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

Losing myself and who I am is the thing that bothers me most.

Total loss of privacy and independence.

No end in sight/losing touch with myself. With all the added responsibilities of caregiving, just existing humanely is emotionally draining most days. People tell me how lucky I am to have a parent still here (because narcissistic families always look perfect on the outside), and I choke back bile and a biting retort, and try to smile and give a "proper" response. (And yes, I feel guilty about that.)
Yesterday, a neighbor told me her mother had been given six months to live. And I almost congratulated her! I quickly corrected but she knows me well enough to read my emotions. I was mortified. Fortunately, she laughed and told me to hang in there, my sentence would be up soon, too.
Everyday the bars are getting more and more confining, while I lose touch with the real world. Humanity moves on without me, and I am losing my ability to compassionately exist in it.

For me the worst is losing my beloved husband who was always so wonderful to me, helping me, doing whatever he could. He is still my husband, but has lost so much. I need to be very grateful that he still has a sense of humor, tries to be funny or silly and tries to crack jokes. He is still wonderful, but is a different man.
And yes definitely loss of freedom!

I have to add: the thing that bothers me most about the egocentricsm--the "all about her" part of dementia, is that as I child, I was constantly told that it wasn't "all about me". But at the time, my selfishness was fairly appropriate (kids have very little sense of the totally of family needs) and this wasn't handled very well by my family; we had a succession of ill grandmas and other relatives who lived with us and/or took up my parents' attention. In part because of these experiences, I was determined NOT to caregive my mom at home, give up my career and retirement earnings and time with my adult children and grandchildren. I guess I feel like I got the short end of the stick early on and I'm not going to get it now.

It's the "no end in sight" and the unpredictability of it. It changes all the time and there is so little time or opportunity to "get it right". Even though my mom is in a good NH, I cringe every time the phone rings. Hey, I have it easy, I know. And even at this distance, with lots of good help, it's stressful. I can imagine how I would feel if she were living with me.

I understand those feelings. Mama seems to come back for little visits from time to time, but like you said, she has lost interest in television, and pretty much everything else...I even miss not having to cook meals for her....now i have to get really creative with those nutritional drinks....yes, I guess the hardest part of caregiving is the just "knowing" of what is imminent and knowing there is nothing we can do about it but just keep going....sometimes I feel like my soul is slowly draining from my body too.

caring for someone with dementia I think is one of the most hardest roles we ever have to take on. its like going through a long grieving process because the person we knew before dementia struck, has gone.a mum you could talk to about anything. going shopping,watching television. mine is so confused, she is no longer interested in television,i have to take her shopping due to her mobility, to speak about anything is forgotten in 5 mins, it is difficult because there is nothing we can do, I guess that is what hurts the most, hoping for the impossible, but never giving up on it happening.

The thing about caregiving for me is that my Mama is the least of my problems...she is a blessing and I am so happy that I can be here for her...

What frosts my fanny is all of the family members or "friends" who make their occasional drop in visits, act like they are all filled with concern, and all the while you can almost feel the urgency of wanting to get out of the door. You hear the remarks about "you need some help"...and there they sit, on their butt, and know you will not see them again, unless a wave of guilt hits them. I don't know if others have experienced this, but I swear, just about all of these bozos sit here and put on a half decent act of caring, then you find out they went promptly and discussed everything going on with anyone who would listen...the standard gossip mongers...It is kind of humorous to me how they drift in with their fancy outfits, high heels, pedicures, newly fixed hair and look down their noses at me for having on "loungewear type clothing"....no makeup ....and I get to sit there and listen to all their baloney about their vacations, their fun outings....it may sound hateful, but I don't mind the caregiving.......I have had people tell me they would visit but can't bear to see my Mama like she is now...those are the ones who are the most infuriating and pathetic to me...For these are the ones for whom my Mama was there to raise, feed, take to appointments because their own family would not...yet they "can't bear to see it"....Right now my Mama is my life...I will deal with what comes later later....But I can assure you there are a WHOLE BUNCH of folks who won't need to wonder what has happened to me.

Watching my life slip through my fingers, and then struggle to justify it.

I have no problem with the things I've had to take on, when these things actually HELP. But to get pulled into 'enabling', and then have to figure out what's actually reasonable and what isn't, then act accordingly, and then deal with the fallout (being insulted, badmouthed to others)? Argh.

Guilt at not ever feeling like I am doing enough.

There are so many but I would say loss of freedom and MY future or lack there of.

The anger I feel over the loss of my beloved husband and partner. He is no longer the man I fell in love with or married 40 years ago. It's not fair to him (who was such a good and dynamic man) to be so "lost."

I hate that my mother controls things without looking like she controls things. For others she puts on the poor me, poor me I'm old I have nothing left of life; but in reality she has exactly what she wants. I do everything to her schedule. She expects her meals and meds no matter how I feel or what's going on with me. She never notices if I'm sick or tired, she barely speaks with me. I get a good morning and a good night. At meal time she goes and sits at the table and expects food to appear. I'm an only child, cancer survivor, widow from an Italian-American family. She thinks I have nothing else to live for but to take care of her. I've been taking care of her for 30 years since my father died. I'm tired of feeling used and worthless.

looloo - Sounds like we have the same mother. I too exercise daily and eat well in hopes that I can be independent and healthy as long a possible. I am also working to try to ensure that I can financially afford to hire help if someday I need it. Keep up the good work.

melmo53 - Something you said about being the oldest sibling struck home. I never realized that when I ask my siblings to help with THEIR mother, that it feels like I am asking them to help me. That's my 'oldest sibling training/guilt' and not their fault really. Granted they don't volunteer much but neither I nor my mother often ask them to help. I'm changing that as of now - guilt free. Thanks.

You need a break. Take it and you will feel better for it. There are respite organizations that will help. And, please know that you are doing a service to your mom who gave you life. Just think about that please. And it will not be forever.

My only sibling, my older brother, is one year older than me (we're in our mid-late 40's). He was never tested or anything, but probably suffers from Aspbergers. His early childhood was a real challenge for him socially, and in his teens and 20's he was a violent acholic. He straightened himself out and has been living a clean, sober, productive, and seemingly happy life since, so I'm happy for him. But we're not close, and a recent attempt to re-start a relationship was awkward and so we both just let things be -- meaning, no ill will, and only very rare email contact ("Merry Christmas, Happy Birthday", etc.). His relationship with my mom is incredibly awkward and probably unpleasant for him, and so he will make the obligatory phone call and visit every once in a while. I was irritated at first that my mother's care is mainly my responsibility, but I've gotten some important input from people familiar with addiction/recovery, Aspbergers, and dysfunctional families (my mother's a bit of a malignant narcissist). They assured me that my brother's doing what he's capable of, and that it's not healthy for him to get more involved. I thought about and agree, and also realized that it's perfectly ok for ME to do what I'm capable of, and to NOT take on what is not healthy for me, either.

A lot of people are frustrated by siblings not helping but in my case, I prefer when the sibling stays away. On the days sibling "stops by" he becomes "my company." So I'd rather he didn't stop by and talk and talk and talk. I try to leave when he comes, but he's uncomfortable when alone with his mother (my MIL) so he proceeds to talk and talk and talk to me. I am tired and don't want to have to lend him my ear. He wants to do the right thing by visiting his mother but that visit ends up taking my free time. I try to give them "time together" but he follows me around my small house. Sometimes I go out and leave him with her but in all honesty.........I don't like having him alone in my house when I'm gone. We were never close... and well, I don't like leaving him in my house.

I feel the resentment to. Sometimes realizing the other 7 siblings are not as available as I am and sometimes, wondering why they can't make the time and help. Not help me but their parents! There are times when what they chose to do, seems to make more trouble than help and then I think, I don't even know what I need for them to do, it just makes you tired to try and figure it all out! I do see that my parents are how they have always been, just the filters are gone and they are thrust together in their illness and never get much break from each other. Does that make me the way I have always been? The fixer, the big sister, the other mother? It probably does. I just don't know what else to do besides, take my mother on her errands, go on their sometimes insanely concocted scavenger hunts, handle what they will let me, try to manage my health, house and home and just hope for something better. One day.

Waterbaby -- I'm with ya! My mother does the same thing - 'apologize for being a burden' but it's not really an apology, it's a guilt trip. And yes, so much of her issues now are the result of bad habits all her life. I eat right and exercise, and do my best to take care of myself every day, in large part because I don't want to burden others in the future (no guarantee about what the future holds, but taking care of one's self certainly doesn't hurt).

I am just beginning the bad phase where I can't leave him alone. He has had Alz. for 9 years. He is in perfect health except for the Alz. I am fearful for the future and dreading the incontinence part, dreading I won't be able to handle it and will be a basket case. I know he is going to last a long time. He never talks to me. I just wish he could talk a little bit. I am so lonely even though I am not alone. My friends are my sanity and so are the church family. My own children and his, do not want to get involved in anyway! They all live far enough away that it is very convenient for them to stay away!

OK. One more thing about what bothers me caring for my mother. She put herself in the shape she is in. She spent her life smoking, obese and not moving and now has all of the associated medical problems. If I can share one thing that will help others on this forum - take care of yourself for yourself and for you children and grandchildren. Start today.

I feel really evil sometimes. I want her to try to do the things she is able to do - drive to the pharmacy, wash a dish, pick up after herself - but she tells me she doesn't feel like it and says how she hates to be such a burden and makes me feel guilty. I don't mind doing what she cannot do but I don't like 'fetching' - "go get me this", "bring me that". I resent having to do things for her that I am fairly certain she could do for herself.

Wow, there are so many things... My parents are 90 and both have dementia. One thing that's hard is that my once highly intelligent parents are now basically shells. They are physically healthy and could live for years, but are mentally gone. So I mourn that loss, even as I take care of them each day. I described it to a friend as watching them die by inches.

Another thing is that Mom is completely self-focused. It's all about her, her, her. One day my dad fell in thebathtub and hurt his back. We had to call the fire department to lift him out and have the paramedics evaluate him. The entire time they were at the house (about 45 minutes) my Mom was complaining that she wanted lunch. I explained to her as I was calling for help that Dad had fallen and I would be busy for a little while. She saw the firemen come in the house, so she knew they were there. But since they weren't there for HER, she wouldn't shut up about her lunch being late.

As others have commented, it is hard having to be with them 24/7. They can't be left alone for very long, so even if I'm just running errands I have to come back in between to make sure they are OK. We can't put them in a nursing home because they can't afford it. For both of them it would cost close to $8,000 per month! So my sisters and I take turns taking care of them, and will continue as long as we can.

I'm apart of the sandwich generation, both my teenage boys live at home and my Dad lives with us as well. I feel pulled between the two, not enough time to give to both plus my husband and take care of myself.

It's all about my Dad, he loves to be served. I feel like a waitress, maid, mother and wife to him. My Mom died two years ago. He takes pills 6 times a day so I have to plan my day around him.

My Dad was a wonderful father and that is why I am taking care of him now. I wont deny however, its incredibly difficult and frustrating.

I was just wondering, can a person get a senior sitter for a couple hours.. just like we got a baby sitter for our children?

lovemom1: I would question how you are spending your life. If you Mom is in a nursing home isn't being with her 6 hours a day, a bit much? You do have other people you love and people who need you, as you described. Mom is in good hands and soon you will have to let her go. Then where will you be? It's so tricky to know how much to care, but I do wish for you a feeling of taking care of yourself, and also to have the experience of your grand children. The challenge might be to enjoy life within your parameters.
I have a fairly wealthy brother who has offered zero help, concern, and couldn't care less if Mom and I dropped dead. But I do ask him from time to time, if I think of something he could do for us. He can say no, but it's wrong of you not to at least let them know what you are doing. Everyone is making a choice to some extent.

For my personality it is many things...
mainly trying to be with my family under the circumstances. I once identified with the role of caretaker from early on just being a female and I consciously on some level felt my father raised me to expect to be taken care of . until one day I had graduation from high school coming up and therefore I needed to present him with a goal for "college". First time I realized he expected me to do anything with my life... All the decisions were made for me to that point.

As a caregiver, what I am committed too is all the battles I have to face and overwhelmingly feel inept at winning... trying to keep myself spiritually and emotionally fit. I am focused on my short comings or backsliding emotions and behaviors that tormented me as a child or reverting to such as overeating to fill the empty spots in my relationships. I lack trust in myself and therefore my relationships as well. now in spite of the efforts I have made to assist my parents, I have resentments I need to let go of and forgive to live with this responsibility. I am approaching my third year, getting a salary now having paid for my own private medical the first two from my savings. ..

Thirdly, The SENSE of ISOLATION I feel … the cost for me is greatest when the loss of emotional support from my once close friend seemed to weigh me down right after the crisis settled with my mother surviving her first stroke. What I did was to reach out to a Christian friend for a supportive ear. I assisted her emotionally, This disappointment I tell myself is more about her inadequacy to face her own failure as a daughter and caregiver... she opted for the new house supposedly to uplift her mother but the new more stressful house payment and the job that she detested to pay for the house ran her health into the ground and ultimately her mother was moved out of the house into a nursing home... I feel that was a one sided friendship.. but didn't recognize it as such. Since
I chose to accept the role of full time caregiver for my parents, so with that choice perhaps brought about the loss of this one friendship. Which leads me to realize I cannot blame myself for the loss of support of my friend. A friend in need is a friend in deed. I only reached out.
The caregiving role requires recognizing two wrongs never make a right... emotional abuse dolled out by my dad is now reciprocated in turn by my self righteous indignation something I would never have done unless I was this overwhelmed with commitment.. I take myself to therapy for support in understanding why I have a toxic reaction to my dad at times...
Why I have a toxic reaction to what I perceive as my mother's pride and stubborn nature working to sabotage my efforts to help her to not only survive 3 strokes and recover from these as well.

Touching on the role of the ( only) sibling, 1500 miles away well that presents another battle in my life. Brother and I have our own issues to sort through when all is said and done. The close and loving family ties will be tested in the same ways that my parents both opted to close doors to their sibling always over money. What a legacy I have to pray I don't repeat.

With my experience with alcoholics, it caregiving is like trying to help an alcoholic get sober who doesn't want the help? Is the aging process so debilitating that parents just don't take their own inventory and at times focus on the caregiver's character defects ? This is the process of caregiving that drives my self esteem to the ground... knowing that my inventory is easier to focus on rather than hearing them focus on their own defects of character. Are they lacking in measurable gratitude or am I cutting back on my commitment due to remarks like there's the door what's holding you back...? My favorite knife in the back by my mother when she refuses to eat or drink and I explain the benefits to her health per the doctor and nurses only to hear her tell me she is tired of hearing me! Then it escalates to my suggesting other caregiver's she could hire always adding they would not push her to eat and that I am tired of pushing her... that is when she implies that the door is there, what keeps me here? Honestly, I would like to find the answer to that question in the midst of the battle ! What keeps me here?

Initially love kept me here! That in and of itself was noble enough however the enemy had to bring fear into the mixture of emotions.. especially as the toxic nature of the battles began and continued...fear keeps me here! Fear of loss of family ! Fear of guilt? Fear of being made to see how foolish the battles were one day if I outlive them and look back after they are gone... God does not give us the spirit of fear so I know where this torment is coming from and that is what I mean by the battles of caregiver's or in general...life. I face these critical battles daily and I have to pray for the right weapons to defeat the enemy of my soul.

Nobody feels like they have to do a d**n thing but me. My mom was a wonderful mom to more than just me. I so agree with so many answers I've seen here. It's impossible to decide which thing is the hardest. Nobody asks about me, it's all about her. I never get a break. I don't have any friends anymore. I clean up poop EVERY DAY. I don't talk to anyone for days. I am so tired of doing everything alone, laundry, cleaning, shopping, paying the bills on top of her constant care. My sister said she would take her 2 weekends a year, mighty generous of her don't you think? She has not taken her once! I have had her 6 years now. It's all a big ball of crap that nobody really knows about or cares.