who are in primary care roles with loved one’s who have dementia and my story triggered you - I say - I hear your pain. But please let us know how to partner with you - don’t assume we will not do the work, sometimes we genuinely don’t know what to do or even how you really feel. Thank you all and God Bless!
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