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I feel guilty as heck but I didnt envision my retirement this way. I just want to stop having to be responsible for an elderly parent. I often times think i will die before she does. Will this ever end?

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How old were they when you started?

You can stop, you just need to accept the solution.

Please provide more information so we can make suggestions.
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Without going into a lot of detail, it started around 2001 when my parents needed a lot of help. My dad died in 2018 and my mom lives with my sister now and she is the primary caregiver but I am over there all the time and always on call in case a day caregiver doesn't show up when my sister goes someplace. I think for me it's mostly the psychological aspect of knowing I have no choice. How do you get over the psychological aspect of feeling out of control of your life and that you have to always answer to someone?
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Tiredniece23 Aug 20, 2024
Ugh. I was going through something similar, except my cousin who lives closer to my aunt wanted me to move in with my aunt and be THE caregiver. I stayed over some weekends and I did a week. She (cousin) started acting like she was boss. Questioning everything. "Are you doing this? Why is that? Can't you stay longer? I have a family, so I can't. Are you coming again next week? I will get back to you on next steps and what needs to be done".
HUH? WTH? I was doing everything, and she was the back seat driver. She came by aunt on occasion to see what was needed and what needed to be done, but she wasn't doing as much as I was. The grunt stuff, I should say. Changing, wiping, cleaning, putting up with tantrums and screaming and crying from aunt. Not to mention the money I was spending to come visit constantly and get her house cleaned that was covered in feces that I had to stay in to visit.
I just decided I couldn't do it anymore and left. There was something seriously wrong with this picture.
As much as you do, people will take advantage and don't give a flying fig about you, as long as you're getting it done.
Twenty five years is a long time. I think you need to reclaim your life back.
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Your last post was asking about resuscitating your 99 year old mother who's 4'11 and weighs 110 lbs and worrying about broken ribs!!!

I would imagine your stint as a caregiver will end once you agree to either place mother in managed care and also stop questioning a DNR at 99! CPR causes more damage than it cures, and being alive for 99 years +, mom has already lived way beyond the mortality rate for 99% of women on earth.

If you feel like mom will outlive you, please look into AL right away. It's not the horrible place some think it is.

Good luck to you.
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Valentine15 Aug 19, 2024
I guess I should provide a little more info. My sisters only wish in life is for our mom to live as long as is humanly possible. She has every alarm you can imagine in her house. She gets up in the night several times when an alarm goes off to take Mom to the commode bc she wont let her wear pads bc they cause skin breakdown and that is just the tip of the iceberg. My sister would never let Mom go anywhere else unless she needed skilled nursing. Mom is her entire life. She takes great care of her dont get me wrong but the older Mom gets the more desperate my sister becomes to make sure she doesnt die. It's become incredibly hard because she and I see things so differently. If our mom dies at age 100 I wont completely go to pieces like she will. I just want to stop feeling so sick of all of this and wanting for it to be over.
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It’s quite common for the caregiver to die first. Don’t let that happen to you.
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Raine58 Aug 27, 2024
Yes. I have known several people that have died before their aging parent/or sick spouse…it is tough being a caregiving…so we need to practice a lot of self care. I am the caregiver for my 95 year old mother…she still lives in her own home, but I handle her shopping, bills, etc…so far I am good with this arrangement…but will have to take it a day at a time…there have been days when I don’t think I can take it any longer…most days she is very pleasant…but she can get in a dark mood.
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Your feelings of responsibility are something that you have assumed yourself.
No one is responsible for their parents.
We are responsible for our CHILDREN until they reach age of majority, then they are responsible for themselves and any children they bring into the world (until those children ALSO reach age of majority.

You well may die before your parent. We have seen that happen. We have also seen people ignore their careers and savings to care for parents and end up homeless and without a job history; we have had to suggest they start at a homeless shelter, often at the ripe old age of 65 or so. We have also seem people mentally broken by caregiving.

This will stop when you yourself put a stop to it. You, as a grown adult, are responsible for your choices in life, and the consequences. There is much support out there for you if you simply level honestly with family and those you care for, that you cannot go on any longers.

You didn't cause the aging process, you cannot prevent it, and you cannot cure it. There should be no guilt in choosing to have a life. You deserve that, rather than wasting your own life by throwing it on the slow burning funeral pyre of your elders.

Please consider counseling to seek options for paths that after 25 years have become rote and habitual. I wish you the very best.
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FixItPhyl Aug 28, 2024
Very good advice ("You didn't cause the aging process, you cannot prevent it, and you cannot cure it. There should be no guilt in choosing to have a life. ) ... it seems to take some of us longer to learn to follow it, but better later than never.
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I read your replies .
You don’t have to continue to be “ on call” or even a regular caregiver . Your sister is choosing this . Your sister does not get to control your life .

You tell sis you are not supporting this any longer . Either sis figures out another way without you or mom gets placed .

Your sister can not make you keep doing this . You are giving in to her . The way you “ get over the psychologist aspect “ of not being in control of your own life is you learn the word “ No “ .

Practice saying ….
No
I will not do that
That does not work for me
That will not be possible .

You are not responsible for anyone else’s only wishes or happiness .
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JeanLouise Aug 28, 2024
Exactly. Sounds like sis is dragging him into her world. Step back, time to establish boundaries
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I am probably in the minority, but

Good for Sis!! May mom live to be 100, that would be quite an accomplishment.

Too bad mom is not like the true story of an elder who is 100 yrs old and still works in her family's furniture store in New Jersey

She still drives and cooks, with the only issue is Macular Degeneration. She shows it can be done.
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waytomisery Aug 19, 2024
@cover ,
That doesn’t mean OP has to live her life around the sister’s wish . And the fact that this is the sister’s whole purpose in life and she will fall apart when the mother dies , speaks of altered mental health.
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Valentine15 -- You are most definitely not alone. Especially as people are (or seem to be) living longer, it is not unusual to have siblings with different perspectives on how those last years should be handled. You think something will be ‘short-term’ but no one really knows. My sister (POA) and her husband moved in with our (now almost 91 YO) father after our mother died last year because my sister did not want Dad to go into assisted living. He is at some early stage of dementia and is also two and a half years into dialysis.  He CAN do basic ADLs but cannot fix meals and would not remember his medicines; and cannot be left alone at night. We, along with a caregiver, have been taking him back and forth to dialysis for the last 2.5 years. If Sister and BIL go out of town, I (or occasionally another family member) will have to stay with dad for anywhere from a weekend to a week. I say “have to” because my relationship with my sister is important to me and at this point, I’m not ready to put that in jeopardy. She does not want Dad put in a nursing home, and he has said, when his cognitive ability was better, that he did not want to be carried to dialysis on a gurney, so at least we have that. But he has a brother that is almost 95 and we don’t know how long this will go on. We didn’t think he’d make it this long. But all this to say that yes, I do get resentful and I totally get where you're coming from.  
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Valentine15 Aug 19, 2024
Thank you. I dont want to jeopardize my relationship with my sister either so for the most part I go along to get along. I just dont do well in situations where I have no control. But knowing other people are going through the same feelings helps. All the best to you.
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After reading the further information you provided about your sister, which is beyond sad and concerning, I’d even more say you need, and she needs an honest conversation about the toll this is taking, as well as where it’s inevitably headed. You’re tiptoeing around your sister, she’s in a mental health crisis desperate to prevent what’s sure to come, and you’re both exhausted from it all. None of this is good for your mother. Sister needs someone to be frank with her, she’s not seeing the situation clearly in her unrealistic plans. She likely needs therapy. Please take action on this and don’t let fear rule. Everyone involved deserves better. I wish you all peace
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Beatty Aug 19, 2024
Yes & more yes.
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I first thought stop.

Stop helping so much yourself. Accept you are one person & move towards a team approach. Involve others. Other non-you people.

Then I read Mom lives with Sister.
Sister is Mom's Care Manager. Maybe she has the skills, the will in buckets, a big heart too. But if anything like my SIL who has become the self-appointed Care Manager, there is a whopping dollop of bossiness there too.

My inlaws have strong personailities. No would-be boss grows too big & controlling as the others hold their ground. They NEVER let a plan go forward without common sense. Without the plan working for ALL those in the plan. And they NEVER let others plan their calender. (Oh it has been tried I tell you!!)

My advice is BOUNDARIES.

Find a copy of The Boundaries Book (if you have not read it). Or read it again. Boundaries: when to say yes, how ro day no. By Drs Cloud & Townsend.

"I dont want to jeopardize my relationship with my sister either so for the most part I go along to get along."

This. Unpack this.

Why NOT stand up to your Sister?

Swap the word *jeopardize* for *ruin*. No, you don't want to RUIN your relationship. I get that. But I ask you why must your relationship with your Sister be jeopardized/ruined by you saying NO to her?

You are allowed to choose.
You can change your mind.
You are allowed to say no.

If Sister has a major tantrum when you say NO, what does this tell you about her? About your relationship? About RESPECT?

Have a good think about how much you can help without this becoming a BURDEN. YES I said BURDEN. Let's call a spade a spade.

Maybe it's one day a week? OR Two half-days + 3 phone calls + 2 appointments per month. Whatever you think & feel is manageable for you.

Then have an honest sit down chat with your Sister & let her know your new plan.

PS. Mine included..
NO on-call 24/7 & NO fill-in ANYthing.
By statng that, OTHER solutions were then found.
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Valentine15 Aug 20, 2024
Your advice makes perfect sense. It's just that it's really a situation of when shes not happy nobody's happy and a lot of guilt trips when I stand up to her. But I will keep your advice in my head just in case. And also remembering what she said during one of our knock down drag outs which is that Mom is as much my responsibility as she is hers.
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Nope you aren't the only one my mom just hit 91 and I'm 60. I can't retire till I'm 65/66. I think my mom is living on spite so that she can still be alive when I retire. Even tho I have informed her politely she still keeps asking when I plan to retire.
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waytomisery Aug 20, 2024
I never thought of that .
The past year or so , my mother in law keeps asking my husband when he’s retiring , he’s only 59.
Oh wow ! I just figured out she does it because she wants him to take the 4-5 hour car trip to visit her more often .
🤔🤔🤔🤔
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Your sister has a problem. My daughter, RN, says after 90 people are passed there expiration date. They can be doing everything for themselves, then have a fall, and can't do anything. Your sister should be happy that her care has kept Mom alive this long. Yes, she is going to have a hard time when Mom passes and you won't be able to help her because you look at Moms passing as a good thing. We die, we are mortal, and 99 is old.

Your sister has chose to take care of her Mom. And she is dragging you in with guilt trips. Not sure what you can do. I may plan a vacation. Tell the aide your taking one and she needs to make it in because u will not be there to cover her. Then u tell sis that ur goingvon vacation and when she starts the guilt thing, tell her caring for Mom is her choice, not yours. And what you do for Mom is to help sis but...you need a break. If sis says "so do I" tell hervto find respite care and take a vacation. She has options. Some people are just martyrs.
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Southernwaver Aug 20, 2024
Seriously, I’ll be so mad if I make it to 90 lol. Nothing good happens after 90.
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You don’t want to jeopardize your relationship with your sister but she doesn’t seem to have the same level of respect for you. Why does she gets to call all the shots? Have a heart to heart. You want to help but it is getting out of hand.
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Igloocar Aug 26, 2024
I don't think that will help. The sister appears to have mental health issues. The OP must decide what will work best for HER and move on with that plan. Neither of the, has nearly the level fo responsibility that the sister insists on.
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My friend’s cousin did die before her elderly parents. She has been dead for years now, maybe 5 or so. They are still alive.

It happens all the time.
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Ok. I read some more context. First, Golda’s mom lived to 109. So there’s that.

Your sister chose this. Answer the phone less. Take a vacation. Stop propping them up.
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ElizabethAR37 Aug 29, 2024
109? O.M.G.!!!
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Hopefully some of these replies have started to lift a little fog from your eyes.

Fear. Of damaging your relationship with your sister.
Obligation. To provide help to Mom because sister does so much.
Guilt. As above, plus
"lot of guilt trips when I stand up to her"

It's all wrapped up together & can be hard to unpick.

With practice I started to be able to see the patterns better.

I saw that my family was a little stuck in *family only must help*.
Based on fear of strangers.

I saw people taking on responsibilty that was never theirs. Obligations were just assumptions, not fact.

I saw quiet people avoiding the unpleasantness of confrontation - saying a yes instead of the potential drama/guilt tripping of no.

It's OK if your sister wants to be Mom's #1 caregiver. If her values lean her towards martyrdom even.

However, it's not OK for her to control your life.

There are many ways to proceed. In your own time, at your own pace. From cold turkey I quit! To a gradual cutting back, being less available.

I have heard of a very quiet way to quit by filing up your time up a new interest eg new job, volunteer role, study, craft or exercise group.
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waytomisery Aug 20, 2024
Yes,
Quiet quitting by gradually not being available ,

first on Fridays

then Fridays and Mondays

may have sister realize she can’t control other people .
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“Mom is as much my responsibility as she is hers”. Fair enough. So making decisions on what should happen, is as much your right as it is hers. You need to come up with a plan that provides care for M without taking away your life. That’s your right, and making the inquiries about it means that you are being responsible. If Sis turns it down and chooses martyrdom, that’s her right. But it isn’t her right to make you do what she wants, just like it isn’t your right to force her to follow your own plan and walk away from martyrdom.

What happens if Sis dies first? What’s her plan then? Does she understand that you won’t take on her martyr mantle?

If you are too scared of Sis’s meltdown to stand up for yourself, this will indeed ‘never end’ – unless you or Sis die before M.
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We need more information to respond to be of support:
- what is your situation: age? living at home with parent? work? in school? have your own family?

- Finances: Can parent afford caregivers to support you - so you can get some time off?
-- What is parent's financial situation re medi-care, medi-caid etc?
-- Does parent own a home?

- If you are falling apart / having a breakdown of sorts, you will not be able to care for an elderly parent yourself. 'forever'. You need breaks, respites - from a few hours a week, 2-3 days a week (off), or 1-2 weeks off every few months.

You cannot run on empty and need to make adjustments 'somehow.'

- what are the 'exact' needs of your parent ... needing your help for 25 years? Is this a long term disablity? disease? Can they talk, walk? What are their limitations?

- Work through your GUILT in therapy if needed. It will ruin your life.
- You need to figure out what is behind the guilt - for you to be doing this for 25 years.
- What have you been doing to take care of yourself during these 25 years?
- It is possible that 'this is your life' until their demise if you do not change how you think about your responsibilities and yourself.
- Do you feel you deserve a 'better' life? If you do, how can you make changes to move towards what you want for yourself?
- You need to 'scramble' up your thinking processes as you are on 'automatic' (or so it appears doing this for so long). Changing what you are doing will be hard although it will be up to you to decide how to proceed (get into therapy to sort this all out). Often our behavior(s) reflect a life-long pattern of behavior w a parent - it takes gut wrenching 'inner work' to process through it all - and perhaps realize that 'yes, I deserve a life, TOO.' And, that is the first step to creating a (new) life. Realizing you can.

Gena / Touch Matters
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Valentine15, you state in one of your responses that your sister reminded you that your mother is as much your responsibility as hers.
Placing mother in a care setting which meets her needs is being responsible.
If the sister chooses to care for her in her home, that is a choice she has made. You are not obligated to follow the same care routine, unless you want to.
Let your sister know that this is becoming too much of a burden for you (perhaps it's becoming too much of a burden for her as well) and it's time to discuss other care options. Let her know you are no longer going to be available to provide care for your mother in her home. If sister wants to continue, that is her choice.
She can try to hire help and keep her at home, or acquiesce to finding a care facility. It sounds like she is burning out. It is not uncommon to allow caregiving to become your identity. After caring for someone for so many years, she fears her mother's death will leave her lost and wondering what to do next with her life. I would urge her to seek emotional therapy.
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FixItPhyl Aug 28, 2024
You are absolutely on-point with your advice, especially regarding cargivers becoming identified with their role, and then lost later in life. Now is the time to slowly change that path.
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Assisted Living is inevitable. You cannot continue this way. I love my parents, but had to place them into Personal Care Homes. I cannot imagine 25 years of caring for them. You sacrificed so much already. Please speak to your local resources and an Elder Care Attorney.
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FixItPhyl Aug 28, 2024
I totally agree with you. I admire your insight.
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Enough is enough, Valentine. There's two choices here.

1) The elderly parent goes into AL or whatever type residential facility is right for their needs.

2) A live-in caregiver moves in and the elderly parent pays for it.

These are the only choices you should be willing to accept.

It's time for you to retire after 25 years of caregiving and accept the metaphorical 'gold watch' which is you get your life back and can actually enjoy your retirement.

It's okay if you see your mother as your responsibility. That doesn't mean that you have to be a care slave. That doesn't mean that you personally have to meet all of her needs and make her happy.

Your responsibility is making sure she has a safe, clean place to live. To make sure she receives necessary medical care and decent food.
This responsibility can easily be met in AL or any other care facility.
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You are the only one who makes guilt or lets it go. You have your own life so live it. There is nothing wrong with caring for someone but don’t let it consume you own life and individuality. There are many options for caregiving and experience has shown that alternatives may be better than your own.
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I know of people who have died before the person they were taking care of...it sucks the life out of you. You are entitled to a retirement yourself. I don't know the particulars of your situation...level of care your parent needs, their finances, etc, but you should try to find a facility for this last segment of her life.

My mom is in memory care and there is still a lot to manage and stress about. Laundry missing, her monthly banking needs because of the miller trust, medicaid filings and bills, her health (she recently had covid again and was isolated) which caused her to decline even more. Spending time with her even though she doesn't know who I am and feeling like crap after leaving there because it's traumatic to watch. It's exhausting even if they aren't in your home.

Try to find other solutions and save yourself. There is no prize at the end of this.
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Madisoncuckoo7 Aug 27, 2024
This! Yes! Thank you! My mom’s been in MC for 4 years - thank god!!! - and I’ve been The One in Charge and I swear I feel crazier than she is. All she worries about is when lunch is. Meanwhile oh the emergencies and situations. Been doing parent care management and my mom for 8 yrs now.

Someone coined the term, ‘emotional hangover’ for the feeling after being with a difficult LO , and that feels so appropriate. I’ve started taking a ukelele with me to every visit , she likes the music but I swear it’s for my own scraps of remaining sanity. I just make up songs on the fly.

It is a looong road leading to bleah
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That is a long time so sincere Congratulations on coping for this time. It’s now caught up with you and you need a break and some quality me time
do you have any relatives that could help - can you speak to the doctor who must have lots of cases like yours and maybe ( should) be able to provide contacts to help you
hang in there and look if there are any options
thats a very long time and you must be tired - physically and mentally /emotionally
You can’t be there for someone all of the time
Look at what options are available and do take any up
you can care but you need a life as well
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For those of us who were parenting the parent from a young age, it goes on and on. I’m sure it’s no different for those who have a parent who starts to fail at a young age. It consumes your life, your other relationships, your brain. There are things we can do to help ourselves though. You MUST carve out time for yourself, even if you have to hire someone to stay with your mother while you’re away. Find an adult daycare. If she’s in a facility and you have the means, take a vacation. Go alone if you must, but get away. If you have faith, lean into it heavily. If you don’t have faith, consider it. Find a support group, it’s the most tangible way to see that you’re not alone, far from it. And most importantly of all, protect your peace and your health. Do everything in your power to support your well-being. The smallest things can help. I found a few apps that have helped me get a good night’s sleep again. It is amazing how much stronger we feel emotionally when we have adequate rest. Wishing you peace.
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JeanLouise Aug 29, 2024
What is that sleep app? How I need a decent night’s sleep!
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No, it has been almost 3 months for me and I am ready to run away. I can't deal with this, and I am going to go broke doing it.
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BurntCaregiver Aug 28, 2024
@Charliana

Please for your own sake put a stop to this insanity today. There is no reason why any adult child has to pay one cent out of pocket for their parents' or spouse's care.

If an aging parent or spouse is low-income they qualify for Medicaid. Maybe they have a house that has to be sold and 'spent-down' paying for facility care. Then sell it and place the person. People constantly go on about the nonsense that their LO has too much income for Medicaid. No they don't. Their monthly income gets spend down on their care along with their other assets like real estate or insurance policies. Then when it's gone, Medicaid takes over.

Believe me it's worth it to forgo any potential inheritances and just place the person and take your life back.
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That’s super long. I’m only on 11 yrs.
the thing that’s different about this job is you can’t quit or barely get a vacation. It’s indentured servitude with love and commitment of course
when I get free, I’ll definitely forgo any new opportunities for caregiving. Worst nightmare is immediate imprisonment to a new helpless human being. This really makes you think about prior lives and reincarnation, karmic debts being paid…etc
i am caring for a stepfather who outlived all his kids. I cared for my own biological parents too. All others from my generation have passed. It’s just me. I’ll be 62 in January and have three grandkids under five. They’re a joy. They’re my respite. (Still exhausting, of course )
I still count my blessings. He is still “with it” and we have lots of laughs. I just make every day special like it’s his last. It has taught me to appreciate every moment. He’ll be 96 Monday.
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jemfleming Aug 28, 2024
Love your succinct description of the “job” - “you can’t quit and barely get a vacation.” But I also like your attitude and ability to find some joy in it.
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It’s been 13yrs, the last 3 she’s been bedridden. I feel guilty and sad, but I just moved her to a residential home. It’s not cheap. I just can’t do it anymore. She’s 85 bedbound and some dementia
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MiaMoor Aug 27, 2024
Please work at ditching the guilt. It isn't appropriate and it isn't serving you.
Sadness is understandable, but you don't need to be sad forever.
Lead your life, which is what (I'd imagine) your mum brought you up to do.
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Wow, this is just toooo much.

It's too bad that you are afraid of conflict with your sister. She is being ridiculous and you don't have to feed and support her difficult and demanding schedule for your mom's care.

This could go on for YEARS. It's time to stand up to your sister. Well, more like stand up for yourself. You can be kind and gentle but you have to tell her that you're not OK with continuing with this level of care. She needs to hire someone to help instead of relying on you.

There are many many times that siblings don't agree and only one takes care of the parent. The only reason she can do as much as she is is because of you doing what she wants you to do.

Time to put you, and your retirement, first.
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OH and to answer your question - I am also tired of being responsible for my elderly parent. She's 81 but old for her age and not doing so well. Currently in rehab and will transition to LTC once she's "ready". I've been providing care for her for almost 10 years - first just general things at my home, then she started having cognitive issues, then need to place her for my sanity and to have time to spend with my kids and grandkids. It's not easy, but you have to pull away to be able to live your own life.
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