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68 years old. Retired RN. Took care of multiple close family members till their deaths. Now 91 year old mother living alone fell Fx right humerus. Went to rehab. Got Covid in rehab. Could not put much effort into rehab. My opinion is needs assisted living/ memory care due to intermittent confusion. Sister wanted home care 24/7 aides set up by her through her job (RN)
I agreed to try..but if aides not working or showing up….I will not be the back up plan…I am done. Severe Caregiver fatigue..Have my own responsibilities at home.
Came home yesterday. Very bad condition. Cannot walk. Hallucinating. Went there this am. Aide did not show up. Reminded my sister that I would not be back up plan. Argued that she does everything…I do nothing…not true she has martyr syndrome.
Lots more to story…but bottom line is it ok to say no to a situation you thought was wrong but agreed to let her try with stipulations by me (older sister.)

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It's 100% ok and you don't need anyone's permission. Women have this unspoken pressure to always be taking care of others and to be "people pleasers" and it's unfair to us all. This is why women often ask permission (like here) to assert their own boundaries. Only you know what you can give. If you're done, you're done. Make other arrangements for her care and don't feel guilty about it.
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Proud of YOU! Boundaries! Protect your physical & mental health!
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It is ok to say no. I found it difficult and guilt ridden but followed through with it. They tried to guilt me and wanted to be sure that my sister in law would be compensated for her time since I would not be able to handle my mother much. I agreed. My brother and I are Co-POA’s. My mother is by no means wealthy, only her paid off home and a mediocre savings and a very small monthly income. I reminded them that I had told my brothers wife before my 94 year old mother had a fall, that if necessary I would not be capable of participating in her care for many reasons. I felt she would be better placed in assisted living. When she fell she was still living alone but across the street from my brother and his wife. They insisted on taking her into their home. My brother and his wife are financially set, they own several rental properties, royalties, great investments and my brother continues to work in tech with a very good income. His wife was a stay at home mom and the children are out on their own and they live in a huge beautiful home. My husband and I are financially in a low-end average income bracket. My mother is a handful and my brother came to know a side of her that she didn’t reveal to his family often. My family knew it all along. I knew there was no way I could handle her personality. I’m sure my brother has had many second thoughts on his decision. Soon after the compensation issue was addressed. He wanted me to come up with a figure that I thought his wife’s time was worth. I had done my homework on costs. I knew this would have cost either way. He came up with a figure of $3000 a month that included 24/7 care, food and transportation. My sister in law refuses to have help come into her home. It has been 4 years and she is now 98 and has severe dementia, incontinence and aphasia. Her savings is just about gone and her house across the street from my brother stays vacant with all her stuff still in there. My brother refuses to sell it for tax reasons. I knew my mental and physical health were more important than money that I could save for inheritance. My brother and his wife are hanging in there and I am thankful she is safe with them, I do not have to worry about her safety and that gives me piece of mind. It is ok to take care of yourself and have a good retirement for yourself.
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As many have said, no it's not. Hope you had/have the strength to take care of yourself, as you ONLY do what you can, the best you can, for your mother. Hugs.
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It is always ok to say no. Your life is no less important than anyone elses. Tell your sister that you will assist with placing mom, but that is it. If she chooses to go another direction, that's fine, but that's on her. Tell her she can write songs about all that she does, but you won't be part of the lyric....
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Yes
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YES SAY NO. Nobody else knows or cares what you need. You are the only one who knows your limitations. You are the only one who can stand up for YOUR needs. Please, stand up for yourself.!
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ventingisback Nov 2022
EXCELLENT ADVICE.

and
“Nobody else knows or cares what you need.”

YES, RIGHT!
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Absolutely not. You and only you know your limits. Stand your ground. You put in your time, time for sis to step up to the plate and be the back up. It was her idea against your advise. Don’t let her bully you into it.
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Ub, well done.

A few useful phrases and thoughts:

"I can't possibly do that".

"That doesn't fit in with my plans".

Consider that you yourself are a senior. Adult children in their 40s caring for elders in their 60s sometimes worked a generation ago. Today, folks in their 60s and 70s caring for the super-annuated--it's just absurd. Not good for anyone.

In elder care, there are few "good" solutions. There are only the "least bad" ones.
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Maryjann avatar
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Maryjann Nov 2022
Well said! (We need a button more enthusiastic than a "Helpful.")
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Ubsueg: You gave it your best go by stating that "I agreed to try." Your POA sister IS the determining factor. Well done!
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a very very difficult situation esp when you are the one who is looked at at the caregiver. where is everyone in your family - have they deserted you, do they live far away! you are tired but i know your kind of person - you also feel guilt - that is me, as well. helped my dad and now my brother - his daughter can only give o ne day, she does do medicare and bills but i am 76 and it's very difficult dealing with a stubborn person who should have a nurse and aides. he had them but sends them away! is there some one not in family who would help part time, who the person would know and feel comfortable with. there are people out there who are certified assistant nurses. you i'm sure know what they are. the one i found will do other chores if i need. my brother of course thinks he doesn't need anyone, but his daughter and me. i am tired but i try to do what i can every other day. also help with his dog. can person be left alone at all.
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Thank you all for your insight.
In my heart I knew the answer.
BUT you opened my mind to something I never thought of.
My sister has her POA she is the decision maker. As the older wiser sister I can voice my opinion.
BUT in the end she makes the decision good or bad. I am ok with that as long as she realizes that it's her decision and that I am DONE!
Why didn't I think of that!
Thank you all!
Update...mom is back in the hospital now 5 days with pneumonia and UTI. Again case worker came up to me about discharge plans. I referred her to my sister the POA. Felt good.
Thank you again everyone
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Isthisrealyreal Nov 2022
WELL DONE!!!
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Need to sit down with your sister and come up with a plan B. Obviously, plan A didn’t work. You’ve already realized that you are burned out. What more is there to say?
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Absolutely! Caregiving is, at best. very challenging and time-consuming. Some can do it happily for years, others really can't. Most of us have no training for some of the difficult aspects of caring for another.

More than most, you do know your limits and have already stated them. Say no. You have done all you can.

We had a similar issue when Mom wanted to do hospice in her home. The 2 sibs who had done the least wanted to try saving the money on the 24/7 aides. The 2 sibs were actually gone in less than 24 hours, expecting the rest of us to fill in. I called the agency and told them to come back. Fortunately, they could. I think you are the smart one here.
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Ubsueg,

Yes, emphatically yes, it is more than ok to say no to caregiving. You have done your time in the trenches for loves ones and for every patient who has been under your care on the job.

I'm a retired RN too, close in age and I had to think long and hard on whether to bring my mom home after recovering fully from CV19 and the post-delirium. I couldn't do that to my grandkids and adult daughter who live with me, nor to myself. You know how much of a toll the nursing profession takes on our bodes; I've a spinal fusion, about to have a THR. Much as I loved the job, when we're done, we're done.

You told your sib that you would not be back-up and as nurses, you both know all about the critical staffing shortages in healthcare. You likely argued against your mom being transferred out of the hosp and to her home.

Stand your ground. You can love your mother in a hundred other ways and not be the one to deal with her physical cares. Don't feel guilt or allow it to be placed on you.

Get mom on the list for a good facility and support your sib where possible, just not as caregiver standby. She made the choice and will have to use her FMLA to provide the back up cares.

Wishing you well.
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AngieGuido74 Nov 2022
sometimes it's easy for others to say "you can say no to carecaring" but a person with compassion and heart wants to believe it but guilt steps in. i know i can't leave my brother go or he wouldn't change, if i didn't hound him, he is messy, if i didn't clean up (we have cleaning people once a month bc can't afford otherwise. my niece has made up her mind that she can only go one day a week, has a demanding job (works at home) has kids (non are babies) and is married (her husband is good man and helps her) so to me that is heartlless
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Yes it is okay to say no to caregiving! and don't look to others (including this forum) to approve or validate your choice!! We are here to encourage and lift each other up as fellow caregivers even if/when making the choice to no longer be one!
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Of course, but don’t expect approval from inconvenienced others.
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Yes. As others have posted, if the needs of the LO exceed your ability to meet them, say "No." If you do not want to be a caregiver, say "No." If you are burned out from caregiving, say "No."

Caregiving, for me, is a role I did not apply for, I'm not qualified for (my 82 y/o mother has dementia, is disabled due to anxiety, and suffers from multiple health conditions) and is never ending.

Do you owe the LO your life/happiness/wellbeing? No, you do not.
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It is always OK. Realizing our limitations and other factors do not make us bad people.
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Absolutely yes! Im currently taking care of my 90 year old mom with little to no support from family. I was able to work a bit outside of the home but now she is bedridden and I must be here all the time. I stopped my life to do this, I've spent my entire savings, used most of my resources and let my belongings rot away in storage. After this I will absolutely not take care of anyone but my daughter. My daughters life is impacted, our future is extremely impacted. We have no freedom to do the things we enjoy without having to try to schedule in advance. This is no way to live. I pray you have had some support aside from doing it alone. You deserve to enjoy your days and take care of you!
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See if you can find the old book called, "When I say no I feel guilty," by Manuel J. Smith.
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Is cost a factor? Between hiring on Home Caregivers & AL-Memory Care? If cost is not an issue, then the AL is the ticket. Releases you both from the stress of a Caregiver cancelling.
We had 2 diff Caregivers for my Dad few mos at home. Occasionally there was a cancellation and we would have to scramble moreso.. And, bc my Mom was such a PITA (pain in the ....) we had to pull him out into a Board & Care w/his own private Caregivers-round the clock for his final few mos. Doctor who couldn't pass in his own home. YOU are done! And I commend YOU! Your emotional & mental well being are the most important. You must keep going beyond all this.. YOU deserve to LIVE! Elderly should manage this when they have the capacity do. When they weaken be open and receptive to others making decisions for their best....for EVERYONE'S BEST!
Reading your post gave me strength this AM. I only lost 2 hrs of sleep middle of the night...thinking on the what next? when?
Proud of you for standing your ground! Make best decision for all of you.
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That you ask the question is curious.
We cannot fully say 'yes' until we can fully say 'no.'

That you tried it is huge and perhaps what I might have done in your situation.
The POA has the final say. Who is this person?

Don't argue with your mother or your sister. Be clear on your boundaries / what you will and will not do and stick to them. If your input is not appreciated or considered, know you've done all you can.

Your sister - and/or other family members - are overwhelmed and frustrated in their own way, as you are. As long as you are clear in what you will / won't do - and stick to it - based on putting your mom's needs first, you will find peace inside - knowing you've done your best. You cannot 'always' make something logical and needed happen, even with the best intentions and the best decisions for a loved one.

Ultimately, this depends on who has decision making authority. However, this question seems more about how you feel about the decision(s) you (want to) make and doing what feels right in alignment with your values / caring for your mom.

Gena
Touch Matters
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Yes. Anytime for anybody. Not everyone wants to be a caregiver. And if you're older remember everyone might not want to take care of you. Plan ahead for yourself.
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100% yes. You have a right to your wellbeing and just because sister is struggling to accept that your mother’s needs are beyond what care at home can provide, this doesn’t mean you have to comply. It’s a massive undertaking and should only be taken on by someone who is fully choosing it.

People will manipulate you, guilt trip you, to get their own way. Their own way is their responsibility and not necessarily the safest/happiest. Trust your gut.

Good luck in this difficult situation.
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Absolutely! Take care of yourself. I send my love and good thoughts your way.
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Absolutely take care of yourself first... "Put the oxygen mask on yourself first, then worry about the child/person sitting next to you"... You sound like you're already worn down and would be of little help. You'll be of NO help if you're worn out! Just say NO!
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I’m your age and have been taking care of my husband with dementia for years. I’m wore out and just would love for him to go to home. But he would hate it and I just can’t do it. He’s very demanding and can’t do anything for himself. Talks and I have no clue half the time what he’s saying. I say if you’re ok with stopping then do it. We have to take care of ourselves also. I’m sure one day I’ll say ok I’m done. But at least I have a caregiver coming in a few hours a day so I can just decompress. All but weekends. Oh how I wish I had one for weekends also.
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The whole aging-care industry along with entering this stage of family life sucks. All of us who’ve been there (and in my case are still there) know this. Everyone can tell you to take care of yourself, which obviously is paramount, but it’s not that simple. Taking care of elderly family members is fraught with double binds. It’s better to age in place but it’s costly and it’s stressful for family members because there are numerous tasks -the same as managing a business. There is hiring firing and managing staff, finances, infrastructure to build and manage, and yes… direct care responsibilities when caregivers don’t show up. On the other hand, most facilities are extremely stressful to deal with, and you have to be willing to see loved ones suffer in ways they don’t when in your care. It’s a trade off. To top it all off the entire industry exploits seniors’ wealth, or lack there of. The prices should be regulated. Instead of getting support for aging in place which takes the burden off the system, every third party needed to accomplish it gets their hooks into your money. You feel you can’t say no because someone will walk out on you - a family member, an agency, a caregiver, a health care worker, a doctor, an insurance company, etc. and then where will you be? - another double bind.
it’s the worst one. You feel trapped. There’s no direction to take that isn’t going to have serious negative consequences. I don’t have an answer for this. I’m still searching for one myself. I’ve been doing this 9 years - alone - no family support. I’m not a martyr. I’m not a control freak. I’m not a dummy. I’m simply aware that the only way out is through. Meanwhile, I protect my health by staying engaged in my meaningful professional work and my relationship with my spouse & friends. I don’t have nearly enough time for them and practically none for myself. But I’m making sure this is temporary. Sorry not more helpful.
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GoodGrace5 Nov 2022
Well said, Clair. I'm only a few months into this scenario. Using independent caregivers and an agency as backup. I've suddenly been thrown into hiring, firing, and running a small business. My best take-away is to keep a long list of caregiver contacts (network to build your list by letting people know you're looking!), invest time and energy into good relationships with the best ones you can find (most reliable, caring, and qualified), and when you need to let one go, it won't be so hard since you have backups. I have 2 aids asking me for hours now and I am booked solid 24x7. A huge blessing, but I've been through lots of little crises so far that have just about driven me crazy with stress. I'll continue up the learning curve and wish you and Ubsueg the best in your journeys. They all look a little different. ....If Ubsueg's sister wants to manage contacts she has for independent care, by all means, let her give it a try -- you might be able to help with good references you have from working as an RN -- but stick to your healthy boundaries regarding your own service. Most of my caregivers prefer/value their jobs in private care over working in a facility.
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Even though your sister might not agree that it is okay for you to say no, it is still okay to say no. She might never see it that way, and that might be part of what it means to say no. Maybe you will convince her, maybe you won't.
But in your case, you are making a responsible and wise decision. Hugs.
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