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

Good luck to all! Another day, more venting. Another thing that bothers me the most: I noticed that my mind is so filled with caregiving things, that I forget to have normal thoughts, normal problems. I watched a movie recently, and suddenly remembered, "Oh yeah, those are normal everyday problems people deal with." I miss focusing on the normal problems.

Ariadnee,

My mother does not have dementia. She always did the singing/ humming and it always pissed me off since I was a little kid. Only now it really gets to me because the combination of the singing and humming along with the tv blasting at its highest volume all day long and into the night, is enough to get to anybody.
Nothing out of the ordinary is 'grinding my gears' and I thank you for your assessment, doctor.
It's the combination of the tv and the singing/humming together. I can tolerate one or the other but not both.

I have no reservoir of memories of receiving care, affection, or support from my mother. Yet now I am helping care for her to support my sister, who is totally exhausted from her own responsibilities including partner's chronic illness and mom's increasing needs. She admits my support helps - but also insists that mom is managing fine.
She and the other siblings and one of my nieces all feel that I should be giving my time out of love to take care of my mother.
For family reasons, at the end of this summer I will announce that we need a geriatric care manager to find us more help. May create a rupture in the family but I realize that I am not really connected to these folks very well, anyway.
Thanks for letting me vent.

My confession….I’m no good at medical issues! Urine, hacking, coughing, poop, changing diapers, etc…
It’s not their fault at all! Normal aging. They don’t want this either.
I will do it, of course, but that’s my confession!! Okay I’m done!! ☹️

I'm sorry, but I just need to vent this. I've been a caregiver for a long time and can maintain a high level of patience. Otherwise I couldn't do this kind of work.
I have been taking care of my elderly mother for years now. She doesn't have dementia, but is a miserable, negative, gaslighting martyr. I'm alright with that and deal with it well enough.

I simply cannot tolerate another f*&%ing minute of the humming and singing though.
The blaring tv from early in the morning until late into the night that can be heard across town, I can cope.
The constant negativity, I ignore it.
The portable commode cleaning ten times a day, sometimes more I just do it.
I can't take the humming and singing. I don't ask her to stop all the time because if I did, she would know it gets to me and would double down on it.
Does anyone else have this problem?
What the hell is it with the elderly and the go**amn singing and humming?
Thank-you for letting me rant. I feel better.
Best regards and with the compliments of, BurntCaregiver.

venting,

You asked why it's important to insist that your next caregiver have a driver's license.
Making a valid driver's license, proof of vehicle ownership with insurance and registration a requirement to work for you is a good indicator that the person you hire not only works consistently, but also has transportation.
I remember some years back a friend of mine needed to hire a private-pay caregiver for her MIL who was in the early stages of dementia and having some mobility issues. Her MIL lived too far for me or any of the girls I call on a job to take it. So she asked me to help her with the screening process. They didn't know what to ask or what to insist on. I do, and I'll tell you.

1) Valid driver's license and proof of car ownership with insurance and registration

2) Three work reference phone numbers, from client families that your potential hire has worked for in the last five years. You can be flexible on the number of references because some private-pay caregivers will only work for one client family for several years. I've done this. Check up on that family.

3) Police back round check from the last place she lived in for three years or more.

4) Proof that they do not have an arrest record.

5) Do they have kids? If so an explanation of how they handle their childcare needs.

6) A clean drug test (not more than a month old) that the potential hire brings with them upon interview. Then random periodical drug tests that you pay for.

7) Have the potential caregivers you interview do a job application in writing. It's always good to make sure someone is literate.

8) Last but not least. If you're hiring a caregiver for only a few hours a couple times a week and they ask to be paid in cash, don't make a big deal about it. If such is the case, pay them literally in cash money. Not a check.

I wouldn't hire a student if I were you because school will always come before their caregiving job and it should. If it's a nursing student and the caregiving can count towards some of their clinical hours that's different. Sometimes it's allowed.

Marialake, thank you for this hilarious post, you have absolutely made my day! The humor lies in its ridiculous truth, and because of your amazing attitude and sense of humor you are going to keep rocking this.

Another day, more venting. I guess the day I stop posting, means I'm doing well. I do wish and hope everyone on the forum is doing well! Hazelboundary, I need to follow in your footsteps. I can't right now. My mother is in the middle of a crisis (not medical). Problems with the aides. We'll need to change agency. It's so hard to find reliable caregivers. We're hoping to have better luck with the next agency. I'm arranging it today. How do you guys cope with crisis after crisis?

It really comes down to luck - if you're lucky, there are less crises. If you're lucky, there's reliable outside help.

One more stupid thing my husband has done, has really added to the stress. Since this is a public forum, can't go into the details. But, dang-it, it just seems to be never ending. Just when I think everything is almost going somwhat smoothly, then once again there's another issue. It's so discouraging.
Glad this forum is here, really helps. Thank goodness for Zoom making it possible to join support groups. Yet, the consistent issue I've been hearing and reading about is the isolation of the caregiver. So true.
Tomorrow is another day, I'll get through this and know I'm doing my best.

The one thing that bothers me the most about caregiving for my husband is that it is a full time job with all responsibilities on me, and there is no light at the end of the tunnel.
I did hire an aide a few hours a day, a few days a week but it’s not enough, I’m still doing tasks that I never thought I’d have to do.
I'm physically & mentally drained, and would love to have a week long break away from him to be able to feel calm, relaxed, and rested.

What used to bother me the most was the stress, until I set up very strict boundaries. I got so many pycho-somatic problems from caregiving for my Dad, that one day I drew a line. My Dad is a sweetheart. But the stress was killing me. I couldn’t have a moment to myself. I was either worried, or dealing with immediate problems. I could list an essay of 10 pages on my physical ailments due to the stress. I decided it wasn’t fair. I had to draw a line, even if that meant not spending all my time helping. I couldn’t concentrate on my work. I was getting poorer and poorer. I just “woke up” one day. “Hazel, you’re going to ruin your life. Wake up!” So I set up the best care, and dedicated my time to myself. The moment I did that, my stress went away; my physical symptoms disappeared. // You really don’t realize the amount of stress you’re under, until it’s lifted. // I see my Dad, but now I get to enjoy just the nice part. I’m lucky I drew the line before it was too late.

For me one of the things that bother me about caregiving is the lack of support from siblings. Mum and I both would benefit from the support, two of them live only half and hour away and they cant even pick up the phone to call her. Ive been trying to get them to be more active in her life and its very draining on me. I even had to make contact with one of them through my brothers partner on facebook to pass on updates if urgent because he wont answer the phone. I recently told his partner that i wont be doing it anymore because if he wants to know how mum is he can call her. The other brother messages me on fb to see how we are, but I tell him to call her and he doesnt. She longs for their contact, i dont think they should get off scott free by just a quick message to me. you can be sure theyll be present when she dies, thats the sad part.

Another day, another thing that bothers me the most. Another difficult day in the caregiver world. I hope everyone else is having a good day. Again, I have no words to describe this day. Just stressful. Good luck to us all!

Finally, I do have some words to describe the day. I looked at my thesaurus. There is %·!=)$&!...and %)!(/!...and bad. They all seem to mean the same thing.

It seems every day, something else bothers me the most. Today I’m having such a @@$(-/“”/-! day, that I prefer not to mention the details.

I just want to wish us luck! All of us! Chin up. We are heroes. Hercules was strong - but did he ever care for his aging parents? All these men with BIG achievements - did they ever? What about women with BIG achievements - did they?

The one thing that bothers me the most? The fact that I'm the only one who has to deal with everything. My brother doesn't help much at all unless I ask...and then it's a struggle because he and dad don't get along. Dad's sisters who live nearby don't help or even call much because they are mad at him or visa-versa. My husband helps when he can...but I always feel like it's an inconvenience when I ask...so I don't ask for help unless it's absolutely necessary. Just feeling overwhelmed...

What bothers me the most about caregiving are cleaning up after animals and no time to care for me.

We live in the country, so the floor is hard to keep clean...so sweeping and mopping is an everyday MUST. But I end up mopping and picking dog poop all day long. I hate it when I go to do something and step in pet pee or poop.

We have pet pads, but it doesn't matter.
They just go where they want.

I dislike changing and washing all of mom's bedding frequently because the dogs had an "accident". (Fortunately, I have a waterproof mattress protector for her new mattress, otherwise it would be ruined already.) I also keep 2 thick mattress pads on her bed at all times.
I change the bedding once a week no matter what anyway, but getting up at 2:30 in the am to strip and make a bed because of animals, does get pretty hard.

So, I spend all the next day washing her oversized comforters, mattress pads, sheets, pillows, etc. -- If I get behind because I have to take her to the Dr., It takes days to get caught up.

I know her dogs mean a lot to her but
I just found a good paying work from home job. Training starts next month. There is set schedule though, which will be very hard to follow, while caring for mom... But I need to work...the cost of living has increased so much its necessary. -- I just won't have time to clean up after them anymore.

So, that's my struggle...probably seems pretty lame to some, but I cant break mom's heart by making the dogs "go away".

I feel for you PeggySue.

Same here, convincing my mother. And I get abused while I help her. Charming to everyone else. I want to take a break from helping, but there are many details to get settled now. This way I can focus on me. What bothers me the most about caregiving? That, as I wrote, I'm doing an awful job taking care of myself. I'm doing a great job taking care of my mother. (My mother raised me as a single mom; Dad is out of the picture). I hope I get back on track soon. My sympathies to anyone else going through this: your own life going downhill. We must get back on track.

Its when the answer is very obvious but they won’t do it until they suffer worse and worse consequences.

What bothers me the most? I’m not taking good care of my life. I was doing well. Since 1 month, I gained a lot of weight. Stress eating. There were so many problems to deal with, to help out with.

I’m really not doing well. I must take a step towards self-care. I notice many people on the forum write, “Save yourself”. I must, must, must do that.

Peace and love.

Family members who refuse to help based on their "busy" work schedules, and yet give peanut gallery comments about how to provide care. My SIL is a pediatric nurse, and not once has offered to shadow/supervise me when I'm doing medical procedures at home. I learned wound care from my dad's podiatrist in order to provide wound dressing changes that aren't covered by Medicare. He actually stated that I saved my dad's entire lower leg (and possibly his life) because I was able to replicate and work with him as a team. I also had to learn from the in-home nurse (and YouTube) on how to administer IV meds for my dad's antibiotics at home. The fact that the trained professional let an amateur do work she could've helped with is appalling.

dear venting,
:)

one thing that helps me is, to think they’ve lived/live a long, full, great life.

it’s our turn now. we mustn’t drown.

bundle of joy :)

Worrying (mainly about falls). The aides do all they can. But falls happen. I worry. I try not to.

Someone on the forum said, “Old is old. You can’t fix old.”

Right.

I go through a lot of emotions, for different reasons:

Anger, empathy, worry. None of these are positive emotions.

What bothers me the most right now is worry.

Verystressedout, I’m trying to follow your suggestion. You quoted:

Daughterof1930:
"Give yourself a break. Decide to accept what can’t be different or better and know that you’ve done your best for your mom. None of us have any control, it’s an illusion we give ourselves that we actually control things. Yes, mom will fall and she will decline, it’s the normal course of life. Be kind to yourself, make time for activities you enjoy and that bring you peace. I wish you well."

Having had let some people into my head, be it the patient or one of their family members.

Life has left some people quite damaged.

Having to be relied upon constantly and the enormous amount of responsibility that goes with caregiving. It wears a person down emotionally and physically. The expectations are overwhelming. Never again will I put myself though it or allow my children to be bogged down with caregiving to me.

My situation is very similar; my husband has dementia and has no empathy. He’s total focused on himself. I recently fell down stairs injuring myself and asked him to help me; he actually stepped over me to go to the other side of the room. I understand this is part of the disease but there are times it is difficult to deal with.

Venting:

I recommend doing like me:
buy various sizes of pillows to scream into, for small, medium, XL screams.

(Kidding).

Daughterof1930 gave me very good advice:
"Give yourself a break. Decide to accept what can’t be different or better and know that you’ve done your best for your mom. None of us have any control, it’s an illusion we give ourselves that we actually control things. Yes, mom will fall and she will decline, it’s the normal course of life. Be kind to yourself, make time for activities you enjoy and that bring you peace. I wish you well."

That's what I'm doing. And it's already helping:
"Give yourself a break."

Not everyone is in a position to do this, but I decided to do it:
turn off my phone for a while.

Absolutely no stress, no problems allowed, for a while.

dear venting!

i sometimes have that problem, too. my plans get totally derailed, because of helping my LOs (i want to help). but i must be careful, too.

and your mother is abusive. so she adds additional, unnecessary stress on you.

"Be wise enough to walk away from the nonsense around you."
"Not my circus. not my monkeys."

bundle of joy :)

The fact that you risk forgetting about yourself.

You get depressed. Your mind focuses less and less on the wonderful plans you have for your life.

I have a notebook where I write short-term and long-term goals. But when I get depressed (I'm not talking extreme depression; just sad, depressed), I forget I have that notebook.

I get so focused on my mother. Problems. Solutions.

I must not forget myself.

Warm wishes from me to everyone, with their struggles!

The fact that I'm the only child and have been doing it for almost 20 years. I'm doing my best. I've noticed how my LO talks to others kindly and is so demanding and mean towards me. I try to not take it personal by it's hard. Everyone says live your life. I'm like I want to but how...

That I am watching the slow to fast rapidly declining of my adoptive mother who is 90 now. She is in and out of the hospital, having difficulty walking, gathering and storing memories, making sense out of everything. She is merely a depressed shell of her former self. She was 60 when I came to live with her, still very active, had 2 jobs, always found time to shop, go out with friends and family and exercise at the gym every day,etc ... living life happily and to the fullest. Now the only time that she goes out is primarily to the doctor's. She doesn't go out with family or friends anymore. She doesn't like talking on the phone much anymore, etc.. She's tired, depressed, worried, confused, and wary. I think that she may eventually have Alzheimer's or dementia. She's forgetful and confused alot. Two days ago, she asked me if her bedroom window was capable of opening.
I am in my 40s, I am disabled physically and also have heart disease. I live with her and I take care of her 24/7 the best way that I can. It is super exhausting and very strenuous on me. I am unemployed permanently due to disability, I have no friends(never had any) no social life, had a boyfriend who was emotionally abusive, controlling, and genuinely upset that I took care of my mom, so he dumped me in October. Even though he was terrible to me, I am still depressed over the breakup. He made me believe that he was genuinely interested in me and liked me, but it was all a lie. He would put me down alot, telling me that I look old, that I need moisturizer,that I would be beautiful if I had a makeover, that heads would turn it I fixed myself up, I don't wear a bra, he told me I should, he told me that basically he was settling for me because of his own insecurities and self esteem issues. He told me that he's not confident and an alpha male to be able to go after women he desired. He told me that he loved me and later said that he didn't mean it. I really was into him. The breakup, the fact that I lost a close dear love one due to their passing back in August, the fact that my adoptive mom has always been emotionally abusive to only me all the time I've been living with her but now it has escalated with age, loneliness, my own health declining, being without financial resources for myself, stressing and worrying about what will happen to me if she passes before me, being completely abandoned by my ex boyfriend (he hasn't contacted me since the breakup back in October), feeling angry and depressed at my mother everytime she lashes out at me and trying to stick up for myself leaves me feeling guilty and sad. I want to voice my opinions and express myself (which I don't) to my mother without being ridiculed or feeling guilty about saying anything because of what she's going through, confuses me and further depresses me. Also the fact that she and her son's(who only take her to the doctor and thats about it) were going to kick me easily out like garbage because of my poor health problems, my doctor said that I couldn't be vaccinated. Her son's said some pretty foul things to me about how if their mother ever landed in the hospital or died (despite all of the billion things that can and does kill anyone on a daily basis) that it would be my fault. That her death would be on me. My adoptive mother who always coddles them and makes excuses for them often, saw no fault in them saying this. Ultimately they only allowed me to stay because tbh her son's don't want to have to deal with her and would put her in a home if I wasn't here. None of them have ever loved me or cared to get to know me in the 29 years I've been here. They don't even know my last name or amount of siblings I have. No one has ever taken an interest, and never really had a conversation with me other than transactional ones. I'm burnt out, lonely, without anyone to ever talk to, and very depressed.