my dear mom is in stage 4/5 of Dementia. I’m 38 the youngest of 6 siblings but because I always was the one who lived with mom (by choice) I somehow ended up being her main caregiver. I have a full time professional job and all my other siblings 2 who live in town r stay at home and the rest live abroad —one is a physician. The two who live in town come in 2-3 hours a week to help with cooking meals for mom. We have an in-home care that comes in for few hours, I begged my sisters to come in while I’m at work to take care of mom and keep an eye on her but they refused to dedicate any more hours than they can— my siblings are all in their late fourties’ and mid 50s. I take care of my mom M-W from 5pm after work to until she goes to sleep at 9pm, then I wake up every 3 hours throughout the night to change her diapers and put her back to sleep. My mom was the kindest and sweetest human any child could ever wish for - Im shocked because I thought my siblings will take care of mom and let me live my life to the fullest as they did when I was their age. I tried giving up mom and saying I will move out and I’m leaving mom to you, they didn’t budge and when I attempted to go on vacation for a week I cut my vacation short because my two sisters refused to give up their sleep at night and take care of mom so mom ended up with a UTI for being left on full diaper until the caregiver came home next day. To add insult to injury my older sis who is a doctor said why change diapers at night just leave it….there r so many things that made me hate my siblings and although I love mom, but I can’t wait for the day she transitions so I can leave this family and never look back. I cry so much because I’m so exhausted and feel stuck. I support my mom financially and I take care of everything and my siblings except one won’t even provide 50$ a month to help with mom expense. I have a high paying job, but I don’t know for how long I can keep it because I’m not there mentally. I don’t even go out on weekends for lack of caregiver that can come on weekends and my siblings refused to leave their kids on weekend. I will never put my mom in a nursing home. When the day comes when mom is no longer here, it will be the last day my siblings see me.
I changed her the next morning. I put her on the toilet and washed her very well front and back with soap and warm water using a squirt bottle (for postpartum use). She never developed UTI from being in the same diaper overnight. She did get UTI several times however, but those were all because she went #2 in her diaper, and I forgot to give her prune juice/pill afterwards to prevent UTI.
I recommend you try my method or some other method along with regular prune juice or pills to keep UTI at bay. I hope you AND your mom can sleep through the night uninterrupted.
i think you’re amazing doing all this and working full time but you need a break.
you have siblings that live in town and do two three hours a week, you do more than that a day. Keep asking, keeping knocking on that door. You’re doing it all financially, physically mentally and emotionally - who do you talk to about it all? You’re coping with a lot.
try polar bear suggestion; extra sleep will help you and prevention of uti is brilliant idea.
book an overnight stay away and get your siblings to sit. And then do it again.
you have sibling who’s a doctor and others live abroad, you say they don’t contribute…… tell them you can’t cover everything financially anymore and there needs to be a monthly contribution of x increased care costs, cost of living, tax, etc you just can’t cover everything on your own any longer. “Book” them for time at the weekends, tell them you have a work thing or an appt, what do they say then? If someone is doing everything why would they step up. If they contribute get weekend care, for when you are not working and can take a break.
Your family are very lucky to have you. You are one awesome person, but even the most awesome people need a break, look after yourself
Yes you are overworked.
Yes you have given so much.
Yes you care - greatly.
But do your siblings have to pick up what you want/need to drop? No.
Are siblings obligated to be your backup for days off, holidays, sickness or stress? No.
Of course it would be great if they offered more, but just as you are all individuals, all have your own lives, partners, kids, jobs, hobbies - you are all adults & get to choose for yourself. They may have decided they can do no extra.
Yet you need extra help.
This is when you change your mind - change your thinking. From looking to *sibs* to help you to;
1. What extra help do I need?
2. How can I find this help?
3. Are there the funds? (ie does Mom have the $)
3. Is it possible?
There comes a time when many caregivers must reassess their plan. Is it still working? If not, can it work with more help? Or has Mom's needs exceeded what can be done in a home setting? (Due to exhaustion, lack of extra helpers or finances for aides).
Spend no more time wishing for siblings to be the work horses you need. You have strength & courage. You CAN change the situation & make it work better. Get a fresh team of work horses!
Sleep disruption is a form of torture -- did you know that? Yes, you could lose your job if your performance suffers because of your caregiving. And then what?
By any chance did your sibs suggest your mother could be put in a facility, and you refused?
Do you have POA? HCPOA? If not, who does? What is your mother's financial situation?
You are only 38. Are you willing to give up your life for your mother? (DO NOT DO IT.)
You don't want to place Mom because it would make YOU feel bad. What about HER needs? And who said you'd be leaving her there? You wouldn't be walking out the door and never coming back. You could see her every day if you want.
You cannot keep going like this, waking up 3x a night. You can't be a good caregiver when you're exhausted and frustrated. You can't be a good employee at your job when your mind no longer functions properly from sleep deprivation. You're already burning out. I don't know how old your mother is, but could she live another 5, 10, years or more? Can you keep doing this for 10 years?
There are good nursing homes out there. And they can give her the 24/7 care she needs... care that YOU CANNOT GIVE. Placing her does not make you a bad daughter at all. You'd be loving Mom enough to get her the care she needs. While it may be sad for you, you'd be placing those feelings aside for Mom's sake. Putting Mom's needs ahead of yours is selfLESSness, not selfishness!
I guess your siblings figured you'd be the main caretaker because you always lived with Mom. All the others left the nest. Since you chose not to, they've assumed Mom has been your life all this time, and thus you'd be the carer.
Your mother may wind up outliving you which is entirely possible. We see it happen here and to stressed out caregivers quite often.
Truth is, you are allowing unfounded guilt to stop you from placing mom where she would get 24/7 care, giving you your life back, putting your anger and resentment in check, and allowing you to be a daughter again instead of a burned out and exhausted caregiver. You took on a role, willingly, that you're not qualified or capable of handling, so both you AND mom are suffering. You are counting down the days till she dies rather than getting her placed into a nursing home where she can live for another 10 years in peace without stressing YOU out one bit. Trust me when I tell you your mom's dementia is not very unique to the trained staff in a nursing home,,,,they've seen it all and dealt with all of it before, even stiff legged residents!
You might want to rethink your entire perspective here, that's my suggestion.
Yes, my observations are harsh, mean and not nice. And if BurntCaregiver weighs in here....she's always right. But, honestly, you really need to re-read what you've written. What if your best friend wrote that to you? Time to stop this race to the bottom now. Hang onto your career for dear life. Who has Power of Attorney? Talk to an elder care specialist lawyer. Get more help. Look into assisted care living. Take care of yourself. lealonnie1 is right, care giver mortality is real, don't matter how old you are, quite a few of us die on the job.
Please stop feeling sorry for yourself and think of your mom. You're not being fair to your mom and she deserves better. I'm sure your siblings agree and that is why they are not helping in this fiasco. She belongs either in memory care or in a nursing facility! These facilities can care for her in a more professional way than you can.
You are choosing to keep her from getting the help she needs for your own selfish reasons. Why in the world do you think you can do a better job than a skilled nursing facility? You sound very into yourself.
I'm not trying to be mean, but you've got to step back and look at the bigger picture!
You keep this up, you'll be losing your job. That's where you're troubles REALLY begin! There is nothing you can do for your mom except find her a better place. You're not trained to be a caregiver. You can't possibly know what is best for her. Your siblings are probably thinking the same thing you are. They can't wait for you to be out of the picture and your mom in a better environment with the help she needs. Your siblings have their own families to think about. Why should they give up every weekend for YOU? You expect them to get on the band wagon on your terms, not theirs. That's not a good way to ask for or accept help.
It's time to get your mom the kind of help she needs so she can be more comfortable.
It's also time to get your head back into your job and stop blaming your siblings for everything. Not everyone is cut out to be caregivers, so don't expect them to be. Being a physician is NOT caregiving.
Best of luck to your mom. What you are doing is not helping your mom. It's holding her back. Please think about this and do what's best for your mom... not you.
It helped me a lot just to realize talking to my wonderful Mother and using REASON AND LOGIC is just not something that's ever going to happen again. Oh, sure she has her moments, but that's all it is, a moment.
I for one will not put my Mother in an assisted living place. Just not going to happen. I'll bring in whatever I need in to allow her to live out her day in her Nest, period. When memory goes the only great thing about it to me is whatever drama that arises day to day --- why should I let it bother me? Mother won't remember what happened in 6 hours much less in the morning. Mom's frustration is in the morning is she still has the emotional feelings and doesn't understand why. So I get her in the car and drive around a while just to get her outside her 'CONFORT ZONE', get her outside in the sun. If I leave her inside all day it get to me normal. That ain't good for her or me. So I get her out, get an ice cream cone. This afternoon I'm taking her to the Dallas Arboretum. She hates not being able to walk without a stroller. Being pushed in a wheel chair she hates worse but once out she is glad to be out. I found a nice cleaning lady that delt with this same situation with her Mother. I pay her to take all day cleaning and talking to Mom while I go play golf. Mom gets upset when I tell her Lorie is coming today. I know what's coming. ----- I don't want her here today. I totally ignore the statement. I'll even leave the room when she starts talking. Got to go to the bathroom Mom. Come back for 15 minutes with some ice cream and hand it to her. Just FYI, I mix little milk with Natural Vanilla Bean Ice Cream soon as she sees it whatever was on her mind goes away. If it doesn't, Oh Mom we'll talk about that later enjoy and I'll leave the room. I have to treat Mom like a 6 year old child sometimes. Don't take this wrong but my sanity is much, MUCH more important to the overall well being of this situation than is my Mothers as I'm the one dealing with it. Besides, she won't remember after ice cream much less tomorrow. --- This is not, how is my Mother coping with what is happening to her for that answer is Badly so what's your point. She won't remember tomorrow. My job is to just keep her frustration and stress levels to a minimum nothing else. If I can do that things run fairly smooth 80% of the time.
I've come to grips with the fact that I can't confide in Mom any longer. Can't ask - don't ask advice like I use to. Don't share what's happening in my daily life with her like I use to for she'll go off into outer space and deliver a retort that leaves me laughing. So I don't go there. You should not either. I've been teaching golf for 45 years. I have so much insight and knowledge on the golf swing I can help anyone get better. The KEY to having that much knowledge is I know what not to say to someone. Same thing applies here.
From the cheap seats,
Dalton
My mom lives with YB. 25 years now and she's 92 and likely will live to 100.
We remaining 4 sibs have had countless talks with YB to simply allow mother to have a CG come in 2-3 times a week to help mom bathe, shop and clean a little. He gets absolutely frantic and will NOT allow anyone to help. I can go visit (after 2 years of not being allowed contact with her) but I cannot clean or help her shop or so ANYTHING. HE comes unglued and shouts at me and it gets ugly.
My other 3 sibs make a monthly visit and that's it. YB is vying for sainthood, I guess. Having mother there is a truly a burden on his whole family, but it's a burden he CHOSE and keeps CHOOSING. Mom can afford help, but he won't allow it.
You cannot put your expectations on your sibs. They have chosen their path and you've chosen yours.
I'm sorry for you, but you've chosen this and it seems to be all on your shoulders. You have options, but you're choosing them. And you have to respect your sibs and let them choose theirs.
Sleep deprivation contributed to my dad's death without question. My mom go up every two hours to go to the bathroom, and because she fell once years before, he'd get up and make sure she made it to the bathroom safely. He was a zombie, but otherwise healthy. When he finally got sick, he died in six weeks.
There's a reason why nursing homes have people working in teams. It's to keep them all from destroying their backs like you're doing with your mom. Have you ever ruptured a disc in your back? I have. After the surgery, you cannot lift anything or twist (getting in the car), and you can't sit upright for more than 15 minutes in a two-hour period. That's prescribed for 6-8 weeks, and it took me the full 8 weeks to get back to some semblance of normalcy.
I was 46, fit, and had three kids to deal with, and it still took eight weeks. Thank goodness my kids were old enough to be helpful around the house, and I had neighbors drive them where they needed to go.
It looks like you don't have that level of support, so be thinking about what you'd do when you go down, because it isn't a matter of if, but a matter of when.