I was fine for about 3 years but never expected it to go on this long.

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It's been 11 1/2 very long years, taking care of my mother who is fairly good health. She has never taken care of herself because my dad did everything for her. He passed away in 2003. At 87 she's not going to change. She still speaks her native language (canadian) despite the fact that's she's lived in this country since she was 16. She can't change! She won't even order at the restaurant, she makes me do it for her. She can't stay home even one day without freaking out so I take her out everyday. I'm so tired and now I take her to the closest place and bring her back as soon as possible. She lives with me in an attached MIL apt. She's dramatic and so I'm become desensitized to some of her concerns. She would have me do even more for if I was willing but I'm not. Not at this point. I just don't know how I'm going to survive the next 5,10 or more years. I really think caregiving has a life expectancy before the caregiver no longer cares. I was fine for 3 years, 5 years I had my days, 10 years I had more days. Now everyday is a bad day and I dread coming home. I want to be there when she really needs me but I'm afraid I'm going to have nothing left by then. I no longer have the courage to clean my house, change my bed, or take pride in way I look, all of which were so important to me. Life is an everyday struggle and the worst hasn't even begun yet. She brags to her sisters (who are alone and/or in assisted living) how I do everything for her and that their kids do nothing for them. She's a little mean and I don't like that. When I tell her she shouldn't say those things she responds "well it's true". The truth is maybe her sisters do not want to be a burden on their kids as long as they're able to manage. I want to be her end of life caregiver but not her personal aide until then. This is what my father did his whole life. May he rest in peace now. No need to reply. I just really need to vent.

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2burnt, reading your story was like looking in the mirror. I have not had my mom with me as long yet but we are in the same situation. I also have a handicapped sister who is always ready to give "advise" but never ready with anything of real help and a perfectly healthy brother who is "too busy" with his important life to get involved. But he manages to call my mother ever single day. So I get to hear all about how wonderful my brother is while I live day in and day out as her only full time caregiver.

But I have learned through the years the importance of Me time. It was not easy at first and my mother resisted, but I simply held my ground, and she got over it. I now have a care-giver through our local Agency for Aging that comes in everyday of the week for 3hrs. I make sure that during that time I do something I love and that I can't do when I'm caring for mom. I read a book, take a bubble bath, take a walk, etc. I have even taken it upon myself to read the Bible from cover to cover. I have found a wonderful website, jw, that has great info on all kinds of subjects and keeps me distracted for hours sometimes.

The other thing that has helped me is that I finally got so burned out that I had to ask my children, ages 20 and 24 if they could help me from time to time. I felt so guilty about this, but to my surprise, they were thrilled to help me out. My husband and I now take little weekend get aways from time to time. It has helped me out so much. I guess the thing that has helped me the most is I learned to stop trying to chance a circumstance that could not change, but rather have found ways to take control of what I could change, which is my own life, and most importantly I stopped feeling guilty because I needed some time for myself. I learned how to say NO to my mother without regret and came to realize she was just being spoiled and it was OK for me to have a life. I wish you the best. Hang in there. God sees you good works. All kindness is rewarded, even if sometimes that reward needs to come from you.
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OMG lilred0005 your story resonates deeply with me. I'm so depressed that after dealing with this for almost 12 years, I find myself hoping to die soon. I can't do this for another 10 years, I'd rather be dead. My mother rally's the same way for dr. appt., dressed to kill and bubbly, walking with a bit of a hop. At home, if I don't take her out, she can't even comb her hair and get out of bed. Yes, she feels kids owe their parents for raising them. Truth be known, my childhood was a nightmare that I would have preferred not to be born into. If I set any boundaries at all, she will resent me and think I'm mean. I haven't had a check up in 4 years and I'm going in April. I don't even care what the news is because my life is no longer mine and my future is grime...why bother. I know I sound depressed because I am but it for a good reason. I'm glad that you were able to reclaim your life in your 30's. I hope that your cancer does not get the best of you and that you come out strong and fighting because now you have so much to live for. You've served your time, now it's your turn and you have NOTHING to feel guilty about! Wishing you health and a wonderful life. I will be free only in she ends up in a medically necessary rehab and or nursing home. I know.I know..it doesn't have to be that way but it will be simply because I want no regrets when all is said and done. It's a nightmare I wouldn't wish on anyone.
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PLEASE listen to me (sorry for the shouting but this is SO important!). I will give you my background but please listen as what I have to say is so important. I too am in the same boat as you ladies. I am the only child of an only child and because of the lack of any family, I am the sole caregiver to a mother with a diagnosed personality disorder. She wavered my whole childhood between being a loving mother and a horribly abusive monster. The scenes in "Mommy Dearest" are no exaggeration. She had a minor stroke a few years ago and although completely able to do physical tasks, has become 100% enmeshed and expects me to do EVERYTHING! I lived with her for years as an unpaid caregiver as she truly feels I owe her because she raised me and because I was sick as a child for a few years. She outright told me "if you wanted to get married, have kids or a career, or live alone then you should have done it in your 20s because you knew you were the only child and that now I need you". Yes, that is a direct quote!
She too needs constant entertainment and can never be alone. It got soooo bad for me that I became despondent and almost wanted to die. I had NO life, no privacy and was run around all hours of the day and night. And when I'd take her to her doctors to try to figure out why she was falling, and was exhibiting signs of dementia, she's totally showtime, putting on this cutesy act for the doctors and I'd end up looking like a crazy hypochondriac! FINALLY after another fall in which she couldn't get up. I finally went against her wishes and called 911. After days in the hospital and then rehab, the doctors finally saw what I was dealing with and they had me place her into an ALF. They felt it was way too much for a young(in my 30s) woman to handle completely alone, plus I am disabled from a horrible accident and it was killing me trying to lift her off the floor. Of course she now hates me and is desperately trying to get out of the ALF and have me move back in with her.
The reason for my long winded post- after all the emotional agony caregiving cost me, after all of this for years, I now have CANCER. YES, my oncologist feels that the disfunction of trying to be a caregiver to someone like that has absolutely cost me my health. Please heed my warning, caregiving alone like this CAN cost you your health and you may die before the elder you are caring for. Please, set boundaries while you can because you in the grave isn't helping anyone. It is time to put the guilt that keeps you enslaved away! Please!
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cwillie, I laughed at that one, too. That was the funniest thing I'd heard in a long time. And it's true. They ARE immortal.
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TexasGiver, you made me laugh when you said "I've now decided she may be immortal". It will soon be 2 years that I have been into heavy duty caregiving. I decided against a nursing home in part because I really believed she wouldn't be around much longer, and also because she and I were buddies before she retreated into herself. Now she is just a needy shell of her former self and I keep wondering what is keeping her alive, she has struggled with multiple health issues through the years and her QOL is nil. That is one thing I struggle with, the uncertainty of how long this can go on. I have yet to find a satisfying outlet for myself, but I'm still looking.
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Just knowing so many of us are in the same boat helps loads. I felt so isolated and when I go out, my mother comes with me. We have nothing to talk about because we have nothing in common. I'd look at others out and about, with friends their own ages, laughing and conversing with joy and here I was across the table from my mom, both of us in silent, sharing a pastry and listening to her repeated say "why don't you eat, you never take your 1/2?" every single time!! I don't eat my half because I'm trying to eat clean but I'm not even going to go there with her because of the lecture that will follow. I never thought my new best friend with be my 87 year old mother. I feel like an abandoned person, glancing at other's wishing it was me out there with a like minded person. And yes, the trivial habits are the same ones that annoyed me as a child and over time, they become unbearable. Today is blizzard so we can't go out (she lives in a MIL apt.. connected to me) She calls and asks if I could change her bed. I went over begrudgingly because I thought maybe one day I would have a break from her. I seriously would still change my own bed even if I had no legs and one arm!!!! She has torn rotator cuffs and I'm made aware of it everyday. I change her bed, do her pills, fill her water containers in the fridge, pick up her newspaper, make her calls, bring her to her dr. appts, take her out daily, cook for her, deal with her anxiety attacks, carry her purchases in along with numerous other things. She frequently lets out big "sighs" like she's exhausted or overwhelmed and it's shouldn't make me nuts but it does. Bottom line, she's fairly healthy but frail. Guilt, I have plenty to go around as I'm sure many of you do. Never in a million years did I think this could go on for 15 or 20 years. All I wanted from her my whole life was for her to be a mom and it never happened. Consequently I parented my daughter in a completely different way We are fiercely independent woman who will do everything we can for as long as we can. My mother is an emotional cripple and I'm her crutch. A long time ago, someone told me that people often die the way they lived. There's some truth to that. Thanks for not judging.
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TexasGiver - You're preaching to the choir here. I totally relate to everything you said. All the little daily aggravations build up when you can't get away from them and can't see an end to it. In my view a parent who is healthy but needy and demanding is the worst of both worlds - you can't even feel compassion for them or any sense of urgency to their needs, as hard as they try to impart a sense of urgency to you. And you don't have any respite through the medical system, which will take on your parent only if they're really sick and in need of actual medical or nursing care. It feels like being stuck in limbo forever tending to a person who can't get better but isn't getting worse. My outlet is Math. I take college level math courses for no reason other than it's challenging and interesting. And if asked to do more than my regular weekly routine for my mother, I always have an excuse "I have homework. I have a test. I have to study." Glad the pottery works for you. Sounds like a great way to keep yourself sane.
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Thank goodness I refused to quit my job, a career I have had most of my adult life. My Dad hinted one time that maybe I should quit work so that I would have more time to drive him and my Mom around.

I looked at Dad and quietly said "did you quit work to care for your parents?"... there was a pause.... then he said *no*. He never hinted again.

Work is my sanity.
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YOU DESERVE two weeks in a warm sunny place and at the same time send her for two weeks to an ALF. Oh, yes these places do respite care. In fact, make it a month. :-)
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I share the frustration most of us here express. When Mom was 93, my step-father died and the financial situation was not what she thought. I needed to step in, and it was more affordable as one household than two. She's now cruising toward 102.
At first, I frequently backed off, thinking I didn't want to make waves and I could have things my own way soon enough. I've now decided she may be immortal and I should act accordingly.
As an only child, there is no one to argue with the decisions, but also no one to share any burdens of time or finances. I really didn't plan to support both of us in retirement and as her demands grow due to age, my time to work diminishes, and my enthusiasm for work wans since I'm now past 70. This is not what I envisioned for my retirement.
Argument or not, I no longer agree to do everything Mom's way if it is something that really bothers me. I have taken up pottery and insist on leaving the house to go to a studio. I refuse to work at home. I call it clay therapy and it is amazing what throwing a hunk of clay around will do for me. It also provides a group of people for a social circle. I no longer take Mom along on every outing.
In many respects outsiders perceive that I have the "Rolls-Royce" of caregiver situations since Mom remains reasonably active and able to care for herself given her age. I'm not a 24-hour a day nurse. I can leave her alone for a morning or afternoon.
From the inside, however, the situation is not without its frustration. It's costly, requiring that I maintain a much larger home and existence than I planned for myself. There are many demands for cooking, excursions, paperwork, medical needs and on and on that have to be addressed daily. There are animals I wouldn't keep, friends that come and stay that I don't particularly like, things I don't really like to go and do and some complaints I could make that seem petty but have grown large with years of repetition. Habits that annoyed me as a teenager still persist. I couldn't wait to get away from them then, and now I'm back. Even what may sound insignificant can loom large over time when stacked beside other complaints. Just a steady stream of questions and interruptions can become annoying to someone who is use to their alone time.
I've given up meditation because sitting quietly means you have nothing to do and need to be assigned a task.
I've given up closing doors because these are only meant to be opened.
I've given up journaling because a book with writings must be found, read and you must be told where your thinking is misguided.
If possible, all mail should be opened, read and commented upon. Electronic billing has become my salvation.
All trips outside the home must be immediately recounted before you shut the door, put down any packages or go to the bathroom. The barrage of questions begins as soon as you open the door.
A list of all you plan to do this day should be given as soon as you appear in the morning. It should coincide with the list you gave last evening when you muted the television to reply.
Complaining to many friends only highlights the many things she is admired for: an avid curiosity about what others are doing and what is going on, an enthusiasm for wanting to be out and about and knowing what is happening, a work ethic that always leaves a things to do list and so on. I more often told not to pick on her if I start to talk about something she has done.
I don't know of any really great answers to this dilemma. It does grow as time passes. It is essential that you somehow find a way to carve out some portion of the world that is yours. Mine has become clay therapy. I've started selling some of it because one does tend to run out of room and relatives when your hobby involves making something. But, selling art is not a highly lucrative source of supplemental retirement income.
You also need to find some good sounding boards. Certainly this can be one. But you also need at least a couple of friends or relatives who understand your "side" and are willing to listen. Sometimes just being able to express the frustration without running into censorship is more helpful than anyone imagines.
And, there is always the challenge of fitting all the demands into a day which is why I must stop expressing my frustrations now, and move forward with experiencing today's truckload.
Thanks for listening.
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