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This may be a sensitive subject but I need to ask. The caregivers on these forums - of which I am one - are able to vent and find possible solutions to the problems of caregiving but what happens after the family member passes on. Do you finally get your life back and find some peace? I am sure that most of us would say this has been worth it but I would love to hear from the folks that have gone thru this and come out the other end. Do you still come to the forum?

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dear nursing 19, you took your charge seriously and being a caregiver isn't easy. I've been caring for my mom for 6 years now. I have no brothers or sisters, so I don't resent anyone. Sounds like there is part of you asking if it is okay to have left her. Only you can answer that. When you start doing the work, it seems your friends leave you as you are never available. You have closed yourself off. But you do need to go out, even if you don't feel like it. Go to church and make friends. Those friends seem to stick with you longer. Eventually, you will find something to look forward to-and then do it! Do not talk yourself out of it. I pray you get yourself back.
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I had to come back to mom 2010 to get neuro surgery for her. Had to give up my things and home. Move in and then rehab her at home. She recovered better than expected except she had basically no frontal lobe of her brain left. I rented another home. Visited weekly. Then my diabled dad died. I had to move in and take over. No other siblings would help. After 4 years of of working nights paying for sitter. Then taking care of her needs in the day with basically no sleep. I finnally am paying someonw to care for her 24/7 and am taking a break for as long as possible. I was resentful and Irritable. But now im depressed. I dont know who i am any more. Im no longer interested in the things i liked before. Other than work. I continue to stay inside.( One of the things i hated) feeling so traped. And continue to sleep on the couch in front of her room. Ive gotten used to it. IF ANY One can tell me what to do so i can have my life back... Or a life back... Please write . i happened on here by accident. But i will check for a reply. Thanks
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Hi Pat!! I'm so sorry, I can't imagine that feeling, my mother is 92 now, I feel I'm on count down time, I panic and cry feel guilty for yelling or loosing my patients with her. I try to be nice, and I fall back into the same patern.
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Mcmillian, so sorry for you loss. I would think grieving then realizing that you done the best you could for we r all human. Everyone grieves differently . I guess taking small steps toward living your life again. Do you still have any friends you can call n get out of the house or maybe a hobby you never got to do or a new career? Feel free to continue to come here for support or just sharing your own experience to help others. Sorry for your loss.
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It's so funny that this question was asked on the same day as my mother's passing. Right now I feel very lonely and thinking how do I get my life back on track.
I feel like I am starting a new life and deciding exactly what is it I want to do.
Pat
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I have a friend who tells me we are always learning something, mostly from our biggest challenges... then we look at each other and giggle that we have NO idea what we are learning right now, but surely when we look back on this time it will have been something very, very special.

It helps me to remember that whenever I'm feeling lost and like I don't know where I'm going or what the point is... In retrospect, when I think back on my biggest challenges, I really did learn a lot and set off in new and good directions that I never imagined at the time.

Right now, I'm just scared there won't be a new direction, then I think back and say... or course there will. I just don't know what it is yet.

I hope we all find something really good and look back on this transition as another of life's mysterious blessings.
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Wow, Stephan, thank you for saying that about my reply! Well, like I said grieving comes first then in MY case - it's just a wait &see thing - everyone's different.
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All will go through an adjustment of "what now". Some will be sad and lost. Others will be relieved that all are at peace. Me, I hate to say will be glad when I can get on with my own life and not have to be relied upon. I am not a hands on caregiver, but I don't like being responsible for some of the needs of my eldely mother. I do it because she is my mother, but I hate feeling I am in a trap. Death will be my escape.
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Krusso was spot on -- grieving comes first. Hospice, synagogues and churches usually have very helpful groups, and sometimes the fellow members do become friends. It does help to know we are not alone by any means. Demographics have provided us with a caretaking tsunami. It didn't seem to be so difficult for my parents and grandparents -- is it because people are living so much longer, and families are so much smaller?
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After reading all these posts, I realize I'm not in this boat alone. Hopefully we will all manage to get on with our lives once our loved ones are gone. It's this starting all over stuff, that scares the hell out of me. When I was younger it never bothered me. Never had difficulty making friends. ---- but when you're in your sixties? It has to get better though.
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You have to grieve first, which is exactly my situation now. Mom has severe dementia is losing her short term & even long term memory bit by bit - she'll be 94 in Mar. So for right now I'm stil visiting this site, answering questions, etc., BUT when she passes, the only way Ill come back to this site is when I get notifications by e-mail. That's the best answer I can give for me, anyway...
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I have no idea what we do after this. I think at first it is generally quite busy with handling the affairs and belongings and business. I also think we may all need to get a lot of sleep. Friends and family are all around and helpful for a while. After that it's up to us. Seems to me that we need to lay the groundwork for life after caring, by not letting go of our friends, interests, and by taking good care of ourselves, as best we can, so that health problems don't sideline us. If we can care so diligently for our loved ones, we can care for ourselves equally well.
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Heart2Heart: I am sorry you are having such an unhappy Christmas. 8+ years is a very long time to be caring for someone who makes you miserable. If you aren't already getting respite care, you might find it helpful to look into. The few hours a week that we had respite care the last year of my MIL's life were good for both of us and made a huge difference in our lives. I hope you're having a better day today.
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I lost my mom a few months ago after years of caring for her. I'm a little in a muddle and have no idea what to do next. My boys are asking me what I will do and I don't know what to say. I'm 60 and hope I can find something meaningful and contributing. Then, on Christmas eve I received some cards that touched my sad, confused and sometimes worried heart.

My son gave me a Christmas card that on the front it says 'A Trap for Santa Claus' and there is an old fashioned picture of a family surrounding and hugging Santa all with smiles. Inside, there was nothing printed except the words my son wrote. 'Thank you, Your love and support is all I need.'

My other son, wrote a card that said, 'You shine and reflect your inner beauty to everyone. You have been the number one supported of my life and dreams and I would not be where I am today without you. Yes, I take things too seriously and yes, I quote you, back to you, too many times without giving credit. It's because I love you...

My heart is warmed. My boys have reminded me that what ever I do, I have impacted the people around me and so I need to pull myself together, put a smile on my face and share the best of me that I can muster, because I'm impacting people all the time... when I least expect it.

Wishing everyone a Merry Christmas and very happy, healthy and wonderful New Year!
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Heart2Heart, you gotta compartmentalize. My Mom is a different world, an alternate reality. (I expect Rod Sterling to knock on the door at any time) She's miserable and has to make sure everyone else is too, so many Christmases have been ruined to the point that I dread them.

I keep making long-range plans as to what I will do when Mom passes. I need to take time off and relax. I hope the money, health and resources will be there so I can at least take 2 or 3 months to get my act straight, but I also need something to DO during that time rather than quit "cold turkey"
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My mother is 85 and has been living with me for 8 1/2 yrs... I thought that we could get 'closer'... problem is... we've Never been close and I've been banging my head up against a wall in doing EVERYTHING for HER, while all the 'opportunities' in my life have slipped away... and, after loosing just about ALL my 'friends'. Tonight is Christmas Eve and it is the WORST... My mother is a CONTROL FREAK!... and she has ruined Christmas eve after all the work I put into TRYING to make it a happy one (decorations, etc)... Sometimes I really don't want to go on living, because the last 8 1/2 yrs have been so HEAVY! and CONSUMING... She has NO RESPECT for ME... while she GLOATS on other people she thinks is WONDERFUL... She has to ALWAYS check out what I'm wearing, my makeup... friends... etc... while she is always critical of me and blames me for everything... This is a serious problem for me... As it has RUINED my LIFE... and my HEAD IS SO SCREWED UP... SO, (as I put it if she should die before me... because this has effected MY HEALTH)... do I GRIEVE HER!!!!!!!!!!!!!! Right now, I REALLY HATE HER!!!!!!!!!!!!!
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Wow, what a courageous question with a million possible answers. Each can only relate his/her own experience. I am taking a year "off"-- I am not making any big decisions and am fully giving myself over to what it means to be on earth without a parent. I only cared for my mother one year, but I had lived so far away from her for so long, I moved closer to her about 5 years ago. Closer, as in across the road! My father died in 2005 and she was finally learning to live life on her own when she was diagnosed with cancer. I am grateful she didn't linger and was gone in 11 months time. She is still "here" and I make an effort to do at least one good thing every day that would make her proud. You will go on and you will be different. Only you can be sure to become someone better than before.
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Tess, welcome to AC. I am sure you will be able to give insight and encouragement to others. Merry Christmas to you, too.
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Actually I found this forum AFTER my Mum had died (in January this year). I don't remember how long after, only that one evening I was trawling the internet looking for sites that would allow me to volunteer to help the elderly in the UK (my thinking was that now Mum is gone, I needed to help care for other elderly people - and this would rub balm into my open wounds).
I clicked on this site and straight away knew that, while it may not have been what I was looking for, it was most certainly what I needed (!!), and even though I had to be up at 5.00am the next morning for work, I spent the entire night reading and empathizing with the questions and answers here.
Alot of what is posted I can't comment on, as I live in the UK, but I try to help where I can - even just giving someone a hug, and letting them know you care. We may be continents apart, but our emotional experiences are the same.
I have had counselling in the past (for multiple miscarriages and still-births, and the death of my elder sister), so I understand that I am going through the grieving process right now. What is great about this site is that, little by little I am opening up and sharing, and this is a great place to do it ! I haven't found anything like this in the UK (though maybe it exists).
I hope that my experiences will help other site users from time to time, and thank you all for your non-judgmental acceptance of me !
I wish you all a Happy Christmas-time and a peaceful new year.
With love and kind thoughts, Tess
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It is a difficult question, and I'm still coping with it 4 years after becoming a former caregiver. It's hard to redefine yourself and get a "new you" once you've become a caregiver. I still participate in monthly caregiver support groups to help encourage new caregivers. I use my caregiver skills to help others struggling with caregiving. After church, I also help a woman in a wheelchair with toileting (because her husband cannot help her in the ladies' room). I think my identity as a caregiver has become a part of the "new me".
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My dear mom passed away on October 31. I took care of her for much more than the last two years, when it was pretty much full time. I am very happy that I did that.

I keep remembering things. It comes and goes. As she used to say, it's up and down. It just happens. When I was cleaning my parents house out, I threw 50 bottles of liquor down the drain. No one was drinking it for many years. After that, my son thought I was drunk and I really was.... giggling. Reminded me that I should giggle more.

Today I had the chance to spend the whole day with my son. No worries about work, because I gave that up two years ago. I am grieving and I am relieved. I was happy to hear others feel that way and it is OK to feel relieved.

Now I keep thinking I would like to feel the self esteem of my executive role, but honestly... I would not be able to spend the whole day with my son when he happens to be off of work, if I had a big job again. So the quandary for me is... do I try, really, really hard to go back to a full time job? Do I start something part time, where I have to constantly look for new customers? Do I just give up and have fun, although not spending a penny doing that?

So many questions, so many possibilities. I did try to stop coming to this site, so that I could try to be more cheerful, but I am pulled back, to offer advice if I can be helpful to someone, or to discover good resources or suggestions... because I clearly do not have the answers.

What I do know is that if I should live as long as my mom and dad, I have about 25 to 30 years and I would like it to be meaningful, productive, useful. I would like to be sure that I spend this time making absolutely sure that I am not a burden on my kids, but that I am also very much actively in their lives. I have no idea how to do that, but I know it's important.

One last thing, others have mentioned here. I find I do not have the energy that I had when I started care-taking. Is it because I'm older, or because I am un-well, or because I'm just out of shape and need to get moving. I do try to move, but love to indulge in a bit of chocolate...

Memories of my parents at this holiday time are mostly good. My brother's theory is to live in the present and focus on the future. Really be here, right now. So, I'm signing off and heading out to hug my son.

Happy Holidays everyone!!
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My dad passed last month and although there was tremendous grief, there was also relief on my behalf for him (he had Alzheimer's and Parkinson's and in the last month it really took its toll), and for myself -- I moved home to take care of him and mom and kept him home until the end -- so it was a lot of hard work-- which we all do gladly but it's still so much to deal with physically and emotionally so, in an attempt to heal, I told myself that the silver lining for us all, dad included who hated relying on us for everything, is that the hard work, getting up in the middle of the night, lifting him etc., was now over and so, I let myself have that time away from all of that including this forum. However, now, there are things I need to deal with, with mom and for myself in now switching to take care of her AND, I also find that I now want to share what I learned in taking care of dad, with others that are still going through it. I strongly feel that there needs to be an additional positive outcome, besides helping my own dad, that just has to come out of what I went through to make it even more worthwhile because, let's face it, caregiving is a long, hard road and takes a physical and emotional toll on us so being able to share the new-found knowledge and help others is also a way of healing and, don't forget that "at the other end" you have to reinvent yourself: go back to what you used to do, have more time to see friends, resume past activities and so forth -- you have to learn to be who you were before you took on the most difficult and rewarding challenge of your life: being a caregiver to a loved one. Once your loved one has passed on, THEN you DO have the time to reward yourself for a job well done and resume some activities you loved that you may not have had time for. That in and of itself can be very comforting when you are grieving -- keep yourself busy and remember -- you still have a full life to live -- I found that very hard to accept in the weeks after dad passed. He was my best friend and I just felt so empty and wanted to join him. Then I looked at my mom, my friends, my colleagues and realized that I needed to keep going and when it's my time, I'll see dad again. So, that been my process for the last 6 weeks -- who knows what the future months will bring in the grieving process but I finally full understand what it means to take it "one day at a time"! Best of luck with your own process and do try to enjoy the holidays -- our loved ones would want us to.
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There is no one-fit-all answer to your question, for everyone situation is different n unique. When I lost my mom due to a heart-attack, I had mixed emontions for a while. Some were feeling guilty to not have all those responisbilities anymore. Some were guilty of the, What If? What if, I had did something different for would it had made a difference. To feeling she is not miserable living here anymore n at peace. My mom didn't have dementia so I wasn't under her 24/7. However, she never drove a car n her life, she was medicine for diabetes II n for depression n she dranked. I still miss her to this day even though we never had a close motherly bondship for she was still my mom. She passed away 1999 due to heart attack. I do realize now that, their was nothing different that I could have done for her n that the feelings I had n have are all "normal."
I went back to school n earned my bacheor's degree in Sociology. Now, I am trying to use that knowledge while taking care 24/7 for my mil who has moderate dementia. However, sometimes it a hands-on-learning situation. Plus, thank the Lord for JAM coming up with this site for support. There r grieving counseling at hospitals n the hospice to help you. Just remember that, everyone is different n their is no-fit-all to your answer for we all r different n unique. Their r others on here that have already crossed that bridge, n they still come on here for either support for themselves or to help give some support n tips. If you feel like coming back on here for what ever reason then please feel free to do so. I hope everyone here is able to have a Blessed Christmas n don't be so hard on yourself for we all r human.
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Hi, My Motherinlaw died suddely Dec 2 and I have felt so lost. My life was busy and I took on alot of responsibility for her. It has been hard and will take time.
At times I looked forward to the time my husband and I could be alone and have the house to ourselves after she lived with us for about 11 years.
I miss her, we were very close even though I got tired and frustrated at times.
The past three weeks I have been in a fog and lost. There is alot to do to clean out her room, clothes and papers. Alot of calls to be made and business to deal with.
I see her everywhere in the house. Some of her clothes show up in the laundry and it makes me sad.
I am glad she is isn't suffering but the way she died was horrible and I will never forget how she looked in the ER and died 4 hours later.
So many people have checked on us especially at church worrying about how we are. Mom seemed to be very well liked and cared about.
My goal is to get back into the things I want to do like piano Mom always liked to hear me practice, lose weight, finish projects at home to get organized and volunteer.
We had a new grandbaby born on Nov 28 and Mom died Dec 2 so it is bittersweet.
All I can say is take each day as it comes, feel what your feeling and if you can help someone else do it.
There is a huge void and I haven't quite learned how to relax since our lives were so centered around Mom's schedule, needs, Dr appts and so on.
I can now just leave my house and not have to worry if Mom is ok, how she feels and it is different having to relearn or undo what I did for over a year.
Take some time to rest and relax.
Grieve and cry when you need to. Remember the good times and hold on to those who are still here.
I hope you will find some peace.
It has only been three weeks for us and it is still hard.
Take care of yourself.
Remember your not alone.

No longer frustrated2012
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My husband I take care of my mom 24/7 for four years. I am 67, mom is 92. We have said that if she goes before we do, we are going to travel again like we use to, but can't anymore. When mom is having a day where she is really feisty, one of us will shout Barbados, or Antigua or Istanbul. We both stop and laugh and all is well again.
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I am in the same boat - my husband of 46 years suffered a massive stroke after a minor surgery and the world I knew was gone. He didn't recognize me, but somehow trusted me enough to let me take care of him. After rehab I took him home - there was never any question about that. And then vascular dementia set in and that was an all together different situation. Still, he was my husband, my life, and because he had become terrified of strangers, outside help was out of the question too. I took care of him for 11 months, 24/7 until he died peacefully in my arms. I thought knowing he was finally at peace would be comfort enough for me. Wrong - the guilt set in. Could I have done more? etc. You see, the problem is that your brain and your heart are not in sync. In your heart you know you did what was best for him but the brain keeps nagging. He died 7 months ago, and like Catjohn 22, something triggers the flow of tears. I sometimes find myself standing in the middle of our house and ask myself "now what?" As difficult as it was taking care of him, I still miss his little smile, the squeeze of his hand in mine, to let me know he feels safe.

I can't listen to Christmas music, not yet - I do love music, mostly classical. So I have been listening constantly to that. It helps, it keeps the "what if's" at bay. I started grieving the loss of him the day he had the stroke and I thought it would get easier once he was at peace. Wrong! Once you recover from the exhaustion it hits you again, hard. So, as you can see, I am still struggling. And yes, I am still reading this board on the daily basis, and part of me wishes I still could take care of him. But that is a very selfish wish on my part. He was such a brilliant mind and deep down he knew and felt what he had lost - his eyes and that sad little smile told me more then he could have done if he would have been able to speak.

As others have said, each person is individual, grieving is a long road, but in the end the sweet memories of the one you loved will replace the pain. As for getting your life back, I am still working on it.
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This timely question just popped up in my email inbox this morning. I had just been sitting listening to a Christmas song and crying, thinking about Christmases of years ago. My husband and I and our three sons always spent Christmas Eve at my in-law's house. Except for one other son, who was sometimes here for Christmas and sometimes not, we were their only immediate family, and our children were their only grandchildren. We had such good times. This is the first Christmas without them. My FIL passed away two years ago at Christmas, in assisted living, and my MIL just passed a little more than a week ago. We had always been close, but the past few years our lives had become much more intertwined when my in-laws finally became unable to care for themselves in their home. When they were both 90, my father in-law had a bad fall and had head trauma, which left him dependent on a wheelchair. We first helped them to get into assisted living in the same city where we live, about 25 miles from their home of 34 years. My MIL's dementia rapidly increased with that move and when her husband passed away, things really escalated. She was doing very poorly after being moved to the "memory care" floor of AL, and we ended up moving her back to her house. I left my job and became full-time caregiver. That was 20 months ago. We had just called in Hospice two days before she died, and she went very quickly and peacefully, but we weren't expecting this quite yet. We thought she would be with us through the holidays. Now, the funeral is over, the hospice equipment has been removed and the house is so empty and quiet. It feels nothing at all like Christmas Eve today, but I am trying to muster the energy to do some baking. I wrote a few Christmas cards, but even that was hard. My MIL's death affected me much more deeply than I had expected. I felt that I had been preparing myself, and the evening of her death I was mostly calm; everything felt sort of surreal for quite awhile. Since that night, I find myself crying at the oddest times. I have never lost a child, but this feels to me rather like what I imagine that must feel like. Maybe my caregiving energy just hasn't figured out where to channel itself yet, but this loss has hit me much harder than I ever expected. While I'm comforted that this 93 year old woman who has been wanting nothing more than to "go home" for the past few years is now at peace, something definitely seems to be missing in my life. I know that I will adjust eventually, just as I adjusted to the arrangement of being her caregiver. That felt very strange at first, but over the first few months we settled into a quiet and calm routine that worked about as well as possible for rest of the time that we lived that way. I was separated from my life for a long time, too, especially the past 20 months, and so there were two women in this house who were longing to "go home." As some others posting here, I can't imagine ever regretting the decision to help my MIL through her struggle. The grief will eventually pass, but the memories and lessons will remain forever.
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I too wonder what will happen when my Mom passes on. Right now she drives me nuts, and I have little time to myself. I often resent the fact that I have no life of my own anymore. Mom is 92 and I am 64. When I first started taking care of my parents, I still had a job. I had to give it up, to take care of them. It's now going on six years! Since that time I have had my own medical issues, most seem related to stress. I have felt guilty for some time, because I wished it was all over and I could have my life back. Then one night about 3am I woke with a fright, I suddenly realized, " I will be all alone"! Alone, with no-one. That and I will already be in my mid sixties! How do you start a new life then?
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My Mom passed away on the Monday before Thanksgiving after two years in a nursing home. I visited an average of 5 times a week, but the truth is my mother hasn't been my mother since she fell and broke her hip. And maybe the dementia was gaining ground long before that. I think I have it all under control, and then someone extends sympathy and I'm a blubbering mess. My husband and I are still going to HIS mom 4-5 nights a week,, bringing dinner and helping Papa get her to bed, so I haven't had time to process my own grief. And a dear dear friend dropped dead in September at the age of 72, so I'm still working through that as well. All in all, the Mayans might have been right....I don't know what to tell you about taking care of yourself because I haven't figured it out for myself. Best of luck. And have the merriest Christmas you can!
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