First of all I just want to say how this forum been so supportive, encouraging, and informative to me. I’m the youngest of 7 siblings, 2 of which live in the same state as I am. I’m 37. I have a great job, and I’m pretty much a successful mid-level career professional . I live with my parents by choice. From the min I graduated college, I took it upon myself to take care of them and I took over the house finances and all their expenses. Again by choice. Two years ago mom was diagnosed by dementia, she is now stage 5. I continue to work full time, take care of all finances and manage doc appts, and take care of her full time. My two sisters do help, but because they have their own family they can only care for mom for limited hours during the day. Mom started not sleeping much at night, which means I’m also awake with her and have to report to work next day. I booked a hotel nearby and told my sisters to take care of mom for 3 nights so I can sleep. I was shocked by their negative reaction to my request, they even hung up the phone on me. Am I wrong for asking just 3 nights a week to sleep? I’m now being treated as if I committed a crime for requesting that. I feel stuck and burned out.
Unfortunately you're probably going to have to hire some overnight help(normally I would say with your parents money, but since it sounds like you're paying for everything, with your money)so you can get the much needed sleep your body needs to be able to function properly.
Most people discover exactly what kind of family they actually have when help is needed in one way or another. Wishing you rest.
you wrote:
“Most people discover exactly what kind of family they actually have when help is needed in one way or another.”
true.
anyone asking me 10 years ago, “if an emergency would happen, would the whole family help?”
me: yes, for sure!!
——
that was wrong.
i, however, prefer to know the truth. i’m glad to know the truth about their lack of morals, lack of compassion, awful personality.
indeed i prefer to know the truth as early as possible.
i only want to keep nice people in my life.
not awful people.
——
i wish us all well here on this forum!! hug!! hope your week goes well!!
bundle of joy :)
You need to save for your own retirement and old age care should you need it. You cannot do this by yourself or you may not be around to enjoy your retirement. Time to move out. Get the folks placed in a retirement community.
I would recommend that mom and dad's income be used to pay for someone to watch over them at night, so she can sleep. If their income is low enough, depending on state rules, they might even qualify for some Medicaid care - it is usually limited hours, but if all she really needs is overnight on weeknights, Medicaid and/or using mom and dad's income to pay for help should work.
It is a good thing for them to help. It helps everyone, including your LO. Ask them again nicely until they do...
Look out or the box for other solutions.
A parent takes care of a small and growing child for 18 years or so. My mother has had issues for over 20 years now. I chose to have my child. I did not choose how long my mother would need care.
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.
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.
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.
but you should read the above statement carefully and re evaluate what you are facing and take necessary next steps. No one ever gets gold stars for being a martyr, however well intentioned. Your sisters do have a right to set boundaries as do you.
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 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.
(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.
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.
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.
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.
"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.
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'.
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.
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.
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!
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?
It is not the responsibility of the siblings to give any of their time either.
www.naela.org
www.specialneedsalliance.org
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.
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