Caregiver regrets. Am I wrong for asking just 3 nights a week to sleep?

This post is from April and poster has not been back.

I respect you want to help but I must disagree with you Sarah3.

The OP has zero right to tell sisters what to do, how to do it or what time to be there.

The OP asks if asking for 3 nights sleep is OK. My problem is with the presumption that the sisters must provide it - must be on the OP"s roster.

They have a right to help in the way they choose - not be told.

I just now came across your post. I’m sorry your sisters seem to be very self centered and dismissive of your needs. The longer I’ve been on the forum here I see the siblings who do the most are treated the worst for some reason.

Your needs are just as important as your sisters. Do you have support from friends or a counselor? My advice take good care of yourself and don’t be apologetic or timid about your needs. Unapologetically inform them w no hesitation you’ll be taking these nights off as you need to catch up on your sleep and have to be alert for your job and the time they should be there. It’s not a request so don’t state it like one, state it as your informing them of what time they need to arrive

If you took over all the expenses, why not use your mom's social security to pay for night time help?

BintUmi: It certainly seems to be bordering on impossible for you to be working two full time jobs - your own full time job AND the full time care of your mother. Add in the fact that you're not getting sleep at night due to your mother being wakeful is a recipe for disaster. Something must be amended.

I agree with all the suggestions to hire somebody for the nights you need off. Care taking doesn't mean it has to be only you or your sisters. If your parents' resources are sufficient to payfor extta help, so much the better. If you have to pay for it yourself, it still might be worth it.

I think you need to consider hiring a sitter at night. Private duty sitters are usually paid minimum wage. Sitters through an agency cost a little more. You need to get somebody to cover every night so that you can get 7-9 hours of sleep every night.

Without enough sleep, you will burn out in caregiving and possible make mistakes at work. If family is willing to a a shift or 2 every week, that is one less person to pay. I wouldn't count on that type of help, as you have pointed out, they have families to care for as well.

Hire somebody. My mom was sick with Covid for two weeks before she passed. It was horrid. I finally gave up and found someone through the local assisted living who wasn’t afraid of Covid, who agreed to sit with her for 9 hours a few nights so I could sleep. Excellent blessing. It costs some money, but was so worth it, and ended up that my brothers volunteered to pay for that help. PS. I can’t believe your sisters actions, that’s awful. Work on forgiving them, as healing for yourself, not them.

If you or your family can afford it, hire an overnight aide to take care of your mom while you get a restful night of sleep. The aide can stay up with her or during nights that she is able to sleep, the aide can tend to any needs she may have during the night. Alternatively, ask her doctor for night medication. Trazedone is strong for making her sleepy. I also use melatonin each night to lull my mom to sleep. Don’t expect your siblings to help you even for a few nights. We’ve become very selfish people who have no empathy for our own family. Hang in there!

Her needs will escalate beyond what you can provide, even if you were not working. You should plan for long-term care assistance. If they will need Medicaid, find an elder law attorney. It makes sense to do it before the crisis happens.
www.naela.org
www.specialneedsalliance.org

Your siblings should definitely cooperate in order for you to get some respite, as well. It’s so unfair of them to expect you to a be a 24/7 caregiver to mom just because you’re unmarried.

Taking care of parents should not be only on one sibling. All three and dad should divide the time and expense that is required to get sleep at night. Just because she stopped college and is not married should not all be on her, other two mu;st help also.

I am a caregiver. My suggestion if they can each give up 2 nights each to stay with your mom it wont all be on you. Or maybe all three of you and if she can contribute divide the cost for a caregiver to stay from 8-8 two nights a week and they do just one night.

You "told" your sisters and didn't actually ask. Asking would have included explaining your situation about not getting enough sleep and them helping you find a solution that works for all of you.

Clearly, your arrangement of living with and taking care of your parents since after college isn't working anymore. Something will give especially if you aren't sleeping. Your work performance will suffer. Your finances will dwindle. You will burnout if you haven't already. Car accidents are a real risk for those who are sleep-deprived.

Try calling your sisters and apologizing to them. Explain that you need their help in figuring out what to do about your mother. Her illness is only going to get worse. Her needs are only going to increase. Who is home with her while you're at work?

You are not wrong. Since you are the provider for the household the other siblings need to protect your career. I have done this myself. I thought it was a great choice since if there is an emergency I was still in the area. Your father must not be able to assist as well. One question I asked someone was could you place a camera in the room so you are not laying awake listening for her. The siblings need to realize that dementia is one of the most impossible to keep in the home setting and I would see as impossible for an employed person.

It seems to me you can't be caring for you mother who's suffering from dementia 'full time' and also working 'full time' at your great job. Right? There's only 24 hours in each day for all of us, so if you're working for 8 hours each day at your job, who's looking after mom during that time? Assuming your sisters help out during the day, that begs the question of who will care for mom during the night? Again, you can't work 2 full time jobs (caring for mom and your paying job) and be up all night, too, while mom stays awake wandering around. You can't force your siblings to come over and stay up all night with her, either, while you go to a hotel to sleep.

So what's the answer? You either place mother in a Memory Care Assisted Living facility or you hire an overnight caregiver with mother's funds. Then everybody gets to sleep, there's no animosity between you and your siblings, and you get to continue living with your parents, by choice, as you stated.

Dementia is a very, very ugly and time consuming condition whereby everybody loses. Compromises MUST be made in order for everyone to live with some semblance of peace and harmony. If you stretch yourself TOO thin, which it sounds like you're doing, you will break down and wind up needing hospitalization yourself. Then you'll be unable to care for your mother OR yourself. Of course you are burned out now from burning the candle at both ends for way, way too long being your mother is at stage 5 of her condition. NOW is the time to put some plans in place that will help BOTH you and your mom get the help that's needed, without relying on your siblings at all. Whether they're 'right' or 'wrong' with their decisions is irrelevant right now. The only thing that matters is YOUR wellbeing and your mother's wellbeing.

Call an agency today & hire an overnight caregiver so you can get the sleep you need. You are a good daughter and your mom is lucky to have you!

Good luck!

No. Asking for three night's sleep a week is certainly not too much.
Asking for seven night's sleep a week isn't either.
Your sisters need a serious reality check with an attitude adjustment and no mistake.
If they are unwilling to make your wish of getting a few night's sleep a week a reality, then give them a choice. Either they will help with the nights or with bringing in a hired caregiver to, or you will wash your hands of the whole thing and mom will be placed in a nursing home.
Don't accept any compromise because asking to have three night's a week sleep is asking nothing.

You would not be wrong for asking. Perhaps you did ask, but your post indicates you made your arrangements and told them what they would be doing. That likely didn't go over well. However, regardless of whether you asked or told, this IS a common issue. They are providing limited help, which is something. My brothers really didn't help or even hindered. That reached a point some time ago that I cut off contact with one and now that mom has passed, once all the paperwork is done, I am done with both of them.

As the saying goes sometimes, you can pick your seat, you can pick your nose, but you can't pick your family. Take or leave whatever help they do provide. Don't expect any more from them. Sleep IS essential, so it would be best to hire someone to watch over her at night so you can sleep. Most likely this would just be a CNA, someone to watch over her, perhaps do some toileting or changing, get a drink or just be there for her. Since you pay all household finances, use mom and dad's income to cover the cost. In some states, depending on income, there are limited Medicaid care that can be provided. The key is YOU need help and it isn't going to magically appear from the rest of the family. Look into hiring someone, preferably from an agency (they cover taxes, SS, liability, etc, which a private hire may not, causing more work for you!) Since you would be sleeping and can't monitor the "care" provided, perhaps also install a nanny cam. Not all aides are created equal. Sounds bad to have to "spy" on them, but once you find a quality aide, you can rest easier! The agency we used sent several different people, depending on the day/time. At least one was great. The others, meh.

No, you aren't wrong to ask for a few nights a week to sleep since you have day time obligations to FT employment. Clearly, you can't sleep at night and with a job you can't sleep during the day time either. However, that doesn't mean the sisters are going to step up to the plate to provide night time care to give you sleep.

Assuming they will not help you anymore than they already do:
Not sure of your family dynamics, but if you have remained at home all this time, do the siblings assume you are getting a free ride as far as paying bills to live at home? Is the house being left to only you? Sometimes siblings think your caregiving is in exchange for what you benefit from the parents. You need to create a few options, in detail, and then have conference call with all siblings. You give them ideas you have and ask for their input. Keep an open mind. Any help is better than no help.

One option would be that you pay for all of the house bills - mortage/rent, utilities, because you would have to pay this out of your earnings even if you lived somewhere else. Use mom/dad's income to pay for someone to come in 3 nights a week to sit with your mother so you can sleep.

If mom and dad don't have enough income to handle this sort of arrangement, you have 6 other siblings - two help and 4 are not involved at all. Ask the 4 who live out of state to split the cost of an all night caregiver for 3 nights a week.

Two sisters willing to do day time could take them to all doctor appointments and set up the appointments that work out with their own schedules. If you are at work and mom is getting worse, they might need to come for more than a few hours. Otherwise, you are leaving mom's care to dad and he's going to wear out, too. They must understand that when no one is there, dad is doing it alone. Then ask the out of state siblings what they can contribute - maybe a rotation of coming for a week to give dad a break - and you - by being there 24/7.

As mom's condition becomes worse, her needs (and demand for more one on one caregiving) are only going to increase. There is always the possibility of going to assisted living, memory care, etc if there are finances to do that sort of placement. If no money, everyone needs to consider NH placement when her care exceeds what everyone is willing to do to keep her in the home.

If you talk with all of them, please consider any and all ideas. Do not lay out a plan and expect them to accept with no say so. It won't work. You will just be bashing your own head against the wall. They walk away saying 'we offered this and sis declined - ball back in her court'.

There was an example of a similar conversation earlier this week.

"I booked a hotel nearby and told my sisters to take care of mom for 3 nights so I can sleep."

Why do you feel you can order your siblings to do as you say? "...told my sisters to take care of mom..."

You do not get to tell anyone what to do.

I understand you are tired, but 3 nights in a hotel is not going to solve the issue. The issue is Mum needs over night care giving. You need to look at your options, that do not include telling your siblings what to do.

Possible options:
Hire overnight care givers
Residential care
Working with Mum's doctor to see if her sleep can be better managed.
I am sure there are more, but these are off the top of my head.

I think it's a very good idea for you to get respite. I think the way you went about it was verging on self-sabotage. Did you seriously expect your sisters to say how high when you said jump?

You can either try mending things with them - six siblings, surely one of them can stay the occasional night? - or you can look for respite services. Depending on how badly you've offended them...

I have to say. If somebody tried to force my hand in the way you tried to force theirs I would have laughed too hard to be able to hang up - you'd just have heard evil cackling. What were you thinking?

... the paid services would probably be quicker to organise but the healed relationships would be better all round.

You are absolutely NOT wrong to recognise that you need to sleep. I'm sorry this has been a disaster, but don't let it put you off making your own wellbeing a priority.

Hello. It sounds like you are doing a great job while caring for Mom. I pray u receive the help you need. Unfortunately some members of family are not always helpful in giving hands on help when you do need to rest,and or relax.
I pray help will soon come to you. Taking care of oneself is important. In order for you to continue helping Mom some family member needs to step up and demonstrate helping hands. As family member we should be taking care of Mom together. May God strengthen you.

I don’t agree with the “it was your choice” comments or way of thinking. Nobody chooses this - it happens because we all age or we all have unplanned for life hardships. Just because one family member gives more doesn’t mean they “chose” to give up their life - what they chose was to be part of a family and do what we should do for each other - help each other.
I have and always will believe that the entire family’s love should go into caring for and being involved in their parents life and care when the time comes and if one takes on the the bulk that other family members can find the time to be part of it “when they actually want to”. The excuses people use of being busy is a cheap one. She isn’t asking her siblings to give up their life - she is asking them to participate in their parents life and care.
I feel your pain for lack of support and I think what is really hurting you is just that - lack of support and let down from the people who you love the most.
Some comments here are based on their lives and what they walked through - but every one of us is walking with very different shoes. What works for one person simply may not work for someone else’s situation.
Advice sometimes comes off here as cold and bitter and judgmental. People are here for support usually because they lack support from those closest to them. We can all share our tears - our outbursts - our fears and hard days in hopes that another caregiver “for that moment” knows they are not alone.
But I do find that there are far too many comments that come off as “find a place for your parent or LO” and get out fast. Many are genuine and they come from the heart (when some of us must be brave and face that we cannot do it anymore) but some are plain out not comforting or supportive at all.
I validate what your feeling - I validate that your siblings should help. I have one sibling and she does nothing - she doesn’t ask about mom because she will then have to see how much she is needed - (it’s clear what she doesn’t know she doesn’t have to face) her choice to not ask about mom is due to her own guilt - she pretends she isn’t needed. Don’t ever feel bad for thinking another human should make time to help another human.
I hope God sends you someone who will be equal to what it feels like to have a family member be with your parents so you can get breaks.
I don’t agree with some of the advice here but I also try to remind myself that I have no walked in their shoes.
So - no it’s not wrong of you to ask family to help and support you and your parents. It’s not wrong of you to think they should. It’s not wrong for you to be hurt or angry that they don’t. It doesn’t mean they ever will show up but your feelings are 100% valid.

Use your parents funds to pay for a "sitter" at night.
(tell the truth the cost of a night "sitter" might be less than the hotel!)
And do not do this just 3 nights a week or a month this will be your new routine.
A night "sitter" does not have to have particular skills they just need to make sure mom is safe if she does get up. Try to get her back to bed if she gest up. Maybe change her if she is soiled. This is a great job for a college student particularly if they are remote learning now. This is often a job in Hospitals that they hire Nursing and other medical students for.
If you are asking for just 3 nights a week you will become burned out. You need full nights of sleep every night of the week. This is not unreasonable.
I paid caregivers a bit over $20.00 an hour 4 years ago and that was daytime and they did a lot. Changing, re-positioning, feeding if he needed it...
Night care, depending on what is involved it would probably cost $100 - 200 for a 12 hours overnight stay. And you may not even need 12 hours. Look into what the cost is. It may be once the rest of the family hears that this is your plan they may all of a sudden have the time to stay with mom if they think you are spending their inheritance! BUT you do need more than 3 nights away.
Discuss with her doctor about antianxiety medications that may help with any problems she may be having at night. Being alone in a dark room might be frightening to her.

Okay, first you are not wrong to ask for just 3 nights a week to sleep.

You need 7 nights a week sleep. Every week. You are a human I presume? Not a robot? Sleep is not an enjoyable luxury, but essential to life.

I think maybe you just asked the wrong people... In fact... I believe you didn't ask but *told* "I booked a hotel nearby and told my sisters to take care of mom for 3 nights so I can sleep". I get it. Have been there myself with a 'non-stick' sib. Had to face that was her boundary.

You sound like a caring intelligent person. So here it is straight. Take on your responsibility to get your own sleep. This means assessing the situation as it is now. Is it getting too much for one person? If so, who can help? Is family offering? If not, arrange non-family help. Find out where to get home aides, day care, other services to your home. Book it, pay for it (folks pay, not you). Or is it time to consider a move into care for one or both?

Feeling stuck & burned out is totally understandable. The best solution is when a family can have a polite & constructive family meeting. Discuss what help (if any) each can do, what the wishes & values of your parents are & make a plan that fits.

You made a choice to take care of your parents. Not everyone wants to make the same choice. Your sisters have made a choice to take care of their own family and dependents. So yes, you are wrong, but not for asking, but expecting them to be where you are.
I am NOT a caregiver. I am a daughter, mother and a professional with people counting on me to get a paycheck so they can provide for their families. I do what I can when I can. There is always more we can do, but having boundaries is a sign of maturity.
People are living longer today, with more ailments than ever. My own mother has had 4 heart attacks, many joint replacements, severe arthritis and lost my father. I go over to her house (she still lives alone) and help when I can. I have my own children, my own firm and my own issues of my life where others depend on me.
You have a right to sleep as well. What if someone told you to move out to your own place, sell their home and use the proceeds to fund a care home for your parents?

You did say your siblings that live local have stepped in at times to assist. From your description (and I am famous for misreading things) it sounded as if you set up everything then expected one of your siblings to just go along with your plans. Respectfully, you are the one that decided to care for your parents ever since you left college. You made your decision on how to live your life, you can't make a decision on how your siblings should live their lives.

Your mother isn't going to be getting better, only worse. It is now time for you to make plans for the next phase/s of your mother's life. If you want quality sleep, maybe it is time to hire someone 3Xs per week to be available to your mother during your sleeping hours. The other alternative is to place her in a good MC facility. You've been a good daughter to take care of your parents and placing your mother in a facility won't change that.

Wishing you the best.

I've said it before, and I'll say it again -- I firmly believe the lack of sleep killed my father. My mother is the one with the health issues, and unfortunately, that required gobs of diuretics, so she'd be up every two hours to go to the bathroom. My dad would wake up, too, and often get up to make sure she got to the bathroom and back safely. He never slept more than two hours at a time for about five years. Mom didn't either, but she pretty much slept around the clock, so she got a lot more cumulative sleep than he did.

I moved in with them when Dad got sick, and lived with them for eight weeks or so. The last couple of weeks of my dad's life I was getting up with Mom as she went to the bathroom, and a couple of times she came to my bedroom door to tell me Dad had died. (He hadn't.) That's when I moved him to another room, though. After a couple of weeks doing that, I was like the walking dead from exhaustion, and I'm more than thirty years younger than my poor dad was.

Not getting sleep isn't just annoying -- it's downright dangerous to your health. If your siblings won't help you (and shame on them), you must hire help or place Mom in a facility. I'll also tell you that even with hired help, you'll never be able to turn off your internal radar if you're still in the house. You'll be listening with one ear all night, even if someone else if supposed to take care of Mom.

As others have said, this will not get better -- it will only get worse. Don't wait until you lose your health or your job, and take care of the problem now.

It is very noble of you to want to show love and respect to your parents through your acts of service and protection. However, no one is morally or ethically obliged to care for their parents. I don't wish to offend you but if you've never had your own children you probably have no idea how exhausting that in itself can be, especially if they are very young kids and there's more than 1. This may be a primary reason your sisters don't/can't participate.

Your current arrangement for care is not working. Looking into the future, it will become only more intense, especially if your father requires more daily attention as well. Even with the help of your sisters, I promise it will be unsustainable. Everyone will be orbiting around your parents, robbing attention from their own immediate families, exhausting all of you physically, emotionally and financially.

Of course you absolutely must make your own health and well-being a priority or you won't be able to help your parents. Without knowing what your parents' financial situation is, it will be difficult to give you suggestions for how to get unstuck. How old are they? Do they speak English? What is their financial situation? Do you have PoA for either of them? FYI without a legally executed PoA you will not be able to properly or easily manage their affairs. I hope you can post additional information so you get the suggestions specific to your situation.

Don't expect them to understand until they have had to help, either. I am learning that when I have to do the work, its no biggee but when they have to do it, it is massive and dramatic. Pay no attention to the dramatics.

It is a good thing for them to help. It helps everyone, including your LO. Ask them again nicely until they do...