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

My mother is still alive. When I hear the broom bang on the floor, I know a rage is coming and I am scared. I am 59 years old and terrified of my 82 year old mother. God, c'mon, isn't it time for her to go?

The conditioning that makes you hyper aware of certain sounds...today I heard the familiar bang of someone knocking over something heavy and stood ready to head upstairs to help dad get up...before I realized I was at work. Sort of scary. 

I guess my real answer to OP would be how fundamentally being a caregiver changes how you experience the world.

Those tears falling from Moms face....I can't take it...

Scout0421, It's funny, but you're only 40 and I am 20 years older and still feel the same way about my mom in her 90's ..... I don't want to be buddies and I love many of the old days too, but don't want to hear about them over and over.... and so on...

I have constant simmering resentment toward my non-contributing brothers, who take far more than they give. Mom worries about money constantly and unloads these worries on me, yet continues to let them drain her of all her assets. I have implored her to stop giving them money as it worries her so much, and she answers. "I know I enable them." I feel helpless and frustrated and trapped. I know these emotions are not healthy ones - I feel them eating away at my well being every day. I'm worried about the person I am becoming.

Caring for a husband with Alzheimer's has changed my life forever. I'm a prisoner in my own house. Friends and family don't visit very often. I have to take him with me to the store which, sometimes, is not a pleasant experience. I want my life and my husband back they way it was before.

What I hated the most about caregiving was the fact I never will have the wonderful carefree fun retirement that my parents had. They enjoyed 25+ years of travel, dining out, movies, etc. And they never needed to take care of their own parents thus they had no idea how stressful it was.

I had to throw out my "bucket list" because the stress caused major health issues with me. Vacations are out of the question and probably will be for the rest of my life :((

What I hated most about caring for my grandpa was watching him slowly lose who he was. Every now and then he would come back to life and I could see the man he used to be. But most of the time he was just a near lifeless body who could only sleep, eat, drink, and barely walk. He only came to life when shown old movies, or when you sang a song to him. I treasured those few moments, and even recorded a few. He was a good man. Now that he has passed I am left taking care of just his sister. She is a joy... most of the time. What I hate most about being her caregiver is the poop. The absolute sheer amount of feces I have to deal with on a daily basis. It gets everywhere. I hate it. I feel like I have to lysol the whole house after she has a bowel movement.

Can relate to you, Scout. I just turned 38 and mom is only 56, but we started going through this early. I figured I would be in my 50s or older before I entered this phase of life.

I have to say I think the one thing that bothers me most at this moment is loss of personal space and privacy. That part will get better eventually once we are able to get her situated with care that is not in our home. Until then, I feel like I'm living under a microscope.

You can teach an old dog new tricks, but not a dog with Alzheimer's or other dementia!
So difficult to lose the person lost inside the dementia. They are gone from your normal life before their body dies. So very sad!

What I hate the most about caregiving already (I've just started these past few months) is that my youth feels like it's being held hostage. My mother was almost 50 when I was born, so she's 90 and I'm in my early 40's. My husband just turned 40, our kids are under the age of 10, my career is just about to peak, and I'm in the final chapters of my youth where I'm still active and healthy and instinctively still wanting to run and play and have fun exploring life and the world with my young family. Yet I'm spending most of my time trying to understand this severely old person with cognitive challenges. There's a massive generational gap between us that was always there but has gotten even worse in recent years. And then, there's my mother-in-law who is dealing with the same caregiving challenges with her father that I am with my mom! I feel guilty about it but I feel cheated. I'm not ready for this yet. I don't want to be my mother-in-laws peer on this issue, commiserating with her. I feel cheated that my children, under the age of 10, already know about incontinence underwear and home health aides and dementia. It sucks for everyone, including my mother who has a daughter that just can't relate to feeling old yet.

I have lost my life. I work hard all week and now my Saturdays are devoted to driving my mother around. She complains about moving from Ky to Delaware, that her caretakers are not of her same race ( a southern thing) and that she is not given enough pain medication. I cannot go to every doctor's appt with her and she is not a good advocate for herself. I rely on the assisted living to take her to her local doctor's appointments. I am so frustrated now if it weren't for the glass of wine I am drinking I would explode

My husband doesn't seem to listen to me about his mom, my mil, I say she needs 24 7 care, in the house since I can't and won't do it because of my own health problems , or a facility. She needs someone properly trained to handle all of this. Her other kids don't seem to care and have nothing to do with her. :( Sad, really. They are punishing her and every one involved.

Sandra 21 you can change this. First set boundaries , there not your parents anymore there in another world. It’s called selfish, there not them. Before you go down a resentment path , if your not already there. Next take time for you. There are professional that handle things and Medicare does pay a few hours to come in at that house. Use them. Stop and protect yourself. As you said your own mothers would. Yuki

LOL! You are not alone! I actually have "It's all about her" as her name on my phone guide. My mom was always like this but now it has intensified to where I feel I am her, and my dad's slave. I had to move them both in with my family 8 months ago cause they both have dementia and I'm already hating life. I'm 57 and I hate the thought of wasting the rest of my good years being a slave when she would not have and did not do the same for her parents.

OMGoodness, feel the same way. I guess I feel that I would also like to be healthy enough to take care of my mil myself but it is what it is.

Working 7 days a week 12 hours a day and Knowing that I’ll only be able to take a vacation when she goes into a nursing home or die. It would be nice to be able to schedule a break for myself without having to put her in a home or worse.

Everyone must remember, that your no good at helping them if your not well. Your health and mental state must come first. Even if it mean hiring out help. You must not let your self go. Do what you need to do, but take care of you first, it’s not selfish, it’s survival ! Yuki

Anjolie, the ER did that with my bedridden mom who got diagnosed with bronchitis. I think the medical community has taken the HIPPA law too far. Bedridden mom was vegetable-state, couldn't move a finger or even talk at all. She just stared into space. They asked me questions then had me sit in the waiting room. When it was time to release her, they didn't even tell me anything. Just gave me her prescription and told me to give it to her. I looked at the dismissed form and saw that she was diagnosed with bronchitis. I couldn't even ask the attending nurse if it was contagious bronchitis. I was so pissed off. I had to go home and google it.

Ryno1967, my dad was like that. It was all about him and no one else. He didn't care if I was sick. I had to take care of him. I finally told him several times that I have high cholesterol and a high risk of heart attack. He didn't care. Then I said slowly that if I have a heart attack and become hospitalized or bedridden like him, Who Is Going To Take Care of Him???? I looked him in the eyes and said that we all know that my oldest bro-of-next-door will take over dad's care. We all know what my brother will do if he's in charge. I looked Dad in the eyes and reminded him that bro will put him in the nursing home, bro and his family will move into Dad's house/land and he will rent out his own home - more money, you know... Eventually, my dad realized how important I was in his life. After that, if I had a headache, etc.. he would tell me to go rest and he can wait... So, that's my two-cents worth on that subject.

your so right its always about them????!!!!

I'm going to vent here, not so much about what I hate about caregiving, but about the rehab hospital that sent Mom home with antibiotics and a wretched cough, leaving her family with ZERO information about her infection.. I put on a mask, even though the whole family is now sick.. Mom took offense at the mask, saying 'Im not catching, you know.'. Maybe not now, Mom. You already gave it to us. Thanks so much, Hospital; I can't get in to see my doctor until next week.

Nikki 99
Janis Joplin - Me & Bobby McGee
My favorite version. Yes sometimes I miss my freedom but compared to some people my Mom is easy. However it is getting to be more and more. Thankfully I am a believer and God will give me strength to face each day. I think if I look at the big pic all at once I freak out but gotta look at it bit by bit.

I don’t feel like I know who this person is or who this person will be tomorrow. I feel like i am caring for a stranger and I never know what is coming tomrrow. On good days she is good and Dad is calm. On bad days she is confused, lost and aggravated and Dad is sad and angry. So difficult to manage all the emotions and needs and to stay objective and calm. Feeling suffocated where I can’t just be me anymore. I have to be what everyone else needs.

The lack of gratitude.

Thank you for exposing the elephant sitting smack in the middle of the room! I have discussed these exact issues with friends. The situation for many of us is a moibious strip of insanity with no way out!!! My mom is a vague, confused little old lady who has outlived two husbands, doesn't know who I am, thinks my husband is her boyfriend and cannot provide even basic care for herself. Yet she is being medicated for high blood pressure, high cholesterol, low thyroid, osteoporosis, arthritis and dementia. WHY???? Because she is alive, she therefore must be kept alive! Even though she is existing rather than living. We need a reasonable, humane paradigm shift in elder care before there is no one left to care for the elderly. Three years ago my husband was diagnosed with CTE, vascular dementia, ministrokes, left temporal lobe focal seizures, central sleep apnea and idiopathic bradycardia. It took 17 years to get anyone to listen to me that something was wrong and run some tests! He is only 63 years old. He fades a bit every day. My heart is totally broken for him, me, our children and grandchildren. I dread the future for all of us!

Realizing your whole life is narrowed to the solitary pursuit of getting a demented geriatric through the day. One pointless day after another...feeling your life draining away. Also, the appalling realization that one's life has been hijacked because of Big Pharma. For the sake of billions of dollars in profits, we keep old people alive. And for what? They bankrupt the next generation, destroy the medical system, take up space in doctor's offices and hospitals, require endless attention that requires giant bloated bureaucracies and overpaid union employees; they potentially ruin the last third of their kids' lives, robbing them of time that belongs to their own children, spouses, friends, etc. Add to this the environmental impact of diapers, tubes, plastic pill bottles, elder-related paraphernalia, med-saturated urine going down a million toilets... Past a certain point life is pointless; it has no meaning. Caregiving is about getting a demented shell of a human through the day; minute by minute, hour by hour. It's like being buried alive. We need to adopt the policies of Holland - let them go. Thin the herd. I love my Dad but his life is wretched; he had a good life. It's my turn now.

To Nikki99, thanks for the smile about the tune - "Freedom is another word for nothing left to lose". Janis Joplin's "Me and Bobby McGee". I'm sure it is on YouTube if you need to listen so sing away!

Dear Dana,

Both of you, your mom and you, are trapped by depression, and I think you know that very well. That is why you see all dark and she does too, well, aside from all the physical limitations your mom has, which are a very understandable reason for her to be so depressed too.

You know Dana, you may have heard this on this site many times but it’s true. Not everyone is built for caregiving. And someone that has a hard time with depression is not meant for caregiving, no matter how much you want to do it.

Because what happens when we do something we’re not made for is that things start to get out of control, and that affects the person doing them and, in the case of caregiving, also the person we’re caring for.

I can relate to what you say about your mom always keeping the house in perfect shape and you not having the energy to do the same. It is interesting when you stop living with a person for several years (in my case probably about 18 years) when you live together again you discover or remember many aspects of their personality or their ways that you didn’t before. In my case it was how neat my mom likes everything to be, and I mean neat. Great order everywhere all the time is very important for her. I can perfectly live cleaning the house once a week, but my mom cannot. And to her point, where we are it seems like dust flies everywhere so it accumulates more easily; yet, that doesn’t bother me and probably would not bother many, but It actually makes her ill when things are not in the shape she likes them to be (and it is her house, her environment).

I’m telling you this, so you realize that you are right, and even the fact that her house, her environment, is not in the shape she would like it to be makes her most definitely more depressed. And you simply cannot give anymore.

And that’s one tiny example of things that another person could do, because that’s what they do for living in an outside care facility, that you cannot. 
I understand it breaks your heart to think about that possibility, but sometimes we are terribly mistaken thinking we are doing the best we can do, when there’s another option that actually could work much better. So, I’d say, why don’t you give it a try to place your mom where she’d be well taken care of, and it doesn’t matter if she doesn’t participate in their activities, the mere fact that she will be attended to, in a clean and orderly environment, and YOU coming to be with her every day if you want, spending quality time with her...I think that, after a while might start feeling like the right choice for her and for you.

When one is becoming empty, no matter how much you try to give, it really makes you feel worse because you literally have nothing to give other than your good intentions. Maybe it is time to take a step back and re assess the situation, don’t you think?

Is your mom going to feel like you don’t want to take care of her, that she is too much of a burden, that she’s been left to die in that new place? Maybe..at the beginning. But if you say she says she wishes she wasn’t such a burden for you, I think she will feel relieved, as a mother, to not be that burden anymore, something inside her might really appreciate that and feel relieved.  And if she sees you are doing better, looking better, I think she will feel better as well!

All I’m suggesting is to give it a try, a good try. And go be with her everyday, take her out, talk to her. Become her daughter, friend and companion again, I think that gets lost when we caregive. That I’m sure would light her life up and yours again!

You might be inclined to immediately discard the suggestion, because when we are depressed and in such a deeply complex situation we don’t think there’s another way. Yet, remember others that are not living the darkness you both are, may see what you don’t.

Think about it. When one is not made for caregiving (physically, emotionally, mentally) one needs to accept it, and do something about it, for your loved one and for you.

Rosses003, Katiekay, Yuki500, thanks. I do have a therapist - we do phone sessions because I cannot leave Mom unless I have a sitter. Mom has limited mobility and vascular dementia, and if I leave her, there's a chance I'll find her on the floor. I do try to take breaks when I can, get a sitter, a little time at the gym, or just to the library or bookstore. Work, even only three days a week, is a saving grace because, awful as it is to say, it gets me out of the house. Speaking of, the house is a wreck, and I have no energy or motivation to tidy up or clean, and that makes Mom more depressed because she always kept a perfect house. She cries all the time and says she feels so bad about being a burden to me, and I say she isn't, that she took care of me and helped raise my daughter, and now I take care of her.

My daughter is going to college out of state and in a very demanding program. She's going to summer school, and I am not going to ask her for any help with caregiving. Eventually, I'll probably have to sell the house and place Mom in a nursing home. She's in rehab now after a UTI, to get her strength back, and she needs two people to transfer. I can't handle this. I have a wonderful aide who comes three days a week, when I'm at work, to help with Mom but that's not enough. I don't know, maybe if I hire more help I can keep her at home longer. I know Mom thinks a nursing home would be a place to die, and she is right. Some thrive with the activities there, but when I've gone out of town briefly and placed her for respite, she just sits in her room and watches TV. She reads still, but that's becoming more difficult.

Maybe it's depression, and the drugs don't work for me; I've tried. But I think it's just reality. There will not be much left of me when caregiving ends. All I can do is pray for strength to get through one more day.

When I say I pray for cancer, I do not take that lightly. Mom and I took care of my Dad when he had cancer; she did most of it the first time, took him to his chemo treatments, and he had four good years. When it returned, he only lived two months, and I did more of it. We were both with him when he died. Both depressed after that, but life went on. I get none of the cancer screenings, and if I get it, I will be honest with my daughter about why. There was something left after caring for Dad, there will be very little after Mom. It's been suggested to pray for a servant's heart, and I have to admit I've been resisting that. But being in this situation, I am meant to be a servant to my family. I just hope I can hold out long enough to see my mother through to the end, and my daughter through college. I just hope she finds a partner; she has no family but me and my mother. My health is declining, migraines getting worse, and I am terrified of a stroke and winding up with vascular dementia like Mom. Can you see why I would prefer cancer so I can move to Oregon? I'm already on more antihypertensive medication than Mom, and I was so healthy before caregiving; I used to run half marathons and now, barely walk a mile or two.

Thank you for giving me a place to vent. Now it's off to see Mom in rehab and literally beg them to keep her another week, or maybe I'll put her in respite for a week, though if I do that I'm afraid I might not be able to bring her home.

Came across this today, and seems appropriate for those days I feel I just cannot go on with caregiving, but must, and have to accept that my life is being a servant to my family. Maybe some day I'll see it all as rewarding, but right now, it feels like a long and difficult penance.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the things which you think you cannot do.”

— Eleanor Roosevelt

Dear Dana , we’ve all been where your at. Believe me it’s hard work, and ,no thank you’s. I know. But you have to take a step back, and say I’M worth it. I need to start taking care of me! I agree with everyone one this site. I was there right where your at. Stop and even if it’s just having a glass of wine and bubble bath, go do for your self! Yuki