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I am 76 years old and one of the primary care givers for my 97 year old mother. Mom has dementia and needs 24 hour care. My much younger sister is adamant about keeping Mom at home as long as possible. I worry that at my age something might happen that would leave me incapacitated (heart attack, fall, etc) and Mom wouldn't even be able to call 911. I am in fairly good health but would not be capable of lifting her up if she falls. My own doctor has expressed concern about my being a full time care giver at my age but my sister, who has managed Mom's finances for decades, insists on the two of us continuing to care for her. Every week when I leave my wife at home to go take care of Mom I have mixed feelings. I am grateful to be able to help but I regret leaving my wife alone for several days at a time in our rural home (40 miles away from town!). I think my physical condition is holding up pretty well but emotionally I'm getting worn out.

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She can live "at home" but not necessarily "her home" and not necessarily you. Maybe you need to assess who takes care of her. If you take care of her because she has no money for a home health aide, that's one thing, but if there is long-term care insurance, either you should be paid or she should get a paid aide.

You are missing out on your own life - she moves in with you (not sure if that is possible, but...) or she gets a paid aide. Much younger sister needs to put her money where her mouth is and be at least a half-time caregiver, or pay for a paid aide for half of the time when YOU spend time with your wife!
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At your age, you owe it to yourself and your wife to enjoy whatever time you have left together especially while your "physical condition is holding up pretty well." There is no promise of tomorrow. Your sister is thoughtless, inconsiderable, or selfish and you have put up with it long enough. Time to stop letting your baby sister dictate how you live your life. Focus on your emotional wellbeing and enjoy spending time with your wife. Your sister will figure things out for your mother; she controls the money.
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At your age, you must put you first and take care of yourself. YOU should not be taking care of someone else - this must end now. You must either get a caretaker or make a placement. Do not endanger yourself any longer.
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One of the most important things caregivers must do is to take care of themselves first - or you will have 2 people needing assistance. I don't know exactly what your sister does, but if it is only to handle finances - that is not sharing the load. If finances are not an issue, than looking for in-home aide or possible stay in assisted living should be considered. Don't let your sister guilt you into playing her game. Talk with your local dept. of aging to get some guidance on some other options. Your own family is being deprived of your participation which is just not right. Perhaps you and your sister can take turns having your mom staying with you. I would expect that physically you are more impacted than you even realize. Does your mom have a will; power of Attorney; living will? If any of these are needed, speak with an estate attorney. AGAIN- THE MOST IMPORTANT TASK IS FOR YOU TO TAKE CARE OF YOURSELF - PHYSICALLY AND EMOTIONALLY. DON'T LET SOMEONE ELSE -EVEN A SISTER DECIDE WHAT YOU SHOULD OR SHOULD NOT DO, I understand that can lead to some bad times between your sister and you, but you have to decide what is best for you. [note: you don't say where your sister lives or if she has a family that can help or what her health is like or even her financial situation.
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Its very easy for your sister to say that as all she is handling is her finances. You need to tell her no more unless she plans on spilting the shifts with you. Your mother has the money get her the care she needs n once she runs out medicaid will take over. I know as I was in your boat but it was to much for me. I have a life too. I told my siblings if any one wanted to get her n take care of her or I was putting her in a nursing home. No one volu teerd n my sister basucally said its not my responsibility to care for her. Thats what they have nursing homes for n that's what her money is intended for. Honestly I let your sister read all these replies. It sounds like money is more important to her than the proper care she needs. Plus remember you have a family of your own.
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Your sister needs some support to understand mom will be ok in a service facility like a nursing home or even assisted living.
She does mom's finances, is she saving her money for an inheritance?
Perhaps tell sister you have a bad back and need a week off and see if sister understands the level of help mom needs if she has to do it alone and it changes her mind?
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Yes, you should be worried about your health and mom's. Mom needs shifts of qualified, experienced, and physically capable caregivers, which absolutely excludes you. I agree where possible to keep mom at home, even with dementia. If needed to fund this your sister needs to spend all of mom's assets, including home value if needed (reverse mortgage) on this care. Give sister 2 weeks notice today. Tell sister you intend to visit frequently, but not for care purposes, which in this case clearly need a professional.
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When your sister says she "wants to keep Mom at home as long as possible", has answered her own question..... it is not NOT possible. Your health must take precedence.
It's time to have a face-to-face with your sister and come up with a NEW plan for care. Also, to review her finances. There may well be enough to find a care facility or at home care for your mother.
Make it clear that you are stepping down. Say that again and again
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Is Your sister is managing the hands on care as well. It only works as long as it works. Do what you need to that is best for you and your wife. Things change and plans should be adjusted. Tell your sibling alternate plans need to be made.
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Take care of yourself. Is your sister going to take care of you when all this makes you sick?

With some kindness toward your sister, she may be in utter denial about how aging has effected you. I cared for my mom and dad for 4 or 5 years it may have knocked five years off my life. I was 62 they were 90+. During this time I was helping my brother, 5 years younger, and couldn't lift my end of a table we were moving. He asked, " what's wrong with you?" Me, " I got old." He was shocked. His sons have done the lifting since then.
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Please read and re-read these posts and journal why you are giving your sister so much power & control over your life. You are not wrong to worry and consider your own health and your wife's safety. The stress and sleep deprivation from Dementia accumulates quietly. It is dangerous and real. Please take a month off, rest and start seeking the many options you actually do have. Your sister can hire help 24/7 for your Mom and will have to face the reality that help is a must.
Your volunteer (? )caregiving has saved the trust at least $5-10K per month x how many years you have been doing this. I nearly passed away ignoring myself during caregiving 6 years for my Mom. I had no idea how exhausted I was.
Please push back on your sisters insistence, stand up for yourself and your wife!
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You are right to be concerned and I am the proof of it. I am only going on 65 and looking after (in spite of his belief that he is quite independent) my104 year old father and my mother who has dementia and just entered a hospice program who is going on 99. Last fall I had a day I just didn't feel good, had some general weakness and got scared...enough to call the rescue squad. I had a dissected aorta which is usually fatal, but I'm in the Cleveland area so the local hospital had me shipped via helicopter to the Cleveland Clinic where some experts saved me in time. Mom and dad managed on their own with some friends and neighbors checking in on them and my pup and thanks to Stouffers and take out....You are not wrong to worry about you and I offer the reminder we know too well...when on an airplane remember the directions to first take care of YOU and put your own oxygen mask on before you take care of any others like children, or people acting like children!
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I started caring for my dad in 2015, I was 45 and I have gone down hill, so I worry about my health. Yes, it does take a toll out on us. There is nothing I can do but try to eat right and stay active. I'm wondering if will out live me. Haha. He just turned 89 and doing great. Me, I feel like I'm dying.
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gdaughter Jul 2021
I feel for you. Every time I look in the mirror I wonder where I went...it has taken a toll. The demands are unending as are the needs...cleaning, laundry...and my father at 104 is clueless. ANd he is doing very well....
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At the rate you're going, you're going to give out and leave 2 people alone, your wife and your mom.
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2irishlasses Jul 2021
Brilliant insight! Please post this everywhere, I was in denial and almost lost my life. I am still trying to make a comeback after 2 years of Mom passing,
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Has the OP responded to any postings? I hope he reads all of this good advice. I don’t think anyone posted in favor of his sister’s idea of how things should be done.
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Llamalover47 Jul 2021
Need: I am attempting to look now, but there are 45 posts.

That is a no, I believe - unless I missed something; the OP hasn't responded.
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Imho, it is IMPERATIVE that you take care of your elder self. It's good that you have recognized the fact that perhaps you can NO longer carry on in this role, especially since your sister has the mindset of carrying on at all costs. Do not let yourself be a part of quandary. You must take care of YOU, else you fall faint and ill and are good to no one.
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The exhaustion catches up with you. I have a friend who took care of her mom for around five to eight years. Seemed like forever. My friend refused to to have anyone help her because she feared gossip in this very small community. They lived in a mobile home from the 70s—small rooms—so she did it all, including finally sleeping in bed with her mom so she could get her to the toilet several times a night. Came the day they were returning from getting blood work for her mom. She stopped at the end of the exit ramp, looked both ways, pulled out and got hit. She hadn’t seen the car in the distance going well over the speed limit. Her mom died in the accident. She thinks she may have been distracted. But exhaustion comes in different guises than we expect.

What if you got really sick? What would your sister do them? Time to take care of yourself. The nursing staff in assisted living places are on at least two, possibly three shifts. There’s a reason. People get worn out and make mistakes. Don’t sacrifice yourself for a mom who needs lots of care and a sister who doesn’t seem to care about your health. There are great suggestions here about looking in assisted living places. You do have options even if your sister doesn’t see any. You are her option.
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If your sister is so adamant about keeping your mother in her home, then your sister should move in with her and care for her 24/7, not you. And that's assuming your sister has the skills and ability TO care for her mother who suffers from dementia 24/7. You should not be doing so at 76, nor should you be leaving your wife home alone for days on end simply b/c your sister has an idea stuck in her head! An elder caring for another elder is just a recipe for disaster, in reality. This is why Memory Care ALFs are popping up like flowers on practically every street corner in the USA.

My mother is 94+ with moderately advanced dementia & lives in a Memory Care ALF herself as there is NO WAY I am capable (or interested) in doing the hands on care for her at 64 years old. She's fallen 74x, is incontinent and wheelchair bound, to name a few of her issues. She has doctors & dentists & specialists who come into the ALF to visit her regularly. It's the biggest blessing on earth.

Why are you putting yourself through this? Your sister may be doing the math & figuring the inheritance will be wiped out if you place your mother, which may be true but that's what HER money should be used for: proper care by a team of professionals. I will wind up with a big fat goose egg as an inheritance but the way I look at it, it was never 'my' money to begin with.

Wishing you the best of luck putting your foot down with your sister and realizing your own limitations.
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Cover66 Jul 2021
Financially lucrative for these businesses, hence why they are "popping up"
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Speaking from experience, my health deteriorated so bad that I developed cancer 5 yrs into caring for my mother. It was such as stressful time the first 5 yrs, that my health was compromised. It is a tremendous undertaking and it works on the mind, body and soul. I am still caregiving my mother - 5 yrs after my diagnosis. We never know how long they will live. I had to set up boundaries. My mother is now on hospice and this is a tremendous help to me. I have spent all my 60’s caregiving my mother. No vacation, not one day off, life interrupted. I say find a different way to get her care. Don’t do the hands-on caregiving if there are other ways to utilize her caregiving.
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Beatty Jul 2021
I wish you peace & health 🕊️🙏
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Is your sister taking turns and why does your sister want to keep her at home? Is it about the money that she wants to save for she will get more of an inheritance when your mother passes. You’re too old to be taking care of your mother.
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You need to understand all of the options clearly and that includes financial limitations and consequences of selecting any of those options. You and your sister together also must meet with the estate attorney, financial advisor and healthcare experts to understand what is possible and what is not. Then, it would be helpful if you are able to express what you are and are not physically able to do at this point. Armed with this information, you and your sister can make the best possible decision for all of you. God bless you. This is where it gets very, very difficult.
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Oh my word!! YES you should be concerned about your health and your wife’s. I am younger than you are and it took me down. My dad has been gone only 2 years but I’m still recovering from the 10 years before taking care of him, my mom and my sister until her passing. I didn’t actually take care of my sister until almost the end but it was definitely hard losing her so quickly. I haven’t read the other responses so forgive me if you have answered if she’s got money to go to assisted living, skilled nursing or have someone come in and help (if not full time maybe 3 times a week to give you and your wife breaks. I found this site right after my dads heart attack and it literally was God sent (since he was the one who got me through it plus my rock of a husband when he could when he wasn’t traveling on business). I hope you use and take what you can from everyone’s suggestions. They are the Best!
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Look, you don't even need all the reasons. It doesn't work for you, and that is enough. Your sister can still care for the finances, and you offer to can work on finding out how to get her into a care facility. But you need to let your sister know that you've decided that traveling to visit your mom is no longer a viable option for you. The fact that she would make different choices - heck, even your mom would make different choices, is not the point. It's what is right for you and your wife.

I will share that your sister may not take this news well and may choose to end her relationship with you. If this is her choice, it is her right. But that still wouldn't make your decision wrong for you.
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You stated you're one of the primary care givers, so who is/are the other(s)? Does your sister contribute to the hands-on care or does she just manage the finances? If she's not contributing to the actual care, it's high time that she does, so she can better understand how much of a toll it takes on anyone, never mind someone your age.

Although you also state mom needs 24/7 care, what is her actual status? Is she able to do any self-care (eating, toileting, bathing) with or w/out assistance or is she more or less bed-ridden? Does she recognize you and/or her home? If she does, then more hired help would be a better solution, to allow sister's desire to keep mom at home. If she doesn't, then a facility would be a better solution. Full time in-home care is really more expensive than a facility (it may seem like less, but people forget to add in the cost of the home, utilities, food, supplies, etc.) A lot depends on what your mother can handle at home and how much she has left for finances.

I haven't reached your age yet, was just early SS age when mom needed oversight and I was laid off, so I took on the finances and assisted her with going to appts and procuring supplies. I hired aides 1hr/day to start, to get her used to having them and to have a sanity check (I live 1.5 hrs away from her condo.) My goal was, like your sister's, to keep mom home longer and increase aide time/care as needed, but with understanding that eventually she would need a facility. I would NOT have been able to physically manage her care. Bros were more or less useless. The aides plan didn't last 2 months before she refused to let them in. She was 91 or 92 at the time and still mobile, able to do most self-care, etc, but not the greatest. When she refused the aides, it was time for Plan B (she refused to consider moving anywhere as well, esp not AL, which HAD been in her own plans before dementia.) It wasn't safe for her to remain alone (proven true by the leg injury which developed into cellulitis just before the planned move - she never even mentioned it to one of us. Her neighbor was told she bruised her leg, and she reported it to me.)

Your sister does not rule your life. Most likely you agreed to this care because you could do it, but as you've found, it takes a toll over time. She can't force you to continue. It is time to have an honest discussion with her about either hiring help to take on this role or to consider a facility. 

"...my sister, who has managed Mom's finances for decades, insists on the two of us continuing to care for her."

She can insist ALL she wants. It is NOT her decision how you run your life. She either needs to take over your role, hire others or give it up and find a nice place** for your mother.

It's not only unfair to you, but to your wife as well. You both have a right to enjoy your "golden years" as well. My parents had a GREAT retirement, many years of trips, snow-birding to FL, get togethers with other family and friends. The first 6 years of my "retirement" has been overseeing mom's finances and ensuring she had what she needed, both in the condo and later in MC, including visits. OB isn't local and hadn't seen her in over 2.5 years after the move to MC. YB, like your sister, is much younger and hasn't hit retirement age yet. Now that mom is gone (mid-December, age 97+), he will have his FULL retirement to himself! OB hasn't really been impacted at all, other than a few weeks of assistance with the condo (2.75 YEARS of my life gone!)

Your physical AND emotional well-being IS important and you're right to question this "arrangement." Although she holds the purse strings, she does NOT hold sway over your life. Without being nasty, you need to let her know that you will be retiring from care-giving. Set a date. You CAN still visit and help out in smaller ways, but the actual care needs to be taken on by those who are physically and emotionally capable as well as trained for the job.

**continued in reply to this
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disgustedtoo Jul 2021
As for facilities, many consider them substandard to home care and/or cruel. Nothing could be further from the truth. It does take diligence by the family to thoroughly check the facilities considered. Reading online reviews and brochures is NOT enough. There are facilities that aren't very nice or supportive, but there are plenty that are very nice.

We checked out 3 while seeking placement for mom. There was a 4th in the area, but it was a continuing care place, which has a large deposit required (VERY large.)

One place was not acceptable, at least for me. The "tour" was anything but. Handed a brochure and a brief walk-through of the MC area. In addition, it was on the 2nd floor and there would be concerns about how to get all these people out in an emergency when the elevator can't be used. In addition to dementia, many have walkers, wheelchairs or are immobile! I don't even recall whether we were given a price range. This place went off the list the same day.

A second one (actually visited first) was found by YB after I set up appts with the other 2. It was nice, but... More expensive than the 3rd one AND that was for a shared "space", aka 2 br with shared bathroom, with a horrible view of the parking lot and 4 lane busy road! I believe there were private rooms as well, but it would have cost even more. It was newly built, but the cost along with location were big negatives for me. It was about 5 min from where YB lives, but who is managing everything? Not him. After the first year or so in MC, he pretty much vanished into the woodwork. This place was at least 45 min drive, in nice weather and low traffic for me.

The place eventually settled on had many positive points.
1) it was about 15 min from where I live.
2) it was less expensive
3) it was non-profit
4) it has endowments, to be used for longtime residents short on funds
5) it was being rebuilt, but deposit WAS refundable

The images provided along with layout seemed nice, but we still needed to check it out once it opened. We took mom for a visit during their Grand Opening and she liked it (of course by the time I got her back home she forgot what the place was or why we were there!) We took her again for a personal tour and meal. Again, she liked it, but questioned who would pay for it. YB was adamant she would prefer AL, but the staff and I said no, she needed MC. We did have to wait, as they "rented" out in stages, IL first, then AL. MC was last and also delayed until they had a few residents lined up. Mom was actually the first to move in. The others were delayed due to family issues, so they would bring mom upstairs to mingle with AL residents, with an aide to assist. Every time I visited during that time she was happy. She did hound YB (during his few visits) to take her back to her condo, but otherwise seemed to settle in okay. She was, as noted in primary comment, fairly self "sufficient", mobile, able to dress, eat, toilet and bathe without assistance - she just needed oversight and a safe place at that time. Eventually she moved to a walker and from there more and more help with non-eating ADLs, finally ending up in a wheelchair. That last bit was a combination of her own lack of movement/exercise, being a bit overweight and fear of falling.

EVERY visit I made, mom was clean, well fed and dressed. She WAS well cared for and I had NO real issues with her care there. The staff loved having her and it showed.

If your sister has issues with facilities, go check out some yourself and narrow down the choices to the ones you like. Use all your senses when checking the out and make several visits at different times of the day, to observe everything. Once you've settled on the best ones, arrange to have your sister visit them too. Too many people have a closed mind-set when it comes to facilities, envisioning what NHs were in the past. AL and MC aren't like those. Even NHs are better, but still seem understaffed.

Take back your life before it's too late!!!
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You say that your sister manages the finances. I don't know if that means that is her full part in the caregiving, but if it is that is not acceptable.
Looking at it from another perspective, leaving your right to live your life out of it, maybe this is not even the best situation for your mum.
A care facility would offer her much more than you can at her stage of life.
What is your sister's motivation for keeping your mum at home as long as possible? is it financial? 97 is pretty "long as possible" !!!!
I have been on these forums for a while now. And although they help tremendously, I wonder why so many of us have lost our own lives in this.
Stories about parents who have reached the point where quality of life is minimal and so we must follow suit and give up our lives too. Why?
20 years ago.. what would your mum have said to you about this?
You are 76, life can turn on a dime. Please rework the situation where it works for all of you. Hugs
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You are insane if you don't consider your own health! What happens to Mom if you die or are incapacitated? What happens to your wife? She has already missed out some of your company during your "golden years". At Dad's age you've both done a good job of keeping him home but your post indicates he has "issues". I know your sister is doing the financials but you don't indicate if she is sharing the actually caregiving role or not. If Mom has the finances, have sister use them to get outside help for Mom to cover the days when you are not there (I would limit my caregiving to one day a week; you want to remember these days as a loving son, not a frazzled caregiver). With the issues you have mentioned however, it sounds as is placement in a facility with professionals might be the best way to take care of your Dad at this stage of his life. At any event, please take a big exhale and stand up to your sister's demanding control. She is not in charge of your life, you are. She is not married to your wife, you are and you owe that wife some of your attention and presence at this time of your lives.

Very few people can lift a dead weight from the floor so investigate the services offered by your local fire dept. They may do an assist lift for free depending on their charter and their size.

Peace and prayers to you and all your family on this journey.
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I feel ya and I'm literally half your age! I'm taking care of my mom with dementia who's about a month shy of 79. While doing projects around the house, or climbing up palm trees that need trimming, it also occurred to me that should something happen to me, my mom would not know how to call 911 or anyone for that matter. Also, it is very emotionally draining at times. In a way that almost no one could possibly ever understand unless they go through it, especially as a son. I never thought I'd say this outside of sports, but in my eyes, you're a champion! :)
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lmb1234 Jul 2021
Sending a hug to you for being such a dutiful and caring son at an age when you shouldn't be in this position. I hope you are able to access additional help so that you can enjoy more of your own life, especially at this most wonderful time of your life. Also, please be careful doing those projects, especially climbing, that might put both you and mom in harm's way. 🤗
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My OS would throw ANY amount of money at ANY problem, but doesn't do CG. My YS is still working FT and will not retire for years yet.

That kind of leaves me as the 'chief cook and bottle washer'.

She lives with YB and his family. They provide no care, beyond bringing in her mail. It's just that they are all tired of 24 years of CG. The youngest kid doesn't KNOW any different.

YB is in terrible health. He was just dxed as a COvid long hauler and was placed on oxygen. He's grossly obese and can barely make it up the stairs, yet he will allow no help for mom. She desperately needs some repairs done to he place, yet YB won't allow anyone in. I'm just waiting for her kitchen faucet to totally break away from the wall.

I'm truly worried that my YB will not outlive my mother, and if that happens SIL will have mom moved to a NH in a blink of an eye.

YES--you do need to care for yourself. Nobody else will!

I am having major surgery on an foot I broke almost 4 years ago. Mom's concern is not for ME, but for the fact she might have to miss Bingo for a few weeks. (I got coverage for her, she'll not miss a week)...but it did remind of where I stand with her. If I am of value to her, then she's all lovey dovey, if I am not, she never talks to me. Like, for over a year doesn't talk to me.

I'm putting myself first for a change and she doesn't like it.

Be tough and talk to sis. She's not completely out of the picture, but doing the financials as opposed to the hands on--hardly a fair exchange. Good Luck. Relatives are great until they aren't.
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Beatty Jul 2021
Midkid, I may have told you this..? An accaintence's brother was similar. Doing all for Mother (dementia, still in her home). Multi visits per day. When a fatal heart attack took him out his new widow called Social Services. Did not do one iota of caregiving. Changed her phone number to stop her MIL calling all day asking for her deceased son. So very sad.

I truly hope your brother can accept help before he gets worse.

Do you have an emergency plan if he becomes ill?

"SIL will have mom moved to a NH in a blink of an eye".

The devil is in the details of HOW that is to be done. Don't for one second let MIL be brought to your home while things are 'worked out'. You & SIL will need to stand firm & arrange the 'Granny Dump' I suspect 😞
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Does your sister come to work the days that you are at home? Or does she just handle 'finances'. If she's not there doing the grunt work, it's time for her to come. Taking care of the finances can be sort of a big task, but it's not the down in the trenches work.

Or tell sis that you just aren't able to manage the amt of work you currently do. Tell her it's time to hire some aids to take up some of the time you spend there. Or move mom to your house so everyone is under one roof all the time - w/sis coming in to do her fair share there. Leaving one person out in the country while trying to take care of another is too much for you, by your own admission. Tell sis it's time to make some changes. If you wear out, she'll be trying to manage it all on her own.

I also suggest that all 3 of you - mom, you, wife - get medical alert buttons. Any one concerned about falls should have one on. Charge it at night at the bedside and wear it all day long.
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Tell your sister to take care of her and why aren't you managing her finances since you are doing all the work.
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