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

Jwellsy, what else bothers you besides not going to church? What are you doing wrong that you need to get “back on track with the life I want/need to lead”? You can change any habits that you think are bad, you can pray silently as much as you wish, and you can take part in TV church services and be part of their extended congregation. I don’t think that Jesus in the Bible says that we must go to church (or synagogue). You need your own and God’s forgiveness for any things that are unavoidable in your situation. Know that you are doing your best, and be kind to yourself as well as to your wife.
Love, Margaret

I’m sorry. I feel like a b**ch too. I don’t know how to be patient anymore. I’m so angry and so tired.

This is a harsh response to an honest answer to a simple question: "What's the one thing that bothers you the most about caregiving?"

Regardless of the reason for AD egocentricity, it's understandable for even the most informed caregiver to be bothered by it. Let's go easy on each other in this forum meant to support, not criticize.

You won’t be, but I understand that feeling very well, having walked in your shoes. If he is in hospice, this will end. You truly are not perma-stuck, although it’s hard to stay the course,

I’m glad that you walked away from the caregiving as it was a bad situation for you, but I’m sorry about your brother’s response. Wishing you peace.

Sorry, I just saw how much I vented, I wasn’t just answering the OPs question and I do apologize. It’s my first post here, and I let it all hangout, I hope you don’t mind if I leave it that way, ill be more brief in the future!

I'm sorry you are going through this. Sadly, many of us have siblings who just don't help with caring for elderly parents. I've vented many times on this board about the resentment and hurt I feel while being the one who does all the caregiving for my father when my sister enjoys numerous trips to Europe and basically a carefree retirement. Yet she will dictate from afar what she wants done for our Dad but never helps. Wishing you some peace as deal with this very sad, stressful and lonely situation.

Go ahead and get your mom declared incompetent if she is. That way anything they do after that would be illegal.

I actually like seeing it from time to time and it gives folks who are new a chance to vent a little.

Agreed. If I live through the next few weeks, I will be 69 years old. The past four or five years of caregiving have aged me more than the previous 60-odd years. Now with my mother nearing the end and being the primary caregiver through these days, I can't think of ANYTHING positive that has come from this experience. She is nearly deaf, bedbound, suffering to no end (and yes, she's on hospice) and I am worn, terrified of watching the decline and death. I am a burden to my friends and cousins -- my only family --- no spouse, kids, siblings because I am venting and crying to them always. A therapist/psychiatrist has brought me little to no help, but meds are helpful.
Now I fear growing old and disabled on my own. It's awful, awful, awful. Nothing to look forward to except eventual decay and death.

Well said, RealMary.

I know. My dad is 96. I keep wondering how much longer he can go on. He will probably linger to 100, that will be just how it will go in this sorry situation. Nothing about caring for my parents these past five years has been easy. Most miserable period in my life.

My issue now is the never ending dealing with Medicaid which now my fathers inheritance from
my mother requires more dealing with Medicaid and the nursing home. I am waiting for some awful shoe to drop. I have a lot of anxiety. I am so damn angry at my parents for not doing any financial planning when they should have. I am so damn miserable about this mess. My mother always wanted to break me. Well she succeeded. I’m going on year two dealing with this crap. I hate them.

You have described my feelings to a tee!

I’m glad that this arduous path is ending for you. I hope that you can focus on your financial future. Caregivers often find themselves giving up necessary work to help with an aging parent. I wish you the very best.

I wish you freedom.

Well said, Evamar. It is modern slavery.

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.

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.

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

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!