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Thought of another one. People who blithely tell you “you made a choice” - “just put them in assisted living” - while having no knowledge of the complexities, care issues, legal issues, emotional issues and costs.
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anytown Jan 2023
I think what bothers me the most, is the view from some, that if you're having a tough time, that you must be doing something wrong, that if you had done or were doing something differently, it would be easier. This point of view denies the possibility, that there are some situations that are going to be tough, no matter what you do, even if you make the best possible choices, and do the best possible job.
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Feeling anxious and trapped between my love for my 90 plus parents and my love for my spouse and the fear of time lost. In spite of my extensive efforts to problem solve and make the best of a difficult situation, those efforts rarely if ever bring understanding, appreciation or any kind or release from the pressures of making the best decisions I can with the resources and time available.
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NeedHelpWithMom Jan 2023
So many of us have struggled with this issue. I feel for you. Best wishes to you.
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I GET WHAT YOU FEEL.....BUT BELIEVE ME....SHE'S SUFFERING MUCH MORE THAN YOU. I TAKE CARE OF MY SISTER AND THANK GOD WE DON'T HAVE WHAT THEY HAVE. HELP HER LOVINGLY AND YOU WILL FEEL BETTER INSIDE.

ALSO....IT SOUNDS LIKE YOU WOULD DO WELL JOINING A CAREGIVER GROUP TO LET OUT YOUR FRUSTRATIONS AND HAVE SUPPORT FROM PEOPLE THAT ARE GOING THRU WHAT YOU'RE GOING THRU. I KNOW IT IS NOT EASY AT ALL...BEEN THERE, DONE THAT. I HOPE MY ADVICE HELPS YOU.
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SeniorStruggles Feb 2023
Why are you "SHOUTING"?
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Everything. I wish I knew a Mr. Miyagi. Some days I feel like I'm gonna go insane.
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That other people just don't "get it."

We are in the midst of bucket-listing since dh knows his days are numbered. We saw his brother and nieces and nephews in MD (two hours away) at Thanksgiving. On Tuesday, we made a spur-of-the-minute decision to visit his family in WV (three hours away). It went from "I wonder if I'll ever see my cousins again" to reservations made thirty minutes later and on the road an hour after that. It has been a very emotional trip for him. He has wanted to see all the places that meant something to him when he was a kid when his family spent two weeks here every summer. Of course, now we are just driving and looking, not hiking and walking, except he insisted he wanted to see the falls -- 214 steps down to get to the falls, and of course that many back up. He almost didn't make it. We've seen his cousins (and I am slapping myself for not taking pictures). And my father (92) called last night after 10:00 p.m., after we were in bed. He says, "I know it's late, but what-the-h***, you're on vacation." This is no vacation. I haven't had a vacation since 2015, almost every packed suitcase has meant a trip to see him (in Delaware, five hours away) and mom when she was alive. He just doesn't get it.
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I think one of the worst things is the exhaustion. I am the caregiver for my 94 year old, bedridden mother. I cook separate meals for her as she is very picky and has numerous food issues. I change her, change bedding, do several loads of her laundry per week. Several times a day I reposition her, with her telling me that what I am doing is not right, not comfortable, etc. I dispense medicine, deal with the hospice nurses. I get up at night to deal with her pain, reflux, or inability to sleep. She has started episodes of crying and saying she is lonely and wants me in the room more to talk to her. I handle financial issues, pay her bills, update all the relatives on her condition. There are times when I am so physically and mentally exhausted that I can barely think.
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anytown Jan 2023
I think most people have no idea what a brutal merry go round it can be. It never stops.
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The exhaustion, the endless worry, the constant guilt, the resentment and frustration. Anger that I feel like my life is passing by while I take care of everyone else. Too exhausted from being a caregiver and holding down a full time job to have any kind of social life. Feel like I'm no fun at all anymore. Even my dogs seems depressed. Feeling like you aren't doing enough or doing right by anyone. And not knowing how to end the cycle or what to do to fix it. Can't have an aide in the house 8 hours a day as my dogs don't like strangers, don't want to lock the dogs up all day, can't have someone live here, no more rooms. And I don't want to admit defeat and put him in assisted living. And now the tears come. I guess there isn't one thing that bothers me the most. It's everything.
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Kellae74 Jan 2023
Shelley, I can identify with everything you expressed. I feel like I am losing my mind.
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Dealing with all the demands of the medical system—a lot of what goes on seems lacking in common sense and/or clearly insane to me—very difficult to trust a system that’s run for profit—
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anytown Jan 2023
This is a good point. There are times I wonder if I serve it, or if it serves us. There have been days I felt like I was just going through it's motions, to keep from getting on the wrong side of it. (fortunately not the majority of the time, but there have been a few days)
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All the boomer stories. The repeated past stories that my mom remembers in 10 different ways. "I had a great childhood " one month, and the next is " my childhood was awful!" No connection or warmth from my mom just the endless stories.
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That is funny! I see the same thing! My mom is all "About Her" too.
Shows little feeling for her children and is only happy when she gets attention or eating over her children's house for the holidays.
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I think I could probably deal with my MIL if she had Alzheimer's... maybe. Mine thinks that the sun rises and sets around her. She does absolutely nothing all day but expect my husband or myself to do something as simple as make a phone call to request an order catalog after we have been working all day.
She is the most annoying person I have ever met. She lives next door to us and can tell you more about our comings and goings better than we can.
She is my husband's mother but I have never felt like she fit in with our family.
Its to the point I don't want anything to do with her.
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With the crummy and overwhelming day that I am having, I'd have to say "the one thing that bothers me the most about care giving" is - EVERYTHING!
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When my father passed I was devastated! I have 5 brothers and one sister. I was always pushed away from parents, meaning I alway heard you made your bed lay in it! I wasn’t allow to participate in dads funeral/burial. Now mom got her self in a pickle, allowed a 30 something into her home, he hit her, stole her money, and so much more! Mom lost weight down to 100 pounds. Iapplied for GDN I evicted him from moms home. Sibs petitions for reduced limited GDN, they wanted to help mom, LIE! They never gave her the meds, never checked on her. Then I was I’ll with pneumonia, 4th oldest called me, moms going to hosp via ambulance! Mom had Covid! 14 days in hosp. Receive call from doctor, sending your mom to nursing OH! So I disagree. Mom came to my place, I thought she was going to die, I couldn’t sleep kept thinking not on my watch. She’s well, she back to her normal hateful self! With mom I’m not sure it’s dementia, or her normal self. She throws shoes at me, calls my grand kids names, accuses my husband of cheating on me, breaks my thing, cusses at me all the time, threw a temper tantrums until I took her to withdraw money from her account, just to prove I wasn’t stealing her money! No respect for the person who kept her from nursing home, or passing away. Care giving is painful, but I still don’t think I could bring myself to put her in nursing home!
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Resentment towards my parents for not being financially prepared for their later years and me being their retirement plan. Always feeling anxious that a medical crisis is on the verge.
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Hothouseflower Dec 2022
I’m going through the same thing.
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@JeanLouise

There's no reason why you shouldn't have been able to go to the calling hours or anywhere else alone.

'No, I'm going on my own'. Then let that be the end of it. The guilt-tripping is something you're going to have to learn to defend yourself against. The way to do this is to allow yourself to understand this plain truth. If you have no life that isn't centered around his needs and demands, you won't be able to care for him.
No one wants to develop resentment towards a LO they care for because it often turns to actual hate.
If your husband can be left alone, start going out on your own. Even if it's only to the store or out for coffee with friends. You do not have to tell him where you're going or who you're seeing.
You are an adult not a child and he is not your parent.
Hire a care companion a few hours a week to take him out without you. It will do both of you good. The two of you can go out together with the companion who will take care of hubby's needs and with the caregiving not on you for a little while, maybe the two of you will have a good time.
Please bring in some help. Being a care slave is a wretched existence. All caregivers must down time. More than the odd hour here and there.
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frizzle Jan 2023
I am having trouble finding a caregiver who will come a few times a month but not on a regular schedule. The caregivers want to have the same days and times every month; that's not always possible with appointments, car repairs and other reasons to not be home all the time. I understand their points of view and need for regular hours but my life is not on a schedule, far from it!
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Well, my resentments are in the past now (and we will have no part in caregiving mil, if it comes to that). What I remember is the resentment that I was expected to be at my mother's beck and call (so glad I didn't live with her!). She made clear her disdain for me, while my out of state brothers didn't have to do much of anything.
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My abusive mom.
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bundleofjoy Nov 2022
hug!!

“Stay away from negative people. They drain your energy like vampires suck out human blood.”

“You better go alone, than with negative people.”

“They like you more when you don’t challenge them. They prefer to have an upper hand over you.” 

“Unhappy people can be very dangerous, don’t forget that.”
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There are so many things that bother me. Waiting for the other shoe to fall for the next crisis. The worry when I make any long term plans that I might not be able to go, The resentment I feel for the assumed expectations that my parents are putting on their daughters for their day to day home care, never considering they need to move to a facility. The anger that my parents had their heads up their collective you know whats about their estate planning. The disappointment watching them blow through all their money without having any financial plan. And finally the loss of my compassion.
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Wish ppl would acknowledge that being a caregiver is hard. Would like an "atta boy" or for someone to show they care abt me, too. An afternoon out or go out for a meal would be nice. No criticism or judgement. Maybe realize that I'm not all bad...I have worth. That's all.
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Hothouseflower Nov 2022
The fact you are doing this means you are worth a kings ransom. Never forget that.

My father is old school Italian and thinks I’m useless because I don’t have a penis. My mother doesn’t like me because I don’t sugar coat how unsustainable their living situation is. I realize just my being here helping out is enabling them not to make any decisions . My mother and I just had a huge argument. To her I’m the evil daughter which is fine because I’m the one that lives 3000 miles away. Just don’t care anymore. Going back home next Thursday to celebrate Christmas and take a family vacation with my daughter and grandkids. My parents can go figure it out. I will be off the grid from 12/26-1/2.
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Can relate to the initial post so much. Disabled and live with elderly parent bc we're both on fixed incomes. But, with them 24/7. Relocated to be near family member who wanted us closer to help. They help but I feel there is some resentment sometimes. With her 24/7...literally. Don't know ppl here & disability causes mobility issues. Thought sibling would hang out with me or let me ride along but not. If you aren't a caregiver 24/7, you can't understand. Don't want parent in a facility. Usually it's ok but then I find myself yelling and being corrected. No more interest in hobbies or leaving the apt. Feel like a problem instead of someone taking care of parent. No thank yous or acknowledgment. Doing something they don't want to do yet still seen as a loser/waste. Been a hard night.
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ventingisback Nov 2022
I wish for you (if that’s also your wish), that you could just move and live somewhere you’re happy.
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Frightened, tired, fog brain, alone, getting it wrong. House a mess, functioning and keeping focused x
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The exhaustion. I broke down crying to the general contractor who has been doing work on the house. (Embarrassing!) He gave me a hug. He's been through the same with his mother.

It's exhausting. The finances. The caregivers. The home maintenance. The meds. The travel to get there. The medical required diet. The ordering of supplies. The demands on me....all the time.
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ShiftHappens Dec 2022
I feel you. I’m a full-time live-in caregiver for my Dad. Had to manage getting him to and through dentist appointment today. Broke down crying in front of the hygienist and billing/receptionist lady, when I just couldn’t hold it all together any longer. Seeing the $1,400+ estimate for his dental work was disheartening enough to cross the very thin line I’m typically balancing on to hold back tears. The sentimental Christmas music playing over the room speakers didn’t help any.
We just recently started leaning toward starting help from hospice. The receptionist/billing lady actually almost cried too, saying she understood and she went through similar with her mom, sixteen years ago, and still is painful.
I guess we’re not as alone as it most often feels.

Do some, any, little thing to be gentle and kind to Yourself that you’d usually talk yourself out of. Best to you.
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Loneliness
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AliBoBali Nov 2022
Hey Tagtae, so many caregivers can relate to loneliness. I was isolated during caregiving, and thankfully I found this website. If you want, check out and participate in the ongoing social threads. You can meet some caring people here who will support you in your caregiving journey and have some social fun on here.
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Ok you made me laugh. I feel your pain. I know exactly what you mean. Never about you. You are not alone in this feeling. But I really needed to hear other people feel like this. Then the darn guilt is like what are you thinking. It’s good to be able to see other people know exactly what you’re feeling. Hang in there. Thanks for sharing this. I needed it.
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My husband has Parkinson's and memory loss. I'm his sole caregiver. It's hard and some nights when he's woken me for the 3rd or 4th time I wonder how long I can go on but he's pretty easy to care for in general. I take him to adult daycare 3x a week. We go for walks around the neighborhood on the other 4 days and attend occasional events with neighbors. He was always a loner and doesn't have any friends that come to see him. We visit my folks about once a week. His only blood relative is an "adult" son from a previous marriage. The son lives 1.5 hours away and makes a feeble attempt to contact him 2x a year- a 5 second voice mail, a 1-line email. He showed up out of the blue for the first time in 2 years and my husband wouldn't come to the door to see him. It was an unpleasant encounter, with him insinuating I was keeping his dad from him. I said his behavior and insinuations were making me uncomfortable and that I was calling 911. As I was talking to the operator, he got in his car and drove away.

Now I am told that my caregiving, has put me in a position of "undue influence." That the law assumes it is so and the burden is on my to prove otherwise. I'm gobsmacked. Let's get real- the son chose to have next to nothing to do with his dad. We've seen him on social media (I'm sure he thinks we're too dumb to find his account) with his friends- hiking and vacations, weekend getaways, dining out- living his best life. My health is affected, my sleep is affected, my job is affected, my finances are affected- and all so I can be accused of "undue influence?" That is the worst thing about caregiving so far.
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anytown Nov 2022
'My health is affected, my sleep is affected, my job is affected, my finances are affected- and all so I can be accused of "undue influence? That is the worst thing about caregiving so far.'

^^^THIS

Giving 24/7, and defending yourself to those who do.......nothing.
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what bothers me the most? some people's lack of empathy.

i think it's really true, that unless you have done it yourself (helping an elderly LO), you don't realize all the work, effort, time, stress, etc., etc., etc., etc., that goes into it. i think some people even have the bad luck of having family members who enjoy seeing you suffer, who enjoy burning your life down. sadistic.

you must keep your head up. rescue your life.
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anytown Nov 2022
'i think it's really true, that unless you have done it yourself (helping an elderly LO), you don't realize all the work, effort, time, stress, etc., etc., etc., etc., that goes into it.'

Very well put. If someone has never done it, they do NOT get it. Not even close.
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Medical appointments, it seems more and more of those as disease progression happens. I am full of energy otherwise but drained with each of them. Some seems to be redundant, yet, how do we or drs know.
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Mikurotoro92 Nov 2022
Yeah

All the CAT Scans my mom has had over the course of 3 months is just CRAZY!
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I have no regrets for all the help I gave my mom. I’m proud of all I did.

BUT…
the undeniable reality, is that it has set my life back for years. I have a lot to catch up on (caregiving has affected my career, my…everything) (my mom is abusive).

I’ll get myself out of this set-back.
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notrydoyoda Nov 2022
I wish you well in your recovery. Honestly though, the following sound like regrets to me and I affirm them as regrets "has set my life back for years, has affected my career, my…everything."
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Nothing is ever really resolved. Same old stuff again and again.
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Many times I have said, “Im treated as if I’m a figurine on a shelf.” No life of its own. No needs of its own, just a service piece. “Oh figurine, where are you? I need to know you’re on the shelf where I left you. “

At a close family friend’s funeral recently, as we stepped into the vestibule the bereaved husband saw us and began to sob. My mom threw herself into his arms (his young sons were dressed in black suits standing around him) and my mom sobbed loudly, “oh, (his name), I have terrible news I just heard this morning that my BROTHER is dying, I don’t know WHAT I am going to do!” Everyone looked disoriented and fortunately my husband acted quickly and peeled her away from him saying “Not now, we are at (his wife’s) funeral.

We are all selfish from time to time but This level of self-absorption has got to be some type of mental illness.
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notrydoyoda Nov 2022
It is a mental illness. It sounds like narcissism plus possibly being a borderline waif sister. I'd have to know more about her relationship with her brother.
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