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What should I tell her, as I need help to prevent my burn out and frustration?

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Denny,
There is much lived experience in the replies you received.

I think the main points are;
1. Be specific when asking for help from your sister.
2. Accept what she can give.
3. If she says "No" accept this too. Let it go.

The above is more communication advice.. I realise it does not actually solve your problem:
Bridging the gap between what help you HAVE & what help you NEED.

That is why turning to look for that help in other places is next. Look at what you need.
Look at options to find it.

I remember feeling resentment for quite a while... But I came to the conclusion that respecting a sibling's "No" was the respectful thing to do. Since then, my own "No" has been respected by others in the family - which is a graceful blessing.

I no longer hold any resentment. I hold gratitude that with clearer communication we can all have a say & be heard.

I wish you the best speaking up 🤗
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Davenport Aug 2022
I was specific with my request — simply more moral/emotional support, which had been zero. I experienced #3 with both sisters. I stayed for another year +, and gave both my 30 day notice that I was moving out of state. It’s been 4 years now. NOW they get it. It’s hard for me to feel much sympathy for them. May the Lord forgive me.
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maybe your sister can hire at-home care for Mom for those hours you wish she’d help. Mom gets no choice.
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Davenport Aug 2022
In my case, my sisters wouldn’t pay for any respite for me. And I was told to not make any plans to go anywhere without checking with both of them first, to make sure THEIR calendars were available. In both cases, that was rare.
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Denny1534: Perhaps you will have to more specific with your sister. Inform her of what days/hours/months during which time you require help and the exact duty to perform. Vagueness is more easily declined by your sibling, but if you say, i.e. 'I need your help every Tuesday for 6 hours to make mother lunch and diner,' you could have more success.
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My sister will throw money at ANYTHING and for ANY AMOUNT--but she WILL NOT do hands on caregiving.

At first, I thought she was being kind of mean, but all she was doing was looking at the situation with mother and realizing she is NOT a natural CG and wasn't interested in trying. When mother chose a really nasty rehab facility for her after-hip replacement, and she realized it was, in fact, the rat hole I told her it was--she threw a fit. Blamed ME (I was not at fault in any way shape or form for her bad decision.) She told me to GET OUT and not come back. So I did.

I called OS and she scouted out a much nicer place, negotiated a good rate (8 weeks there) and handed over her Platinum Amex for the difference between the rat hole and the lovely convalescent center. Mother was moved within 4 hrs. And OS never even SAW her. Let her go by ambulance to the new facility.

I have never asked OS to do anything for mother. It's absolutely pointless.

No matter how much she is asked, she will not do hands on. Again--willing to pony up any amount of money to solve whatever problem, but will not do a single hands on anything.

There's no point in doing any kind of guilt-tripping or begging to get family involved who do not want to be. It's just life.
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Lmkcbz Aug 2022
this Is a blessing too, though. This stuff is insanely expensive. My parents have enough to cover 7-10 years. Knowing they could outlive their money and paying for all the things you pay for when caregiving is rough. And to people without money? This would be such a weight off. The money part is Super stressful to me.
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You can't force someone to do something they don't want to do, you can only change your situation. Do you have other options to prevent your own burn out? Can you get paid care or qualify for Medicaid and find a facility for her? There are always solutions, you just need to decide what that solution should be. If your sister isn't helping, than the decision is yours and you need to do what is best for your physical and mental health.
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Please call Adult Protective Services to request a welfare check with the intent to place her in an appropriate setting because there is no one available 24/7. Find out if she qualifies for Medicaid.

Obviously, Mom didn't plan for end-of life issues; this should educate you and your sister that you need to take care of your plans and not end up being a burden to your loved ones. There are many lessons on this forum, and this is one of the most important.
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I hate to say it, but don't count on your sister to step up if she hasn't already done so. You may have to find ways to get caregiver help without her. Connect with a local social worker to discuss her and your options. Much will depend on her finances. Is your sister willing and able to contribute money to hire caregivers, if she doesn't want to do it herself? Get your mother on Medicaid if she has a low income and ask for any caregiving help that is available. At the very least, there are programs that pay family caregivers. That might help, as it will give you more resources. Have a Plan B, in case her care gets to be too much for you. Your basic options are getting in-home care, or moving her to an assisted living/skilled nursing facility. All the best to you, and be proud of yourself that you are the responsible and caring one for your mother. Don't feel guilty if you have to place her in a facility. If it comes to that, try to find something close so that you can visit often and be active in overseeing her care.
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My dad became sick at age 90. My mother, who was his wife of 70 years, wouldn’t help with anything, and it was within her capacity to do many useful things, such as go with her paid companion to shop or run errands. I asked Dad’s sister, my aunt, to help by staying with him for one night with his 24/7 caregiver present. She was too busy running around to her civic meetings and lunch with friends. She complained constantly about how he was being cared for and refused to believe he had dementia. These two people who should have stepped up to do something, anything, let me down and weren’t nice about it either. They didn’t help because they knew I would do everything necessary. But what if I hadn’t? What if you didn’t? We don’t know until we try it. PS. The truth is that people like your sister and my mother and aunt don’t care. They really really don’t.
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I am sorry this is happening and can relate. I had a sit down with my sister (lives 2 hours away) who refuses to help, discussed with her how she sees her roles and responsibilities as a sister and daughter, basically she doesn't have any and doesn't see herself as a caregiver, really what she was saying was- she doesn't care.
I got her commitment to call me every week for an update and to come to mom's once every two-three weeks, stay overnight and learn the routine. She thinks she is doing her part by phoning my mom, who struggles now to communicate, every day. The "talk" was 2 months ago, mom continues to decline and NOTHING has changed.
It has only made me more resentful and more frustrated. I realized I had to let it go as I am the only one fretting over it.
I wish it were different but I see it as her loss. Hate to say it but when my mom passes that will mark the end of my relationship? with my sister. Hope you have a different outcome. Prayers to you.
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Davenport Aug 2022
I was and am in your situation, Jean Marie, with the same outcome. I struggle with resentment and bad feelings, but I’m making progress …
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I belong to more than one of these support groups. Among the members, it is actually pretty rare for most caregivers to have help from their siblings. Almost all of the caregivers do this job alone.

You can ask your sister to help, but it probably won't happen. Most caregivers are burned out and frustrated. That's just the way it is.
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Denny1534, when I first came upon this forum I learned that seniors should not be caregivers for older seniors. We do not have the same energy level that we had back when 25, 35 or even 45 years old. And that 40% of grown family members who were full time caregivers usually died leaving behind that parent they were caring. Those are not good odds.

Not everyone is cut out to be a caregiver. Believe me, I was no Florence Nightingale, Dr. Joyce Brothers, nor Hazel. Plus I was in a career that I fought hard to keep in an era where women were expected to stay home and have babies. When my Dad asked for me to quit work, I asked him if he had quit work to care for his parents. He never asked me again.

I didn't have siblings, my roadblock was my Mom when it came to getting help for her and Dad when they were in their 90's. Mom refused caregivers, refused to downsize into something more user friendly [no stairs], etc. My sig-other and I did what we could until nature took it out of our hands.

It is time for you to stand back and take a look at the whole picture. I remember how happy my Dad was to move to senior living, to be around people of his generation, hearing music and seeing movies of that era. My Mom had already passed and how he wished she wasn't so stubborn. He saved for that rainy day, and it was now pouring.
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I think that you can plead with her for her help, but I would also tell you that you must understand you have made your choice and she has made her choice for herself. You cannot change others.
If you have specific things she can help you with, do ask her. Say groceries. A few hours to spell you. Help with shopping or taking Mom places. Have a heart to heart. Preface your plea with telling your Sister that YOU know that YOU are responsible for taking on the care for Mom, but that you are failing under it and may soon have to put Mom in placement if you cannot get help. Ask if she is able to help you on a regular schedule, and if so, with what is she willing to help. If she cannot help you ask if she is able to contribute to help for you that you may hire in.
I would say the chances are slim that this help will be forthcoming, or it would already have been on offer. Your sister sees and knows what you are going through. So it may be time to consider placement for your Mom lest you spend decades of your life on a sacrificial altar, giving up your own life.
My very best out to you and I am so sorry.
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Offer her a choice between hands-on help or financial help to hire an aide or financial help in facility placement if your mother's care becomes too much for you.

Does your mother have assets that you are using toward her care and to help maintain the household?

If your sister simply won't step up, make whatever arrangements you would have to make if you did not have a sister.
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If your truly asking for just visits, than just plainly ask her . Don’t get upset with her answer. Maybe she can help. You cannot plan her life. As this is a long term commitment.

This is generally the issue when you take on caregiving. You need to respect her answer.

when my in laws were not able to be home alone , my SIL tried to plan my retirement. Meaning my husband take a day, me, take a day. Lock in . No, I was not doing that. It was ugly, and hurtful when she wouldn’t take no for an answer with slams in a family thread. This got at my marriage. I did not work since I was 15 to be a caregiver in retirement.
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Figure out what you need from your sister and give her a choice.

“Do you want to cover weeknights or weekend nights?”

Or,

”I’m planning a getaway. Are you available Labor Day weekend or —— to stay with mom?”

Recognize that just asking the question may alienate her completely and she may discontinue the hours that she is currently giving.
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This topic is all too familiar. Why did you decide to take mom in vs. placing her? Did you have a conversation with your sister from the get go...like " I am thinking of taking mom in, but in order to do that, I would need help from you to take her part of the time or to relieve me so I can travel or go to the store or whatever". If you didn't talk with sis about it before hand, she may not have any desire to do any of the caregiving. She may have wanted to place mom. So I think we need a little history as to how the decision was made and what your sisters feelings on the matter were. If you just ran with it and there was no decision making made with your sister, she may decline. It doesn't hurt to ask, but just be prepared that she may say no.
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babsjvd Aug 2022
Very well said.!
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Good Morning,

This is quite common in most families. You can't keep going to a door that doesn't open. Basically, you can't make people act the way you would.

You need to make other arrangements. Homecare, VNA, Church people, morning respite program in the neighborhood, cleaning woman, etc. What you lack in family--you need to replace with services.

I went through the exact same thing and couldn't figure out why people didn't reciprocate. Then one day I had an "aha moment". I said get over it, go and clean out your closet, get your own affairs life in order--finances, health, friends, living environment so you can remain strong to provide the caregiving.

You are not alone my friend. It is what it is. Make an appointment with a Social Worker, Elderly Affairs and contact your mother's primary care doc for an assessment and the nurse practitioner and get her opinion on day respite one morning a week so you can get out and do your errands with peace of mind.

I also recommend the PCP portal. The portal is faster and convenient.

You are in my prayers...
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Grandma1954 makes a great point with compensation. Is your mother paying for expenses while living with you? Are you being paid for caregiving?

I really really hope you aren't sacrificing your life and getting no compensation at all.

Does your mother have assets?

Also, are you and your sister the only two siblings? Are there other uninvolved siblings living elsewhere?
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Is there a reason your sister does not spend more time?, help more?
You can not force someone to help out.
You can ask her. Maybe.. "Betty, can you come stay with mom every Wednesday and Friday so I can get some things done and get a bit of a break?"
If "Betty" won't do that then use Mom's assets to pay for a caregiver to some 2 or 3 days a week to give you a break. Very possible that when "Betty" realizes that some of her inheritance is paying for caregivers she might change her mind.
You could also pay "Betty" using mom's assets as well. (I do hope you are getting paid as well and I do home that you are "charging" mom for her portion of all household expenses)

Bottom line..change your expectations if she won't or can't help for whatever reason get caregivers in to help you out.
If mom is on Hospice you would get a CNA a few times a week that would help for an hour or so for a bath, change bedding and order supplies, a Nurse that would come 1 time a week and the ability to request a Volunteer that would come sit with mom so you can get out.
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This is a common problem, and there may be resources in your area to assist you. I have know of many people, myself included, who had the sole responsibility of caring for a parent when siblings wouldn't or couldn't help. Look for an eldercare social worker or counselor with your local government agency and discuss it with him or her. Good luck!
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Many of us experience this. I learned to accept my large role in this..On the rare occasion I ask for increased help. Not everyone can watch a parent deteriorating. It is a difficult process. Good Luck.
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Tell her "Come save me! No-else in the entire world can help care for Mother".

Or.. stop & think about this. Is this statement actually true?

Yes of course family are 1st choice - the easiest to trust BUT not everyone is a caregiver..

Yes I'd bet you most certainly do need a break!

Just skip waiting for a sibling to ride in if this is not their skill/interest & find someone else else to trust.

Ask yourself if a regular paid sitter twice a week would be better than a reluctant, maybe I can drop by.. from a sibling.

Just drop one word: from "I need *HER* help" to "I need help".
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AnnReid Aug 2022
”Yes of course family are first choice” I think I might have to disagree a bit with that statement.

If I had felt early on that I had “choices” about being a caregiver, my answer would in fact have been an emphatic “NO”.

As it happens, everything worked out in all the cases in which I was the hands on caregiver and also when I was a case manager trying to work through care during COVID, but in one case I gained 60 “stress pounds” and in another I wound up living on 4-5 hours of sleep each night.

So in terms of your personal situation Denny1534, you were there, and however you did or didn’t “decide” you took this on. NEITHER of you had to do this, but you did.

Now your decision really is determined ing your mother’s potential resources, determining how to best use what can be paid for by those resources, and arranging for whatever you can.

Family situations like yours can sometimes be worked through amicably, and sometimes cause fractures in trust that can never be fully repaired.

It may help you feel better right now if you do the research. If you KNOW if there are financial resources, a good start. If you don’t KNOW, DO NOT ASSUME. Get facts.

Try to keep your sister informed about what you’re doing, but don’t set yourself up expecting help. She chose, and you chose.

Hope you find some answers for YOURSELF. You ARE worth the effort.
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How did your mother come to live with you?
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I’d suggest that you talk through the options with your sister. You are burning out and something has to change. The options are:

1) Mother goes to a facility, because you cannot continue to do this. Each of you can visit as little or as much as you want. Depending on mother’s remaining life, this may take all of her funds, so neither of you will receive an inheritance.
2) You can split her care more evenly with sister, so that you cope better.
3) You hire carers, with mother paying, for the respite time you need. This will also make an impact on inheritance, as carers around the clock cost more than a facility. Mother will need to agree, but you can make a stand that it has to happen or you can no longer care for her. Nothing can force you to do it
4) You can agree with mother for her to pay you and sister for care. This may make it a more acceptable option for sister, and perhaps even for you. If you choose this option, come back to ask about the details you need to know (contract, taxes, insurance etc).

For any of these suggestions to work, you have to be willing to stand your ground. You cannot force your sister to do more, she has to see it being in her best interests. And neither mother nor sister can force you to continue the way things are, even though that is probably what both of them would prefer.
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What you should tell your sister is,

"I need you to help me with mom for more than 2-3 hours a week in order to prevent me from burning out."

Then come up with a list of what exactly you DO need from her:
1: help from X to X times on X days per week
2: help every other weekend from Friday at X time until Sunday evening at X time so DH and I can have a weekend to ourselves.
3: help with bathing on X day every week.
4: help with you cooking dinner on X day(s) every week

And so on.

My other advice is to use mom's money to hire in home help to give you respite. Neither you nor your sister owe your mom in-home caregiving as you've been told. Nothing is a foregone conclusion. In reality, your mother may require more care than either you or your sister is capable of giving her. My mother, for instance, required 24/7 care in a Memory Care Assisted Living community b/c she was wheelchair bound, incontinent, and had moderate dementia at the time she went into Memory Care, which was way more than I could manage myself. She wound up with advanced dementia, CHF and other health issues that required 2 people to assist her to even get out of BED in the morning and to be toileted, never mind changed in the middle of the night!

Some things are out of the scope of our abilities, especially as retired folks who shouldn't be expected to be doing caregiving at THIS level. This is why managed care facilities are cropping up like wildflowers on every street corner in America.

Wishing you the best of luck arriving at a satisfactory conclusion for care options for your mother which also take YOUR needs into consideration. Your life is important too, not just mom's.
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Beatty Aug 2022
A roster with X this & X that on X day was attempted by a sibling to my DH. When he finished laughing he explained matter-of-factly that HE rostered HIS time - end. He would offer what he decided to - end.

Worth a go as a conversation starter..?
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Well 2=3 hours a week is more than many of us get.. MAybe dont tell her you need help, but ask her? You got cut off, does she work 3 days a week or 3 hours? I work 3 days a week and sometimes I still don't have enough time, between my hubs apts and mine. She may be unaware of the hard time you are having. I am guessing if your mom is 95, you are my age or older. Is your sister older? Its hard to guess what she is going through. I wish you luck!
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Your sister and you don't "owe" your mother caregiving.

If mom needs caring for several hours a week so you don't burn out, she has some choices.

1. She can private pay through an agency.
2. She can see if she qualifies for some hours through the local Area Agency on Aging.
3. She can apply for Medicaid.
4. She can move to a facility with other seniors she can interact with.
5. She can go to Adult Day Care several days a week.
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