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

Isolation, I used to have work and friends and family and now I have no one.
Feeling like a failure and when the siblings DO come around I wait on them and feel like I'm the hired help. should I bow and scrape or just kneel and wait for instructions?

Her LIES! She does absolutely NOTHING all day long. No phone calls,no friends,no sunlight,etc. Just lays on couch or sits in rocker. When I do pop over I get yelled at for not doing anything. What do you want me to do? NOTHING SHE SCREAMS! Ok later I say. Trying to get her to go to alf or get some help because I absolutely cant stand her! She lives alone. I cant stand the sight of her. Ive been helping her the last 10yrs of my life & Im sick & tired of her. Unfortunately for me I live next door to her. Gosh what a big mistake I made. If she would just get up & try to do something for herself instead of waiting for me to show up whenever I do I would be happy. But she wont. Just got her a** laying around all day & night. What a waste. Sorry for venting.

Thinking about what VictoriaP said, I often wish my mom was health-enough that we could do things together. We lived far apart for many years. Now that we're together all the time and could literally do anything we wanted, together, she's not able to really do much of it.

Years ago, I'd told her my fantasy: that I'd drive coast-to-coast and that she's come with me. She kind of took to the idea. We never did it. Now, we never will.

Still, her health isn't the worst, either. I'm not really complaining as much as feeling the hard and swift passage of time breezing by me.

Trying to remember what was, and isn't any more. The stress of repeating myself at the top of my lungs (because of deafness and lack of comprehension) over and over and over. Living in the negativity loop, hearing the same complaints, comments and questions verbatim five times a day, day after day, month after month, year after year. Having to hold back frustration and anger, and be patient at the same time trying to keep calm and not letting myself get pulled under. Knowing I can't fix this. Wondering how long it can continue when the mind goes little by little and the body is still healthy.

Ditto on the isolation part....and everything AmyGrace said....and trying to advocate for my MIL with social workers, case managers, nurses, even doctors who don't fully understand her illness (Lewy Body Dementia with Parkinsonism) - VERY frustrating

Hmmm, well, this answer is subject to change as conditions change, but here is my answer today: The expectations of others. The last time she got any actual physical exercise was probably when she gave birth to me 47 years ago, so PLEASE do not suggest yet another way I should TRY TO GET HER OFF HER BUTT. She never cared what she ate, never cared that she was probably 80+ overweight, with high cholesterol and high b.p., so please don't insist that I be MORE concerned with her med. regimen! She's almost 84 for Pete's sake. She's also always been very narcissistic, and contemptuous of others, so her social circle is now reduced to 1 decent, caring neighbor who checks in on her. Please don't imply that I am not involved enough, that I do not care enough, that I do not spend enough time trying to undo her lifetime of bad behavior and poor choices. Just DON'T.

its not fair. they've lived their life, and i want to live mine! i don't want to be handcuffed to their needs, impossible, confused minds.

I have already posted here before. This was what had happened last night. My husband said, I shouldn’t have lived long to be like this.” and cried. Recently, his aphasia is getting worth, and he cannot say what he wants to say, and his body language is so limited. It was such a sad time. I shouted out in my mind, “why don’t his doctors and physical therapist help him?!” I have been suspected that my husband is having a mini-stroke from time to time, and no one did pay attention and tried to understand his real problems. It’s so unfair. If my husband would have a stroke or some other illness, there are abandoned help available, but once diagnosed as AD, everything is ignored as if those who are suffering from AD do not have any right to be a decent human being. And, that is the most bothering for me.

looloo my mother (now in a nursing home) a narcissist, was always like that - relax, complain, b***h and whine while everyone else did the work. Recently she said "Oh, when the nice weather comes you'll be able to sit on the deck on a lounger". With an old house that needs work, 2 acres and animals? Yeah, right! I have a lounger - in the shed, where it will remain.

Awww!!! I only get to pick one!!!

I hate not being able to be my happy self since Mom moved here. The only times I feel alive is when I am not with her.

I had an epiphany today...while wishing my mom was like she was 20+ years ago isn't going to change what is going on today, or what has been going on for the last 5 years or so. I just need to suck it up and realize that once she's gone, I'll think back to the times when I should have been nicer, more patient and understanding. But then again, she does make me crazy. So I plan to keep venting here...

Not being able to talk about it openly.

The one thing that bothers me is how irritated I can get with my mother, and how guilty I feel for getting irritated with her.

The irritation stems from her unwillingness to do much of anything for herself. I cook all the meals, do all the housework, all the laundry, all the dishes, all the shopping, take care of the bills and financial matters including getting her life insurance (she's never had any), getting her a medical alert pendant to wear (and paying for it myself), etc. She is perfectly happy to sit in her chair and have me jump and fetch things for her when she wants/needs them - even though she is perfectly capable of getting up and getting it herself. I find myself getting annoyed when she gets up from her nap, because I know the demands will start again.

It's hard to narrow this down to the "one thing" that annoys the most - there are so many - no help from siblings who act as though Mom doesn't exist until Sunday morning when we go to breakfast together - and then they forget about her again; the lack of personal space, privacy or freedom; the fact that I had to give up a home I loved to move in with Mom to take care of her - and the resulting guilt I feel for feeling that way, like I'm being selfish; and the fact that despite my best efforts to keep her mobile and her mind sharp, she is declining slowly but surely right before my eyes. She is becoming more and more forgetful, asking me to repeat things I've said several times, refusing to move around or walk unless I force the issue - and because she's not walking much and is morbidly obese, her muscles and joints are starting to become uncooperative. (sigh)

Amen & amen, Susan. You said it all and you said it well! ((((Hugs))))

The more I see that this is the way it is for so many of us the more I feel relieved and realize it's not Mom having it in for me: she is changing and has no idea what's really going on although she still is very functional. Keep venting, it helps illuminate another piece of the puzzle.

Let me add one more thing that bothers me: Not knowing how to react when mother over reacts.

Oh, I know what you mean. Yesterday I was cleaning the kitchen. I leaned the broom on the counter, but it slipped and hit the floor. Mom yelled out "If you break the glass, you bought it." Then she launched into tirade of how angry I was and how she knew I had done something. I told her that I wasn't mad, that the broom just fell. She knew "better" and went into a nasty attack. I knew it was just because she was feeling stress about my brother coming in this weekend -- she dreads it. I had to suck up something that a child of any age should not have to. I think I handled it well, but I felt like a verbal punching bag. I'll have to make sure the broom doesn't fall anymore. (walk on eggshells -- yeah, right. If it falls, it falls.)

People saying "It's practice for when you have kids!" or that having kids is harder.

No, it isn't. My husband and I don't want kids, ever, and this is not practice. When I tell them that, they tell me caring for my grandmother isn't the same cos there generations are the wrong way around. I'm sorry, I didn't know bathing her, changing her diapers, feeding her, paying for everything, dealing with tantrums, not allowing her off the toilet till she's had a pee, and stopping her from hurting the dogs was totally different from having a toddler just cos she's 85 instead of 3.

Not to sound selfish, but nobody ever asks how I am doing. People always ask me how my grandmother is doing with Dementia, and they ask how my mom is doing, who has advanced MS, but I'm rarely to never asked how I am doing as my grandmother's full-time caregiver. That's what bothers me the most.

I have to tread lightly on this, as I want to answer very delicately to the person whom stated that her MIL - with Alzheimer's. Remember, regardless of what bugs you is this, Alzheimer's is a disease, and it is proven and has shown that even the most giving people become narcissist, and I hate to even use that word. They do out of self survival. Have you ever asked anyone with Alzheimer's disease how they feel? What are the answers that you get? They don't know how they feel. So typically the aster is silent or I am fine. Keep in mind Alzheimer's has 100's of different variations.

So…. I do understand the selfishness, but remember, that was the way my client was before her Alzheimer's and now that she has it, she is very incredibly selfish, and everything has to be her way, but you know what, after about 2 days of being angry over that, I thought to myself "how selfish am I, I am normal, I have not terminal illness or disease, and I am angry because I am working 8 hours a day with a very selfish person." To me, after I looked in the mirror and stated that, it really was about me, and if I did not like the taxing, hard hard, incredibly hard work that it takes, then I needed to find another position.

Please note: I am not stating that all cases are textbook, they are all incredibly different, but remember you anger comes from the selfishness or stubbornness of someone else, but that someone else, now has an incurable disease. I am not stating you are right, or what ever, all I am saying, is that these people really want us people without the disease to try to understand that all of their character flaws are not because of them, they do now have a disease, regardless of what they were like before. They will more than likely die before their natural time because of Alzheimer's so, I guess with words of wisdom, I would say, stop, smell the roses, remember the good qualities of your MIL, focus on those, but also, remember that when an Alzheimer's person becomes combative and violent possibly it is time to move them to a more structured environment so that you are not emotionally bruising, and it is not acceptable for anyone to be violent, with or without a disease, however with a disease, they will just put them in a place that is a memory care, or such. It is a hard place to be, that I know. My mother has it, my mother in law had it and my father in law had it. I have been through three live in's and I am now a paid care giver specifically for Alzheimer's and Dementia, because I really feel that with the extra education that I took, that I can offer this world some respite, one person at a time. Be good to yourself!!!

Well, I just answered a post, and I was answering someone talking about their mother in law, and somehow, my computer magically switched to another topic, so I apologize to all of you out there talking about your healthy mothers.

Have a great weekend.

If someone has AD (Alzheimer's Disease) in my 8 years of experience, if it is not life threatening, I have tried every which way but loose, in how to react. Of course never improperly. But one thing that I found that worked the best, which is the bardest amount of work is silence. Because within 3 minutes they do not remember what the issue is about. I have like I said 6 years live in, first my mother, then my father, then my mother in law, then my father in law. My father was there to be with my mother, he did not have (AD), but he because so exhausted, just being there that we made a family choice to put her in a Assisted Living home. Which for her, was the best thing we could have ever done. So, I am speaking from 6 years of live in experience, with three totally different personalities. We have to grown boys, and my husband. Now, that we are alone, with two cats. I care give outside of the home, either 8 - 12 or 24 - 48 hours. Like I said, it is the tools that I have learned that allow me to keep going. One of the things that you need at least temporarily is tough skin, and you are correct, it is truly the saddest thing as to why people with AD are ignored. My mother had a huge circle of friends, and it is like they are afraid "they are afraid" they don't know what the disease is, and they are of the age where 1/2 do not have a computer. The unknown. So, that leads to the number one problem Isolation. It is a frightening disease, and then all of your friends leave you, and it is not a disease where you call someone up and say, "hello, can you tell me why all my friends have disappeared" It is sad. But, like I said, step by step, I am making a difference one family at a time. Giving the husband or wife respite, in this case wife, so that she can go out and do her thing, and the husband stays home and we put together jigsaw puzzles. It requires ALOT OF PATIENCE, BUT SO WORTH IT TO ME. GOD BLESS ALL OF YOU!!!

sorry for my typos it is late :-)

I'm a 39-year-old man and full-time, live-in caregiver for my 94-year-old grandmother. I hate feeling like a loser when I tell people that I haven't worked an outside job for the last two years because I can't leave her alone. There is no money to pay for help and my mom (her only child) has multiple health problems of her own. Twice a year, I go out to Los Angeles and stay with my cousin and her family for 7-10 days to get away and try to get some rest. Mom always has a meltdown 3-4 days after I leave and I end up calling every friend, neighbor, cousin and anyone else I can think of to help her out.

People who think being a full-time caregiver isn't a "real job" make me madder than he11 and I let them know it!

Mom has said several times that it was my turn to wait on her hand and foot because she used to wait on me hand and foot. Is she kidding?? Maybe when I was a baby. I've been doing laundry, cleaning and cooking since I was about 10. I helped around the house trying to make her happy. Here I am again!

This answer is very helpful, because it takes patience, love, and assurance to help one with Alzheimers. Thank you marymember

Most difficult to me are the 'good moments' that just don't last long enough. A wonderful outing with my dad where we both smile and enjoy our time together ends with anger and upsetness because of a random thought that pops in his head while I fix dinner after our outing. Almost every good moment has a difficult moment and sometimes the good moments are far too few.

I work part time and used to travel a lot. Now I'm afraid to go too far away. I worry that I'll be too old to get around by the time I have the freedom to go again.

There can't be 1 thing because there are many. What I hear here most and I agree is the loss of freedom and the guilt about feeling resentful about having to do it. The other is family member and the judgement about the job I am doing but, of course, no one else is able to do it. Everyone has an answer. The lack of understanding about what the negative effects this job has on you and your life. Probably the biggest is the trapped feeling. Those are just 2 (or maybe 3...or 4)

One thing? After reading these entries and seeing how they mirror our life and knowing all of you share many of these same experiences. I would say the one thing would be why are we not banding together? How much are we saving the government by not taxing medi care,caide by providing care at home, how much are we saving insurance companies? .Is there not someone among all of you with the skills, initiative, ideas or some kind of plan to make things better for the caregiver? Could someone write up a plan or idiots guide to how people like us could meet and maybe find ways to share the physical burden rather than just a format to spout our problems (You watch my Mom, I'll watch yours kind of thing?) Isn't there a retired govt. Or insurance person who could direct us to use or collective power to obtain monies or services we need now and again just to go attend to needs or for emergencies from these entities? Isn't anyone reading these entries and seeing we are buried hip deep trying to care for loved ones to keep them from the horrors we have seen or heard of in commercial care or out of respect and love? I've met some people in my 61 years who would qualify as saints, who can sacrifice themselves 24/7 but I know of and can see here that most of us are just human and need a bit of respite and an occasional hug for our efforts. Where are you folks who can help us find our way?