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Amen Johnjoe! I feel eactly the same. Too many years caregiving for two parents with the help of my husband. Mom has since passed..but dad is hanging in there. We have done this about 10 years now and it's getting worse. The worst part is the family is upset not being in the will because plain and simple...they are selfish. I'm tired of hearing...sorry...i'm too selfish...i want to swim in my pool...and they are mad at dad because they are not pulling their weight. I know after this i will never be the same...but thats ok because i know i did the right thing. You won't be the same either but it's ok. Change is good and how could we be the same after our caregiving experience? Just know you're an angel and when it's over...the new you will be ok. Hugs!
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I am at the beginning of a caregiving journey that looks likely to span two decades for two different people. If I wait till they pass, I will be quite old and given the hit on my health that has already occurred I doubt I'll be in any position to enjoy my life when the time comes. And I have other family and no "slave" children to feel obligated to make things ok for me when my time comes. What all this means to me is that things have to change NOW, that I can't wait for someday. Somehow I have to find the balance of doing what I can live with for those I am and will be responsible for and not throwing my life down the drain. Because someday may never come.
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This uncertainty of how long is why, in addition to my hopes and dreams list, that I try to take it one day at a time and get enjoyment from the little things that I can right now. Many enjoyable little things add up....good cup of coffee, sunsets, looking at art books, pumpkin ice cream....whatever makes you happy!
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I agree with the others - you will be a new you. I know this first hand. For 18 years I was a 24/7 caregiver to my son. After losing him, I didn't know who I was poor what to do with my day. My very existence revolved around him. I slowly figured it out and got life on track. NOW, Dad has moved in and my caregiving journey has begun again. Concerned about the bitterness that I was already beginning to feel, I reached out on this site and received the strength to not let Dad completely take over. I Ann happy to say that I have had 2 job interviews (at the same place) and am expecting a call to begin work soon. Although he had a lot of medical things going on, Dad is still capable of being alone. I think I'm going too enjoy this new ME. And I know this won't be the last time that I reinvent myself. HANG IN THERE. Take a few minutes each day for yourself. Pray and give thanks that you are able to do for your mom (because I know noone else will thank you or atleast 2 of my 3 siblings dont. contRary day, better you than me and go on their merry way).
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I have had mom in my home for going on 3 yrs now . I am 63 and no family period.Brother died 2 yrs ago snd left all money to wife. I dropped contact with her because she was no help and accused me of wanting a lump sum. Well brother said he was leaving money for mom but she could change it and she differ. I have always been there for mom. Helped buy new car ,dentures etc furniture for small mobile home I have tried to save for myself never thought I would be in this situation all alone. I too used to be more outgoing. I have one or two friends who have been here .everyone else has disappeared from my life.i now spend all my time just trying to keep mom dry.she gets around 1000 month but not enough and falls in crack for medicaid. All this to say, you're not alone. I will continue day to day until have to go to NH because I feel this May kill me.i have been on antidepressants, increased bp med etc. we do this out of love. I just hope I make it through this to have a few years of retirement to enjoy. After 3 yrs. I still hear my sisterinlaw telling me to use 7 thousand I got from moms trailer all she ownedf and then she would pay half of assisted living cause that's what my brother would have done. My brother would have had half this responsibility also. So instead I went no contact with her. Haven't heard a word in 2 yrs. she got all money and no responsibility. Did well. Please tell me there is a god to do vengeance. Best of luck to you.please talk to therapist. It did help me some
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The answer you want is yes, but sadly it comes with a price, which is your loved one's death.
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My children have had to grow up around the family denials & juggling and guilt of my siblings.. Merry way is about right. A decade &half and going...when will they get it...In-laws even worse...:(
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I can't answer this question fully because my mom took care of dad until he no longer could be home. he is in a NH now and being taken care of better than mom could handle. and for GRAMMYM - its a good thing those people are in church if they are giving you stares.......I believe in God, say prayers multi times a day and appreciate all my senses, etc. but I think of the judging people, prejudice people that we had in our church and often thought why are you there, but its a good thing they are, now if only they could learn a little lesson.
We are all changed in some way, some for the better; some not.
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My mother said after living with us an an invalid for many years " I have ruined your retirement"! Quite true and now I care for my husband but I look on it as my role in life. We lived all round the world until nearly 30 years ago - then halt! I view this as my role in life as I find other outlets when I have a moment, Nature, animals ,worthwhile causes to sign petitions for. Books I always meant to read when I get the time. Not Church but I do pray. I mean to survive this and truly hope you will too!
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There are things that happen in life that are MEANT to change you. To deny that is to remain stagnant. If it wasn't this, it would be some other life-altering event. That is life.
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Grammy,

Your post made me drop my dentures! I couldn't have said it better myself.

John,

Bless you man.
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The "me" you are now, you will never be again. Actually, that is true of much of life which calls for our chosen responses to it daily.
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Stargazer, that is so true. I can feel myself changing as these years unfold.
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Thank You to a Care Giver
(for Jonhjoe )

You are the "Me" you thought was lost
but experiences of caregiving comes with a cost
Each day as you toil to care for that soul
Will give you new parts to add to your "whole".

No other job can make you so weary
And make you question your ability to see clearly
Can keep you from vacations and lose you friends
Give you hours that seem to never end.

But you can look at yourself at the end of the day
And know that, no matter what others say.
That you made a difference and showed that you care
by being the one who chose to be there.

And some day when this caregiving whirlwind is done
You'll be the "Me" from before, but a much stronger one.
So hang in there caregiver, and one day you'll see,
You cared for your loved one and now you are free.
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Love what glasshalffull had to say. The poem is very true. The saddest part is that once we are free, we have lost the one we love and for a time feel lost ourselves.
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Lovely poem but agree with Goldilocks the freedom has a sting in its tale when the person you are caring for dies. Yes you will be a different stronger person eventually and will know you did all you could. Life changes all the time and so do you.
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Grammie,

I do not think it is so terrible to cancel the holidays. When my daughter was at her worst as a teenager, I do mean the very worst, she ruined every meal, we just stopped inviting her for birthday and anniversary dinners. she had made us all feel so uncomfortable for so many years and it was a total waste of money. Without her we had a relaxed time. We still loved her, of course, and we still did HER birthday with her.

Sometimes you just have to get real and practical and face reality.

The funny thing was/is: she never noticed. Years went by and she wasn't invited, say, to my mom's birthday dinner, and she never noticed. Never asked.

If you treat the holiday like any other day, your mom probably won't even notice.
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Thanks, Salisbury...I was hoping for that exact outcome! I appreciate your input. 😊
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I just dread these holidays coming up...like there isn't enough to deal with. I am keeping it as low key as possible, which we usually do anyhow. I am noticing an uptick in crime already as the holidays approach and the pressure is on to spend. It actually feels good to pull back and keep it all very simple, if at all.
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Katie: That's right, keep it simple. Actually many people dread the holidays.
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John Joe; NO, you will never be the same again, BUT you can be a BETTER you. I had my Mom for 10 years. Got her when my youngest was in Jr. High. My Husband kept saying "I want my wife back", my kids wanted their Mother back. I have always been all things to all people and while I tried to stay that way, there just weren't enough hours in the day. At times I fell into self pity mode and would ask myself "why me"? I have 2 sisters living a normal life and I resented that. One day my sister said that God chose me because I was the most capable and secretly I wanted to just slap her. But it did get me to thinking. No one is put on this earth by accident. we all have a purpose. Just what IF, this was my purpose? What if my whole life was set up for this purpose? It was a life changing revelation. I started embracing my role instead of resenting it. I tried to become the best caretaker I could be. I finally had to put my Mom in a home exactly one week ago and I feel completely lost. I wonder aimlessly through the house not knowing what to do with myself and yet I have a list 2 pages long of things I need to get done. I'm trying to relearn what NORMAL looks like. It seems like mom has been gone forever. I visit her everyday and the other patients are starting to treat me like I'm their family. So many patients have no one to visit them and I've learned their names and say hi to everyone and hug them and try to help the nurses out. Slowly I'm beginning to attack my to do list and started writing goals for myself.

While you may never be the same again, I do believe that Attitude and Perception will determine the "new you". With your great big loving heart and your experience, you can be a better, stronger, more patient, and definitely a wiser YOU. It doesn't happen over night, believe me. I still don't know what normal looks like but I feel at peace with myself.

Try to find the humor in things so you laugh to keep from crying. Try to find the positive in anything you can. And with every complaint you have, try to find something you can be grateful for. You have the hardest job on earth and the more you care about the person you are caring for, the harder it is. My heart goes out to you.
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I love this post! Thank you so much! I looked after my mother for 15 years and now my husband and I was our getting bitter and twisted until I saw your message.
Very heartening. Must pull myself together. At least I have one " foul weather" friend who helps me twice a week and no children or grandchildren to worry about . No siblings either but realize one has to embrace the situation and count blessings. Enough money right now, no flooding etc, and wonderful birds to feed with sunflower hearts this winter! Bulbs sprouting everywhere even primroses. Nature is still wonderful and inspiring. Its kinda rural here which helps and the ocean changes every second if I get a moment to get down there!
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Welcome, Rosmarin, this is an awesome thread.

I went from my mom to my husband. Taking care of both now though mom is in AL--but there is still plenty to do! I thought my retirement would be an adventure: travel, theater, etc. But it is almost like crawling into a snail shell. I am almost totally preoccupied with care of husband.

But I refuse to put my life on the back burner. I am working on a huge literary project that will take up hours of each day for many years, and I get together with people for coffee a few times a week. Life is now!!!!!!!!!!

So, will I ever be me again? Yes, I am me now and and will constantly change into a new me given new circumstances. It is sad but true, this too shall pass.
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What an interesting question? No, I will never be the same again. I know that for a fact. In good ways and yes in bad ways.

The good: Well I have more respect for myself and even though my family would never admit it, they do too. I know I did the right thing, the hard thing at times but that had to be done. I know that if it weren't for me, my Mom's last days would of been harder than they needed to be. So in that way I'm better just knowing that.
I've always been a compassionate person so that never changed but I feel my spirit grew throughout the whole experience.

Bad: Well I'll never quite look at my siblings the same way again. The way they put it all on me. Some of the hardest, most painful decisions were left up to me. I forgive them but I'll never forget. The pain of watching my Mom die will never leave me. I feel a real hatred inside for some of the doctors I had to deal with. While I never looked at doctors as Gods I always naively thought most of them were decent people who cared about their patients. Wow, I don't believe that anymore.
I saw a real horrible side to people while caring for my Mom. So I have officially taken my rose colored glasses off.
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When I signed up for the Marines, I knew my life wouldn't belong to me and that I'd never be the same. Same with caregiving. There were times when the burnout left me as if having an out-of-body experience. I couldn't feel anything, and found myself reacting instead of responding. One of my sons compared ne to a pressure cooker that was about to blow.

My caregiving, in time, became a military operation. I put together a "platoon" complete with calendars and other graphic organizers. Because I couldn't do that "one day at a time" a lot of other people do. Planning -- and time management -- are everything. If you can do this successfully, there will be more opportunities for getting back to life as you knew it.
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I have been in that mode of day at a time, never more than week at a time for a long time now .I also have several calendars and notebooks to log things, changes, hospice visits, medicine dispensal, etc. It has helped to have a routine to focus on to keep going.
I have also really lost trust in the system there is for seniors, nursing homes, rehab, and doctors. Friends that have disappeared entirely. I used to live my life buzzing along, thinking that there were people out there trained and paid well to help us if needed...but now I have lost faith in that. I feel that most people cannot handle the jobs they are given, yet so much is expected out of me. Friends have always tapped me for rides, etc but when I lost sight in my eye and had surgery no one called or offered to drive me to the grocery etc. Will I change after all the bumbling incompetence I witnessed at nursing homes and doctors not ordering antibiotics for UTIs that led to Mom's delirium, aide dropped Mom on floor giving her a broken leg, people running when I needed a ride just once, etc.? Yes I will change, but not sure how yet....I have a lot of anger issues at some of these people.
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Hi Salisbury
Our experiences are quite similar it seems. Your literary project sounds fascinating. Love the snail simile! I am trying to get some " me time". Going to small carers meeting this afternoon and I am in touch with an environmental group which I support and also sign all the never ending animal welfare petitions! There is a world out there to keep in touch with though like you I regret the lost opportunities to travel - now just in my dreams! Thankful I managed to live around the world a bit years ago.
Katie and Gershun I am with you - also found doctors care homes and hospitals a real let down with my mother. I was angry and despairing when my mother was dying - felt powerless in the face of neglect and indifference and my guilt because I seemed to get nowhere with my protests. I dont think they gave a damn. Complained to my MP about the hospital and home . He did try but came up against the medical stone wall . There are some good medical people but its all down to luck and fighting them when you are in a state of grief. Some black humour - I used to joke " no wonder there are notices all around the hospital * do not attack or abuse staff"!
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Exactly rosmarin. I remember thinking the exact same thing when I read those signs in the hospital my Mom was in. Actually dealing with one doctor in particular was the first time in my life where I wanted to punch someone really bad.
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Wow !## was just asking myself the same thing. My mom died 12-5-14 of Alz. When i found out she had it in April 2011 i moved her from Va. To NC with me and my disabled son. With no help from my two sisters who lived in Va near her. After watching her slowly deteriate she passed away . It eas just like any other morning . I went change her diaper and she died right in front of me. I feel like i will never get that image out of my head. Her hospice nurse told me that sometimes when you turn them it helps transitions them. So here I am everyone has gone on with there life. I am on meds for depression, insomnia, anxiety. Just praying for this hole in my stomach and heart to heal. But i do know there is a God....for if it wasn't i would not be here today....just trying my best to carrying on.
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Eddie and Country Chick,

Those were really unforgettable shares. Eddie, you are so right. We make many commitments in life--we CHOOSE to--that we know will change our lives.

It makes me think of having children. Do they change our lives???? You bet. But I will not compare parenting with caregiving. There is another thread for that.

Just wanted to say thank you for the thought-provoking and helpful shares.

I have been focusing on gratitude. How grateful am I for each member of my family, all of them, including the dog!, including my mom and especially my wonderful husband. Gratitude lifts my spirits way, way up high.
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