Is it ever ok to say no to caregiving?

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Is it ever ok to say no to caregiving?

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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.)

Burnout Care Decisions Relationships Siblings

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Yes! If you can't, you can't. You are probably right that she needs to be in AL and/or memory care. You've done so much for so many, and you don't need to take on further responsibilities. With caregiver fatigue, you aren't able to give your best in this situation anyway. Let your sister muddle about until she reaches the conclusion that mom needs to be in a place where professionals care for her. You're done.

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Have your mother sent back to rehab and argue "unsafe discharge".

Stand your ground. (((Hugs)))).

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Whoa, whoa, whoaaaaa! “I agreed to try” was a dangerous thing to say. Your sister heard this as a “Yes.” The rest of that sentence, “butifitdoesntworkoutthenblahblahblah…” went right into one ear and out the other. There must never be a “but.” Just..NO. That famous, under-used complete sentence.

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"I agreed to try" is OK I think - as long as clear LIMITS are included.

Limit being: NOT providing 24/7 on-call backup service, as stated.

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Yes it is ok to say no. Your sister is in denial about how much care mom needs. It is sad for her but you need to be strong and stick to your guns on this.

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I hear you . My sister finally took My father to California . She Immediately called his stockbroker , 401 K and Now wants to sell our House . My Dad is in about stage 5 of Alzheimers . My sister Has No idea of his medical History . I Realize that after several years of caregiving Not only for him but for my mother , brother and a tenant that died - That if or when he comes Back Not sure I Can take care of him . I have started Looking at Assisted living Places . I Realize my health is suffering and I have No energy . Fatigued . I think you should just lay it on the line your caregiving days are Over . I Got asked into coming back to my Dads 2 and a half years ago - I wish I had not . Your Mother sounds pretty bad and needs round the clock help . Thats the thing about Aides they show up late or Not at all . In theory it sounds Like a Plan but the reality is much Harsher . I wish you Luck in finding some peace of Mind .

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Yes, it is ok to say, "No". Also, it is ok to let your sister deal with it. You told her you would not help with hands on care and/or be a backup caregiver. She wanted to keep your mother home so now has to deal with the situation. From what you say, your mother would be safer in a facility, probably more than assisted living, to ensure she is safe and your mental and physical health is protected.

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Ubsueg, I remember some time ago I chatted with my parents about "what if they needed to hire a caregiver". I asked them would it be ok if the caregiver was 65 years old? If the caregiver was never trained in caregiving? If the caregiver hated to drive"? If the caregiver couldn't lift one of them if one fell? yada, yada, yada.

My parents said "no" to the above questions and then some. Then I said, well that caregiver would have been me. It was an interesting eye opener for them. And my Dad remember that when later down the line he asked if there were places where he could hire a caregiver :)

It is rarely a good idea for a senior to be a caregiver to older seniors. I remember going to my parent's doctor appointment, there the 3 of us were, all using canes. Dad and I couldn't get Mom to use a taxi, so I white knuckled it to all their appointments.

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That was a brilliant approach

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Yes.

PS. I have an account with 3 agencies. I also hire private duty cna's. Each Wednesday my boyfriend and I have a bet as to whether CNA K. will show up.

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I have to agree with Emma, sister heard yes. Remind her that you told her you would not be the backup plan. That you thought Mom needed LTC.

Yes its OK to say no. Sounds like sister is passive-aggressive. Place Mom in a nice LTC.

When you say no, you are not responsible for the reaction you get.
(Boundaries by Townsend and Cloud)

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Yes you can say no. Your sister did not listen to you and her plan is imploding. If your sister can’t handle managing home care then it sounds like it is time for your plan. I hope she is able to see that but if someone wants to be a martyr there is really not much you can do.

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Yes and I wish I could but unfortunately my mom needs me and my brother

I am working on moving out next year but that would leave my brother as my mom's sole caretaker

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Or, as I’m sure you already are aware, both of you could be available to her if she lived in a carefully chosen residential setting, and you could then have both time to spend with her and time for yourself.

The decision is rarely easy to make.

(7)

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I think that we RNs suffer from the "caregiver syndrome" and I so remember my Mom teasing me when I got my license that "thank goodness you have a way to work out your caregiver tendencies now; maybe you won't pick the sickest cat in the litter anymore". She was quite right.
Unlike you, I learned as an RN that I could not EVER do home caregiving for family. I simply knew my limitations and that's one of them. I loved being an RN, was well paid, and had to work three days a week with 5 weeks vacation. That isn't what caring for a loved one at home is, and I knew I never could do it.
I would seek help. I would try to seek out a licensed certified Social Worker who does private practice counseling as she or he will be best at helping you to know that you simply cannot do it all in this manner.
It is not only OK to say "no" but it is crucial to your own well being to be honest. We suffer for those we love, but throwing ourselves on the altar of sacrifice of our own lives does no good to anyone. Recognize and honor your limitations so that you can provide what support you are able with a full and open heart. I am so sorry for what you are going through. And for your loved one as well.

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Yes you are so right. Taking care of loved ones was so very difficult and took a major toll on my emotional health watching them die at home. I didn't have the resources I had at work which made it unbelievably difficult. I tried to honor thier wishes to leave this earth surrounded by family.
Now 20 years later after the emotional toil this took on me I finally realize that I could never do this again. This is why I am taking the stand now with caring for my mother at home. I wish I was smarter earlier on. The PTSD is real. Thank you for your kind answer.

(8)

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Yes it is always ok to say no. Your sister assumed she could sway you when her back was against the wall.

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You are exactly right. She thought she could guilt/bully me into covering for no show caregivers and I think taken back when I finally said No.

(5)

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Your sister just has her own stuff to deal with and she obviously isn’t as clear as you are about Moms needs and her (or your) ability to meet them. It is always ok to say no and no should mean no so hold your ground on that. She is an RN, she can be her back up plan, what makes her think you should cover instead of her given you were clear that you couldn’t do that. I would certainly tell her again that while you would love to have mom at home and believe it would work, you just don’t. You don’t believe it’s the best thing for you or Mom and if it were your place (it’s not) you don’t believe it’s the best for her (your sister) either. Tell her you are happy to help do the leg work in finding the rite place for Mom and all the things required to make that happen including oversight of the facility, moving her and helping her through the transition. But you feared exactly what is happening and you simply can’t throw your time and energy into something you believe will get worse and suck you in further your time, energy, health and family have to come first here.

Your sister needs to travel her own path of emotions and needs here. Hopefully for all of you her path to reality will be short but those demons can be strong and stubborn too. Step in and put your foot down when your moms safety is at high risk but it may take a trip or two to the hospital for your sister to let go of her dream and you can be there for her but it may have to be your turn to do it the way you see fit and she needs to go with it at that point. Do your research now so you have a head start on the process and hopefully things will be a little less stressful when you both need to take the step of moving her permanently. Even knowing it needs to happen doesn’t make it easy emotionally, take care of yourself.

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It is actually loving to let her try, maybe not wise but she needed to try. She “does everything” because she chose to do everything. You were clear that she could try but you would not be the back up plan, her choice not yours.

(5)

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Yes. It IS OK to say no.

You said no.
Your sister ignored your no.
She then attempted to guilt & manipulate you into saying yes. To suit her purpose.
That is NOT OK.

Point that out.

"I agreed to try..but if aides not working or showing up….I will not be the back up plan…I am done".

I have said & done exactly the same. I had to.

The motto *Lead, Follow Get* has really helped me.

If your sister won't let you Lead (with your plan), & you don't agree with hers, so cannot Follow her plan - only option left is *Get*. Get outta the way & let her do it herself.

If sister's plan fails - well.. sister needs to live it. So then she knows. Then can make NEW plans.

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Lead, Follow, Get. I’m keeping your motto for myself, too. Thank you, Beatty.

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It was bound to happen that an aide would be a no show. That’s what happens when it’s a home setting. Get a different plan in place…other than home. With these home aides, the more difficult the patient, the more likely that either they won’t come back or not show up. Hugs 🤗

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Hate to say it, but CNAs in nursing facilities are also "no shows". They call off when they get burned out, can't get transportation into work, or just don't want to come in. That causes whoever is on the last shift to work a double and resent it (resent the employee that called off and the patients that they care for). That's why there is massive turnover in CNAs in nursing homes. Seen it happen over and over again. And, in nursing homes, RNs aren't doing these duties. They're job is to pass out meds and write reports. I've NEVER seen an RN jump in to help a CNA transport patients, give baths, change diapers or answer residents' call buttons. In fact, they don't even have to get up from their desks to answer the call button. They answer through an intercom system. And if the resident can't respond, they wait to tell their assigned CNA to "go check" on the resident when they're available. I've seen call buttons on for half an hour before a CNA gets to them. There is one CNA to 15 patients generally and you wonder why THEY are burned out or get apathetic. It's madness. If you have a loved one in a nursing home and you care about them, visit often. Your eyes will be opened.

In a country with so many in the Healthcare field, so few end up doing the actual "hands on" caregiving. While visiting my Mom at the nursing home before she passed, it was always a treat to have visiting nursing students doing their "practicals" in the nursing home. They were so enthusiastic, cheerful and eager to "get their hands dirty" in caring for the patients. Unfortunately, when they graduate to RNs and LPNs, they won't be hands on anymore. Their job will be handling the meds for the patients/residents. CNAs are the worst paid and have the most duties to care for the patients. There aren't enough of them and the turnover is rampant. It's just a fact.

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You've done your duty. Sounds like you've done it more than once.

Say No and don't think twice about it.

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Thank you for this. Appreciate the validation. I have done my duty. I promised my kids I would never ever put them through this. Big life lessons learned even at 68. Thank you

(6)

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I retyped my answer as I think there area few issues.

1. Sister ignored your No.
We all agreed on that!
Hold firm.

As I said, I lived this. Nowadays, if I don't agree, I just don't do. I make it simple.
"I don't agree with X. Therefore I won't be helping with X". On repeat if required. Sometimes people seem to be a little.. let's say.. 'deaf'.

2. Views can differ.
You both may have Mom's best interests in mind. But you are looking through different eyes.
- I want Mom to be happy in her home.
- I want Mom to have reliable care.
You may both agree you want Mom to be safe - that may help find common ground...

So what is SAFE for her situation?

3. Functional Level.
I pointed out to my loy lot the difference between Semi-Independent & Full Dependence.

Semi: The person was mostly independent, could use the help of an aide, but could manage without (if a cancellation). Could self-manage food, meds, dressing, toileting, hygiene.

Dependant: the person left alone is unable to self-manage taking meds correctly, eat, drink, toilet.

A grey area may be inbetween. Able to make a snack, reheat food, take meds ok but stay unwashed, undressed. This is the level my LO is at. LO says they will just 'make do' if no aide. Not ideal - but not instantly dangerous. So ok (just).

So if Mom is NOT ok without an aide, she is Dependant.
This makes her more vulnerable home alone.
This can be the start of a new discussion. Not on Home vs Care. But what is reasonable in terms of safety?

4. Backup Plan.
If Home with aides is plan A, & into Care becomes plan C - is it possible to implement a middle step? A plan B for backup aides? (Not you) A 2nd agency??

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That’s the issue…I wanted an agency..she thought she could do it herself with her hospital contacts. That’s where my stipulation came in that I would not be the back up for a plan that was doomed to fail.
Thank you for you answer. Mom is totally dependent and not in good medical condition.

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Others on the thread have said it's always okay to say no. It always is. You are done caregiving. It's time for your mother to go into managed care. If your sister chooses to be a martyr on Caregiver Hill, that's her business. You don't have to.
There comes a time when a person has to say no. I was a caregiver for 25 years as my employment. I was also the go-to person for any family and in-law family who needed baby-sitting and hands-on care for the old people they didn't want to deal with. I took it on for my mother a few years ago and it has not been a good experience and I am leaving.
I am so very done with caregiving for elderly people that I need a new word for done. I'm now in the homecare business.
No more caregiving for you. At 68 you had a good career and now it's time for you to be retired. Enough is enough. She needs more care than visiting home aides can provide. Unless your sister is willing to have live-in caregivers, your mother should be put into managed care. You can advocate for her now and make sure she gets good care.

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Yes it's ok to say no. Your mother would probably understand. Just do what you're heart is telling you. You have a life too.

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You are a retired RN. Also, declare yourself a retired caregiver and cannot be Martyr to anyone any more.

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Reading all these wonderful answers are great. But you have to put it to your sister this way: WHAT IF I AM NOT HERE what are you going to do? I know she doesn't want to put her in a place but if the aides aren't working out you need a back up plan then you have someone on call to fill in. Have a back up plan where you can call in an aide so that you don't do any care override her.

She has to realize she is putting her in danger when the aides don't show up her plan isn't working she will have to deal with an agency. If she doesn't and someone turns her in that isn't a place where I want to be but it might give her the motive to get other help.

I keep telling my mother WHAT IF YOU WEREN'T HERE where my brother is concern. There is a layer of protection each of us has when dealing with family and I know I couldn't do it for my brother. You have to make it where they stand on their own.

Prayers to you and your family.

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YES: your life can’t be wrecked at the expense of her demands. For both your sakes, be sure she HAS care: then breathe a welcome sigh of relief!

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this scenario happens a LOT

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it is absolutely ok to say no to caregiving. You must care for yourself. Research, and thousands of health care providers, have shown that the Transcendental Meditation technique helps to greatly alleviate caregiver fatigue and burnout. Nourish yourself first. Just like on an airplane when they tell you that if the oxygen mask drops, secure your own mask first before assisting others.

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when my sister was resistant to moving my dad to memory care, but he could no longer be alone, i told her that if she did not agree then she would have to be the one to sleep there every night. I told her that if she would not agree to look for a place then i would stop taking turns with her. it worked.

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My grandma was a live-in caregiver until age 80! She cooked, cleaned and helped the woman get in and out of the shower.
They sat in a sunroom knitting and watching soaps every day.
Worked for minimum wage!
IMPOSSIBLE to find someone like that now.

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YES! It is utterly OK and often necessary for your own mental health and physical well being to say NO! And NO is often in the best interests of your LO when it is not safe, it is not feasible, it is not realistic nor reasonable for you to provide care 24/7 OR even with aides who may or may not show up a few days a week. And NO is a complete sentence. NO IS NO.....

I had to do this with my mom, 2 years ago. Had been attempting to do the one on one care 24/7 by myself for years. Lost my mind and my life. After a 2 week hospital stay following a bad fall [also a collapsed lung -- has emphysema from smoking 3 packs a day--, resistant blood and bone infection, fungal infection in the lungs, diabetes, heart disease, incontinent, various mental health issues -- clinical depression and OCD -- and dementia]; I finally said NO, NO MORE....

I have no siblings to help or to argue with, so it was my decision. Thankfully, years before I had executed all necessary paperwork, durable financial POA, medical POA, Advanced Directive, and set up on-line access to all her accounts (had to years before as she could not handle her financial affairs or taxes, I had to do all that). Hope you have all the paperwork in place now and hope you are her POA, not your sister....

Stay firm in your decision. If things are falling apart with your mom's care (aides failing to show up, your mom is not safe alone, she has fallen) and your sister will not step in to handle and fix the situation without your help, it may be time to call adult protective services as it is "not safe" for your mom to be on her own. Let the legal system take over if your sister refuses to come to some agreement with you.

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I understand. Was in your shoes. There are no ease answers. I placed my mom in a nursing home because I could no longer help r

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Yes, refuse for your own well being and, ultimately so that your mother will be placed in a facility as you have already recognized as needed.

By continuing to be involved in the present arrangements you are
" enabling" the sister to continue down a road of denial and, enabling poor decisions about your mother's care to continue.

Your " caregiver exhaustion" is REAL; as you recognize your boundaries as an exhausted RN and exhausted daughter, placing your own self care as a priority may seem a bit foreign but is absolutely necessary for you, your mother and, though she may not yet realize it,your sister.

Do not allow guilt tripping to be invoked by your sister who may have issues if her own preventing her from sound decisions.

Get the support you need from your faith based ( or other) Pastoral, spiritual support. Speak with your mother's physician re her need for placement.

Be sure who is named as POA, and act accordingly.

Kudos for you recognizing limits.

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Is it ever ok to say no to caregiving?

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