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

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.

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.

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.

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.

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.

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".

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.

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 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 💔

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.

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!

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.

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.

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.

How depleted I feel after 10 years of caregiving for my 94-year old mother. I know that I have my life back now, and need to get on with it, but am struggling to summon the energy to do that. I am taking daily steps to move forward anyway: I owe it to myself after a decade of what was essentially indentured slavery.

When people who won't lift a finger tell me I need to smile more and be positive and find a joy in the journey that I will miss being screamed at and locked out of the house.oh and it must be soooo nice to not work and do nothing all day I really hate when they act like I do nothing all day

Having to do everything yourself without any help because he refuses anyone but me.

My wife and I have had to completely give up on goals we had and turn our lives upside down to care for my mom, who had her whole working life to prepare for retirement and didn’t. save. a. CENT. We wanted to have kids or adopt, but that’s completely out of the question since we have a 77-year-old 1st grader who is unlearning every day. I’m just trying to work through a lot of resentment.

My BOTHER ISSUE is I am considerate, caring and my spouse has cancer and emphysema. The emphysema is the life sapper.
Why am I complained, nagged at when I am a good caregiver!
Sub-BOTHER is everyone takes his side and tells me he is bored (he is mobile), Won’t let me do his BP or get on the scale (to monitor fluid retention). Even at MY recent check up (we have same young PCP) he asked me about husband! I may be very healthy for my age and caregiving but I have issues.

I accept this is my doing to myself when I should have followed up on divorce business last year. I did hiss this at him back then too.

He is more frail now. Maybe he is trying to drive me away. I will ask (LOUDLY) next time he acts up.

Thanks for this helpful issue!

Being unappreciated, not only by elderly father that I take care of, but also by my siblings that don't help out and just criticize all I do and don't do. I am the one that sold my house, my husband changed jobs just to bring my father back to the family farm. I have managed his care for 12 years, 8 of it in a facility and 4 years on my own. No one understands what we gave up taking care of dad and no one has time to help out. I hire someone to take care of him when I am out of town visiting my adult children. When they do visit, they take things they want, make a list of things he wants them to have, and one sister has convinced him his attorney is a bad attorney and needs to redo his will. I have POA, but it's a constant battle. Sorry, this is so long, it could be longer.

I just finished a long trek of primary caregiving with my own Mom. A friend of mine who is dealing with her demanding and selfish 94-year old mother texted me in despair yesterday as her Mom had just fallen—again. My friend is 74, and should be enjoying her retirement in peace. She also is a senior herself, and has her own health-issues. What she dislikes the most is the seeming endlessness of it all: she just wants her own life back again. That is exactly how I felt.

My husband was always quite selfish, but now that he has dementia I am just an unappreciated servant. His brothers haven't talked to him in years, our kids are loving but have their own life elsewhere, so it's just us. He has ruined my career by changing jobs and states every time he had a disagreement with a colleague, then left his job at 50 to start a disastrous business in which he squandered his 401K (in addition to playing golf almost daily, and eating out in fancy places with his friends). He stopped contributing to the household because he had to invest in the "business". I have been supporting the family, cooking every night, paying for the kids' tuition, paying off the house, and he accuses me of stealing from him because of course he doesn't remember spending his money. I had to retire to take care of him, and I fear my 401K will all go to his nursing home when I can no longer care for him at home. He is in excellent physical health otherwise, so probably will outlive me, or I will be a burden on my kids. The funny thing, his psychiatrist has reduced his antipsychotic to almost nothing because "larger doses may shorten his life." She doesn't have to deal with him.... Nobody ever asks how I am doing, it's always about him. I am tired! Groan, thanks for letting me vent.

When there is seemingly no end in sight and no one wants to address the elephant in the room of: 90 yo mom is content to have us do more and more including having someone with her day and night, giving up our lives so she can stay in her own home. How long can me and my sibling keep doing this? She’s certainly okay with it. She is declining but even so the more we’re there the less she will do for herself. I can’t get my brother to address what ARE we going to do in the long term. To be honest I hope she has to go back in the hospital so we can have options and be forced to make some decisions. I hate not having a game plan but no one wants to talk about long term but me. Any thoughts on how others handled something similar?

That no matter what I do, or how, or when-- my husband will never "get better."

Just one thing? I wouldn't know where to start.
1. Lack of personal freedom, for starters. Sometimes I feel as though I were in prison with a life sentence.
2. Lack of support. Family, friends... vanish in the air like those cheap fragrances you can buy in the supermarket.
3. Lack of acknowlegdement. Forget that. Just forget it.
4. Maybe you are a man like me and, lo and behold, you happen to have a girlfriend. Chances are she won't understand you. At all. But you will have pressure. Take my word for it.
Arguments, arguments, arguments... ad infinitum.
5. Loneliness. My mother, whom I live with, was diagnosed with Alzheimer's 13 years ago. You can explain to her your problems, just for the sake of talking to a human being, and she would start to sing. I kid you not.
6. You are invisible for administration.
7. Being a full time caregiver of a loved one with Alzheimer's is so overwhelming I've had to come to this web being a Spaniard living in Spain. At least I can vent, although not in my mother tongue.
Thanks for that possibility.

Mine is the feeling of loneliness, cut off from the rest of the world. This is not wed planned for our end of life journey. Friends begin to stop calling, family suddenly don’t want to get involved. I know it’s going to get worse and I can’t stand the thought of it.

That family will ignore somebody that obviously needs help especially in a situation taking care of another family member. Situations that can turn dangerous. That I'm not well mentally. I'm actually on disability for mental health reasons. And have not been okay way before I took over taking care of my dad. The family knows. I've been hospitalized a few times for trying to hurt myself and once was an actual suicide attempt. I finally had to call APS for help.

Not being taken seriously by my disabled partner’s medical professionals when I ask for help.

That I'm sitting here writing on a forum bc I can't sleep bc all I do is worry about what's going to happen and no matter what you plan for nothing ever seems to work out.

The stepkids and their kids giving me “looks” or cutting tone of voice when I have taken great care of their parent. I am leaning towards cutting them out if my life (35 years!) when spouse dies from late stage COPD.

But MY parents raised me right so I take a lot of deep breaths, get my sleep and run my couple miles everyday. But very mean of them. Hospital now and home or facility hospice soon.

I am exhausted but I know things could be worse. Thanks for this forum!