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Not being able just to get up and go to do whatever you want.
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Reply to 57twin
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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?
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Reply to Roxanne627
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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.
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Reply to whitesage
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{{{{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.
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Reply to Roxanne627
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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.
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Reply to beachbum49
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Losing myself and who I am is the thing that bothers me most.
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Reply to murphy14
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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.
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Reply to sandyk05
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Losing myself and who I am is the thing that bothers me most.
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Reply to murphy14
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Total loss of privacy and independence.
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Reply to bec45tx
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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.
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Reply to Onlee1
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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!
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Reply to wamnanealz
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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.
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Reply to BarbBrooklyn
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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.
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Reply to BarbBrooklyn
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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.
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Reply to hope22
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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.
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Reply to starskye
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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.
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Reply to hope22
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Watching my life slip through my fingers, and then struggle to justify it.
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Reply to Eddie
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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.
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Reply to looloo
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Guilt at not ever feeling like I am doing enough.
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Reply to jlttks111
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There are so many but I would say loss of freedom and MY future or lack there of.
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Reply to katdollbrink
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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."
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Reply to JSEMESVCS
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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.
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Reply to smikulick
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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.
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Reply to Waterbaby
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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.
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Reply to nancduggan9
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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.
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Reply to looloo
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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.
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Reply to Marialake
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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.
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Reply to melmo53
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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).
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Reply to looloo
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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!
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Reply to wamnanealz
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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.
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Reply to Waterbaby
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