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

I agree with AlvaDeer... the pain and loss of dignity for the patient /loved one is extremely difficult. However, looking back, my parents never did the things for their parents that I have done/do for them. They continued with their lives. My mom was fixated on decorating her mother’s room at the NH. My dad visited his parents on occasion. It was completely different from the care I have/do provide.

For me it's the suspense. Always expecting the phone to ring with "he/she hit the med-alert button again..." Or knowing that not only one but both of them will probably die in the next couple of years, but who knows when or how, and then the funerals...the paperwork...cleaning out the house that's completely stuffed with objects...selling the house... Knowing that all of this is coming down the pike. This is in addition to dealing with the actual care taking that's going on at the moment that just seems to keep getting more and more complicated.

Dee, welcome hugs to you!

Um, just one thing - you're not still angry with your mother and her siblings for not taking in your grandmother, are you? You're 59, and crucially you are trained and experienced, and *you're* finding the job exhausting - so how on earth would they have coped?

But on the other hand, seeing as they presumably applauded your decision to rescue THEIR mother, they could perhaps put their hands in their pockets and buy you some respite hours? Money is the sincerest form of gratitude, after all.

Burnt, get her some lightweight wireless headphones. She'll hear better and you will have sweet, sweet peace.

Oo! Just googled prices for the type of cushioned ones I was thinking of, and now discover that mobility websites have already thought of this - so there are ranges designed for older and disabled people. Seem to start at about $30, but you'd want to check the sound quality in cheaper ones.

And if she says she won't wear them...? You know what you can and can't negotiate with her, but I'd call this a suitable occasion to be assertive with her. If you can once get her to try them and hear how much better she can hear, it'll be worth a battle.

Not being able to travel or just be away from the house for very long.
But Marialake, I hear you honey, and it sounds like you are dealing with a Narcissist Elderly Person. That's a double whammy .

What bothers me the most about caregiving besides the total disrespect that comes with it, is the resentment it has caused in me. I am the caregiver to my elderly mother who does not have dementia but has some physical and mental problems. Mostly just old age. I have to do everything for her. Meals, laundry, cleaning, yard work, shopping, phone calls, appointments, etc... basically I'm a slave. I can't even call myself a servant because servants get paid a wage. I do not. Every moment is all about her no matter what. She has the greatest empathy and compassion for everyone and they think she's wonderful. She does not have the slightest empathy or compassion for me and never did. She pulls herself together beautifully when there's company or when my siblings (who help with absolutely nothing) come by to visit. She doesn't dump her gloom, doom, and misery on them ever. Her panic attacks and anxiety never come on when there's people around. That's only for me. She only complains incessantly about her health to me. I don't want to forget there has to be a cable news station blaring every waking moment as well and unless I start using earplugs, there's nowhere I can go to get away from it. She picks several fights a day. Of course I have to be able to predict what kind of fight she's in the mood for. She enjoys getting me upset. I think the part about caregiving that bothers me the most is the resentment that it has caused me.

What's bothering me lately reading the many posts on here is that many people don't prepare or plan for their old age, and when they get to that point, they just become a HUGE burden on their aging children for years and even decades. Many of these people are not even appreciative of the sacrifice their children make. Instead, they demand, demean, manipulate, destroy their children's health, finances, and marriages. Granted a lot of them lost their minds to dementia. But that makes no difference to the damages they cause.

What we all can do is to prepare for our own "golden years" so we don't rob our children of their lives.

I am new and grateful to have found this site. I am a 59 yr old retired RN who recently (2 months ago) took my 95 yr old grandmother out of a nursing home (where she was totally isolated due to the Covid shutdown and also not getting good care) and brought her into our home to care for her. Even as a nurse, I can tell you that this is the hardest work I have ever done. My grandmother broke her leg (requiring surgery) 5 months ago and while it is miracle that she can walk at all, her mobility is the equivalent of a 1 yr old. She can walk with a walker, but just barely. She needs someone right with her holding onto her gait belt. She also cannot get up or down out of the bed or a chair without assistance and use of a gait belt. I currently have to plan everything in my life in 2 hr intervals, as that is the length of time she can hold her bladder without needing assistance to the bathroom and all that is associated with that (getting up/down from the toilet, wiping, pulling her pants down and then up again). I am totally exhausted and angry at the fact that her 3 grown children (including my mother) all had various reasons/excuses for being unable to take her in to care for her and because it was they who were all telling me that my "Nanny" was "going downhill fast". There is no doubt that Nanny was depressed due to the circumstances she was in (in substandard nursing home), but she is fully cognitive and now that she is living in my home she has not only perked up to the point that I fear she could easily live to be 100, but she has become quite needy in what I call her "pillow fluffing" needs. Looking back, I realize my decision to do this was more of an emotional decision than a rational one. I truly did not fully considered how this was going to alter my (and my husband's) lives for what could easily be several years. I own what I've done and I am dealing with it.....and I know it was the right think for my grandmother, but I feel like I went to work in early Sept and 2 months later my shift has not ended. On the up side, I am grateful to have found a place where I can release/share some of my frustrations. Thank you all for listening.

I am new here and so glad I found this website. It is a comfort reading all the questions and answers - makes me feel somehow connected.

It is hard to pinpoint what is the worst..it seems to change daily. I think overall is the feeling of isolation and that the world is passing by and nobody knows how hard my life has become. This has resulted in total resentment and anger towards my sibling whose life seems to be going on normally while mine feels like it has turned upside down.

The pain and loss of dignity for the one I am caring for.

Watching the patients memory go, their mobility slowly or rapidly decline, and there is nothing I can do to help them

The constant negativity. He watches tv news all day and talks about how everything in the world has just gone to hell. Never once says the meal we fix was good. Our grandchildren are too noisy and too active. All he does is sit i the same chair all day and watches Fox News.

Today this is what bothers me most caregiving.
A mother who did not take care of herself when she was diagnosed with diabetes.
She is incontinent and has MCI. A father who will not get treatment for his anxiety
and depression. It is a crazy merry go round and has been made worse by Covid.
I know I have posted about this before-sorry. I going to take a week off from them.
Very tired myself.

I feel the same way. The other day I was choking on coffee - went down the wrong pipe - and coughing and gasping - and my husband sat in the living room eating his cereal like nothing was happening and didn’t even ask how I was. I’m thinking of getting a first alert or other device in case something happens to me I don’t think he’d know what to do. So darn frustrating - but that’s the Illness.

I would say isolation and loneliness. It is worse now with Covid 19. Both my mother and I are in high risk categories so I have stopped taking her out as most restaurants only offer curbside pick up or outside dining 6 feet a part. I have found myself eating more since we are stuck inside 24/7. And gaining weight has become a big issue for me as i have always been thin. I think I've hit all the big ones except for boredom. I think coronavirus is here to stay for a long time. Sometimes my depression becomes way too much to deal with and after waiting on mother i surrender to my bedroom and read, paint and watch netflix. I also pray a lot.

My granny being ungrateful. Feeling like I have to do what I do for her. I don't have to do anything for you I do it because I care about you even though I didn't get the same treatment from you. Acting entitled doesn't help your case.

My Father's anxiety is exhausting.

Cindy, I thought the same way when I was taking care of my mother alone for eight years. It would have been nice for other family members to offer help in a small way. I would get upset sometimes, but it does not bother me any longer. I would be the first one offering to help and appreciate all the caregiving, if it was them doing the caring. You can't teach old dogs new tricks, they will bite you where the sun doesn't shine.

What bothers me is that my mother doesn’t appreciate me. She’s all there mentally, but physically she needs help with everything. And I do a lot for her, but she never thinks it’s enough. I feel more like she treats me like a slave, she barks out orders almost everytime she sees me in sight, I even forget what I came in the room for sometimes. It annoys me to no end sometimes. I know she cares about me but she rarely shows it. It’s all about her. She never shows any empathy for anything going on with me physically or emotionally. But when siblings come for a visit
she’s a different person, loving, catering to them with her walker and all, would never ask them for any help whatsoever. They get all the good parts and I get the crappy ones. That’s my vent.

Many things but if I have to pick one it is being totally alone. No help with any aspect of mom' dementia. If a family member or friend would say hey how about a cup of coffee. It would mean so much....I'm sad all the time. Watching mom go through this .

Right now what bothers me most is not being able to even go for a walk around the block because I can't leave mom alone. Have to have literally everything delivered. It gets frustrating.

People that dont appreciate it and or makes things harder.

The only solution is PRAYER. I promise you this is a hard journey . Complain out loud, laugh with the person you are taking care of, walk away-don't engage in their complaints, etc. Love them, and pray for them.
I took care of my mom with alzeimers so Know where your coming from.
Be calm and pray hard..walk outside when you get frustrated, even for 5 minutes. God bless.

After doing this for awhile, I think my two biggest things are that people just don't get it. They just don't understand what it is really liked to have a parent w/dementia and the person with dementia doesn't get it either! You just feel very alone!!

Covid-19 erased all my efforts and progress with helping my Mom. I finally got a job and had a pretty decent system of caregiving in place for her but Covid-19 is chipping away what little control I have left. I’m exhausted mentally, physically and emotionally. I can’t get anything cheap anymore due to things being out of stock. I can’t practice social distancing because I can’t do curbside pickup anymore. I have to run in and out of multiple stores just to find Kleenex and aspirin. I barely have any downtime because I have to figure out what to make her or get take out. I had a cashier get mad at me because their credit card reader failed to read my cards and then when she kept swiping them they triggered fraud activity alerts. It was the only place that had the Kleenex that my mom wanted, so I ended up using an ATM resulting in unnecessary transaction fees. I cooked, ran around to different stores and when I get to my Moms, she’s falling back on old habits, not staying hydrated and taking medications as prescribed. I gently reminded her that now is not the time to end up hospitalized, even though I’m not sure if I’m passing on anything to her by going shopping for her food and necessities. Anyway, it was a rotten day again and I’m hoping to get some rest tomorrow. I pray that she’ll be okay, but this Covid-19 is going to be an uphill battle for all of us caregivers and our LOs. God Bless You All.

Finding the compassion that is needed everyday. Not just for my husband but also for me. I am so exhausted both mentally and physically.

In my heart, I know he doesn't understand what he is doing and has no way to make changes. But when he repeats same actions = hiding dirty depends, not making to or forgetting to go to bathroom so I have to give him, rug, bed, floors, toilet, tub clothes a bath each day.

Dad sometimes goes to sleep very late. I help him go to bed. I'm very tired by the time he goes to sleep.

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.

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

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.