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

Loss of the simple freedom I had. the thought that I OWE my mother this care...per her. well there is more than one thing but I don't want to carry on.

oh mom2mom! I feel ya! I am constantly trying to figure it out. The things my mom has done! I'll spare you the ugly details. At the core, it really doesn't matter why they are acting out or manipulating or avoiding or lying. The end result on us is the same. And we need to care about ourselves enough to protect ourselves and heal. I am burned out.

I know exactly what u mean. My dad will give the guilt trip. When he needs or want something he wants right then and there. Like he wants a ride and don't jump right then. He will say OK then u want me to walk and fall and it's cold outside u want me to freeze. He thinks of himself only. If he wants to eat he wants it right then if not he will say OK u want me to starve. If he don't get his way he will say I will get an apartment in a gang neighborhood. He doesnt pay one bill or grocery or give me a dime. He gets ssi check and blows it all on lottery. Since my mom passed away in 2010. I've been taking care of him. He threw away 66,00.00 on lottery. He's my step dad and tells me I'm not his real daughter. He drives me bonkers and I'm scared that he will make me snap. His own biological son doesn't want to b around him. How did I get so lucky to adopt him. Answer is I'm doing it for my late mother and I feel so sorry for him cause he's old. I don't work or have a social life cause of him he needs 24/7 hr. Care cause he is paralized. Also tells me he eats apple a day that I have peel and slice for him so he wants to live up to 121 yes old. He wants to b the oldest man in the world. Yeh!! Me. Feel bad for all of the the people who r in my shoe. Taking care of an old person is worse than taking of a child.

The smell. No one warns you about the freaking smell that nasty putrid smell. I get that she is too cold to shower. I understand that she is afraid of falling. But stray cats are starting to gather around the house.

Nobody warns you about the smell.

When Drs and Home Health therapists tell you to get your parent moving, what exercises they should do, etc., and what to do on days when they are not there. All their appointments they should make. Then you try to do it, and your parents fights you or says they don't want to do it. This is my mother in her 60s after her stroke, leaving her left side paralyzed. Insurance cutting them off right before they have a chance at making progress. Our health system is ridiculous. The other disabled parent drinking all day, and wanting her laying in bed all day because it's easier for him to handle. Then he makes us drive around all week to his Drs appointments, and he doesn't even help himself to get better, and expects us to be his servants. If this is how our health system approaches the end of life, I would not want this for my kids. They are already helping with their grandparents who don't want to seem to get better. It's hard for loved ones to see their elders go through this. They didn't have to caregive for their parents. We love them, but at what point should our seniors be helping themselves, if they can? So much wondering if we are doing enough?

YESSSS! A thousand times YES! All those Drs appointments! Some of which are totally unnecessary for health reasons. more for the billing reasons. I am so tired of it. Our healthcare system is run by the insurance companies. Not the other way around. I can't keep up sith my own health because of taking care of my parents. And you are correct. They didn't have to do this. Their parents were dead long before they started aging themselves. Meanwhile, we are smashed between working two jobs to pay for our kids college and caregiving to ungrateful parents who want it all their way. I've really had it!!!! Somebody stop me!

Momsgoto, I so agree with you. I've had three "preventive health" doctor appointments for myself this month. All three said all is fine, nothing wrong. Blood work perfect. No diabetes. And you know what? If they had just asked me how I was, I'd say fine. It took some hundreds of dollars -- insurance thankfully -- to give the same answer.

I really feel that they put people on a healthcare assembly line now. It keeps churning out the money for the insurance and healthcare companies, which have gotten huge. I remember a time when we went to the doctor when we were sick. Now we can't even get an appointment when we're sick, because schedules are tied up with follow-up visits that are scheduled every 4-6 months. But WHY?? If we do get sick, we have to go to urgent care.

The healthcare system is really silly now. My doctor wanted to do a bone scan on me. I declined and said there was no reason to, since I wouldn't take the drugs and I eat well. She made me feel like I was non-compliant by refusing the test.

I get tired of them looking for all these diseases, making sure you're clear. My great problem, I guess, is I don't have an overwhelming desire to live until I'm 100. I know what being old and being maintained by pills is like. I want to check out of this life before my mind leaves.

BTW, they say preventive health saves lots of money. You can't prove that to me. Doctor bills used to be low and infrequent. Now there are a lot more doctors, a lot more tests, and a major portion of the nation's economy going to the healthcare system.

My newest answer to this.. The lack of empathy of her son and daughters that don't bother to visit, call help in any way. Just p!sses me off. My husband -Her grandson and I take 24/7 care of her.

People thinking I have it easy.

I hear others saying "I wish I could stay home all day" or "its ok he's watching grandma he's not doing anything"

Wait no! How could I be so stupid. The heat. The intense heat all year long. The scorching heat where I cannot open a window or lower the thermostat. This small home in metro Detroit is responsible for 34% of global warming. There's a hole being gouged in the atmosphere by the inferno that is thus.

Tiredreader - I wanted to laugh at your post about the hot house, but I know it isn't funny. I totally relate! One of the (long list of) reasons I won't live with my mother is the infernal heat in that house! When I lived there, I kept a separate window air conditioner in my bedroom which kept it comfortable for sleeping, but of course you don't spend your day sleeping when you're a caregiver. The time I spent cooking, hauling in groceries, cleaning the kitchen, doing those endless little "handyman" jobs around the house - I would be dripping with sweat. I hate hate hate a hot house, especially when I have to be physically active in it.

During winter the first year I was so overheated I passed out from heat exhaustion and woke up face down on the floor. The living room got to over 90 degrees while the bedroom where grandma was was a cool 82. I was in the living room scrubbing a pee soaked chair with woolite. I don't know if there is a higher power in this existence but I think something looked out for me and prevented me face-planting into the pee spot.

The denial of other family members is the hardest for me because then they are not only unhelpful but make everything more difficult.

Second, is the distrust of the patient. She regularly tells others how I can't be trusted with giving her the correct dose of Coumadin even though her doctors repeatedly try to assure her that I have a better idea of what she needs than they do!

Thinking back before my dad passed. It was the feeling of being invisible. Of being taken for granted by everyone. There was no validation or acknowledgement of my time and efforts. It was hard. Feeling like everyone had a life that was free of responsibility. And here I was feeling stuck. Stuck being the responsible one. Stuck being the good one. Terrible cycle. I wish I had found a way to break it sooner.

cdnreader,
Sorry for your loss of your Dad.
I completely understand the invisible part. That feeling goes along with not feeling heard. People are rarely listening, and then, only hear about 75% of any conversation with good hearing. I don't know if reading is different, but wanted you to know I heard you! If you stick around, your presence will be acknowledged, people will identify with you and where you are at right now.
Maybe others will click "follow" on your wall, and when you speak up, you will at least be read by others, and others on the forum have lost a loved one. Yes, it is hard to read when others are still going through what you have. There are threads, if you have seen them: "Loss of a loved one",
"Love notes from caregivers who have lost someone", Life after the loss of a loved one"- or similarly worded that will come up in the search bar.
I am so glad you did not actually disappear, and feelings can change over time. So keep reaching out if you can. I love it when others write just what I was about to, so then it saves me time. You have put into words feelings that I have carried for just a long, long time.
Hoping someday that you get the validation you are seeking, hoping it just comes to you that you are loved.
Give yourself some time.

There is so much I don't like from my past experience that I won't go into it here. Yes, it sounds like you have a very toxic relationship that must go. I personally would not stay in such a relationship from your description

I miss doing nothing all day. I miss being able to go out, have a bloody mary with dinner. I miss intellectual conversations.

That sounds lovely. I want to one day go out and daytime drink and have a nice conversation without worrying about the time when I have to return. Would be nice to meet up with other caregivers one day maybe at a bar for a beer and burger and complain about life in person. They are the only people that can truly relate to our circumstances.

kept trying to click the thumb-up on the burger and beer but i already had over and over lol.
Right now i am living with someone who has it hot in here- who sweats in the winter?ugh

Being in another state and having only one sibling out of 5 taking care of both parents. guilty for not being able to help more.

I'm also in the "my life is on hold" camp. My life revolves around a 93 year old. I can't leave the house because he can't be alone and I can't take him with me, the way I could my kids, because he's too big to carry and is a fall risk even with a walker. He can't carry on a conversation. He only wants to talk about sex anyway. *sigh* I've found myself putting off my own medical care, but recently said "The heck with this" and scheduled a major surgery that will free me from my constant and severe joint pain. But yeah, putting my life and needs on hold for the dementia patient... the thing that bothers me most, because it hurt me the most.

I hate the uncertainty. The not knowing how longer this will be my life. When I was pregnant with my son, the OB advised me on my first visit that I would require a medically necessary C-Section. I told him that I expected him to provide me with the date and time when I returned for my second visit. I had everything planned out. I liked knowing exactly when my life would change.

Mom seems to be breathing her last breath one day and is improving the next. I am not in a hurry for her to go nor do I want her to linger but I want to know when.

I am fairly new to this caregiving responsibility, and it's only 3 times a week for about 3 hrs. each time. I know I don't have that much to complain. about compared to some of the other posts I've read, but considering I used to see her once every 6-8 weeks, and now it is 3 times a week, I can't help but feel that my old life has disappeared. I retired over a year ago and really enjoyed the freedom to do things I like to do, but now it's just about gone. I teach fitness classes in the mornings, then see her afterwards. I also volunteer one day a week. By the time I come home it's sometimes 4:00, about the same as my former work day. I wanted to get extra help from a volunteer through this special program, but she is not anxious to have it. She says why do I need it, I've got you? U fortunately, the appt. we had today with the volunteer was canceled. The point is, I want to do just two days and sometimes three. I feel very tense when I'm with her sometimes and she thinks I need to rest more. Well yes, that is part of the problem, but she's not connecting it to the fact that 3 of those days, I'm with her. How do I destress and accept this as part of my new life?

I hear you, brdlvr1. It's amazing how quick some elderly parents are to adopt the idea that an adult child should drop everything in their own life to be available 24/7. It seems appallingly easy for them to forget that you have your own life and needs and obligations, regardless of whatever may be going on with them.

The comment "I don't need outside help - I have you." sounds just like my mother. Setting boundaries is hard, I know. I think the only thing harder than setting boundaries with your parents when you're young and helpless is setting boundaries with them when they're old and helpless.

You need to believe in your heart that you have the right to set limits on your mother's claims to your time and energy. It gets easier with time, if that's any help. It gets easier with support, which I hope we can offer you here.

It may help if you remind her, repeatedly if necessary, that you still need to take care of your own life even though she's old now and needs your help. If she says "Why the rush?" you can always say "I have things to do at home." That is always the reality, after all. After you do her laundry, you need to do your own laundry. After you clean her kitchen, you go home to a kitchen that also needs cleaning. It is easy for elders to become very self-focused and forget these obvious facts of life, but that doesn't mean they can't be reminded. That approach actually works with my mother - maybe it will work with yours as well.

Good luck!

Thanks for the response, CarlaCB. I do believe if she had a volunteer she liked and with whom she could share her stories with, she wouldn't even miss that third visit of mine. I've heard the same stories too many times, and usually she's not that interested in my stories. I don't think she realizes how my life has changed. I used to get really irritated because when I wanted to get going, she would say, "So you're in a rush?". Fortunately, we had a discussion about that, and she said she wouldn't say that anymore. She does remember that she would do the same with her parents and how much she hated when she had to go see them, but now he shoe's on the other foot and she likes the care. I do feel guilty because she does try to be nice. She wants to take me to lunch and buy me things to compensate for my time, but somehow it just isn't the same as getting my own time back. Maybe I will get used to this new lifestyle and I won't feel so stressed over time. I do realize that she's 91 and I don't know how much time I have left with her. I will probably then regret all the things I've said and how I was in a hurry to leave her. That's why it makes this so hard to say I just want to come two times, not three. Anyway, we'll see if this volunteer ever shows up and maybe this will resolve itself.

Three hours is a pretty lengthy visit, Brdlvr. Is your mother's home too distant to make shorter stays worthwhile?

I understand the irritation you felt when she used to ask what the hurry was. On the occasions when my brother telephoned my mother, the first words she always said to him were "when are we going to see you?" - which he took literally as a request that he visit her, which made him feel guilty, which he resented. Not that it ever made any noticeable difference to how frequently he visited.

But you have nothing to feel guilty about - you're already spending much more time with your mother than used to be possible. Isn't it a sort of compliment, that she'd like you to hang around a bit longer?

I hope you do find a congenial volunteer, that would be great for your mother. But it'll still be generally true that no one is more interesting to a mother than her children are, however often she sees them.

When I read three hour visit, I can't get the Gillian's island song out of my head. A three hour tour~~~~~~ how a simple three hour trip ended up stranding them on a small island for years.

Brdlvr1 - as I was reading your post i thought that sure sounds like my mom. And the part about how we wonder how much longer they'll be with us...and how we will feel guilty when they no longer are. We are a generation of caregivers. My mom doesn't think about how much I am sacrificing because she didn't go through this. All of my grandparents (3 sets) were gone by the time I was starting my own family. So holidays were always at mom & dad's. My kids grew up with that. Then as they started their families they eventually wanted to have holidays in their own homes. Meanwhile I had never stopped going to my folks. So what happened?? I never got to have holidays at my own home. Now my grandchildren are teenagers! It makes me angry that I got skipped. Now with Dad gone & Mom in AL, we (husband & me) feel obligated to make nice for Mom. There are times I just want to scream: "what about ME??!!" then I feel guilty... Again. 😧

I recently saw an old episode of the TV show "Mama's Family" where "Mama" was laid up from breaking her leg so in a wheelchair and temporarily living with Eunice. It made me laugh AND cry!!!! So darn accurate with Mama one second saying, "Now Eunice, you just sit and relax. I'm just fine" and the next second (right after Eunice sits down), "Although it would be nice to have a drink of water. My throat is so dry. Yep, if I could get it myself, a nice cold glass of water..." until Eunice gets up to get it. Then it repeats all over with something else. Finally Eunice gets so tired of Mama's requests she lets it be known that she is DONE!! Well then, Mama gets mad and wheels into the bedroom spouting "well I guess I just hafta do things myself if I want 'em done! My very own flesh and blood won't even take care of me!". Then they hear a thud. Eunice falls to her knees on the floor & screams for her husband to go see if Mama is still alive! Eunice sits there, rocking back and forth on the floor, wailing, "oh my Lord... I've gone and let Mama DIE!!! - with my last words to her said in anger..." Finally they come out of the bedroom and Mama says, "Eunice?? Whatever's the matter with you??" and Eunice goes running over to Mama and hugs her and is so relieved that she's alive!
Then the whole thing starts all over.. Eunice fussing over Mama 'till Mama insists she sit down!! Until Eunice sits down, then Mama says in her sweetest southern drawl, "well it sure would be nice to have a pillow behind my back" Lol. 😂