What is the one thing that bothers you the most about caregiving?

Deadbeat family members. My neighbor's daughter left for a European vacation after her Mom fell and broke her left shoulder and her right hand.

She has to get a shoulder replacement. The neighbors are doing all of her care until her surgery. My boyfriend is spending the night and getting her into and out of bed. Several neighbor women and I will be doing her night before shower and day of shower.

I cannot believe the daughter left to go on her European vacation. Daughter should have sent her husband and the granddaughter on the European vacation and daughter should have routed her ticket to help her Mom.

These people have some financial wherewithal.

That our siblings could careless about her nor do they go visit her in the hospital. She’s been in hospital 2 months 5 Days today!!! She doesn’t understand, she cry’s for them just about everyday.

Guilt one million percent! My mother never put me first, and now, my reality is putting her first. My daily routine is get ready for work, go to her house for an hour (she lives 40 mins from me), work, home, multiple calls to her. I want to share that my job is providing resources for the community, so the calls I handle are mostly exactly what I go through daily. My brothers are in their 70s and live in another state, so it's just me. One sends money, one does not. I now wake up sad lately, I feel that my cup is full of other peoples stuff. There is no room for me. I am the youngest of three children and my childhood was a mess to stay the least. My mom married multiple times to alcoholics so I endured multiple forms of abuse. Most days I am good, but right now, I am not. I do see a therapist for many reasons and my mom, and my trauma from her decisions are a big part of that. I just feel enormous guilt if I don't go or call. My Mom has arthritis throughout her body and has taken opiates for 15 years. She has ran out twice in the last 6 months and she aims all of her nastiness right at me. If you met her or talked to any of her friends they would not believe she can be like that. My husband said to me the last time that she may not be here next year and would I be okay feeling like I feel. I told him is she continues to treat me like that I don't know how bad I would feel if she wasn't. That's a horrible way to feel about your parent. My Mom is the dealer of guilt and shame in my life and I am the addict. It's a terrible cycle, and I am burnt.

Yup..we are Invisible! The dementia patient is everyones concern..I hate it all. Love my mom but hate the disease and workload..{mental and physical}. I will never care-give again..I plan to stay single with no partner. Year 7 just started with mom deep in Lewy Body..moms 91 and this may go on until she is 100…I will be 83..that IS forever!

In my situation, while I was sharing caregiving duties with a sibling - it was dealing with their very dysfunctional relationship they had with each other over the years. With her needing care and him in charge, this put their crazy relationship front and center, and bad family patterns just seemed to multiply - at my expense. It was miserable. She continued to work me like a dog while refusing to ask him for the things she readily asked of me. I'd show up for my few days of caregiving every week, and she just scowled as soon as I got in the door...but then changed her tune to being grateful after my 3 day "shift" was over. Sibling in charge is a raging narcissist, never "allowed" me a break from caregiving (this went on for almost a year, and I was out of state, had to commute to give her care), so I had to put up with his abuse while this went on for a long time. It was THE worst time of my life, and I am filled with anger and resentment over it. Caregiving is hard enough...add in crazy folks who are dsyfunctional with each other? Nightmare. I will never be a caregiver again! I've also taken care of other family members over many, many years, so I am all burnt out and done with caregiving. Sounds awful, but it's true.

I was a caregiver for my mom and all got from my siblings that never were there for her was blame and me for everything, blamed because she die after a horrible TBI at 81 with multiple health problems, today is her burial and didn't go just to no see them i feel so betrayed by them 💔

Everything. To be blunt, I despise all of it. I do it out of obligation, guilt, expectation, and trying to “do my fair share” like my siblings. But no matter how I slice it, I am filled with rage and wish I could disappear so people would stop demanding my time and stealing away my own precious life energy. Yes, I love my parents. No, we are not emotionally close and never have been. I do not enjoy spending time with them; I dread it. They both have dementia and a whole slew of other health problems. I want to move away and escape this nightmare existence.

I spend a lot of time hating myself.
I just spent a weekend away with friends and I felt like me. I was free and didn’t have to have endless arguing about: why a shirt had to be changed, a shower scheduled for Monday/Wednesday/Friday, or why “these people,” (it’s really me, but I’m now often just, “these people,” to my husband), are always scheduling physical therapy, doctor appointments, and other things, and are “never telling anyone ahead of time.”
I feel like a terrible person most of the time. I’m 73 and nearly died last year, but when I was sick my husband was still overly concerned that he wanted food, felt cold, didn’t think he needed a shower or a change of clothes, and didn’t want to have his life disrupted. For the most part my husband didn’t seem to even notice that I’d become ill as I lost the ability to walk, stand, lie down comfortably, and even breathe.
I’m an old lady that only has caregiving ahead of me. this has gone on long enough that I no longer have any patience left. we built back a lot of cognitive skills after each of three strokes, and now it’s Alzheimer’s and there’s no building back.
I don’t want any more of this. I plan and organize, thinking I can come up with a plan that’ll make this easier, but it never seems to get any better. It’s like I’m the world’s worst wife and caregiver, but there is no way to improve and I can’t just walk off the job. No amount of reading and figuring everything out really fixes anything.
I know nothing is his fault and each day when I grow impatient and lose my temper, it’s just my fault. He can’t help anything, and I seem to be getting nothing right. The hardest part for me is that I feel incompetent, but I can’t walk off the job and look to see if someone else will hire me for a different job. I’m tired of being a terrible person.

Never a break. Increasing hypochondria. "ALL ABOUT HER" is correct. My charge even told her doctor (after experiencing some hoarseness) "I need some attention." She wants everyone to wait on her and entertain her. Tells me it's "easier for you to do".

Being an only child is great until you're taking care of an elderly parent alone. I guess what bothers me the most is that I am basically doing this alone and have put my life, marriage, kids and career on hold.

Yes, same here. Yesterday I was unloading packages and had both arms filled to the brim with heavy things and the comment I received was, “Did you get it all?” No help offered or concern. I also HATE the incontinence and the fact that I am the only one who continually cleans everything up.

Loss of living almost all of my own life and personal freedom: little to no personal life, almost 0 autonomy, existing as a 24/7 domestic slave, never ending list of things to do, constant stream of things to do around the clock, interruptions when I do get a few minutes to myself. For example, going around the clock day and night providing care by myself and then taking a few minutes to eat a sandwich (only one in 24 hours), and getting interrupted while eating to take care of something else urgent, or to be bombarded by verbal diarrhea from her about what else she needs, wants, thinks, feels. It is like I exist as a caregiving machine and for no other purpose, there is no room for much of anything else for myself. The feeling of losing out on living the one life I get on Earth. Seeing people get to do normal life things while my life is an unrelenting grind of 24/7 around the clock caregiving.

Also, the odd juxtaposition of callous and breezy "sympathetic" attitudes of people who coo out statements like "oh she must have been a great mother to get so much care". It's like, "um actually, there are not enough f*****g resources". They exist theoretically on paper, but then when you go to access them it is hostile infrastructure and you can't. For example, LTC insurance with a PDO program allowing patients to choose a family member to provide care. Yet, then the insurance tries to get out of paying for full hours needed due to the caregiver "living with" the member and possibly benefiting from the services rendered to the member. Literally, they refuse to pay for all care hours needed, even despite repeat letters from the member's physician. They deny appeals, then tell you to go to a hearing. It is all so exhausting physically and psychologically and financially decimating.

Also, let's add in the ridiculous well-meaning advice from articles and people who haven't a clue... "you need to take care of yourself"... "you need to take time for yourself".. ."well, no sh*t?" Are you going to pay for that? What time are you going to be here? Are you going to spend the night so I can get a night off?" When you do get help it is often more work. For example, it is only a small sliver of time, and you have to train the person, then observe and correct them. Some respite care service providers are questionable and even dangerous (stealing member's valuables, unhygienic, yelling at member, etc.).

Also, people you thought would be there for you disappear. Caregiving is incredibly isolating. Had a friendship with someone for about 15 years. Moved out of state to care for my mother. No one to vent to, thought I could vent to the old friend perhaps. Person told me she didn't want me to send her anymore "venting" texts, it bothered her. That's even though she knows I am in the fight of my life over my eyebrows with this unrelenting caregiving. No one wants to hear you vent. People seem to want to avoid you and your "situation" with a 10 foot pole of distance because of the natural real drama of it. No one wants to throw a lifeline themselves. They just tell you to reach out for services, and when you contact them, it's like hot-potato and they want to pass you to someone else.

I call it the caregiving cliff. It is where women fall off from participating in life and society deep into caregiving, where they are essentially in around the clock underpaid or unpaid domestic servitude. It's another form of the subjugation of women and it is systemic. LTC insurance companies rely on family (often women) to step in as the member's PDO caregiver, and then cut hours or not give nearly enough for real labor performed.

This reply included a few things, but I am tired. Tired of myself and other women being taken advantage of, used, assumed to be machines for the benefit of everyone but ourselves.

Agree 100%. After three years of getting my 91 year old father to and from dialysis (shared responsibility with sister and a family friend) I’m just tired of having to schedule my week around it. I never thought he would have lasted this long, especially after our mother died a year and a half ago. He has some level of dementia and he will never voluntarily stop dialysis, and my sister is POA and is not ready to tell him to stop. My resentment at this point is overshadowing the decades of our relationship prior. His mother and father lived well into their 90s, and he has a 95 year old brother. Looking into options to pay others (relatives, etc.) to take over my shifts. I am still working full-time. I think we’ve done our share getting him back and forth for 3 years. I appreciate this forum for allowing us to vent.

For me it's the unknown timeline. My father has needed help with managing finances and household tasks since 2013 but his dementia made it impossible for him to live alone as of 2023. He has lived with me for 2 years and, honestly, I expected him to decline. He has not. So I'm really not sure if I'm looking at another 2 years? 4? 10? I find that having my life on hold to serve him is making me feel very resentful and depressed. He's 85 and was not very involved when I was growing up. He doesn't have any savings at all. He only needs "custodial" care (supervision and help) so he doesn't qualify for skilled nursing. I have him on the wait list for supplemented assisted living, but that waitlist is years long. It's just depressing not knowing what the commitment is.

For me, it was seeing someone whom I loved so dearly in so much pain and suffering. My mom was the strongest woman I've ever known, and she worked so hard all her life to help others...I am still coping with seeing someone like her suffer so badly before she left this Earth. Not being able to move as she pleased, reliant on others for everything from bathing to using the toilet to eating. Emotionally, I will never be the same.

Sendhelp

Thanks. Nor is my real citizenship here in this state and city in which I temporarily reside in the USA. One day, I'm going home. I may have someone add to my tomb stone as I saw once in a very old cemetery, "Peace at Last."

The lack of TRUE help with financials and actual care from states!!! The states look at you and treat you as imbeciles.

Notrydoyoda,
I am reading your posts.
You are correct, this is not your real home.

The strong likelihood of making some bold moves for the sake of peace, the life as my son says I sound like I don't deserve, My current context basically makes self-care and having a life impossible. I'm not the only saying that either. I will know after this upcoming week if I will set a meeting with a lawyer to learn about my options. My youngest son has wanted me to do this for months. If this takes place, then there are 2 whom I never want to hear about or from including their funerals. From my perspective, I died decades ago and only have existed as someone useful period.

Dealing with my sister. After my mother's death and with the sale of the house my relationship with my sister tanked. She has blamed me for every last thing that has gone wrong. It's been pretty ugly.

I'm back in NY visiting my father. We have been avoiding each other, which is fine.
I am tired of walking on eggs.

Dealing with personality disorders such as my mom's, wife's and her mom's. At least I'm only visiting this planet.

The years-long emotional rollercoaster.

Pipsqueak doctors that don’t have a freakin’ clue.

Resistance to care or help and interference from family that doesn't provide care

Resistance to care.

That siblings expect too much while they do nothing but rarely visit my Father. I am working part time at my Father's company working on taxes as he owns multiple properties bills bank deposits keeping registers balanced dealing with senior living center and health insurance companies. I have health issues also in a lot of pain and I am in my 70 s.I have done for them their children and grandchildren. They have never asked can they help me with anything? I have been alone for the past 7 years. They do not care about the multiple health issues I have. I go see my Father almost everyday. They are terrible. The only one that helps does what she can but is younger and still works a lot. Others do whatever they please. I have to cancel going places and even appointments. One sister has been home 7:, days a week and does nothing. I am worn out

WHat bothers me most about some hourly paid caregivers is that when I get a new client who has had a caregiver as that caregiver did nothing but sit on their butt and get paid for it and this has happened before I go in and the house is so dirty and the dust has accumulate so .especially in homes where my clients have respiratory issues with ALS or COPD it's so irritating the first thing I do is go in and move everything and super vacume and dust . It's like the agency's don't check to make sure paid caregivers are really doing their job . And it is the client who we are suppose to help that is suffering .what can we do about this problem of lazy caregivers

I’m still processing that I am no longer the primary caregiver for my 94-year old mother as she moved out of her apartment to a retirement home in another city close to my sister.

One thing that I struggle with is the term ‘family caregiver’. It implies that being a family member is synonymous with being a caregiver. What I disliked was what a slippery slope it all turned out to be: my proximity; Mom’s immediate needs; family expectations.

I never want to be in a situation like that ever again. 10 years of my retirement was a long time. It turned out to be a marathon.

My father is in memory care. They are wonderful. I visit once a week to have eyes on him. My brother visits 2-3 times a week. I am the person managing his finances and making decisions in general and my brother is #2 for those responsibilities. The other two siblings are not involved. The process to get him in this ideal setting was long and stressful. It's down to where I handle his finances and decisions about him, and am first on the phone call list if the staff needs to call. The staff has been told to deflect requests from him to call anyone himself. He is 99 and looks 79, except his mind is gone! He was very frugal and I am spending his money for his needs now. I doubt he will make it to exhausting his money. Thank goodness my stepmother encouraged him to make a will and a POA, as the POA has been beyond invaluable. So, he's not in my home with me as a hands on caretaker, but I do spend some time on him still. From another question in this newsletter, I am going to start giving the MC periodic updates on when his money may run out. I will be applying for Medicaid in that event. The hardest thing so far was an episode, after dementia set in, when he was lashing out about all his kids. I have not borrowed any money from him as others have, but he made a comment that had to "beat me off". And, here I thought he enjoyed helping me with projects, using his skills, and spending time with me. Evidently I was bothering him, but now I know how he really felt about me and the rest of my siblings. I was hurt and pissed off and have not got over that. That's been the hardest thing.

I can't go to church without it causing guilt trip problems at home, and my wife doesn't care for gong with me. I'm in a catch-22. I pray that this season of my life ends before Jesus returns so I can get that back on track with the life I want/need to lead. Right now, I have to rely on the grace that was paid for at the cross. I think abandoning my wife would be a huge sin. I want to keep her at home as long as possible. But I also need to obey God.