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

Please try to ignore those that are callous enough to nitpick when they only offer on lip service, Pardon me but the middle finger seems apropos,

After decades of long, hard work my spouse had done & my own work & over raising a family , I couldn't; wait for retirement! It finally came-but only because my husband could no longer work -due to a disease he came down with by age 50. Now I am caring for he & myself, house, home, & pets , etc.. most falls on me.
So -we didn't; travel much for awhile , until we more recently figured out how to Mobilize , despite his poor condition and inability to walk . With some help from a family member we got a hold of a wheelchair & set out on some adventures this past Summer-some quite far away. He did okay & the trips served as a good distraction for him. Now we are back home with no plans to go Out again or hit the road. We are thankful for our Home , what activities we Can do together -both inside and out . We spend time working on Hobbies at home of our own separate interest , doing some gardening, or going for walks nearby. We 've developed our own "schedule" -doing things in our Own time. We still have the "freedom" to go do things either just the 2 of us, or with family or friends. There are still a few favorite old activities of my husbands he can NOT do anymore , but we appreciate what we Can do .
Mainly, our Retirement didn't really go "by the book" but has instead taken many interesting twists and turns as we had to plan , at least our adventures, around a lot of Extra planning in order to make it Happen. Once we were able to check off what had become our "bucket list" we held a much deeper appreciation over times, that in the past, we had just taken for granted. I don't ever recall having so much Fun over past family vacations as we have had just in these past few years, despite the setbacks.
I hope you can find even little ways to enjoy the Moments with both your mom and your husband & achieve your dreams that may have to be rekindled , or , need be, completely morph into something, perhaps what you'd never imagined.

God Bless you and prayers for you.

I pray for you and your wife. You are a wonderful husband.

I totally understand what you mean! If you suggest creating a weekly/ bi-weekly calendar for siblings to sign on to visit with mom, be there to feed her, meet with her doctors, her speech pathologist, PT, spend a night with her, was her laundry, wash her hair, etc. It suddenly turns on YOU for being unrealistic!

All they wanted to do was call the shots, then whenever my sister, brother or I did anything or made a suggestion, it was always, "well, I wouldn’t/ would've done xyz instead." Or, "you could've done abc." We just got tired of all their absences, their constant litany of excuses of why they couldn't be there daily for 1 week to feed her & spend time with her, why they couldn't spend one night a week when we were staaying about 4 to 5 nights weekly. The played the horrific blame games of whose fault it was that mon was in such dire shape towards our dying mom, her doctors, and even the 3 of us, and the never ending "well, I woulda, I could've, you should've, you shouldn't have......
Yet that's ALL they did was nip like little lap dogs from afar!

Taking care of mom was exhausting, but in a good, loving way bc she needed us & appreciated us. Dealing with our 2 siblings head games was diabolical, wicked, and beyond exhausting!! Once we were awarded Emergency Financial and Medical Guardianship for mom. Doing this allowed us three siblings to get things done for our mo. Vs her laying in limbo for days on end waiting on 5 disagreeing siblings to finalize on even the simplest of tasks at hand. It was the best thing we could do i our situation to benefit our mom!

I completely understand. I feel the same way. Why is it you that has to reframe and why can't they take time out once in a while to give you a break? I have learned that in the end it is what you can live with and knowing how you will feel in the end if you let matters take care of themselves. The feeling that you can't step away is overwhelming. Then of course are the helpful souls who tell you to just put them in a home and be done with it when you know the care they will receive is poor and you can't afford it anyways. Yes...I understand how overwhelming it all us and the anger you feel that others can lead their lives and visit while yours is completely taken over by this. Sending a big hug.

Jan, caregiver loneliness is hard. You got many friends here, to chat with anytime!

That ‘entitled’ thing is so awful, isn’t it? It’s got to be even worse when you’re doing all this for someone who really shouldn’t be your responsibility at all. I wish you stamina if you continue and courage if you decide you need to make a change.

Indeed this is what happens.

I'm 60 years old and my mom just passed. I've been her primary caregiver (my dad's before that) for five years, but I don't even have time to grieve or to honor my mom or care for myself, because on top of selling the house, I also have to deal with my 50-year-old sister who's an addict (was also incarcerated for 4 years and started using the minute she got out), a hoarder, and once I kick her out of here, she'll also be homeless.

She has made my life and my parent's life a living hell for the past 25 years, and though we've done everything in our power to help her so many times, she's squandered and trashed everything she's ever been given.

So, yeah, I have a caring heart too, but I'm beyond depleted and I have absolutely nothing left to give. I've given it all to my beautiful, amazing parents who would now want me take care of me and take this time to "refill my well". (my mom's words)

So, I'll probably have to pack up all her shit myself (which I've done twice before) and have a huge blowout, but then once this house is sold, I'm getting in the car and driving away from this town, this state, and my sister with my effing hair on fire.

I so agree and guess what? I am an only child who took care of my mother and father who have been deceased for a very long time.
I miss them and I am so grateful that I was able to take care of them the best that I could and I would do it all over again.

RIP Momma and Daddy

PS: I am now a caregiver for a wonderful, smart woman who reminds me so much of my mother. Also, I was a caregiver for a sensitive, caring man who passed away last year.
It is a blessing to have known him and his beautiful family and a blessing to work as a caregiver...I guess it's all about one's mindset.

If you can get him to accept a catheter, that would help enormously. My husband was sometimes incontinent, mostly he had to get up 10 to 12 times a night to urinate. With the catheter we are both sleeping 100% better. You just empty the bag several times a day. And the catheter is changed once monthly by a nurse.

My guess is that 'being helped' rubs in one's own shortcomings?

Have you ttried actual tabbed adult diapers? I was a homecare worker for 25 years so I know all the tricks. Get her actual Depends brand tabbed diapers. Then buy a pack of baby diapers. Trim the baby diaper down by removing the tabs and the elastic around the legs. Use it as a liner for the adult diaper. There will be no leaks.

Joyce, your profile says F "would either throw a tantrum or pout like a child if I pushed his moving to assisted living". You're a big girl, why can't you cope with a tantrum or a pout? What's the 'trap'? All you have to do it walk out!

The caregiver often gets abused verbally, emotionally, mentally, physically, and sometimes financially too.

You're preaching to the choir, my friend.

My beloved mom just passed last Monday, (I moved home to care for first my dad, who passed in Feb. 2020, and then my mom.) I promised her that I would do whatever I could to keep her at home until the end, and I busted my ass to do it. I managed to hold it together and go hard for the first few years, but after we made it through COVID, the hits just kept coming. Our house flooded from Hurricane Ian, my mom was diagnosed with breast cancer, and then after going through that treatment for that, she had a major heart attack, and then her body just continued to shut down. Through most of it, I barely kept it together, (dealing with contractors and insurance for flood repairs, cooking, cleaning, yard work, her care, doctor appts., financial stuff, errands, etc.). Still, in the last year, the burnout started setting in and I started to feel a bit unhinged, both mentally and physically. And, even when we signed up with hospice, I was still responsible for most of it and I would beg for respite, telling the nurse that I was overwhelmed, that I was exhausted, etc., yet I wasn't feeling heard. I would cry to my friends, saying that I felt like I was losing my mind, I was suffering from such physical fatigue that most days I had to call on every bit of strength I had to care for my mom, and all I ever heard from everyone was "Hang in There" "Eldercare is Hard" "You're Doing Great". I even lost two longtime "friends" because they couldn't fathom what I was going through, said they felt neglected, and that our friendship had become one-sided.

And even now that my mom is gone, I haven't had time to grieve or to honor her properly or to treat myself to a proper haircut, because I have no money and the insurance company is taking their sweet time paying my modest death benefit. So after five years of giving everything I had to give, (literally) still, I'm left to deal with a house with an underwater reverse mortgage and 40 years of memories and things to sort through, sell, donate, etc. with only 30 days (I've asked for an extension but I don't think I'll get one), I have to find a place to live and figure out how to make a living after five years out of the workforce (AND I'm almost 60). And on top of it all, I'm suffering from such debilitating post-caregiver fatigue that I can hardly function.

So yes, I, too, feel abandoned and unseen and have felt that throughout the entire caregiver process. So much so, that I've vowed to myself, that if I somehow manage to make it through the last leg of this journey, I would start a non-profit organization dedicated solely to CARING FOR CAREGIVERS....something that will provide people like us with TANGIBLE services (massage, chiropractic, acupuncture, nutrition assistance, haircare, mani-pedis, talk therapy, house cleaning, pet care, yard work, clothing donations, errands, etc.) through both monetary and in-kind (contributions of goods and services) donations. I don't know when it will be, because right now I can barely find the energy to take a shower, but I will make it happen.

Until then, I won't tell you to hang in there, or any of that other crap. Just know that I SEE YOU. And I feel your pain.

When I tried to explain how hard it was to some family members, I was invalidated and dismissed. This left me feeling even more isolated—I can relate to your comments.

Well said, Evamar. It is modern slavery.

I wish you freedom.