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

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.

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.

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."

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

Guilt at not ever feeling like I am doing enough.

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.

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

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.

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.

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.

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 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.

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!

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.

Total loss of privacy and independence.

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

The feeling of complete and total helplessness. I have no control over my life anymore, it's all just taking care of him. And then I feel terribly guilty for thinking that.

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

There is no break, no time off. What scares me most is that this could go on for a lot of years. Each time I have to call 911, it chips away at me. Then I spend days and nights wondering if this is the end. I never thought it could be so stressful.

{{{{HUGS}}}} to all! I agree with each and every one of you. This is a thankless job. I am grateful to all of you for giving me a place to go to complain and know that I'm not judged and you all understand how difficult this is.

Feeling trapped in this life. But not wanting to place her in a nursing home, either. Not receiving any family support....I could go on and on with this one.

Last night, after helping Mom with her shower, she told me that it is so hard to get her support stockings back on after a shower. I suggested "a little big of powder may help." I was told that that would work, but "the vacuuming does not get done often enough around here!" I told her that the maid just doesn't get paid enough to vacuum more than once a week! After my sarcasm, I did say that I would be happy to vacuum her room more often if she asked me to.

I know that I should let that comment go, but it really irritated me! I still have 3 of my kids living here, a husband, and her to take care of, plus I work full time. Life is never easy. Why can't I just take that comment with a grain of salt and not stew over it?

Not being able just to get up and go to do whatever you want.

Stress and being pissed off at family.

check out this website for caregivers… mmlearn.org

I'm going to add another to my previous comments:
The constant reminder of my own mortality, and worse, that this could be me in 20 years. The terrible fear that I might be forgetful, stubborn, dirty, deaf and so annoying that my children will dread being around me, and will feel about me like I feel about my mother!

Oh AmyGrace I fear the same thing!

Amy - your post really hit a nerve. My Mom has advanced Alzheimer's - she cannot move, feed herself, cannot talk and is incontinent. Watching her struggle everyday makes me soooooo scared to grow old. I wonder everyday, will this be me? It depresses me.

Fregflyer: I agree 100% but I didn't apply for this job. I woke up 1 day and it WAS my job--12 hours' notice!
But my main complaint is: knowing where to start if you've decided that your parent needs to go into a home. I've been on this path for 4 months and normally love to research, but now I hate it, b/c it's all a maze. I could now write and book and, if I had any energy left over, I would. I'm stuck: Mom wants her own place; we're in the process of getting a valid diagnosis (i.e., dementia and related diagnoses) and I've drawn up a POA to allow me to discuss her medical needs, applications for Medicaid, etc., but NO ONE can tell me which facilities in my area accept Medicaid. Mom has NO assets (unless you count her 15-yr-old car). She gets approx $900 in SS each month and that's IT! I don't know about other states, but just getting a list of facilities that are not strictly PRIVATE PAY is next to impossible. You're already in a crazy-making, exhausted, frustrated and confused state of mind and you assume SOMEONE will guide you, but you're passed from one Agency to another. Our saving grace has been the local Alzheimer's Assn and a neurologist who knows how the system works.
As far as Mom's "IT'S ALL ABOUT ME!" mindset, join the crowd. I URGE all of you to find other caregivers on this site who've posted about their parent (usually moms!) who fit the Narcissistic Personality Disorder diagnosis. It explains a lot and you learn to just lower your expectations, nod and say "uh-huh" and "OK" and move on to the next subject. Blessings to you all!

Whitesage, I know what you mean. The depressing part is not what we are doing caring for our parents, but the constant reminder of what is to come. Its the feeling of hopelessness about ourselves and knowing we cannot stop from it from happening to us. Sometimes I wake in the night and ask myself, why are we here, why is it we work so hard to do good and accomplish much only to have it all end so quickly and in such a humiliating way. Its just always in your face caring for a parent as we are aging ourselves. God bless those who do this for a living.