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I am aware of two different forces acting from within me.  One is the downward weight of grief. The other is an upward energy that comes from the release from caregiving.  After 16 years of part time caregiving, seven of which were full time.....during which (at one point) I completely lost myself... I feel I am getting parts of myself back so I have the strange sensation of having lost Bernie but beginning to find myself again after all of these years.  Anyone else experience that contrast?  I'd love to hear what it has been like for you.  I feel I have layers and layers of stress to peel off and with each layer I find a little more of me.......and, yet, at the same time I miss this man, this friend, my partner of 37 years.

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Germaine ...  Boy, did you hit the nail on the head because I feel the same as you do!  It is a downward weight of grief and then the upward energy that comes from the release of worry and concern along with caregiving.  I also lost myself during those years and had to quit work to do so.  Looking after both sets of parents and eventually my husband, but I'd do it all again.  I lost myself!  I'm edgy, surges of energy and feelings of such energy, but don't know where to put it.  I volunteer and I'm still not quite myself and it doesn't fill in a void I am feeling (can't decide what that void is) but I'm generally a very extroverted person and find I am much more quiet now.  I have to still reach back into my memory to discover who I once was.  Someone once told me it's like peeling one layer at a time off an onion.  I think the feelings we are having is 'letting go' of the man we loved and that's not saying we have to forget them and we'll always love them, but we've come to the realization they aren't coming back and we have to live on in their memory.

I wish you luck Germaine and I am sure you'll have a happy and fulfilled life.

I feel that way too.  I wonder if it is true that somehow we have to work backwards to rediscover who we were and forward again to discover who we are meant to be now.  I have the energy coming back but really don't know how to use it. When people tell me to go back to what I did before I looked after Ray that is 14 years ago so obviously I would have changed my ideas a lot since then.

Ray and I were married for 44 years but really our relationship changed in 1990 with the first stroke when massive fatigue issues meant he could still work but collapsed as soon as he got home, so I worked and took up all the strain of looking after the house and yard etc. And then our life together changed again in 1999 when I became his full-time caregiver, and changed some more as he had more strokes and got more and more debilitated.

When people say: "now it is "Sue time" I dont have the faintest idea what that means.  I am hanging on, waiting to see if it will become clear to me what I am going to invest my time in for the rest of my life.

only1sue ....  I believe we have to work backwards to some degree before we met our spouses because that's when we were more alone and still functioning.  We need to find out what our characteristics are and regain them back.  Of course we have aged since then, but characteristics (our personalities) don't really change.  I too have my energy coming back in this 2nd year of grief and pace around the house wanting to get rid of the energy, but don't know where to put it.  I also feel I have lost my creativity in writing, art, etc.  I know it's still inside of me and I will just have to have patience until I can regain it back.

The best way to go back in your life before you met your spouse is by looking at photo albums because often we forget what a full life we had at that time.  It isn't easy, but it will happen as time goes by. 

Just like you and Ray, Ernie and I were married almost 40 years and I knew him 5 years before that and a lot has changed since then or has it really?  I still can find that some of the loyal friends that have stood by me still have the same sense of humor and the odd time I can feel my sense of humor coming back and other times I sit there and fake a smile or a laugh.  I am so sorry Ray was so ill for so long and it I know how difficult it was for you.  Ernie was ill for 7 years and probably more that we didn't know about and would also go to work, but come home exhausted.  I worked around him and never planned anything too strenuous.  In 2006 things began to change as my husband had more and more health issues, but we never thought it would end up with his death and being caregivers such as many of us were kept us busy and feelings of being useful. 

The old saying, 'a watched kettle never boils' applies to the fact that if we watch and wait for the old us to come back it may never happen, but if we take each day at a time we will begin to realize that we are changing ever so slightly because we are able to still function to a degree and will soon find out our own strengths and weakness' which everyone has.  We'll gain more trust in OURSELVES!  That is the key, no matter how ill our spouses were we still felt safe with them, but now we move forward in order to trust our own decisions in life with a little help from family and friends.

Germaine -

I think this is multi-layered.  As hard as it was to watch Don grow weaker by the day and die, I knew he was finally out of pain and not suffering and at peace.  The downward weight of grief as you so aptly put it, is definitely still there, but yes, there was (because it's almost three years) a sense of getting myself back, but it took a couple of months.  The grief was so great and so intense, it was all I could feel for quite a while (I can't remember everything now - I think I just blocked some of it out).  The caregiving was so traumatic combined with the loss that when my dog got sick, I just couldn't handle caring for a sick dog after caring for, and losing, Don.  Now as I approach the end of the third year there is of course still grief, and I still miss Don with all of my heart, but I find myself wondering more and more what my purpose is.  My situation has been somewhat complicated by multiple losses as time has passed; my father in law, my father, my dogs, relationships with family members have been trashed by their spouses... there's been more crap than I care to relate! But I do find that I am slowly building a new life.  At least, I'm working on it.

I don't know if I answered your question or not.  But I get what you're saying!

Reading through each of your insightful replies...I sure see the course of the last 5 years, and words that match my feelings and experiences.  Germaine, that was so true for me, feeling the two different forces (and more) acting on me.  Well said.  And I see that you were a caregiver for many more years than I ever was.  Yet the feelings are similar for so many of us...we adjusted our lives to their needs, out of love, out of commitment.  Then that experience of working my way back wards.  You all hit the nail on the head.  There's a back to who I was and who we were together during the earlier  years of marriage.  And then there's the who I was before I met Tom.  And as much as I feel "so different" in terms of accumulated experience and being more mature, I can still connect with that young adult, 18-22, remembering the things I cared about and wondered about.

 

Recently I've been finding or re-noticing books I read and packed up (I've moved twice since losing Tom) and being fascinated with "who I was when I last read this."  Because that was 10-12 years ago.  My husband was tired and distant sometimes...still loved me but had this fatigue, was working full time and selling on ebay; always on his computer.  I joined book groups, church and work activities, and actually started NOT letting my life revolve around what mood he was in.  As it turned out he had one problem that was causing pain and fatigue but was treatable.  Then he had knee surgery, then unfortunately he got addicted to prescription pain meds.  So although I wasn't a caregiver, I was a care-watcher, until he finally got through the rehab program, got his energy back and acted like himself again.  During those years I was always watching...wondering what symptoms I was going to see next.  The reading and hobbies became therapy and distractions instead of things I did for my own enjoyment.  Someone I met in a counseling group said, "when your partner is an addict, you lose yourself."  Oh how true that was.  But he got off the pain pills and had a year of normal life...I had him "back."  He started going to movies, to see friends, being like the guy we all knew and loved.  We were starting to get back to the routine of a normal life...

 

Then strange symptoms, fatigue, he seemed tired, disoriented.  This time it was cancer.  Eventually doctors determined surgery was possible.  My husband asked me to be "the researcher."  I spent much time online, trying to learn everything I could, trying to get him into major cancer treatment centers.  He became my "work."  He recovered from the surgery!  He regained most of his energy although he had to pace himself.  And he still had to take pain pills for a long time afterwards (liver surgery is very drastic)  Sometimes he would still have those strange behaviors of the years before.  And anxiety.  Pills for that.  And me trying to help him keep track of everything.  And then there would be an almost normal weeks or month.  Then a scan was due.  More anxiety.  Radiofrequency ablation.  (A day surgery)   Pain pills. 

Went on for months.  Then...symptoms of liver failure and that process began.

 

Boy I do go on and on.  Just trying to say that for over 10 years I was paying attention to him, either to help him, or make sure he took meds on the right schedule...and watching the symptoms.   So lately, near the end of year five I keep having these "finding me" episodes and they all seem to be the me of the early 2000s when all this disruption started.  Don't get me wrong, I loved him and he loved me, and I have no regrets about sticking by him with the earlier addiction problems.  He did his part to recover from that.  But I keep thinking I "left off somewhere" with who I was.

 

At the end of summer (August 20130I took a drive across the state and visited the city where he and I met...I even walked past the building where I filled out a job application for where I first worked, over there, even before I met Tom.  It took me by surprise...and I started wondering and trying to remember what I had actually been like.

 

So it's weird; there are two different times in life I go backward to, that "married-but-individual" me who put her books down 12 years ago, and that young adult who I barely remember, but who seems to have some connection to the way I am now, almost 60.  I wonder about starting something new, not necessarily a new relationship (tried that, didn't work, long story) or revive my art interest from years and years ago...I am still working at the same job as when DH passed.  I'm fortunate to have it and enjoy the work and other employees, but for a long time I felt relief at not having to watch out for my husband and monitor his meds and symptoms and relief was a major state of mind outside of my job.  Now...that relief is not necessary; he's out of pain, I don't have to worry about him any more.  What am I supposed to do now?  Going backwards to find roots of that answer I guess.  For the first years after he died, I felt "out of a job" with having nobody but me to focus on and my mind was in such disarray.  It's only been in the last year or so that I so strongly feel this "working backwards" that you all describe, happening in me. 

 

Thanks for reading, if you made it this far.  There is a "release" we have been given, but released to do what next is the quest.

This has resonated with me. I think my real caregiving time numbers in just months not years but the cancer was always in the background for 11 years. These last few months were so focused on his needs, meds, pain, appointments. I wouldn't trade it in for anything but there wasn't very much me time.

Now I am trying to figure out who I am now. I married late in life (age 41) so I was alone before that. Alot of the routines and habits from that time are kicking in I think. Or at least it doesn't feel totally alien to me.

I definitely feel that dichotomy of grief and release.  And yes I miss my husband, my partner of 20 years.

It helps to write this out.

Susan -

I never really thought of myself as a "caregiver" until Don got cancer, but because he had Crohn's Disease for all of our marriage, I really was a caregiver for most of those years as he slowly but surely got sicker and sicker.  Crohn's  progresses, so he might have part of his intestines removed from the disease, but then what was left would become inflamed and make him sick.  But the care-giving then was off and on.  But yeah, I made sure he ate okay, or didn't eat certain things, order his medication, call the doctor when he wouldn't... be at the hospital with him (it sucks being in the hospital, and when I've been there, I would tell him he didn't need to come... except when I had my back surgery; then I wanted him there).

So yeah, now I'm trying to figure out not so much who I am, but what my purpose is and why I'm still here.  I am so used to being needed, by Don, our daughters, my mom... now I just can't figure it out.  What do I do when no one needs me? 

Germaine,

We were married for 40 years and for the past 6 years Gary was failing.  The last seven months of his life were spent pretty much in the hospital.  Sometimes I sit in our family room and sigh because I don't have to spend the night on a chair in his hospital room and watch monitors.  I don't regret a moment I was with him and advocated for him, but I don't miss the grueling toll on him and me.

Caregiving was my full time job, constant researching, doctors' appointments, jumping through hoops to get the insurance to approve MRIs, medications, running to fill prescriptions, ensuring enough meds to make it through vacations.  So much had to be coordinated. How were there ever enough hours in the day?

 Yes, grief and release. 

Oh yes, Germaine. A definite contrast and I like the way you've described it.  I got married at 18 and went right from high school and living with my parents to being married. I never lived alone, so after 41 years of being Vern & Dianne, I had to do some real searching to figure out what I wanted to do with the rest of my life. Those final 4+ years of heavy caregiving were overwhelming and I actually had to grieve the loss of that 'work' and closeness I shared with my husband. I miss him and know that I always will. But I also believe I need to live my life to honor him and the years we shared. So I attended the San Diego Camp Widow at 11 months and the Myrtle Beach Camp at 19 months. I found Brave Girls Club and attended their Camp at 23 months. I've taken some online classes, too. And I just returned from an ArtBeach Retreat that was really wonderful. None of these was easy for me to do - but each of them called out to me when I read about them. I immediately felt it was something I was supposed to do ... and each of them gave me what I needed. Really scary to head off to an unknown experience, not knowing a single person, but I'm so glad that I pushed myself to do these things. Keep on searching for 'you' ... you may be surprised at what you find.

Germaine,

You hit it out of the park...I can recall telling friends that I have lost myself, didn't know who I was nor what I wanted to be or do when " I grew up" meaning when this journey ended. I was caregiver for 8 years. I was able to keep my hubby home until he developed some wheezing. In the end it was Acute Pulmonary Edema and cardiac arrest that took him. He was a diabetic ( under control) and had dementia of the Alz type. So I became everything, had to take on all the chores, make all the decisions and it was exhausting. I didn't know how exhausting until I lost him 2 months ago. After the funeral I could not stay awake and I still have odd sleep patterns. But I do feel some relief in not having to run to one doctor or another with him or having to collect his meds along with all the other things that needed done. I miss him terribly...He was such a sweet man, kind heart, generous, funny, just an all around great guy.I have to say though I am not used to the "free time" and somehow have to relearn how to schedule things so that I don't waste so much time...for all the time to get things done, I don't seem to make things happen..

What I am at peace about is knowing that had my husband survived a cardiac arrest his medical conditions would be so much worse and he is spared having to suffer that and I have been spared not having to watch this special man go through this knowing there was nothing, not a d((&#% thing I could to about it to change it. That blessing gives me peace and relieves me of the sense of anger some might feel at the departure of their LO.

I share your feelings Germaine. My husband Dan struggled with a rare heart condition and the ongoing multi-organ failure that followed for 24 of our 32 years together. He was a brave and proud man who tired to maintain his independence but he required a lot of emotional and eventually physical care and support. The stress and burden of this was heavy resulting in my own illness and emotional trauma and yet, because of our wonderful relationship it always was secondary to my desire to help him enjoy life and have a satisfying quality of life despite the limitations. I have almost felt guilty at times when a realize how I feel minus the stress and yet I miss him more than words could ever express. I have particularly had challenges minimizing the memories of the last few months and the traumatic events that my darling experienced. I try to take my mind to happy memories of the two of us together and it helps to ride out those tough times. I wish you comfort and peaceful days as you too try to move forward in your life without Bernie.

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