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

My parents didn’t do any caregiving for their parents so they truly didn’t understand how hard it was for me to do caregiving for them.

I wonder if most parents who did care for their parents, if they expect it from their children. I have told my girls that I never expect them to do caregiving for me.

My caregiver days are over but I felt like they would never end. It’s a hopeless feeling.

Wow the non awareness for the caregivers is a common thread here. I thought i was alone. With my dad being constantly rude or all about him 24 /7

The one thing that bothers me the most is my dad thinking I should drop everything for him and not really wanting me to be happy.

Reading again, answering again after nearly 2 years of care for my mom. What bothers me most is the separation from my husband and all my kids. We are living in two different states and making it work. I'm not looking for sympathy. We chose to make things work after a full family move became impossible either way. It is bothering me the most right now. I am grateful for the space to say it. It feels good to put it out there. That is all.

LightnLife - by saying you're making it work, you mean it works for mom, but it seems to me it doesn't work for you/spouse/children. In any case, glad you come to vent. We all need to do that sometimes.

84 y o Mom makes poor financial decisions and had to sell her house (to a friend, she's still living in it/paying him rent.) She has enough money to buy a new smaller place but wants a unicorn: One story, no stairs, garage, but a condo/townhouse so they'll pay for roof and maintenance, within a few miles of her old place but close to medical facilities.

This doesn't exist. She calls me every day wanting to talk it to death for hours but I can't wave a wand and make her perfect living situation happen. I can't seem to get her to realize she'll have to let go of at least one of these "wish List" items. Anybody have an elderly parent in a place without a garage? How's it going? We live in the mid-South so storms are more of a concern than cold weather.

its a roller coaster and very demanding and depressing job. I feel sad that my life is so different. Thought retirement would be our golden years, and along came Parkinsons. I love my husband and he sure didnt ask for it but the job is endless. Managing house, shpping, cooking , finances, meds, endless dr visits and appointments-its overwhelming . Even with help i feel like i live in a “nursing home”. Hes a fall risk and so has to be watched and constantly reminded to “not back up”
has had fractures, utis, numrrous cuts and scrapes - didnt mention the loss of friends because of limited mobility

It all depends on the day. as of today is the repeated over and over and over questions with the same answers (ughhhh). The loss of my personal life 2nd. The financial drain 3rd. And now the new twist the rebellion and aggression towards me 4th.

No freedom!
My DH needs 24/7 care due to brittle diabetes, incontinence, bleeding wounds, heart attacks and falling risks from a traumatic brain injury.
We have wound care, PT & OT 2x weekly which are invaluable. But I need to get away, alone, for at least a week after 19 months of full time care following his brain injury and surgery.

My mom wants to be waited on hand and foot. She has terrible bouts of diarrhea and messes on herself. She rinses her clothes out in the bathtub and hangs them to dry instead of telling me and letting me put them in the wash. She keeps telling me she is showering but there is never a towel and her hair always looks dirty, its to the point I have to tell her if she wants to go somewhere she has to shower first. She can still get around with a cane but she is very slow and refuses to be put in a wheelchair. I am burnt out, I cry, sad, we have had to miss my husbands family reunion, our yearly trip to Florida because she doesn’t want to go to Florida. Its what she wants to do or we do nothing. I have 2 sisters and 2 brothers and none want to take a turn to give me a break. My husband is a big helper, he does what he can for her, he takes care of her banking and her doctor appointments. I couldn’t do this without him. Our grandsons will not visit because she “ weirds them out” whatever that means, they live an hour away and I haven’t seen them since February. Mom told me yesterday back in her day when you got old your kids automatically take you in. I want my life back, I am in my 60’s my husband is 70 and we deserve to enjoy what time we have left. I hope I don’t sound selfish but after she passes we may be to old to enjoy the things we want to do.

I am so sorry, Linda.

My mother lived in our home for 14 years. Towards the end, I was burning out too. I understand how you feel.

Caregiving full time is very challenging, stressful, difficult and exhausting!

Everything. And I find my situation very unfair. I never asked for this to be dumped on me.

The oxygen getting sucked out of my home and my life.

The thing that bugs me the most is that I have to almost drag things out of people who are supposed to know, who are "experts" on Alzheimer's/dementia. I have been doing this for my DH for 6 years now. I've read anything and everything I can get my hands on and almost none of it pertains to us!

I have recently decided to "place him" in memory care as I am about as overwhelmed as a girl can get. This is not like calling for a hotel reservation! You, and your Loved One, must be approved! So far I've had 2 turn-downs because my husband is deemed "disruptive and somewhat violent". Please...... He's a guy, he's afraid, he's unsure of everything, he's not able to comprehend conversation, he relies on me for everything. They arrive, sit on our sofa, ask me questions about him. He roams around our house because, after all, it's his house! He walks past them and they are scared out of their wits! What's up with that? So at one of these, he erupts when he's suddenly approached, fight or flight response is just natural, at least in my thinking. So he's deemed violent, but out of that encounter I find out about a calming drug. In the last few months this has changed our life, he's happier, I am able to think again! Why isn't this drug talked about and suggested by caregiver's, doctors, anybody? It could have saved us a long time ago!

And so, I keep on keeping on. But he has to go somewhere else, I need to find someone who's willing. I don't need help from national "find a place" people, I just need someone at a current facility to care enough to take him in the space he's in now. Just care for him like I do, listen, watch, help when needed and let him be in his new world.

My heart goes out to all of you here, I know what you're going thru, I have either been there already or am going along with you into new more horrible areas. We're all going to lose our patients eventually, just hopefully before our own lives are over. Thanks to the Forum for letting me vent a little, this is the thing at the moment that bothers me the most. Give your patients a little space and take them for what they are. Think how you would like to be treated, imagine not knowing what anything is anymore. Imagine someone having to wipe your butt, having to try to eat without knowing what it is, imagine listening to people talk to you in a foreign language all day long! It's hell for them, too, not just us.

Being erased. Not her fault, just a fact.

That I can’t turn my brain off. Even when you want to take a break, your brain still worries, thinks about the elderly LO, because the reality is that very often a new problem pops up.

I remember reading a poster who said they hadn’t had a mental break (total relaxation, no worries) in years. Maybe me, too.

You’re welcome, venting.

The care giving part

Oh that sounds so familiar with my dad. He is only worried about himself!! Ugh!

I guess the hardest part for me is trying to help my dad while he screams at me then I end up screaming back and walking away because even though he has dementia he has always yelled since I was a kid and I think that it just triggers me. He is the only person who can get me so upset. Then I feel like a horrible person. This process repeats over and over and over...

i totally agree with how you are treated. My husband has esophageal cancer and has had radiation and chemo but issues arose and he lost so much weight that he lost his mobility to walk. He is on the mend but he is constantly having me do things for him and it feels like he is ordering me and not talking as a spouse. I do understand that he is sick but I am doing the best I can but he is never satisfied.

I cannot relate how family can be so blind , case in point my MIL needs a wheel chair , she can hardly walk we purchased one for her refuses to use it but doesn’t have a problem expecting everyone to jump up to help her as uses a cane and you have to walk her everywhere hanging on your arm she is a heavy lady my shoulder almost got dislocated after a while I told everyone my arm is hurting what irks me is how stubborn she is and how can you put so much burden on people ??? If it was up to me she wouldn’t get away with it and it seems all the nice people die early the ones that stay make your life a living hell sorry not sorry

Ahhhh 🥺

I'm so tired.
Tried to get respite care-they couldn't take my husband-a case of COVID had popped up. Maybe in a couple of weeks can try again.

My back hurts and I can't get a break long enough for it to heal. Also, changing poop briefs. It's so disgusting to me, but my dad is on hospice at home so it falls on me to do it regularly.

My husband has Alzheimers, Parkinson's and deficits from a stroke. We live 3000 mi from his few relatives (1 son, 2 sisters). They do not appear to care at all about his status. They will call on the "obligatory occasions" - Xmas, birthday... They have not laid eyes on him in over 20 years but are unbelievably critical of anything / everything / how I take care of him...to the point of calling Adult protective services in our state because they saw a recent picture of him (289lb when we moved / 218lb 20 years later) so OBVIOUSLY I am neglecting him, starving him and abusing him! There has never been an offer of help (financially or in person), or even an acknowledgement of how I am handling it all solo and how well he is doing.
And unfortunately it is all solo because there are nowhere near enough elder care resources in our area. He had been in a subacute post-rehab unit for 2 weeks when COVID struck in 2020. He needed a full-time advocate to make sure he got basic care - and food! So when the facility blocked all visitors I had to get him out of there and have been responsible ever since.

I feel really bad for elders who do not have an advocate!

Thank you for letting me vent...
And edit - he is 81 yo; I am 72 yo -

I just read a comment on this thread: "...Caregiving is stressful, venting. It’s hard not to become overwhelmed. Still, please make time for yourself to find joy in your life." It amazes - and annoys me when outsiders say "...make time for yourself; take a break; etc. The best one is "Just find help. Make a few phone calls and hire someone to fill in for you." The time I would spend calling around for backup is consumed by immediate needs.
I've been told - by friends and healthcare professionals - "Let me know and I can help you." Ummm, OK - so when my hubby is incontinent overnight and I find out in the morning, I can say "Just sit in your filth until I can find someone who can drop everything and come here RIGHT NOW".
(mic drop!)

For a couple of reasons, I’ve never been a caregiver. But, I’ve seen caregiving happen and there are some things I’m seeing, that I don’t like.

The main thing I’ve seen, is entitlement. If we live long enough, we age. That’s a given. But, it seems as if there are aging people who aren’t aware of this and, when they become aware, sometimes, they’d like to have free, private, 24 hour care, with a smile, from a person who is still working. While I know many people, indeed, do this, for an aging loved one, I don’t tolerate entitlement. But, I can see that there are aging people who feel they “assign” people, when it’s an appreciative ask. It is the potential caregiver, that makes the decision, including what they are able and willing to do. It is not, or at least should not, be slavery. I find it incredible that people who may have retired early, without a medical or financial plan, seem to become immediately and entirely “unaware” of other people working and pursuing their own lives. That they almost wonder where people are and what they’re doing — they’re at work.

There appears to be butter indignation, when they’re told no. Some of them, will do nothing to attempt to mitigate their circumstances and, instead, may worsen them. They may not actually want use of public resources available to them, because they feel they “decided” the burden would be placed upon a singular person. In addition, sometimes, their family’s are apart of this frame of thought. They may have that aging relative move to an apartment complex, where they “choose” a neighbor, who they feel would be suitable to provide free care, so they don’t have to. They remain hidden, until their relative passes and appear, when it’s time to read the Will. Only those who understand the dynamic, are able to avoid it. But it isn’t without pressure, coming from other neighbors, who also, willfully don’t know any better.

It is important, if/when it can be afforded, for a person to obtain long term care. It’s also important to note simply feel you can retire early, without doing math. As I’ve recently witnessed, a neighbor of mine did both. Knew she was going to become ill, retired early, without enough savings to qualify to do so, even adopted 2 thoroughbred dogs for thousands of dollars. When I spoke with her, 4 months ago, she told me she would soon be leaving (evicted), because she’s running out of retirement. Her family wasn’t helping her, but they all seemed to think taking care of her affairs, was to usurp my life. She died a week ago. Sadly, lucky for her as, she was probably weeks away, from becoming a very sick, very homeless woman, while heading into winter. Pretty sure there are a few people, who think primitively and think all of that was my fault. Good thing it doesn’t matter to me.

Self-doubt. I am making all the tough calls in my mother's care, doing what I think is in her best interest and what she would want, but she is miserable. I am always wondering if my decisions are the right ones.

The bowel movements without a doubt. With dementia my mother is wondering what’s that? So she gets it on one hand mostly, under the nails then wherever that hand goes the bm smears. In her hair, on her legs, the pillow case, blanket. It used to be mentally horrific for me. Now I just get it cleaned up asap to put it behind me. She can’t help it. I had to overcome it but it’s still the worst part of caregiving for me. I’d still take her worst day of bm just to give her the best care in the last phase of her life as I can.

That people don't think about the future when they're older. They marry a narcissist who can't take care of himself let alone the two kids they eventually have. Instead of getting divorced and leaving him to figure his own stuff out, she still spends her time managing him after the kids are grown up and long gone. Then after all that she has a series of strokes and a UTI that leads to sepsis, and boom, the man who couldn't take of himself is now responsible for someone who can't do anything for herself. And he ends up practically starving her to death with his crazy internet diet concoctions dreamt up by Quora "experts" that deprive her of any fiber so she ends up constantly constipated, and he keeps her sitting in a room in darkness that smells horribly of urine because "she said no when I asked her if she wanted the shutters and the window open", until we step in and move her to a care facility, and her daughter-in-law starts feeding her real food, and she regains all the weight she lost along with some cognitive reasoning, all while her husband sits at home hoarding junk he finds on NextDoor, and whining about how everything bad is happening to him.


So the lesson here is don't stay with someone who can't take care of themselves because some day they will likely be in charge of taking care of you after sucking all your energy dry, and they will never find the strength in themselves to do for you what you've been doing for them all those years.