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Caregiving for a parent definitely puts a strain on a parent/child relationship. Even great relationships suffer when there is too much togetherness.



Please share your tips on how you set boundaries in order to have a healthy balance between being a caregiver/advocate and remaining true to yourself.

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Fawnby,

Excellent points!

I totally agree with you. We aren’t always prepared for what will happen during our caregiving journey. We learn as we go along.

HH,

Sounds like a toxic environment! It is miserable to be around people who are always in a funk!

It’s interesting how some people manage to make the best out of crappy situations and others who don’t have it nearly as bad will complain to no end.
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Before I got sucked into the misery of taking care of two 91 year old parents 4 years ago, I had forgotten how miserable they were because I only saw them socially every six weeks or so.

It brought home how much my parents like to wallow in misery. I realized there never was any joy in that house. I don’t think either of them had a moment of happiness . My mother was always nasty and unhappy and forced my father to agree with what slight or upset du jour that made her unhappy. So he was always unhappy by proxy.

She managed to hide herself behind a facade for a long time and I really forgot who she was until 4 years ago.

I do what I do out of some misplaced obligation. Wishing my mothers Medicaid decision was happening sometime soon. It’s been months. I want to sell their house and just move on.
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This is a good thread. I'm totally disgusted with books and articles by caregivers who sugarcoat the situation. As in, "Taking care of Momsy and changing her Depends was the best thing I ever did because I finally learned to understand her, and if it weren't for dementia, we never would have reconciled." (Not the actual quote, but similar.) Or "My beloved husband and I were never as close as when we jetted around the world when he had Parkinson's. It really wasn't so hard taking him to the bathroom in the airports except for that time in Brussels when he went in the wrong door." Or, "We added on to our house so that our dear Poppy could live with us after his stroke, and we will care for him until the end no matter what it requires; by the way, what's a Hoyer?"

When I was new to caregiving, I didn't know how to set boundaries and am still perplexed about things that happened. For instance, Rude Aunt was telling Dad things that required that she be alone with him in the room, and she talked in whispers. Then later he'd call me and tell me to "keep it legal." I had no clue what that was about, but he had dementia, so anything could come out of his mouth. Then later Rude Aunt (age 88) accused me of taking money from him, which didn't happen. I paid for groceries for him and caregivers, I filled up his gas tank with my credit card, etc. and never saw any extra money around.

So after RA's accusal, I figured she was making up who knows what sort of thing and trying to turn him against me for her own purposes, as she was to inherit from him. I was the executor, and she didn't like that because she thought she should be in charge of everything, and there were signs that she was trying to get him to change that. Oh, and I was her executor at the time as well.

So where would I have set the boundaries? He wanted to see Rude Aunt, so no banning her from the house or phone calls without making Dad unhappy. Confront her about what she was saying when I didn't know yet what it was? She always denied saying or doing anything wrong about anything because if she 'fessed up, that would put her in a bad light.

I believe I remained true to myself in ignoring what Rude Aunt was doing, going about my caregiving and other duties with the highest of intentions, and doing the best I could. My relationship with Dad remained okay until he died, though I still don't know if he believed RA or even forgot what she'd said.

Caregiving affects us in numerous ways, and when in the thick of it, it's hard to sort everything out. Especially when people start trying to undermine our efforts.
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Burnt,

Nor do I. For one thing, as needs increase, it is too much work for one person to handle on their own.

It’s natural for caregivers to become resentful like Madisoncuckcoo is when they are in these situations.

In my opinion, caregiving changes a parent/child relationship entirely. It places too much strain on the relationship.

Some parents expect so much from their children.

Many parents don’t show any appreciation to their children for their help. How can a person not be resentful when they are in this situation? It’s hard to put up with.

It’s a lot easier to deal with a parent when the child doesn’t deal with daily hands on caregiving.
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@Madisoncuckoo

I totally understand where you're coming from and believe you when you say your mother isn't a bad person. Mine isn't either. The 'showtiming' and 'company manners' is for everyone else. You and me both get the incessant complaining and negativity. If your mother was anything like mine there will also be instigating for a fight and a good measure of villifying you to anyone who will listen.

@NHWM

In my opinion, I do not think that adult children should take on one-hundred percent of the caregiver role even if they had the best of relationships with their parents. I truly think that parents who were not selfish and dysfunctional with their families don't want their kids to give up their lives and become enslaved to their neediness.

I don't think if people who grew up in a home with dysfunction or abuse should take on any of the caregiving needs for their parents. Most of the time the children of abuse and dysfunction have strained relationships with their parents in their adult lives. They have to overcome a lot to get to stained. If they take on caregiving for their parents that's a recipe for disaster.
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Madisoncuckcoo,

So many people feel like you. They are caring for their mom, only because they feel obligated to do so. It’s extremely hard not to become resentful when a parent complains incessantly.
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This question struck me, because I realized that my relationship with my mom hasn’t changed at all!

She’s not a bad person at all, but her emotional neediness has been the center of the universe. I fell into the ‘supposed to maker her happy’ trap since I was little, and at least finally later in life realized that is impossible.

She’s showtimes for everyone but complained incessantly to me, which increases the sense of isolation in my own experience. People tell me to ‘enjoy her company’. What? I never enjoyed her company. Now that she’s in severe dementia, that’s not remotely possible.

I’m sad for the relationship we could have had, but instead had this FOG situation that has honestly been so painful to deal with. I love her, but my care for her is a reluctant duty. I struggle with resentment, and have made myself emotionally step farther and farther back for my own sanity. People should never lean on their kids like this, it just ruins the bond.

Thank you for letting me vent!
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NJmom,

I so relate with your sentiments!

My mom died in 2021 but I remember my caregiving days and all of my emotions that I felt as if were yesterday.

Thanks for sharing your experience.

Sadinroankeva,

Sounds like you are handling things as well as they can be handled. Caregiving definitely has learning curves!
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Nothing changes a relationship more than having to change someones dirty diapers, and being told you are hated constantly really does something to your mood. I will however always be the advocate, because she is the child now and so vulnerable, I feel sorry for her and wonder what did she ever do to deserve this type of death sentence. She was a good mom, and I try to remember that she did love me once so that her words don't cut so hard. It's bittersweet.
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Wow…tough subject. My 90 yr old mom is a LBD patient in an assisted living. She is an exit seeker, wanderer and most days quite confused. My brother is her golden child and I am her worker bee. I have a mental health counselor I see twice monthly. I have slowly learned to take the time I need to have a social life and remain healthy. It is not a happy life but I am content with what is left of my life. Mom just told me yesterday, after a 4 hour visit at my home for a home cooked lunch, I need to visit her more often ….then saying my brother is too busy {also retired and is local} to visit her more. At 73 yrs old and 4 years of this I no longer jump when told to by my mom. I visit 3-4 days a week. I have cut back from 15 hrs a week to 8-10. I do everything..Dentist, advocate with staff, doctors, ER visits, rehab stays, all paperwork, pull up purchases, clothing shopping etc. Enough is enough. My mom is more like my 7 year old child now. I do not recognize her most days. Good luck. P.S. my brothers and my relationship is damaged due to this. I doubt it will ever be the same. Mom showing so clearly who who her favorite child is has been very painful for me…the gal who always had her back.
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sadgirly,

I am sorry. Your situation sounds very challenging.
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I fought with my mom for years as a teen till I made her go to therapy, then we became best friends again that traveled together, danced, foodie fests, concerts, did dog yoga you name it! It has always been just me and her. Now we cant even leave the house for an appointment without me knowing she is putting herself through so much to only get around and knowing she is in pain makes me cry.

I have always thought we have a terrible family in whole she always said that was why she wanted to make her own. She is honestly a hyper sensitive empath that does not respond to confrontation and believes everything can be resolved while the people in our immediate family our narcissist, condescending, and mean. Living with them as I care for her , her mom or brother are quick to ask for money and help from her. While I am 22 struggling to maintain a part-time job, classes, and actually being her full-time caregiver.

It has turned me into her guard dog whoalreadyt trust my family but honestly now just disgusted and want my mom around as long as possible but will be grateful for the day I can move away and never look back.
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Jada, That's exactly my world and what's been going on. Brother POA , no respect for all I do and doesn't want to deal with moms decline, and things have came to a head. So juries out as for mine and my brothers relationship. I'm no longer concerned if we end up speaking when all is said and done. My concern is mom. He is the golden child, if it ruins are relationship, it's no longer my concern. He is my brothers so if he makes an attempt ok, if not I have one less narcissist in my life
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Margaret,

Your last line made me smile! I am the only daughter in my family. So, I can identify with your words.

You have always struck me as a ‘sensible and get things done’ kind of woman.

Your mom was very fortunate to have you at her side when she needed care.

It’s amazing how much we are able to accomplish when it becomes necessary.

Sometimes we pay a price for our sacrifices. Our own family’s lives are temporarily placed on the back burner. It’s hard.

We feel enormous pressure at times, then experience gratitude for being able to resume our normal lives when the caregiving ends.

I don’t think anyone can truly appreciate what we feel until they are faced with these challenges.
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I found that my mother had more-or-less put me and my two sisters into imaginary boxes. My younger sister was ‘the practical one’. My older sister was ‘the one with problems who had to be helped’. I was ‘the clever one, single mother, too busy to expect to help’. When I was the one who cared for her in the last three months before she died, I think (and hope) that the penny dropped that I was very practical, and also had done the most for her for years and years, in spite of problems of my own. She seemed really surprised that I was doing the messy hands on in-bed nursing – in spite of the fact that she kept saying ‘you shouldn’t be doing this'. I'm glad that there were no boys to be 'the important one'!
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Jada,

Yep! I understand. That happened in my family too. Fortunately, there was healing later on for my brother and I.

Sometimes, healing isn’t ever possible. My brother died suddenly and I am glad that we were able to find peace.

If we hadn’t been able to find peace I was ready to move forward. My brother took the initiative and I could see that he was sincere.

I don’t think that I would have taken the initiative because I had been hurt so badly in the past. I wouldn’t have opened myself up to more pain.
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I was the one that was expected to do everything with no help or appreciation from anyone while my brother remained the golden child who did nothing but was given control.

It finally came to a head when he tried to tell me how he wanted things done for my mom and I told him he could do it all himself from then on.

It severed our relationship forever.
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civil,

I don’t think you are out of line. It’s exhausting to be a caregiver. It’s normal to not want to have to rush home after going out. I can see why you would want to hire an overnight caregiver.
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My mother is in fairly good mental health. She forgets things, but not a whole lot. Her hearing and eyesight are not good. We have a caregiver for 6 hours a day and I stay at night. Some nights she, as she says, she "let's me go out so she tries not to tie me down." But I feel like there is a difference between going out for a few hours and having to rush back to her, and being able to stay at home. We sometimes pay a care-giver to stay all night, and when i mention that she really comes on with the guilt trip". I don't expect any answers to an age old question, but am wondering if I am out of line?
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BlueHeron,

I am really sorry that you are dealing with this situation. One thing that I feel that you have on your side is self awareness. That’s going to help you keep your emotions in tact.

Wishing you peace during this difficult time.
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My relationship with my mother changed, but it wasn't a change from light to dark. She was too whiny, neurotic and dependent before, and now she's mean and demented and dependent. But I am tougher than I used to be. I'm in charge, not her. I call the shots. We don't enjoy each other's company because she is delusional and unable to be happy. I don't miss her when I walk out the door, but I never really missed her before she had dementia. She was always emotionally needy and nobody wants to be around that.
I am going through the grueling process of getting a formal diagnosis of her condition and then I have to move her into assisted living. She will explode, but I just have to deal with it or walk away and leave her to the state.
We had some laughs in our former life, but she wasn't the wonderful, healthy, nurturing person I hear some people on this forum describe when talking about their own mothers. She was an alcoholic. Maybe it makes this transition easier for me. But I still feel sick most of the time. Her insults cut.
I need my life back.
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againxt,

I find that when children are caring for their parents it places an enormous strain on the relationship.

Often times, parents don’t want to let go of being an authority figure in their child’s life.

Honestly, due to their circumstances they aren’t capable of making decisions and their children are forced to “parent” them and it’s usually very difficult for them to accept this.

It’s sad, really for them and their children. It definitely changes the dynamics of their relationship.
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Caring for my mom with dementia has ruined our relationship. We used to be pretty close but now things are just awkward and stilted and not at all enjoyable. I do my best and be kind and try to do some things that will make her life more enjoyable but there's only so much I am willing to do.
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Brandee,

Wishing you and your mom all the best.
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I really respect Mom's bravery in facing alzheimer's head on. I think ours will be about a 20 year journey.
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Diane,

I hear you. It’s crazy to expect others to be mind readers!

You’re smart to know that not everyone can be pleased no matter what is done for them.
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I’ve learned that no matter what I do it will never be enough. I’ve also learned that she thinks of me as her servant and not her daughter. We had a good relationship before her dementia. Now she critical, disrespectful, angry, and seems to thrive on yelling at me. She constantly tells me that I should anticipate her wants and needs and that I am a horrible daughter because I don’t. She only lived with us for two years and life was in constant turmoil. We moved her to a rental house a three years ago that is just down the road from us so she calls me to yell at me. She has no POA and has refused to allow that since my dad passed away 15 years ago and she was still competent. If I had it to do over again I would walked away and left her to whoever else might be willing to help her. My sister has done nothing to help with her care at all.
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Care,

I am so sorry for the loss of your mom. She was blessed to have such a beautiful daughter by her side.

Your story shows us that there is always hope even in our most challenging times.

Your mother taught you well. It’s extremely important to stand up for yourself and find our way out of difficult situations.
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My mother passed away about 3 months after I started caring for her. But in being her caregiver, I believe I finally, at the age of 53 developed some of the traits that she tried so hard to instill in me since I was a child. I was always (still am) more of an introvert and always avoided conflict any way possible. I never stood up for myself....no matter what, I'd simply turn the other cheek & just ignore whatever nonsense was being said or done. Mom would get so aggravated at me, especially as a teenager when I got bullied in high-school after winning a beauty pageant, and then when I married my high-school sweetheart and he cheated on my 7 or 8 times before I finally filed for divorce. She begged & pleaded with me to be strong, to stop taking people's "crap!" Ironically, out of her 5 children, I was the one she would always come to when she needed solitude, tenderness, love with no conditions attached, and/or a gentle voice and touch!

When mom had a massive heart attack & stroke that left her paralyzed from the chest down and was hospitalized for over 2 months, it was my baby sister (I was 12 when she was born) and baby brother (I was 18 when he was born) who were the ones at the hospital advocating for her daily, demanding she be airlifted to a larger, more equipped hospital with a team of neurologists on staff to assess her, whereas the 2 middle sisters (one is a nurse) wanted her to remain status quo with only a telehealth neuro consult while she was sedated & ventilated !?! Majority rules,.she was airlifted to a larger hospital with better resources and mom's medical team was exceptional!
During this time, and the many weeks following, I became (with the help of my baby sister & brother) our mom's strongest advocate. I found my strength. I learned it was ok to ask tough questions and I didn't always have to accept what I was told, that I could counter or ask for a 2nd, 3rd, 4th opinion if needed. I found my "spirit" because of mom! I also developed a beautiful new bond with my youngest 2 siblings, I was leaving for college and got married with my own family and moved awaywhen they were very young, so we never "really" knew one another as adults. I know how much that meant to mom. I severed ties with the 2 middle sisters who talked ugly about mom, who constantly brought up bad choices she made 30 years ago, who tried to micro-manage every aspect of her life & offered her no empathy, forgiveness, respect, or dignity.

Lit's of work needed to be done while she was in the hospital. Her Medicare was about to expire, her apartment needed a major cleaning (hoarding), bills needed paid & maintained, her Social Security needed updated, doctors & Social workers needed information, yada yada. But none of us were mom's PoA and she wasn't able to do that I'm her current condition. One of the other 2 sisters works with health insurance claims all day long at work, she knows who we'd need to speak to, what to ask for, what to say, etc., after I spent at least 8 hours on the phone trying to keep mom's Medicare from expiring, I reached out to her for help and she told me to "figure it out!" So....I did figure it out. And my sister "J" and I figured out everything else that needed immediate attention as well. We rented a large Rumpke Dumpster & spent over a week cleaning her apartment...with no help from the 2 twisted sisters.
Then we would still have the occasional arguments about things such as PEG tubes. Three of us wanted to wait & see if she would eat good enough to avoid an invasive surgery, at least until she gained some strength. Three of us wanted to find a SNF with in-house dialysis so she didn't have to do an ambulance transport 3 to 4 days a week, whithe twisted sisters said she'd be fine, she could "such it up. I filed for Guardianship & was awarded Temp Guardianship that day! I still conferred with my brother & sister about every.single.thing. they only wanted to complain & criticize, we wanted to DO something-we did
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Southie,

Many of us have different perspectives about life than our moms. I can relate to your posting!
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