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Here4her Asked September 2012

To those caregivers that have lost their loved ones. When the grief has calmed down, do you find that you can regain your life back?

After the stress, burnout, guilt and all the other negative emotions you have delt with. When the grief has calmed down, do you find that you can regain your life back? After all the years of the constant stress, work and messes you kind of loose yourself. Seperation from your friends, things you used to do and are now left with an empty bedroom and you are worn out, can you take your life and health back? I know a lot of you have done your duty, but stay on this board to help support the rest of us. Any input on your personal experiences you can share with us?

anonymous439773 Sep 2017
This is an interesting post. My dad died in 1993 and my mother forbid that me or my brothers show any emotion. I never did grieve. I was at  the end of my abusive marriage and ex would have abused me if I had cried. My mother died this past May and I haven't cried. I don't whether I could. My brother died last month and I went thru the motions of the funeral.

I'm not sure if I know what normal is. I work hard to help others. I garden. I work on my home. I have someone in my life that I care for, but I honestly don't know what normal is for me. My other brother and I are going to counseling. We're both very honest in counseling. Sometimes the counselor looks at us in disbelief. We come home laughing sometimes because of how the therapist looks at us. Maybe someday I'll get to a different place or maybe not.

cdnreader Sep 2017
Thanks for bringing this back to the top Send.

Its tough. Its almost 11 months since my dad passed and I too feel lost. All my siblings have moved on but me. I am still torturing myself about what I could have done for my dad.

The house feels so empty without him. I've never felt lonelier in my life. Everyone keeps telling me to make a new life. To live my own life. But I don't know what that looks like. I've always been the helper in my family and since my dad's passing, I don't even want to be that.

I keep putting one foot in front of the other. I keep hoping there will be a spark or a glimmer of something that might get a hold of me and carry me through another day. I know life is precious but sometimes I wish there was something or someone to make things better.

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BlackHole Sep 2017
Same here. Lost Mom almost 2 years ago. I still lack a certain .... I don't know what.

Once I hit adulthood (actually, inappropriately sooner), I thought I knew every pathetic thing about my low-functioning family. 

Then the last 5 years happened.
More is more alright. Whew. 

Lotsa nature and nurture to overcome. Which is something I've always known.

For many years, I was up for the challenge. Now I'm off-kilter.

And if I stay in this chute, I'm just another defective kook from the XXXXX family. 😐

Rainmom Sep 2017
No, for me as well. After six years of never starting a project, never wanting to be too far away, not even reading a book for lack of concentration, wanting to go to bed by 9pm so I could close my eyes and make it all go away - I haven't the slightest idea of how to fill my time now and find myself doing a lot of aimless pacing around - as if waiting for the phone to ring again and me being needed.

My moms been gone one year and seven days. It took seven months for me to settle her estate - five months now of me not knowing how to live my own life again. I keep thinking it will come back. I don't know - maybe it will. But for now - I'm pretty lost.

jeannegibbs Sep 2017
To those caregivers that have lost their loved ones. When the grief has calmed down, do you find that you can regain your life back?

No. At least not within 5 years, which is all I have to go by.

Sendhelp Sep 2017
Bringing this back to the top.....

Eyerishlass Jun 2014
Good topic.

My dad died May 11, 2013. He had been living with me in a house that I rented for the sole purpose of taking care of him. It never felt like a home, just a necessity, but I did my best to make homey.

When my dad moved in it was a whirlwind, so stressful. I didn't have time to stop and think about anything. But after a while I began to realize that the roof over my head depended upon my dad's health and I began to realize how precarious that was. My stress level increased.

Eventually the day came where he went into a NH. He was in liver failure, had swelling of the brain, and was unable to walk. While all of this was going on I had to find another place to live because financially my dad and I had been roommates and his pension had to go to the NH. And with a new place to live I had to find another job. Another job aside from caring for my father because I realized that just because he was in a NH didn't mean that my caregiving ended. It just got different.

He died after 6 months in the NH. I thought I had grieved for him while he was still alive although I knew his actual death would still hit me. I wasn't prepared for how hard it hit. For years I was my father's daughter. His best friend. His caregiver. His nurse. His advocate. His bookkeeper. His business manager. His pharmacist. And once he died I was......free? Is that the right word? I don't know.

I don't know if I went back to my old life. That life ended years ago when my dad moved in with me. But I have tried to create a new life. A new apartment. A job. My dad never got to see our new place so this apartment is totally separate from my dad. And by the time I got a job my dad's cognitive abilities had decreased and he was angry that I had a job. He wanted me with him all the time. I definitely don't miss that.

Did I regain my life back? No. But I did make a new life.

ohreally51 Jun 2014
My best friend, 57, just last week lost her husband of 37 years after a 3 and a half year battle (that got very ugly) with brain cancer. She became the nurse, advocate, personal attendant, room repainter (after he bleed explosively from every orifice), bathroom scrubber, accountant and finally full time employee to support herself (after they lost their house in a sheriff's sale and discovered that he had, while in a financial find unknown to her before he got sick) dropped his life insurance policy. Her lover, her husband, her friend, her companion since she was 19 was gone for a long time. She and her husband used to run half marathons together. This race is the longest, hardest and the one she both won and lost the most ever. I spent a week with her during all of the funeral arrangements, spending long evenings with a lot of wine, but not 'whine'. My friend, who I have known for 35 years and we have been through so much and supported each other through most of it, has impressed me beyond measure for her strength and character. And I can tell you, I know more than just that 'he was a great guy' and 'she was by his side for 37 years'. There are many layers to this as anyone who does it knows. She beat up on herself for not thinking that he was just the fantastic, great guy the many friends who showed up to honor him and his family thought. I told her 'that's ok. You were the best wife ever. You ran the hardest race ever. Never be hard on yourself. I cannot express my admiration for you'. Here is to all of you, all of us, who care for others and then lose them. It is a hard, long run toward something that you know at the end you will not 'win' anything. But you have accomplished what many people never do.

Hopeless May 2014
The transition back to my life has been extremely difficult. So glad I am not alone in this. I've had friends tell me to return back to work and things will all be better. I know I'm not mentally ready to be back in the work force. I can barely remember to pay bills here at home.

I am feeling so lost ....

Reverseroles Oct 2012
Anniegirl, loved your story, and feel for all of you who have lost their loved one. I too know how hard it will be to lose my Mom but I also wonder "is there life after caregiving" such as Lisbeth. My Moms immobile, incontinent, non verbal except a few words come out, and I use a hoyer lift to move her. Its very difficult moving her into a wheelchair straight, any suggestions Anniegirl? Hoyering into her recliner and bed is ok but I lift her on and off the toilet to bathe her and she will still do her BM's in there each morning if I give her prune juice nightly. Bless you all, I still get smiles from my Mom and love to be here for her every whim and spoil her, I also left my job for her. I sometimes wonder, how long are they immobile and what happens? Scary to me, I dont want any suffering for her, shes my sweetie pie. Thinking of you all...

Lisbeth Oct 2012
I've wondered this myself and am appreciating everyone's input. Me and hubby, who's retired, care for his mom, currently in re-hab, and both my aged parents who live next door. Mil is teetering in re-hab and will mostly likely go to SN next. We've cared for her the last five years while she was able to stay in her home, but is beyond that now. Dad has heart failure, was 89 last week and my mom, who is 85, broke her shoulder last month and is re-habilitating at home.

I wonder by the time they're all gone, will me and hubby be at the stage they're at now, needing help from our kids? I hope we can still remember the things we talked about doing when we had more time and money, but now I have to add the question, will our own health be up to doing any of it? And will we still want to?

Tell us there's life after caregiving!!

AnnieGirl Oct 2012
Here4her - I took care of my darling Mom for 14yrs. There were times when I thought I just can't do this for another day but somehow I found the strength to keep going. My beloved Mom passed away May 23rd 2012. Taking care of her for so long had been such a huge part of my life that I was and am bereft without her. I am missing her so very very much though it is getting better most of the time. Mom became ill on Monday May 21st and passed away at 3.35am on the 23rd at home. My brother Micheal, my angel Home Help carer and I were all sitting with her, holding her hands when she slipped away peacefully. I know I will be OK eventually but right now I am not nearly as composed as I thought I would be. Aged though she was and with the Dementia, losing her was still a huge wrench - she was still my Mother. Mom had dementia and for the last few years was immobile, had to be washed, fed, dressed etc and moved with a hoist so it was tough. When the funeral was all over, I had some bad evenings - especially when I went back to work at first. I thought I was coping - just. One of the 1st evenings I came home to an empty house - aside from my dogs and I realised that this is it. This is the way it's going to be from now on. I'm never going to get another hug or give another hug to Mom - why didn't I do it more often. It still breaks my heart.
I'm doing good most of the time but I still have moments where I cry with loneliness for Mom. I thought I would be better about Mom passing but for some reason I'm finding it much tougher than I initially thought I would. Even as I'm typing this I'm crying. That's what I mean, I think I'm fine and then I can cry for no apparent reason. It's not happening as often but it still hits me out of the blue. After talking it over with someone, they suggested that when my Dad passed away I had to immediately take care of Mom and that maybe I didn't really grieve properly for Dad and that I'm actually grieving for both of my Parents right now. Don't know if that's true or not. My friends who always remained loyal throughout my years of caring for Mom are still here and still insist on me going out with them to movies, dinner etc..I'm am lucky in that respect. I know it will just take time - it is after all only just over 4 months since Mom passed. In July I went to the Doctor because I thought I had something wrong with me, I was so tired all the time. Getting up in the morning, I felt like I'd not slept at all. I thought I had Diabetes or something but after some tests, turns out that I was fine. My Doctor thinks I was emotionally exhausted as well as physically wrecked from all the years of caring - it takes it's toll. Somehow you keep going on adrenelin for the funeral etc but then it hits you like a ton of bricks. I'm still in the grieving process and I know Christmas will be tough but spring will hopefully bring with it, new challenges and a chance to evaluate and decide what I want to do with the rest of my life. Till then I'm just letting life carry me. Sorry for the rambling post.

oreosmeow Oct 2012
Here4her, I hear you, being afraid about the respite care. My mom was just in a rehab facility for a month and everytime the phone rang, I was sure it was about her.

I know I won't regain my life. I quit my job, gave up everything to move across country to care for my mom. I know no one here - I'm hoping to make some friends within the caregiver support group I've just joined - if my mom died tomorrow, I'd move back home as soon as the estate was settled enough for me to go. I'd hire whatever pros I needed to deal with the house and contents, just to get out of here that much faster.

But even so...things won't be the same at home, either. I feel like I've fallen off the face of the earth.

Here4her Oct 2012
Thank you for your stories. And I welcome more -they will help other caregivers.
My mom is still alive and in my home. Tomorrow she goes for respite for. 3 weeks. If she doesn't snap out of what she has just started becoming (turning on me, throwing her pills all over and thinks I'm an imposture who took her daughter) she will probably be there long term.
I guess I was hoping I would just bounce back to my normal crazy self - very outgoing. Now I'm so lonely I already feel dead inside. I'm even dreading respite, fearing something will happen to ruin it and I'll be called back.
I'm glad you all answered this question. Maybe can pick up ideas. So we can try to snap back into a joyous life we gave up so long ago. I'm still on the journey and so are most the rest. But thank you all that have answered to helpmus see what is beyond the tunnel.

N1K2R3 Oct 2012
I, like Nancy Reagan, have never gotten over the death of my husband........never will...never. Life does go on, however, and you will find things to do, places to go, ideas to investigate, learn to explore, and then plan for your own death. It will certainly come along someday, and you must be prepared. Meanwhile why not create a "bucket list"? It's fun! The only thing that I regret is that I did not seek and enter into Grief Counseling. I was told that this is important, but I did not participate. Wish I had. I guess it's not too late. The guilt of all the things that I did NOT DO still haunts me to this day. Caregiving was a breeze, now that I look back on it.....didn't think so at the time..

ohreally51 Oct 2012
I was particularly close to my grandmother, who passed away twenty years ago. My grandfather, the love of her life, had cancer from the age of 58 until he was 63, when he died. She did so much for him; I remember as a young kid accidentally walking in on them while she was changing and cleaning his colostomy bag. They were surprised and yelled at me; I think the only time she ever did. But I recall thinking even then, and I was about 8, that was really true love. And it was so obvious that she was protecting his dignity as well as performing a task that was highly distasteful.
When I was growing up, now that I look back and am close to the age she was when she lost him, she made time - always - for friends. She lived very close to our family (right around the block) but she was really too young to totally immerse herself only in grandchildren. She told me once that she never cared about dating - "once you have had the best you don't want anybody else". But she was dedicated to keeping up a social circle, gardening, and spending time with us, especially me.
I asked her when I became an adult how she coped with losing him so well. She said she didn't, at first. But she just decided that she would never turn down a social invitation because "if you refuse to go people will stop asking you to". That anecdote served me well in my life. I went through a very tough divorce not much later after she said that to me. I wanted to curl up in a ball and hide from the world. Work and my children were all I could really manage. I didn't care for a while if I just died. But what she taught me is to put one foot in front of the other, whether you WANT to or not. Feelings may follow, which you can't control, but actions can be taken just by determination.
If your life has revolved around someone else, no matter what the circumstance, and that is inevitably yanked from you, don't give in to the urge to hibernate, turn down offers to go out or allow yourself to sink into depression. Get professional support if you need it and make yourself move. Exercise physically. Don't drink too much. Eat well. Try to laugh. Eventually you will discover there is life out there. God bless.

3pinkroses Oct 2012
Here4her - I was the only one, primarily, outside of my husband to care for my MIL who lived with us with Alz., my mother at a nursing home and my father. It was all consuming as everyone here knows and I did suffer increased stress related health problems while the entire time had chronic pain issues of my own. My mother passed away in August; ending my caretaking responsibilities; for the elderly, anyway.

You can reclaim your life, but slowly. I'm dealing with regaining my health at the moment. The chronic pain is still there, but relieved that I don't have to travel 100 miles to take care of my mother any longer. My mother is at peace now and I am glad I was able to be there for her; especially at the end which, sadly she suffered quite a bit, but I was able to facilitate end of life hospice and was with her day and night to comfort her.

Friends have fallen by the wayside as the caretaking and chronic pain did cause isolation from the outside world. I'm sad about that, but do have some true friends who understand. We adopted a 5 yr. old dog and he has saved my life. He is the most loving dog in the world and very therapeutic for me. I want and need to return to the workforce, but this is a daunting challenge. You lose a part of yourself in caretaking; but also gain in other aspects. I have three daughters who still need me, even though they are ages 18 - 24. I now have the time to devote to their needs and that feels wonderful and satisfying.

"This too shall pass" was a phrase that helped me and continues to on so many levels. My thoughts and prayers are with you and hugs across the miles.

kuli Oct 2012
I don't think you ever go back to life as you used to know it because the caregiving experience changes your perspective on how you want to use your time now that you have some. It will be one year on October 26 that my dad passed and I am just starting to explore what I want to do. The exhaustion, physical and emotional, takes a long time to get over. Any of my "friends" who didn't understand why I couldn't make last minute plans, meet for drinks, meet for dinner, etc - they've moved on and so have I. The friends that offered support - most of them on this site - are the ones I cherish and would do anything to help. Sometimes I still feel like I'm forgetting something because before every minute of my life was filled doing something. I'm happy I could do this for my dad but I still suffer from depression and am still seeing a counselor. It truly is PTSD only a different type of war. Good luck! Kuli

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