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

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

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My second thing that bothers me is how they break stuff and there's no way to make them not do it so if you have anything you don't want broken you have to watch it so close and it's a constant stressor. Some things that come to mind are the generator, the coal stove, the heat pump, the refrigerator, the washing machine, the water heater, etc.

And it's like you know that in most cases they sincerely don't understand but it makes you think of how kids break things you can get them to STOP THE BEHAVIOR, because they can learn that certain behaviors break things, but they can't learn that so you just have to watch it happen, and you don't have infinite money so then you just have to accept that you don't have hot water or whatever anymore. It can just make the whole quality of life worse and can be dangerous.

And the emotional outbursts are so frustrating because they can't be repaired without infinite money so you just kind of watch your home degrade while you hope and pray they don't hurt themselves while having the outburst.

Edit: This sounds really materialistic and I realized it as soon as I posted it, and I'm new so I hope it's ok just to vent. I really don't think that a water heater is worth more than family or anything, it just... I don't know, I just get really frustrated. I know that this is not as bad as stuff other people have written about relationships being damaged.

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Reply to anonymous1582493

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Please don't feel wrong about venting your frustration. You are doing your best and need a safe place to land with this. You don't sound materialistic, its just part of life and what you are facing as a caregiver.

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How dangerous it is and how it feels like nobody cares about the violence. When I got pushed into a lit coal stove and burned, for example, there wasn't a whole lot I could do except put aloe on it. You have to hide everything dangerous, but during the recent flooding (we're in eastern Kentucky) she destroyed supplies and nearly set me on fire by smoking and wandering while I was putting gasoline in the generator. A lot of it really is life and death and you're expected to just kind of take it and pretend like it doesn't hurt or that you're not constantly scared that you might die. People act like you're just being dramatic but if someone lights you on fire while you're pouring gasoline or points loaded guns at you or whatever you really can die. Especially in rural areas and especially in areas damaged by national disasters where transportation isn't a good option. That's actually why I joined this forum today - I saw a section marked, "violence," and it made me think that there were actually people here who were taking it seriously.

But I read a few other posts and saw that for a lot of people this had been a lifelong thing, the person they were caring for had always been abusive. That's not really true in my case. It's a noticable behavior change.

But my point is that for a lot of things such as guns and knives, you can get a safe and lock them up, but for others like the stove or the generator, you just kind of have to deal with it, and because they're regular household things you have to have it seems like people really downplay the physical danger and it just makes me sad. I read some posts about people that are being cared for trying to start physical fights and it's so sad and awkward because you don't want to get hit or burnt but you're not going to fight back against someone that frail so you have to just kind of let it happen and it feels like it builds up and builds up and just makes you more and more sad.

And then you remember that this behavior had a genetic component and you start getting worried that you're looking at your future and it scares you on top of the sadness.

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Reply to anonymous1582493

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Takocos, when the caregivers safety is no longer a reality it is time to make other arraignments for the senior.

There are dementias that make people mean and dangerous. Yes, your life is truly at risk because they also get superhuman powers with this aggression.

If it isn't working for everyone involved, it isn't working.

Your grandma has had her time, it isn't fair that you are not able to have your time.

It is okay to say you can't live like this anymore and her children need to step in and get her a level of care that keeps her caregivers safe or they're it, this is not your responsibility.

I am sorry that you are having to live with the fear of dying, please save yourself.

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The job of Caregiving is 24x7 & it is nearly impossible to think, do or feel for myself (vs my partner) first. I feel like I live alone (no companionship) except to do what’s needful for her.

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Reply to Jmacjem

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'The job of Caregiving is 24x7'

People who have only worked a job dawn to dusk 7 days a week, still can't understand what it's like. It's not all your waking hours, it's all your hours, period.

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We are alone, it’s just my husband and I so there is no one to give me a day off. I take care of my brain damaged husband. I love him and want him to feel loved, comfortable and give him what he needs to do as much as he can, or wants too, on his own. But lately his selfishness bothers me. Even when he could do something for himself he won’t. It’s like he thinks that my whole life is about serving him and that I don’t have any life myself. He isn’t so brain damaged that he isn’t capable of doing things although he is limited in a lot of ways. He won’t contribute when he is able too. He just points to things that he thinks need to be done and tells me to do them. There are several reasons why it bothers me. For one, I’ve probably been busy dressing him and was going to do, whatever he pointed out, after I got him dressed. Another thing is that there are certain tasks he points out that he could just do himself without even saying anything to me. But he won’t, he just sits in his chair or takes a nap. Seems petty I know but it bothers me.

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Reply to BobbyDylan

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Ah, being seen as the servant. I understand your frustration. We’re “retraining” my husband’s independence here too. Bet you get the I’m sorry moments that completely lack and follow through too.

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Very simply, I want my mother back.
I hate watching this once fiercely independent, amazingly strong woman basically regress into a toddler.
I know I am not handling this well emotionally, but I do what *I* need to. My decision, never pushed on me, but I have told all of my kids they are NOT to do what I am doing. I don't ever want my kids to feel the way I do. All I ask of them is to visit occasionally when the time comes. I am awestruck at how people have done/are doing this for years. Like many of you, my siblings are useless. 2 out of 3 didn't even bother with a phone call on her birthday. 1 messages me approx. 1x a month- "how's things there?"
You are all amazing. Positive vibes and good thoughts for each and every one of you here, and all those unfortunate to have not found this forum 💕

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Reply to Momsfavekid

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My sibling don’t call mom either. When I call them and say, mom would like to talk to you. I get….I can’t I just can’t

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Feeling that I have to endlessly answer to seemingly infinite number of people about this. Much, if not most, is legitimate. But not all.

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Reply to anytown

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I hate that each day you are trying to make the best decisions for your loved one and are just hoping that it is the right thing to do. There is no road map, no predictable pattern. Since each dementia case is different there is the sheer unknown of what to do next. I am a planner. I like to map things out...this cannot be planned. Surprises, unforeseen circumstances....every day there is a new challenge. You never feel like you are on top of the situation.

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Reply to Msblcb

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The afterwards... I wish I woulda known about... I wish I did... I coulda done this...
The PTSD!
During the caregiving I don't think about what is happening at the time, but now that my Daddy, Mama and sister are gone I think about the "if I only knew" things!
That's the worst because you cannot change the past just make the next time better!

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Reply to Ohwow323

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Near the top of my list is patronizing 'Advice', from people who've never done this a day of their life.

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I wish I could upvote this 1000 times!

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Everything about it. I don't know why people come on social media with these nonsense social media instructions on how to care for people who are horrible at times or most of the time for that matter. The job is smelly and thankless. I remember one person who would literally go and wet his bed deliberately, and the CNA would have to go in and change it again. He would do this on a daily basis after he had showered himself and went into the dayroom. Instead of going to the bathroom on his own, he would pee on his bed and then leave the room.

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Reply to Scampie1

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Why are you here? Your profile does not provide even a hint. :)

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Forgot to mention:
My moms is grateful and tells me she doesn't know what she would do without me. That makes me feel like a bigger a******e that I hate taking care of her.

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Reply to Jamesj

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@Jamesj

You're only human just like the rest of us. No one is pefect and no matter how much we might love a person, no one enjoys cleaning can, the constant repeating. the smell, the negativity, the misery, the complaining, and a whole host of other things.
Go ahead, brother. Let it rip. You have every right to and please, don't ever let yourself feel like an a**hole for being human and having feelings.

(7)

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I don't have one particular thing...I have many things that I hate about caregiving.

*It is one more thing I have to do...no choice in the matter.
*I don't like the smells
*I don't like that I have to struggle to find things to talk about that won't create worry for her or for her to create some delusional story about
*I don't like that for 10 yrs now I have watched her become a stranger
*I don't like that the quality of care she gets is dependent upon how much money she has
*I don't like that my brother is fine with it all falling on my shoulders
*I don't like that in the not so far away future, I could be her and my daughter will be searching this website for answers and solace....
*I hate how pitiful I sound when I say / think these things because I am truly blessed and truly grateful for my life

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Reply to Jamesj

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'I don't like that my brother is fine with it all falling on my shoulders'

change 'brother' to 'siblings', and you pretty much have my story

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I assume it's similar to taking care of a baby (I am not pregnant and NEVER plan to be!)

Caregiving is exhausting

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Reply to Mikurotoro92

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It is absolutely nothing like taking care of a baby. There is actual joy in taking care of a baby. Babies aren't snide, instigating, narcissistic, selfish trouble-makers who enjoy spreading misery and negativity around.
When someone is taking care of a baby and they need a break, they can put the baby in the playpen, or the swing, or even in their crib.
Who has a playpen for an old person with dementia that they can put them in so they can't wander off? No one does.
There is no joy in being caregiver to an elderly person with dementia. There's really not any joy in this job period.

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The fact that I hate it

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Reply to PandabearAUS

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Amen to that, PandabearAUS. Most of of do. Caregivers like me who did it for work for a long time can tell you. When it's your job you go home at night.
For a few years it's been my paying then I come home to my other full-time caregiving job at home for my snide, gaslighting, verbally abusive mother. I thought for sure that I'd die depression living in such misery. Then the universe dropped me a blessed treasure in the form of my ex-husband.

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As a live in caretaker I miss my life, my own home, and my freedom. The constant drudgery and the uncertainty of how much longer it will go on.

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Reply to ClaudiaPeterson

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Claudia,

Let me tell something, my friend. You only get one life. That's it. If you're unhappy on the constant drudgery of live-in caregiving, get out of it right away. Go back to your life, home, and freedom. It's not worth whatever you're being paid.
Remember something. No man has ever been rich enough to buy back one second of time.
Go home now. Your client isn't that important. They or their family will kick you to the curb with alarming speed if they find someone who is cheaper or some illegal who will work for next to free. There is no loyalty between employer and employee in this line of work.
Take your life back and stop being a live-in.

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First of all, I feel privileged that I am able to help care for my mom at home full time (I am on intermittent family medical leave from work) after her sudden diagnosis with cancer. I do all the shopping/cleaning/cooking/transportation/laundry, etc. in addition to working from home. However, my sister is in Ohio and has not even offered to help. Honestly I have been so despondent during this time because of my mom's diagnosis and functional decline and my mind is a huge mess. Yesterday my mom got so angry at me because I didn't open the sealed plastic over a 6 pack of bottled water with scissors but instead with my hand (creating a messy opening in the plastic), she called me lazy, then said she is trying her best and obviously I am not trying my best to help her. She now wants me to look at assisted living facilities, because she used to have a positive opinion of me and is now disappointed in me (she said she knew I was not up to par because I was unable to wake up before her at 7:30 am to make her breakfast on a few occasions), and doesn't want to burden me with her care, since I obviously am resentful of having to care for her. The thing is, I have been trying my best, and I am not resentful in the least. If I even try to defend myself or respond to her comments she tells me to shut up and to stop arguing with her (she then says "you never accept responsibility" -- however it's the opposite, I end up blaming myself for everything). Sorry this ended up being a long winded reply, but I guess the thing that bothers me the most about caregiving so far are the hurtful comments and misunderstandings that can arise despite our best efforts. Anyway, thanks for listening and providing this compassionate forum.

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OMG ellabee, I'm so sorry! You are taking care of someone full time and she is calling you lazy and saying you're not trying your best to help her? That is so awful! You are doing a heroic job! And a thankless one! I'm so sorry you're not getting the appreciation you deserve.

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I have a list of things that bother me about caregiving. I take care of my grandmother. My father’s mother specifically. Her and I are the last of the family as everyone else has passed, my father doing so when I was 13. We’ve always had a special relationship before I was forced into care taking for her after my aunt (her former caretaker and daughter) passed away earlier this year. My aunt was unhappy being her caretake as well and I never understood why she was the way she was until I had to step in. Now I get it. What bothers me is her manipulation. Her use of “language barrier” to try and her away with saying shitty things and being a shitty person. Never taking accountability for said shitty behavior. Calling me a liar for asking her to talk to me like I’m a human being. Claiming that I’m trying to get her mind side tracked so she can be looked at as senile. She harps on me for forgetting things as small as a sales paper. You can’t bring it up to her though, because she just says she never does that. Her sly comments. I’ve held my tongue for such a long time and when I finally say enough is enough, I’m told I’m showing my true colors. The sense of entitlement. The fact that I’ve dedicated my entire life and put my family on the back burner and get she can still look at me and say I don’t ever make time for her. “I NEED you to make more time for me, I have to get these things done.” She lied to me. She told me I’d only ever need to stop by for a little bit and then I can go. She lied and I left my career. Out of love. And as soon as I got in there, I was her servant. One day I was her literally servant while her friends were in town. I hadn’t eaten much that day. I have my own health issues, she knows this. Her house was 80+ degrees and she was practically snapping her fingers and ordering me around until my partner stepped in. I’ve neglected my partner. I’ve neglected my three kids because I’m there at her beck and call every day. Two of my kids are toddlers. I’ve lost my identity. I’ve lost the will to do things I love. I took a $1000 pay cut to take care of her. I finally worked to get a career and stopped living paycheck to paycheck just to get roped in to caretaking and having to cross my fingers I’ll make rent. Today I told her it was time for her to call a company and that I was leaving. She spoke to me as if I was wicked and that I was to blame for wanting to leave.

Most of all, I hate that I care so much after all of this. She’s all I have left of my dad. I’ve rambled. None of this is coherent. But I haven’t been for months. I’m just happy to get it out.

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Reply to OhMeOmai

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I am glad you are getting out. No one understands the mental exhaustion of caregiving if they've never done it. No one understands how cruel the elderly can be in this stage of life and bad health. I know you love your grandmother and don't want to leave her high and dry. Maybe you can tell Grams that you need to take care of your children and you will be connecting her with a social worker that can help her find in home care.

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Exhaustion......Flat out exhaustion.

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For me, it's that my Mother complains about mine and my brother's care of her to her sisters which are all exaggerated lies. She makes things up and her sisters believe her, even though they KNOW she lies all of the time! She's always made things sound worse than they are because she's always been the "victim." It's so frustrating because we bend over backwards to care for her! I just have to remind myself that she's out of her mind and will make anything up just to get attention. It makes it difficult to want to tend to her every needs sometimes 'cause your damned if you do and damned if you don't! It's a no win situation. No one signed up for this which is hurtful and exhausting!

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Reply to RST888

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I wonder how common the behavior of lying to get attention is. This can be really dangerous if it gets out of hand (like abuse accusations).

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And honestly, killing yourself doing all the little (and big) things they can't do anymore and being reminded that, out of the 99 things you did that day, there was one you didn't. And that's the one thing they remember.

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Reply to Jackson009

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'being reminded that, out of the 99 things you did that day, there was one you didn't.' Absolutely. The story of my situation (get it from siblings etc though, not the parent)

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I'm taking care of 2 elders now, and they're family. But one can't seem to say anything at all that is not a snarky put-down or complaint against the other one. I realize this rivalry goes back more years than I have been alive and it will unlikely change. But it gets so OLD trying to find joy in my days when I can't have a decent conversation with them for this childish nonsense. It's ALL THE TIME. Nearly every breath. The second I walk in to the room, the complainer starts with, "She..." and it is never good. Honestly, taking care of them is a breeze compared to being saddled with this crap every day. I am getting to the point that I don't want to be near either of them and it's sad. It's exhausting. I would stay outside all day if I could. Makes me feel unappreciated. And trying to address it brings more misery (think Eeyore from Winnie the Pooh).

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Reply to Jackson009

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@Jackson

Maybe it's time to start looking into managed care placement for the two elders.
You do not have to live like this. Lay down the law. When one starts up with the 'She....' cut her down before the complaint can even be spoken. Please practice the following response. Say it over and over again until it becomes your mantra. Put your hand up and repeat the following:

'Shut up. I don't care what (She) has done. I will not tolerate your complaining and sniping anymore. If you cannot keep your nonsense and whining check, I will not take care for you anymore and you will be put in a nursing home'.

Repeat this as many times as it takes for it to become part of you. When you sense a complaint beginning, put your hand up and tell her that you will not tolerate complaining or fussiness. Then ignore her completely for a period of time. Do nothing during the ignoring period. No food, nothing to drink, no care whatsoever. Do for the other one though and let her see you doing for the other one. She will curb the complaining.
If not, stay true to your word and have her placed in managed care.

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I am 1 of 7 siblings, my mother asked to move in 11 years ago, she said because she didn't like her retirement community but she tells my siblings it was to help me after my divorce (help I did not need!) What do I hate? Being stuck in the house 24/6, 1 sister gives me a 24 hour break weekly but mom is so fragile I only take her out weekly to get her hair done. My brother has been in and out of prison most of his life and says this is what it feels like! Mom and I have always been close but at this point mom is gone, I just want a life!!!

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Reply to CokeCanlala

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My heart goes out to you. I completely understand your frustration with your siblings.
My mom moved in with my sister after she was diagnosed with onset dementia & stopped caring for herself. She stayed with me for months at a time to recuperate after falls, surgeries & illnesses because my sister works. Eventually, we moved her to a NH. She has improved greatly with medication adjustments & only needs supervision, meals & pill management. I would like to bring her here to live with me but, I don't want to burnout either. I asked my sister if we could alternate caregiving every 3 mons & I would come over days while she works & my mom can pay for a caregiver to fill in the gaps. She said no because it would be too much. So, I offered her taking 1 month every 3 months so I could have a break when I had an occasion to go to, I would go somewhere overnight & a weekend every month. She has not responded.
You are a loving daughter to care for your mom all this time. You have gone above & beyond caring for her all on your own. Perhaps it's time to seriously consider placement for your mom in a nursing care facility for your sake & hers.

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it..........never..........ever..........stops

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Well here is another one…..

When I am trying to do something for my mom and, at the same time, she gets impatient that I am not doing “something else for her” fast enough!

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Reply to Msblcb

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Feelings of constant anxiety and worry is what bothers me most. I will admit that I do not care for my mother in my home, she is in a nursing home and my dad passed away almost a year ago. My dad was in his home too long with dementia and had started falling so I placed him in a group home where he lived for a year until he passed away. The nursing home where my mother is couldn't take him unfortunately.

My issue is that although I have three siblings I am the one who is responsible for everything and have received no help from them ever and one of my siblings does things to create more problems for me. The health issues with my parents started several years ago and I have been handling all the medical and financial business by myself and I am the only one who regularly visits my mother in the nursing home. I also have their house that I have been having to deal with by myself. My dad left a hoarded mess in there and everything is in disrepair so it is taking me a long, long time to get the house ready to sell. There are constant decisions to make and problems to take care of that I don't have the energy to take care of my own stuff. I am anxious all the time these days and find myself worrying about everything that can and does go wrong.

I do realize that this is a lot different from having a parent living with you and providing personal daily care and I really feel for those who are also doing that. I do not know how you do it.

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Reply to drained

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We finally got the relatives to understand we were not allowing them bully Mom anymore and should it happen consequences would follow. Since then, their behavior has been much better.
We still get asked to help them out but it is fewer and further in between.

What bothers me right this minute...
I made a deal with SIL to come over once a week to give mom a shower (while I was working) and I would pay her $20.00 to help with gas. ("money for gas" was her reason she needed to borrow money every 2 weeks,...)

Well, It has happened 1 time. ---

When I came down very ill for two weeks, her Dtr. came over only once to help give her mom a shower, I gave her $20.00 for gas, and I sent some food with her when she left. (She kept telling her mom how she was only eating noodles because she was broke, which stressed mom, so giving her food made mom feel better), but then we didn't see or hear from her again.

So, mom and I took care of each other. She would not ask for anything. Though I stayed by her in the living area, each time we had to get up, we brought drinks or snacks to each other as needed -- napped in our recliners.

Neither of us were strong enough to do much more than just keep other's company. The house looked horrible,... but we got through it.

Mom may not remember any of it, but I will.

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Reply to Louise4

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Medicare will send a caregiver to give your mom a shower 2 times a week. Contact the Dept of Aging in your County.

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The thing that bothers me most is the unpredictability but I’m a caregiver to someone with dementia so that may not be an issue for everyone. I hate not knowing what mood I’ll be dealing with, what level of care I’ll be providing, what mess I’ll be cleaning up, what objects I’ll have to hunt for that day and where they might be and what delusions, hallucinations or psychosis I have to manage. It’s mentally, physically and emotionally exhausting.

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Reply to SedonaRose

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Everything. The isolation. My life, freedom, privacy and my future. The mom I used to know doesn't seem to be there anymore. I'm grateful for this forum. Hugs to all of you.

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Reply to Feelingguilty22

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Family, work colleagues and friends all tell me to take time for myself. I don't think they understand. It's not that easy. When I do, I feel incredible guilt and my DH will text me constantly while I am away. It's almost worse. I understand it is important, but easy? Nope.

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Reply to Whalesong

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I also get tired of that. The absolute last thing I need, is one more clueless person 'telling me what to do', as though I were too stupid to figure that out for myself (take time for myself), and them not realizing that if it were possible, I'd already be doing it.

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My own impatience and yelling.

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Reply to KathleenQ

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I feel the same. And resentful. My husband has dementia that hasn’t gotten too bad but I work full time in a demanding hospital. He is much older than I and thought he was the king, made poor financial decisions without consulting me and now I am forced to work rather than retiring. I am 65 he is 82

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

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