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

Right now, just about everything. How I allow myself to be taken advantage of by these people and get pushed around. Last I heard slavery was abolished in 1865. Sorry folks for the rant.

I'm tired of people not following their care plans and trying to get you to work as a cheap housekeeper instead by moving furniture, cleaning under beds and driving your car in the ground.

I thought I was the only person with those thoughts...I noticed a long time ago that I seem to be here to run and get this or that for him, when we go shopping, I try to get him to make a list of all he wants for the trip to the store and tell him that I want to get it all done, so I am not running back out for some little thing he forgot... it never works, it's just that I am trying to keep his mind thinking, but ...anyway, he has dipped recently to where he is leaving water running more than ever, came home yesterday ,he was out front raking up debris from under the bushes, we talked a bit then I went into the house to find water running in the washtub at a good rate...luckily he had not put a stopper in it or there would have been water everywhere in our home....then there is the leaving on a burner that he forgets as he likes to "finish" drying the iron skillets that way...this has happend when I am home and notice the smell of it as it gets so hot...I am now afraid to go to the store or go visit a daughter for fear of what he could be doing or not doing...most people think he is just fine, he is 92.
I don't think he can be left alone much longer and I need a break once in awhile.
Anyone else have this going on?

Elaine ,
Rant whenever you want!

This is my second rant because the other one was about my useless father-in-law. My MIL is in an assisted living facility. Where we live, AL's have a limit to how much care they are allowed to provide, so someone has to check in on her daily because she's just over the line of what they can legally do for her (for example, she can't really feed herself, and they legally aren't supposed to help her), and that falls to me because my husband (her son) is busy running a company.

My relationship with her was always one-sided. She loved me, and I couldn't stand her. When she was healthy, she basically moved into our apartment (she would "visit" for weeks at a time with no end date) before her son and I were even engaged. And because my husband was building his business, and was never home, she would pounce on me to chat about the random strangers she forced into conversation with her or to tell me the stories of her friends whom I never met and never would meet, as soon as I got home from work, which was the worst because I am an introvert, and I needed down time after working in a very high maintenance, high stress environment all day. She would make plans for my birthdays months before I even thought about what I wanted to do or even asking me first (I'm close to my family. I would rather have been with my family than her and my FIL). She went to my hairdresser and "somehow got the same haircut as me". She started shopping at my favorite clothing stores, and of course we "magically" ended up buying the same clothes. She developed a sound bite for me about who she thought I was, which was something she did for all her friends, and would repeat it to my friends and to strangers, which irked me the most because I grew up in a small town that was like living in a fishbowl, and I moved to the city to be whoever the hell I wanted to be on any given day. Also it irked me even more because it was the very narrow bit of who I was that I couldn't hide from her because she was like an invasive plant, and the more she got of me the more she would take from me (see examples above).

And all this is to say how painful it is for me to have to care for her like she's my mother (and I loved my mother but she's gone, and this woman is not and never has been a mother to me). And I resent the implication that she could ever have replaced my mother. My mother gave me wings, and this woman wanted to trap me just like she tried to trap her sons. So here I am taking care of her solely because I don't like to see someone suffering, but at the same time I hate her, and I hate constantly thinking about her and ever being in a situation like hers. I hate that she married and had kids with her useless, selfish, verbally abusive, husband. I hate that I have to take care of her, and that she thinks I see her as a mom. I hate that she tells me she loves me, and wants me to hold her clammy hand. And asks me to stay with her longer when I'd rather be out doing something for myself for a minute before I go pick up my son from school. And if you read this rant this far, I appreciate having a place where I can write all this down, so I can let it go, and not end up in a room next to hers some day because she is never going to die.

MeDolly, I have the same problem in my and DH family . If some of these elderly didn’t take care of their parents , why do so many of them expect their children to take care of them ? My mother had no problem putting her mother in a facility ,( didn’t last long , my aunt came and picked her up and took her across country to live with her ) but my mother extracted a promise from me not to put her in one which I eventually had to break . My mother passed and my FIL now in AL , but they both expected their children to change their lives to revolve around their WANTS on their schedule . My FIL never took care of his parents , demands frequent dinners out to restaurants , for us to take him on vacations etc. They don’t want their lives to change . They want us to prop up their false independence . Sorry but things change . Is it because they didn’t take care of their parents that they don’t realize they are being demanding ? Or are the selfish ?
My FIL has this idea that we have to do what he wants to maintain his lifestyle . He is an entitled spoiled man .

Might be a little off track, but, these caregivers who give up their life for a LO what are they thinking? Especially those who either move in with the LO or have them move in with them.

Just how are they planning for their retirement? LO's die, no job, no saving, nerves are shot, physically worn out and in some cases have nowhere to live.

IMO, the boomer generation has really gone off the deep end, helping both their children in adulthood and their parents and at the same depleting their retirement funds, there has been no balance established.

My parents from the "Silent Generation" did not take care of their parents, when we left home as young adults (for the most part) we were on our own, no revolving door policy.

My mother is 98 in AL, my step-mother is 85 in MC. My brother and I are their watchdogs, we do not finance their lodging and would never have either one of them living with us, we care, but we must protect ourselves as we are getting old as well!

This is what stands out to me!

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.

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.

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.

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.

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!)

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 -

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.

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.

Ahhhh 🥺

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

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.

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...

The care giving part

You’re welcome, venting.

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.

Being erased. Not her fault, just a fact.

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.

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

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

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!

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.

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.

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.

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