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

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.

Husband just had stroke. Knowing they don’t get it doesn’t make it easier give yourself a break. I will be doing five things at once and he will ask me for something right in his lap.

He has always been that way if what I am doing is what might be considered domestic or “women’s work.” We also worked together and he respected my “intellectual/professional” tasks in the office. It’s a weird dichotomy. I used to snap or yell at him before he got sick. Now I can’t he looks so vulnerable it breaks my heart but I still feel that surge of WTF?

Can’t you see I’m doing the five last things you asked me to do? Then I feel like a complete bi**h yelling at a child!

I feel like life is on hold while I wait for the next shoe to drop with my 94-year-old father-in-law, whether it's the next ER adventure or another cleared check written to a grifting aunt or a new fraudulent charge on his credit card or predictable outrage when I refuse to buy OTC medications that might interact with his long list of medications. Even so, I know we are lucky because he resides in a good assisted living facility with resources to cover the costs. My heart goes out to those of you who are full-time caregivers sacrificing your own retirements.

You need to educate yourself about dementia.
Yes, when a brain starts to die ... when brain cells die ... this is what happens.
Your confession is one of a lack of understanding what dementia is.

This is old I know, but the problem is relatively new to me as being a care giver for just 4 yrs.. She is my mother, she worked hard low waged jobs to keep a roof over our head & food on the table. Being widowed when I was just 3, my lil sis 1 day shy of 1. Dad died on the 23rd of Dec, Barb was born on Christmas Eve. So this time is especially hard.
She is the reason I never had children, for I seen she gave up her whole life for us.
My 1st MIL called me selfish, yes I guess I was!?? I worked hard, I played hard & the responsibility of a child scared the death out of me.
But now I have to be the mom, she has no one else, I have no experience but I know compassion, I know or think I do what is right. That is me as the only surviving child of 5 & her the only child of 7. Who else but me!? I really dislike the fact that it has come to this. If I had known I would of had kids but I didn't & now I will have no one to care for me & it is her fault, but the love I have Makes one think.should of, could of ,would off!
So my answer would reality, that she made me face, that never crossed my mind.
I' be become a mama in my 60's & if she would of trusted me always as I have never done her wrong, she wouldn't be in the place she is nor would I

That I don't know when I will be able to go back to the life I had. My dad is in hospice but he declines and then recovers over and over. I get frustrated by it and feel like I will be in this situation for the rest of my life. I know it's not true but it is the one thing about my situation as a caregiver that bothers me the most.

I wish I had never done any caregiving whatsoever for my mom. There was no end to what she would have me do while she would not ask my brother the golden child to do anything.

For 3 years I put up with it while she had dementia and after an argument with my brother telling me how he wanted me to do everything because he had POA & he had “control” I finally told him I was done & he could do it all himself.

Well after that he took my mom to an attorney & had her amend her trust removing me as 50/50 & leaving everything to him 100%.

Do not do any caregiving without having medical & financial POA.

I’m so glad found this page. Thank you all! I’m taking care of my 93 year old mother, who I’ve had a very difficult relationship with, so many unresolved issues. I know it’s too late, but I feel like if she can still talk, why not just say “I’m sorry”, two words? For abandoning me to foster care from 15-18, not speaking to me until I was 20, out on the streets alone, so many things I’ve tried to resolve for decades, not sure how I can stop trying. It’s hard because my body broke down decades ago from so much trauma, but now I’m the sole caregiver to her, giving her everything I’d wanted as a child. After a housefire, she told me in the trauma ward that she was “leaving me the condo”,( but for now I should go to a homeless shelter because her new boyfriend didn’t want me around), which would have been my only source of history and identity, in a way. And after so much instability after refusing to help me get an education, though everyone else has PHDs in the family. Then she decided, I found out last week, on Christmas Day, that she’s moving herself somewhere else, I heard it from her upstairs neighbor, “I’ll miss my favorite neighbor!”, I asked “who’s moving?” We speak everyday, I support her every eyelash, but the fact that this affects me is laughable to her. I want to scream at her “You’ve betrayed me my whole life, and now this?”! But then I’d feel so guilty and she’d make sure I did. Of course I’m so happy she made a descion, I live 5 minutes away, but not with her, she wouldn’t want me, but she went ahead with this without involving the one person who’s life it will utterly change and affect. My friends tell me their parents told them decades ago what they were planning for end of life care, and I’ve tried until I’m blue in the face to know what she’s decided about not just hers, but MY life. She always got pretty violent so I shut down and kept loving her anyway. I just feel unseen, unheard, hurt, I hate myself for loving her and needing her, for my body breaking down, losing everything I worked for for 62 years, for entering this Faustian bargain with my very survival, instead of not having a family,now no stable housing in my life, ever, and I’ll face the grief of losing her with nothing to hang onto or help me. I just don’t know how to do this. I know I’m venting, sorry to, but I am glad to find this page. I’m sure every caregiver( who’s related) has dynamics from the past that make things harder, heck, it’s hard enough to watch a loved one decline and fear the grief, while in” pre-grief “and grieving what will never be resolved can be part of all the other losses. Thank you all for your honesty, it’s helped me tremendously.

I don’t remember if I answered this before but here it goes. I feel I always had a caregiver heart. I was my mom’s caregiver. This has been over 20 years ago. My mom was diagnosed with cancer so I Thank God it wasn’t years of caring for her. I in my mind said to myself I’m never going to see her again after this. So I stopped working and at the time I had a 10 year old and I was a single mom. Yes! It was hard. I did have some help from outside programs. I didn’t have help from any siblings. We were 8 of us. Two of my sisters have mental issues. My dad was an alcoholic. Two brothers have passed before my moms passing. When my mom passed my baby sister shows up afterwards and what I hated about her coming around was her bossiness. Where was she when I needed family. She never called. Years passed and I have been a paid provider for my two sisters on and off but it hasn’t been easy. Now I feel I’m So Done with my family. I never regretted taking care of my Mom. RIP.

My retired sisters living their best lives while I am looking into govt assistance bc my unemployment and caring for our mom who needs monitoring due to her memory loss and anxiousness.