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

Knowing it is the disease and it still doesn’t help..

Love it. Completely normal. Please take care of yourself!! It will make the job easier. And when it's over you will still have some things normal.

The utter lack of appreciation is my biggest frustration by far.

Constant negativity: the room is too hot or too cold; not enough salt on her eggs; this hurts, that hurts, everything hurts; gas on her stomach; a new pain when she wiggles her left big toe a certain way; her current audiobook is stupid, the TV show is stupid; if it's sunny it's "too bright," and if it's cloudy it's "so gray and gloomy out there!"

Once she said, "Oh, God, I'm so miserable!" to which I couldn't help but respond, "You certainly are!" (And I'll draw the curtain now on the drama that ensued...)

Makes me want to hang myself in the attic some days. Thank God for my husband, who can make you laugh about just about anything.

The thing that bothers me the most about caregiving is that after 8 years of taking care of my mother with vascular dementia, I have not learned to accept her condition and to empathize with her. I want to be a better caregiver to her, but I don't know how. Any suggestions?

One thing...that's a laugh. Everything about it bothers me.

The thing that bothers me most is I'm bored to tears talking with my mother.
She is 90, in memory care, I'm 70. I completed an advanced degree and had a career for 45+ years. I retired at age 69 and was immediately swept into caring for two parents who had a long, carefree retirement in FL, but came back to WI when they developed medical issues and wanted their kids nearby. Thought they would be able to stay in their 1950's house (no updates) on a high maintenance acre. Never had to care for any of their parents or relatives. Dad passed on after a year of hell (property maintenance, falls, incontinence, oxygen tank, morphine administration, open wound care, general nastiness to me and my brother who did all the care giving until he went to hospice.)

My mother barely completed high school, got married, had a bunch of kids, never held a job outside the home. She let my dad and the parish priest make ALL the decisions for her. No intellectual curiosity at all. No hobbies. No interests. No adult friends that she maintained. Admits neighborhood and family gossip is what she thrives on. I don't have any memories of her as a mother. Didn't teach me any domestic skills at all--none. I learned that all on my own. Mom consistently got in the way of Dad and I having necessary financial discussions (he made some bad decisions that I had to "fix.") She didn't want to hear about money or anything remotely "unpleasant." She operated under the premise that ignoring issues will solve them.

I visit her at the memory care, used to be 3-4 days per week and I could feel my brain cells dying from the boredom. She continually repeats the same questions, several times a minute. Does not recognize that dad is gone, says she sees him. Ask me where he is multiple times a minute for hours on end. Wants to gossip about family members, in a constant repeating loop. I have absolutely nothing in common with this woman. When I get away from there, I'm in such a bad mood that my husband, who is still working full time, says I should cut back on the visits. He's tired of hearing about mom.

Put my post in the wrong place sorry.

I was bothered the most by the memories of abuse that had long been buried. For some reason, these memories came as she continued to decline. I shared these with my therapist who helped me through all of this. She's dead now and I have not shed a tear or been back to visit her grave but once.

The strained family dynamics that get further exacerbated when dealing with an ill loved one. The lack of empathy, criticism, ignorance and selfishness among family members is disappointing. At least with my ill loved one's behavior can mainly be blamed on his illness, but what are my family members' excuse?

Every Single thing! This disease isn't like cancer or hip surgery or bronchitis. This disease is like a diamond; and not in a good way that has so many interconnected facets, you cannot pick Just one without saying "...and also..." It's a downward spiral that takes all those involved with it.

Oh yes!! These illnesses have the trademark of selfishness. They will not care about the caretakers. Empathy goes away first.
i learned to keep my money, some clothes ready outside (somewhere else), some packaged protein bars in my drawers.
my mother would get furious if I caught a cold, or if I hurt myself from work.
Empathy gone, remember.
Keep for yourself and stay safe.

Onlywhenlucid

I hope everyone had a good Christmas Day and it was stress free. It was a good day for me, but the constant uphill battles of caregiving are extremely stressful. Mom didn’t have to do anything...nothing at all and I made sure of that! Christmas Eve, she asked for a cheeseburger. I took her one of the best from Five Guys with some fries, in between last minute shopping, along with toilet paper that she needed, cranberry juice and some Azo. She ate her cheeseburger, fries and indicated her UTI symptoms were subsiding. Her mood was good. Then Christmas Day, I called to wish her a good day early afternoon and then took her 2 plates of food I made, including Honeybaked Ham slices, green beans, corn casserole, potato salad, and cheesecake tarts for dessert. She ate most of it and dranked some juice. She was again in an okay mood and seemed very relaxed. The most relaxed I’ve seen her in months. I gave her a few gifts (socks), a Poinsettia...nothing special because I knew she wasn’t in the Christmas mood (with depression). I kept it really low key and as always adjusting my mood to match hers, which is low. Today, I called around 7pm, the usual time I call to check-in and see how her day went and to see if she had her 2nd plate to eat and once again, she sounds miserable. She didn’t eat at all and sat in her chair all day. She only had to heat up the plate in the microwave and couldn’t do that. She barely talked to me and seemed frustrated. I bet she wasn’t happy about having to eat leftovers. I struggled to get a conversation going, but it was mostly “oh’s” and “uh-huh’s”. There are times when she can laugh and conduct a two-way conversation, but today I was expecting a bit more and it was like she was mad at me. I will stick with my plans to wait until Saturday to take some food and visit. I’m not happy about the food waste and get upset that I try my best to get her to eat and drink, but she only seems to do so when I’m there or if the food is exceptional. I think if I wait a few days, she’ll eventually do it and eat leftovers. I feel guilty that I can’t do more than I do, but I’m praying that she eventually tells me what will work best for her because I’m not a mind reader. Just saying ‘miserable’ doesn’t help me. Let’s fix it! She doesn’t want in-home care, AL, or daycare. I need to continue to work full-time, so my support will be somewhat limited. It’s team ‘can’t win’ everyday and I’m just losing at caregiving. It’s just me and only me...no help, aside from meals on wheels, which she doesn’t like too much.

What bothers me most is the effect an aging loved one puts on the family as a whole emotionally and financially.
My family life has been changed due to not being available for them while handling caregiver duties for mother with dementia. My mother is resentful and mad because of her situation and family upset because not there for them. And I’m just here trying to maintain a balance. It’s stressful and lonely at times.

The self centered attitude is strong in my MIL too, but really the worst thing is having no time for me at all ever. Even when I sit down to watch a 30 minute sitcom, she’s asking for something, walking slowly by in between me & the TV, or making sad noises in the other room. My ToDo lists are full of things more for others than myself. Sometimes I will just sit in the basement or outside, just to take a moment but thoughts of her well being never leave my mind. As an extreme introvert, I need my alone time. I don’t get it anymore though.

What bothers me most about caregiving is, no matter what i do, it wont change the course of her Alzheimers Disease. So i love her unconditionally, i hold her close to me when i know she is afraid, and i make sure that no matter how tired, drained, angry or frustrated i feel, i make sure the only thing she sees is love. Everyday its a struggle, but i wouldnt change the time i have had and continue to have with her. Everyday we create new memories as the old ones are lost to her.

Thank you to all the caregivers for all that you do. It is a thankless job, but you do the best that you can do and noone can fault you for that. I am 39 yrs old. I have been caring for my mom for 17 yrs now. My life has been Mom, work and home, no husband, no children, 6 other brother and sisters that never cared enough to offer help. I have had to fight the system to try and get help in the home which i have finally succeeded. I am a Registered nurse by trade and have been very fortunate to have the means to care for her although overwhelming and tough at times as the bills dont stop coming. I stopped working and devoted my time to her full time for the past 3 yrs as she suffered a massive stroke which left her bedbound, with a feeding tube. Tomorrow on 12/29 with God's grace, she will be 89 yrs young.

I do everything for my mom but she never says thank you and acts like my non involved siblings are fine but not doing a thing to help. I work 60 hours a week plus take care of her. I’m exhausted all the time.

My 85 year old dad lives with me and is very pleasant....doesn't need or ask for much. I'm 45 and a 21-year Navy Retiree and I feel very guilty about trying to have a life when my dad doesn't have one. He's a fall risk so he is limited in what he can and cannot do. He cant drive, his eyesight is bad even after cataract surgery and is hard of hearing, BUT doesn't want hearing aids and cannot understand technology of any sort to include a cell phone..ipad...barely a remote control. He only has a niece and an ex-girlfriend who calls him maybe every couple of months...other than that it's only his care provider (17 hrs a week) and me. I want to travel more...visit my children...visit friends who are also retired...live my life. I feel guilty when I do leave the house for any reason. I dont feel close to him..the bond isn't there or I'd WANT to spend time with him. He repeats himself and always talks about things that are silly to me. I'm very dissapointed that he made poor choices throughout his whole life, gave away about 30K to women, didn't pay into a retiree pension, never remarried, etc...These days I practically live in my room and I'm very sad. I'm more sad that I'm a selfish woman and cannot give my dad the love that he needs. Please pray for us, thank you.

Almost all the Alzheimer’s patients are that way,

It really bothers me that when I look at my husband of 52 years, he is just a fraction of the man I married. I am a retired nurse and have dealt with demenita and Alz for over 30 years. I feel guilty that I resent that he has developed this disease. I know it is not his fault, but I am 13 years younger than him. He retired 20 years ago, me just 3 years ago. I resent that he cannot be left alone for any amount of time that he get anxious to where I am and what I am doing. He follows me around like a little child and acts like a little child most of the time. He gets angry and wants to argue about everything. He refuses to wear his hearing aids and I have to yell at him most of the time, just to carry on a conversation. Although conversation is very limited as he usually only wants to tell me about negative things that happened in his childhood and years before we were married. He can't remember from 9am in the morning until 5pm at night. No matter how many times I tell him something he does not remember it. I am going to try and find a help group around me, as I don't know how I am going to cope with this. I know I sound like a selfish person. But I am not. I spend my time doing for others all the time. I just feel cheated.

I had someone come from an agency to talk to my dad about home care. He's not willing to pay for it though.
Plan B, I need to make myself scarce, so he sees the need for it.
I just feel bad leaving him all alone, he's lonely. But making him rely on me is not helpful either.
Maybe I can find someone from the neighborhood he can talk to.

My dream is for dad to sell his house and move to Assisted Living where he can make friends. I hope and pray G-d willing.

The selfishness of the patient.

I have a relative who is pretty self-centered. When her daughter was in the hospital dying of cancer, the mother hollered out "WHO is going to take care of ME now?"

That was several years ago. She has gotten worse, and she does not even have dementia.

I feel like a prisoner. My 102 year old grandmother is hateful and passive aggressive. My husband and I had a grandson and a great-grandson born this month and can’t even go see them. We live in MI and most of the rest of the family lives in KY. They don’t even call her, much less help in any way. I am in a bad place today and need to stop before spewing a volume of negativity and tears. 😥😡🤮

For me, the most difficult thing is the egoism of the person I care for. He cares only himself, it is very annoying. But when I'm not angry, the hardest thing for me is to watch how he gets worse.

Having my mother constantly apologize for being a pain. That's why I'm here she is my mother!

I think there are many things that bother me about care-giving. Picking one to be what bothers me 'most' is hard. I think it would probably be the deep well of suffocating "aloneness" and weight of "responsibility" I feel. Even with all the help I have and the input I welcome from others, in the end, when it's all said and done the choices made and actions taken are all ON me.

The constant complaints. She is miserable 88 year old mother , of one , child, me, who is 56 and trying her best . I hate it that she is so lonely and I visit every other day . I talk to her a lot just to check in . She really has no one other than me . She has outlived all of her friends and family . She can’t even cry about it . We talked about it to her doctor and she only said that aging is not for sissys . She didn’t discuss how to help . No meds . I talked with the doctor a year ago about it and she really didn’t like giving meds to elderly; afraid of falls . Mom constantly wants to move in with my husband and I but that will not happen. I keep telling her that but she keeps telling me that . Just caught. Her physical health food . No Dementia. Just can’t get out of bed and do stuff like she use to do. Just miserable in her , how ever, many , last years. Hardest thing I’ve ever had to to deal with and my father died with cancer .

Feeling that I don't matter. Feeling that I have lost touch with the best parts of myself. Feeling I can't concentrate and must be losing my mind. Feeling that this will never end.

I dealt with narcissistic females in my family. So much expectations with almost no appreciation. Dealing with entitled individuals is a never ending journey.

HelpPlease1963: " I talked with the doctor a year ago about it and she really didn’t like giving meds to elderly; afraid of falls ."

That's what my mother's doctor said when I brought up meds for my mother's anxiety and obsessions.

Easy for those doctors to say -- they are just assuming that the daughters (or sons) who bring the elders will just "put up, shut up, and offer it up" as I like to say. At that same visit my mother's doctor told me that my mother "needs social support and for someone to check with her every day to see what she needs." I just looked at that doctor (and I'm sure the disgust was evident, as I don't have a poker face!). When I told my mother what the doctor said, I was then forbidden to go back to any examining rooms anymore with her (except for the ERs). My mother thought the doctor was talking to me and not her, when in reality my mother didn't hear what the doctor said because she refused to get hearing aids.

I was NOT about to check in with my mother every day to hear what she "needed." She thought her "wants" were "needs." My mother refused AL, but also refused to hire caregivers. So she showered once/week and was afraid she'd fall. I did not become her shower attendant, as that was the line I would not cross. I asked her one time if she told the doctor that she could only shower 1x/week because she was afraid of falling and it was so hard climbing over the tub edge, and she said of course not, that she didn't want the doctor to know that. She loved to showtime.

So what is the plan for when your mother can't live alone any longer? You write that she wants to move in with you, which you will (very wisely!) refuse to do.

My mother told me years ago that she could never live with me, with a laugh. I guess she thought it hurt me. I was going to use that if I ever had to. One of my brothers ("Sonny No-Show") told me one time that although she'd said she wouldn't live with me, that she actually expected me to take her in (How he knew that, I have no idea, since he rarely talked to her.) NO WAY would I do that. I stayed with her a few years prior for 8 days and nights after she injured some muscles and became nearly helpless. That experience taught me that I would NEVER agree to do personal care for my mother again. She nitpicked everything I did and ordered me around. Despite feeling so sore and weak, how did she have the energy to tell me EXACTLY where on the towel rod her glasses-cleaning cloth should go? It was horrible.

When she had a gallbladder drain put in after her gallbladder infection (they wouldn't remove it because of her age and conditions), the nurse wanted to show me how to change the bag. I told her I wouldn't be doing that kind of personal care, and she said, "Oh, but what about when she calls you in the middle of the night because the bag has come off'? I reiterated that I wouldn't be the one taking care of that. And then the nurse tried to show me how to put a special holder on a leg for the drain bag. I again had to reiterate that I would NOT be doing that.

I'm sure that nurse thought I was a witch. It's just an example of how the medical professionals assume the elder's child will be doing things like this for the elder.

I was so afraid that they would release her to rehab at home. I couldn't stand it when the therapists would say things like, "We're going to get you back home!" I was prepared to fight discharge to rehab at home, but she spent 17 days in the hospital and so the only rehab recommended was in a SNF. And after she ran out the rehab days, she resided there as a permanent resident -- even stayed in the same room.