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

Medical appointments, it seems more and more of those as disease progression happens. I am full of energy otherwise but drained with each of them. Some seems to be redundant, yet, how do we or drs know.

what bothers me the most? some people's lack of empathy.

i think it's really true, that unless you have done it yourself (helping an elderly LO), you don't realize all the work, effort, time, stress, etc., etc., etc., etc., that goes into it. i think some people even have the bad luck of having family members who enjoy seeing you suffer, who enjoy burning your life down. sadistic.

you must keep your head up. rescue your life.

My husband has Parkinson's and memory loss. I'm his sole caregiver. It's hard and some nights when he's woken me for the 3rd or 4th time I wonder how long I can go on but he's pretty easy to care for in general. I take him to adult daycare 3x a week. We go for walks around the neighborhood on the other 4 days and attend occasional events with neighbors. He was always a loner and doesn't have any friends that come to see him. We visit my folks about once a week. His only blood relative is an "adult" son from a previous marriage. The son lives 1.5 hours away and makes a feeble attempt to contact him 2x a year- a 5 second voice mail, a 1-line email. He showed up out of the blue for the first time in 2 years and my husband wouldn't come to the door to see him. It was an unpleasant encounter, with him insinuating I was keeping his dad from him. I said his behavior and insinuations were making me uncomfortable and that I was calling 911. As I was talking to the operator, he got in his car and drove away.

Now I am told that my caregiving, has put me in a position of "undue influence." That the law assumes it is so and the burden is on my to prove otherwise. I'm gobsmacked. Let's get real- the son chose to have next to nothing to do with his dad. We've seen him on social media (I'm sure he thinks we're too dumb to find his account) with his friends- hiking and vacations, weekend getaways, dining out- living his best life. My health is affected, my sleep is affected, my job is affected, my finances are affected- and all so I can be accused of "undue influence?" That is the worst thing about caregiving so far.

Ok you made me laugh. I feel your pain. I know exactly what you mean. Never about you. You are not alone in this feeling. But I really needed to hear other people feel like this. Then the darn guilt is like what are you thinking. It’s good to be able to see other people know exactly what you’re feeling. Hang in there. Thanks for sharing this. I needed it.

Loneliness

The exhaustion. I broke down crying to the general contractor who has been doing work on the house. (Embarrassing!) He gave me a hug. He's been through the same with his mother.

It's exhausting. The finances. The caregivers. The home maintenance. The meds. The travel to get there. The medical required diet. The ordering of supplies. The demands on me....all the time.

Frightened, tired, fog brain, alone, getting it wrong. House a mess, functioning and keeping focused x

Can relate to the initial post so much. Disabled and live with elderly parent bc we're both on fixed incomes. But, with them 24/7. Relocated to be near family member who wanted us closer to help. They help but I feel there is some resentment sometimes. With her 24/7...literally. Don't know ppl here & disability causes mobility issues. Thought sibling would hang out with me or let me ride along but not. If you aren't a caregiver 24/7, you can't understand. Don't want parent in a facility. Usually it's ok but then I find myself yelling and being corrected. No more interest in hobbies or leaving the apt. Feel like a problem instead of someone taking care of parent. No thank yous or acknowledgment. Doing something they don't want to do yet still seen as a loser/waste. Been a hard night.

Wish ppl would acknowledge that being a caregiver is hard. Would like an "atta boy" or for someone to show they care abt me, too. An afternoon out or go out for a meal would be nice. No criticism or judgement. Maybe realize that I'm not all bad...I have worth. That's all.

There are so many things that bother me. Waiting for the other shoe to fall for the next crisis. The worry when I make any long term plans that I might not be able to go, The resentment I feel for the assumed expectations that my parents are putting on their daughters for their day to day home care, never considering they need to move to a facility. The anger that my parents had their heads up their collective you know whats about their estate planning. The disappointment watching them blow through all their money without having any financial plan. And finally the loss of my compassion.

My abusive mom.

Well, my resentments are in the past now (and we will have no part in caregiving mil, if it comes to that). What I remember is the resentment that I was expected to be at my mother's beck and call (so glad I didn't live with her!). She made clear her disdain for me, while my out of state brothers didn't have to do much of anything.

@JeanLouise

There's no reason why you shouldn't have been able to go to the calling hours or anywhere else alone.

'No, I'm going on my own'. Then let that be the end of it. The guilt-tripping is something you're going to have to learn to defend yourself against. The way to do this is to allow yourself to understand this plain truth. If you have no life that isn't centered around his needs and demands, you won't be able to care for him.
No one wants to develop resentment towards a LO they care for because it often turns to actual hate.
If your husband can be left alone, start going out on your own. Even if it's only to the store or out for coffee with friends. You do not have to tell him where you're going or who you're seeing.
You are an adult not a child and he is not your parent.
Hire a care companion a few hours a week to take him out without you. It will do both of you good. The two of you can go out together with the companion who will take care of hubby's needs and with the caregiving not on you for a little while, maybe the two of you will have a good time.
Please bring in some help. Being a care slave is a wretched existence. All caregivers must down time. More than the odd hour here and there.

Resentment towards my parents for not being financially prepared for their later years and me being their retirement plan. Always feeling anxious that a medical crisis is on the verge.

When my father passed I was devastated! I have 5 brothers and one sister. I was always pushed away from parents, meaning I alway heard you made your bed lay in it! I wasn’t allow to participate in dads funeral/burial. Now mom got her self in a pickle, allowed a 30 something into her home, he hit her, stole her money, and so much more! Mom lost weight down to 100 pounds. Iapplied for GDN I evicted him from moms home. Sibs petitions for reduced limited GDN, they wanted to help mom, LIE! They never gave her the meds, never checked on her. Then I was I’ll with pneumonia, 4th oldest called me, moms going to hosp via ambulance! Mom had Covid! 14 days in hosp. Receive call from doctor, sending your mom to nursing OH! So I disagree. Mom came to my place, I thought she was going to die, I couldn’t sleep kept thinking not on my watch. She’s well, she back to her normal hateful self! With mom I’m not sure it’s dementia, or her normal self. She throws shoes at me, calls my grand kids names, accuses my husband of cheating on me, breaks my thing, cusses at me all the time, threw a temper tantrums until I took her to withdraw money from her account, just to prove I wasn’t stealing her money! No respect for the person who kept her from nursing home, or passing away. Care giving is painful, but I still don’t think I could bring myself to put her in nursing home!

With the crummy and overwhelming day that I am having, I'd have to say "the one thing that bothers me the most about care giving" is - EVERYTHING!

I think I could probably deal with my MIL if she had Alzheimer's... maybe. Mine thinks that the sun rises and sets around her. She does absolutely nothing all day but expect my husband or myself to do something as simple as make a phone call to request an order catalog after we have been working all day.
She is the most annoying person I have ever met. She lives next door to us and can tell you more about our comings and goings better than we can.
She is my husband's mother but I have never felt like she fit in with our family.
Its to the point I don't want anything to do with her.

That is funny! I see the same thing! My mom is all "About Her" too.
Shows little feeling for her children and is only happy when she gets attention or eating over her children's house for the holidays.

All the boomer stories. The repeated past stories that my mom remembers in 10 different ways. "I had a great childhood " one month, and the next is " my childhood was awful!" No connection or warmth from my mom just the endless stories.

Dealing with all the demands of the medical system—a lot of what goes on seems lacking in common sense and/or clearly insane to me—very difficult to trust a system that’s run for profit—

The exhaustion, the endless worry, the constant guilt, the resentment and frustration. Anger that I feel like my life is passing by while I take care of everyone else. Too exhausted from being a caregiver and holding down a full time job to have any kind of social life. Feel like I'm no fun at all anymore. Even my dogs seems depressed. Feeling like you aren't doing enough or doing right by anyone. And not knowing how to end the cycle or what to do to fix it. Can't have an aide in the house 8 hours a day as my dogs don't like strangers, don't want to lock the dogs up all day, can't have someone live here, no more rooms. And I don't want to admit defeat and put him in assisted living. And now the tears come. I guess there isn't one thing that bothers me the most. It's everything.

I think one of the worst things is the exhaustion. I am the caregiver for my 94 year old, bedridden mother. I cook separate meals for her as she is very picky and has numerous food issues. I change her, change bedding, do several loads of her laundry per week. Several times a day I reposition her, with her telling me that what I am doing is not right, not comfortable, etc. I dispense medicine, deal with the hospice nurses. I get up at night to deal with her pain, reflux, or inability to sleep. She has started episodes of crying and saying she is lonely and wants me in the room more to talk to her. I handle financial issues, pay her bills, update all the relatives on her condition. There are times when I am so physically and mentally exhausted that I can barely think.

That other people just don't "get it."

We are in the midst of bucket-listing since dh knows his days are numbered. We saw his brother and nieces and nephews in MD (two hours away) at Thanksgiving. On Tuesday, we made a spur-of-the-minute decision to visit his family in WV (three hours away). It went from "I wonder if I'll ever see my cousins again" to reservations made thirty minutes later and on the road an hour after that. It has been a very emotional trip for him. He has wanted to see all the places that meant something to him when he was a kid when his family spent two weeks here every summer. Of course, now we are just driving and looking, not hiking and walking, except he insisted he wanted to see the falls -- 214 steps down to get to the falls, and of course that many back up. He almost didn't make it. We've seen his cousins (and I am slapping myself for not taking pictures). And my father (92) called last night after 10:00 p.m., after we were in bed. He says, "I know it's late, but what-the-h***, you're on vacation." This is no vacation. I haven't had a vacation since 2015, almost every packed suitcase has meant a trip to see him (in Delaware, five hours away) and mom when she was alive. He just doesn't get it.

Everything. I wish I knew a Mr. Miyagi. Some days I feel like I'm gonna go insane.

I GET WHAT YOU FEEL.....BUT BELIEVE ME....SHE'S SUFFERING MUCH MORE THAN YOU. I TAKE CARE OF MY SISTER AND THANK GOD WE DON'T HAVE WHAT THEY HAVE. HELP HER LOVINGLY AND YOU WILL FEEL BETTER INSIDE.

ALSO....IT SOUNDS LIKE YOU WOULD DO WELL JOINING A CAREGIVER GROUP TO LET OUT YOUR FRUSTRATIONS AND HAVE SUPPORT FROM PEOPLE THAT ARE GOING THRU WHAT YOU'RE GOING THRU. I KNOW IT IS NOT EASY AT ALL...BEEN THERE, DONE THAT. I HOPE MY ADVICE HELPS YOU.

Feeling anxious and trapped between my love for my 90 plus parents and my love for my spouse and the fear of time lost. In spite of my extensive efforts to problem solve and make the best of a difficult situation, those efforts rarely if ever bring understanding, appreciation or any kind or release from the pressures of making the best decisions I can with the resources and time available.

Thought of another one. People who blithely tell you “you made a choice” - “just put them in assisted living” - while having no knowledge of the complexities, care issues, legal issues, emotional issues and costs.

Just one more - I promise!
Vacations or time off. No matter how much extensively you plan for every possible contingency, you can NEVER have a vacation or time off where you can be completely carefree and enjoy your time off. If you are even lucky enough to get a vacation, you will spend hours lining up care, double and triple checking those arrangements, hoping no one person or thing fails to do its job, and answering and making phone calls when they do. Meanwhile, no one helps you and everyone around you vacations their a#% off!

Whew, where do I start? I have read many of your replies and I can identify with most of you. Mom was diagnosed with dementia about 12 years ago. For the past 8 years, she has lived with me. They are so many hard things about being her caregiver. Recently she became incontinent. Just when I thought it could not get any worse. I suffer from depression and anxiety since she came to live with me. She refuses to do anything for herself. I have a master's degree and I cannot even use it, which comes with a healthy price tag of student loans. The doctor said she should not be alone. So I cannot work or play. She and my husband cannot stand each other, so I get little help or empathy from him. He thinks she is faking it. Really!!! He never knew my mom when she was one of the most fun-loving people you could ever meet. Therefore he does not understand. Which makes my life even harder. She also drives my 12-year-old crazy. When he is not in school she calls his name constantly to fix her tv. Which she pushes all kinds of buttons which causes it to change from HDMI to some other input. Since we have a Roku for her I just tell her to push the talk button to watch whatever she wants. However, that just falls on death's ear. Also, she is very vain. She thinks she is still a young woman, but can't seem to even try to make it to the bathroom at all. She pretends to take a shower while just running the water and sitting on the toilet. I often come into the bathroom just to find her wasting water. I ask her what is she doing and she tells me she is using the bathroom. My reply "how can you use the bathroom with the toilet seat down?" I then make her get in the shower. I have tried to wash her up since she doesn't wash up properly. Her reply is "I don't want you washing me up, I am not into that freaky deaky sh*t". Which really gets under my skin, the last thing I want to do is give her a bath! But it must be done every day bc she reaks of urine. Did I mention I have severe back problems? Well, I do, everything makes my back hurt. But I have to do it for my mom bc it won't get done. I tried everything on the market to keep the house from smelling like urine. Nothing works. When I remind her to go to the bathroom to keep her diaper dry, she claims she just went. I bought her a diaper pail like many people have for their babies. Sometimes she uses it and other times she just leaves her diaper in the middle of the bathroom floor soaked with urine. The dog sometimes gets a hold of it before I notice it and begins to tear it to shreds. Now I have to clean up a whole mess with a horrendous smell off the floor. In turn, my back is killing me. I have gotten to the point that when I hear her coming out of the room I just cringe. I feel guilty about not wanting to be around her but I just cannot help it. Just when you thought my story was over, it's not even close. But I will only share a little more since this post is long. The final thing I want to mention is her appetite. She will eat up any and everything in the house. Including other people's leftovers from a carry-out, your soft drink, and foods I buy especially for my son, husband, and myself. Did I mention she does not like to wash her hands? Yuck! We have resorted to hiding non-perishable things in our bedroom and got an extra refrigerator for the garage with a lock on it. However, sometimes my hubby or son forgets to lock the frig, and poof your food is gone. It is like she is watching them like a hawk to slip up. I miss having a life, going on vacations, and having family fun days with my son and hubby. I feel like my life is just wasting away. I worked so hard to get my education and cannot even use it. To make things worse, since I cannot work we have to use her income to supplement living expenses. She makes too much money to qualify for Medicaid but too little to pay for care herself. I am stuck between a rock and a hard place. Sorry for the long vent. May God bless all of us.

Being told that I would only have to take care of my mom for 2 weeks which has become almost 3 months with no end in sight. I’ve been told by my mom that I can’t go home until her appetite comes back which has been diminished for the past few months all the while my brother got to go out for his birthday plus got to go on a Caribbean Cruise over Christmas/new years. My husband is on dialysis and comes first. He has to come to my moms to see me.