This posting just sums up my feelings, and state of mind, to a "T." Thank you, Carol, for sharing your own circumstances and insight with the rest of us who may still be dealing with this situation. Hugs and blessings to everyone!
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I've been caregiving for five years to current and I worry all the time. I often feel I may die before mom and wonder who will care for her if that should happen. When I'm not with her (gone to pick up prescriptions), I worry. I worry when she sleeps at night. I'm not afraid of dying, just afraid of would happen to her. Then I think how would I cope if I no longer had her to take care of. Everyone thinks I'm grumpy and mean (not to mom) and they have no idea what I deal with on a daily basis.
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My mom is in LTC now but I am still very much her caregiver as I receive all the trouble calls and I make all the decisions regarding her care. But I made the decision a few months ago that I must figure out how to address her needs and live my life at the same time. As tomorrow is not promised, I may not have time to get back to things I enjoyed before I became a care giver. I was extremely exhausted and didn't do anything for myself and was becoming bitter and resentful that my other 5 siblings turned a blind eye. After much prayer and meditation, I finally realized that I was the only one who could change my life. So after 5+ years I now call my girlfriends and say let's get together. I go to the movies and the theater and I get my nails and hair done. I visit my Mom several times a week and I leave my depression about not being able to save her from this disease at the door of the home when I walk out. I realize I don't control like and death and I did not make my Mom ill. I can help, but I can't fix it. I can help her live the rest of her life with dignity and at the same time continue to have a life for my husband and children as they need me too. I had to tell myself it's not wrong to live my life while I'm a caregiver. So even if I'm exhausted I have some time every week for me now. I still have many sleepless nights and stressful days and lots of tears, but now I am no longer focused on when this will all end, it's just one of my many responsibilities. My new normal now just includes being a care giver. It no longer defines me. I still tense up when the phone rings, but now I answer it, address the need and stop at the ice cream shop on the way home to reduce my stress level afterwards. I pray that all caregivers develop a strategy to help u cope better. I did as I had too. Otherwise I believe I was on the way out.
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Stress seems to come full circle (repeats itself) by many little 'triggers'. I'm finding that you're in a 'no-win' situation being a caregiver. When you 'think' you've 'solved' a problem or get to a place where things are looking 'up' something else comes up (siblings, working with medical staff/institutions, money situations...) that works against you and your 'good' intentions/will... Suddenly, your stress is right back where you started from. I'm starting to think that caregivers' (due to their kindness and good nature) are unwantedly masochists of sorts. So, somehow we have to learn to deal with it by ourselves or some kind of counseling (maybe). This scenario has been the most difficult (by far) that I've had to deal with in my whole life: Coming to terms of endearment for my 'self'... knowing that I'm doing and have done all I can do and not berate myself over and over again... it's extremely difficult for the kindhearted... isn't it?... so, the answer to me is 'yes' and 'no'... because stress in caregiving has always been 'normal'... (it's not 'new')
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Thank you for this article. I am still caregiving and sometimes wonder about "the future." Your article is reassuring. But it also helped to remind me to remember the pre-dementia times with my loved one and that lightens today's load.
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Only one thing I don't agree with is the imperfect. It sounded like you did your best and you had the right to look over the extra calls. It like you said she forgot she called it wasn't you at all. Now you can be assured that you did a well done job. And you have nothing to burden you down. And what ever happens just know your parents are being care for rest and take a deep breath and know it going to be okay! live life at the fullest.
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I applauded you.
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in addition to the residual stress of caregiving, there is the grieving for the precious lost loved one. How could stress/sadness not be the new normal?
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Thank you. This article really helps me today. I was sole caregiver to my mother for four years until she went into a NH in November, 2012 (Parkinsons, dementia & stroke). Since then there have been almost daily screaming tantrum phone calls and frequent running down there to sort out some chaos she was causing. I was stressed and strung out 24/7 and my hair was falling out.

Two weeks ago, after having a funny turn, I changed my phone number, made it unpublished and told her I rarely used it so got rid of it. She's at the stage now where she believes fibs. Since then I'm light headed and totally exhausted. Apart from caring for my precious animals it's a real effort to wash dishes or make a meal or do anything but the very basic chores. I'm always so terribly tired, drag myself through the day and sleep a lot.

Today I spent a lot of time researching chronic fatigue. Everywhere I looked, among other possible causes, were stress and depression. For a couple of years I've cracked my neck every morning but now I feel the need to crack it many times a day and it does ...crunch, though it doesn't hurt. I'm sure it's all relative. I haven't lived here long but come Monday I'm going to find a doctor and get a full checkup.

It's been a long harsh winter which hasn't helped and I'm looking forward to spring when I can get outdoors and start planting a veggie garden (I live on 2 acres out in the country). I'd like to do a little volunteer work as well.

I visit my mother, take her treats and ensure she has all she needs but I have to plan it for a time when I've nothing on the next day as every visit plunges me back down that dark black hole. I don't know if I'll ever be "right" again but I'm going to get to the bottom of it and start my journey towards healing.
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Carol, thank you so much for this article. It all made such perfect sense and somehow I feel a little better now. That's what we all have to work toward...a new normal. Yes, a new normal. Perfect description. I'm struggling and crawling, but I WILL get to a new normal one baby step at a time.

Even now, 3 months after my mom died, I still jump at every thud I hear, my first reaction being that mom fell and I need to race in there and deal with it... I even asked my boys to please do things more quietly because I was jumping out of my skin. A couple times since my mom died, I've found myself still half asleep heading for the door in a panic because I heard something... *sigh* Thank God I'm not crazy for this. I was beginning to wonder if there was something wrong with me. I guess old habits just die hard..

I know I've changed after all those years of care giving. I hope I'll come out of this whole thing changed for the better for the most part. I think I'm on the right road, but it's a really long one... One day at a time. :)
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Beautifully said... Thank you so much for sharing Carol... It means sooooooooo much in our caregiving 'repair' to know we're not alone in our hearts and feelings.
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God bless all of you who find the strength to help people like me. At a loss as to how to live after the funeral. Thank you
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Oh my goodness. How this had helped me tonight. I've been through all of this down to the ignoring of the phone calls.
We are burying my precious little momma tomorrow. I don't know how to live now. I've taken care of lived ones for so long that all I can muster is a seat in the recliner after i get my coffee. I'm never going to sleep tonight and i will be a basket case tomorrow. I wish that I'd had time to find this group sooner. Thank you Carol.
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I couldn't agree less, a lot of adult children suffers from being a caregiver to a parent of grandparent who are long term care dependents. More often than not, the task takes a toll on their personal life and health too. Caregivers need care too...
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Wow, Captain .. who'da thunk, huh? *Sending hugs*
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oh my. im a big , ugly, hairy, guy having my first teardrops since mothers death tonight im not even certain why. i guess i have a right to, that last year of dementia care was life the challenge of / for a lifetime .
spending time with aunt edna now. shes 90, fairly demented, and fading . i take her thru the store and help simplify her decisions and some strange thoughts go thru my head. the most prevalent one is " im actually experienced at this s**t ". cant put these emotions into words..
lost my mom but still need a care recipient.
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I feel like my old life is completely gone. I don't worry about myself much... but I have this nagging fear that I have lost all traction in what used to be MY life.
Perhaps part of that is I was an artist and it took decades to build my studio and online lresence. All of that is gone:(
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Sometimes I wonder how life will be when this phase is over. Sometimes it feels like it will go on forever. I've realized that I will have to reinvent a life after this is done. I don't regret it. It has given me a more complete perspective on the cycle of life, and I can say that I've done what I could to be there for my dad. It's not all fun, but life is full of good and not so good.
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Wow...well said. Totally relate to "the calls."
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