Is it ever ok to say no to caregiving?

Younger sister can provide care when aides don't show up. She only gets to command herself. Is she on-call for Mom? Why not? AL can be great or not. Put your efforts into finding a good long-term place for Mom and give yourself and sis a chance to live your own safe, secure lives.

Family’s suck. It’s like running a company by committee where decisions can’t be made. Someone need to be in charge and has final say. Next take me time. If you are away for a few hours the world will not end.

Who is paying the bill? If you are, private pay, get someone else,if it’s an agency, talk to them, tell them your concerns.

Kudos older sister solidarity..
My younger sister chosen as poa.. I good with that she final decision maker... But u can't erase the extra years of experience I have. It was easier when I was bigger physically
And to be truthful she is closer to him as I Moved alot and now have a chronic disease. I had more experience with dimentia and elderly from part time jobs I did as teenager and my greater medical experience from living with a chronic disease.
At first agreed to work together. But there came a time when we disagreed. I ended up putting it in writing to his doctor. I felt that was the only way I could have my voice heard. In the letter I even said that everyone had a strong opinions and wanted the best for him, but I am likely the only one who put it in writing. It did go my way which I feel good about but I am the only one who put it in writing. Doc never acknowledged he received letter. I refernced both my greater experience and specific actions by dad. My sister as the POA had to sort through his financial situations which was very time-consuming. She actually took time off work to do it. I don't know if this is why your sister feels like she is doing so much, so don't negate her contributions to your father's care. And good luck! It sounds like your mother just needs to be in an assisted living facility.

Keep a log of date and time that action prove this isn't working.... Cause when u r asked it's kind of just ur opinion unless u have facts backing it up... And over time u forget the details and just make a general statement which is not as strong as details.


Bottom line u need to get ur voice heard by others besides to u sister.

Hold your ground. When the situation becomes intolerable. Consider negotiating other type of support: financial(?), being a part of discussing long time care options and estate planning.

You have every right to say no. You were clear with boundaries from the beginning.

Is it ever ok to say no to caregiving? Of course it is.
If it is not safe for you or mom you have every right to say no.
And by safe I mean not just physical safety but mental, emotional safety.
Tell you the truth had it been me if I arrived and mom was confused, hallucinating, could not walk I would have called 911. There are so many things that could have caused this from a UTI, dehydration, stroke, another fall and the list goes on.
Is it possible your sister wants to protect any assets for inheritance?
Is she afraid that mom will not get the care she needs in a facility either AL or MC? It sounds like she may not be getting the care she needs at home if aides do not show up.
Stand your ground. I think mom will be safer in managed care.

You can not take good care of another if you don’t take good care of yourself first.
no matter how skilled and caring, a burnt out caregiver will make mistakes and miss things.
if she is in a facility which can meet her needs it will free up both you and your sister to spend quality time with her as well as take care of yourself.
sometimes saying “no” is best for everyone’s sake.
you are obviously a very caring person and people will try to take advantage of that! Please don’t let them!

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.

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.

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.

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!

Absolutely! Take care of yourself. I send my love and good thoughts your way.

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.

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.

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

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.

See if you can find the old book called, "When I say no I feel guilty," by Manuel J. Smith.

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!

It is always OK. Realizing our limitations and other factors do not make us bad people.

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.

Of course, but don’t expect approval from inconvenienced others.

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!

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.

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.

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?

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

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.

Ubsueg: You gave it your best go by stating that "I agreed to try." Your POA sister IS the determining factor. Well done!

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.