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From Hate to Need
Still Waters
Posted: Wednesday, December 28, 2016 11:33 AM
Joined: 2/6/2012
Posts: 1092


How does someone go from hating doing something so bad for so long, such as care giving, to wanting to do it so badly, now that the job gone?

Is this like some kind of cruel mind joke? It defies logic.


His Daughter
Posted: Wednesday, December 28, 2016 6:38 PM
Joined: 6/25/2014
Posts: 2270


Ok, LOL...I'll give this a try.

I don't think it's all that unusual.  The reason that you may have felt that you "hated doing this for so long",  isn't really that you hated it.  It was that you never got any down time or a break.  That day in, day out, grind, even with something we love, can make us feel like we hate it.  

Had you gotten time off occasionally, you'd have come back more refreshed and would have put some of that resentment attitude aside.   
 
We see this with motherhood also.  It isn't that the mom doesn't like having her children, she just needs more support and some down time.  As childrearing requires constant time and attention.  Just an evening out, or a day off, made a huge difference for this happy mom.  And in some ways Still waters, motherhood also carries this "Cruel Joke".  After 18 years of mothering a child, and getting to the point where you can hardly wait to pack their boxes and get them out, what happens?   Yep, mom's by the drove go into empty nest syndrome, and feel very sad about it all.  Now that it's gone, they'd give their right arm to have those kids back again.  
 
Again, you are very normal, and these feelings are all part of the process.  
 
    

Tay46
Posted: Wednesday, December 28, 2016 7:51 PM
Joined: 9/18/2013
Posts: 243


It does defy logic. I feel the same way. Caregiving took a toll on me emotionally and physically. However  if someone gave me the opportunity to have my mom back and do it all over again, I certainly would. Yet, the end result would still be the same. It just seems as if I've lost my purpose.
Still Waters
Posted: Friday, December 30, 2016 4:13 PM
Joined: 2/6/2012
Posts: 1092


Good point His Daughter. Never looked at it that way, guess because I never had children.

Tay not only did I lose my purpose, I lost myself. I don't know who I am anymore. I defined myself as a caregiver for so long. I forgot who I was. I am certainly not the same person I was before my mother got Alzheimer's.


Moish
Posted: Friday, December 30, 2016 5:37 PM
Joined: 7/29/2016
Posts: 319


Interesting take, His D. Yes, I think you're right. It's such a purpose. It gives total direction -- like it or not. 

And then what? 

 


Still Waters
Posted: Friday, December 30, 2016 8:31 PM
Joined: 2/6/2012
Posts: 1092


Then what? Is a good question. I assume if you're married and have children living nearby or grandchildren to care for the answer would be easy. Just pick up with life where you left off. But for those of us who are alone the answer is complicated. There is no life to pick up because the life you had no longer exists. Some might consider this as a new adventure in life with a clean slate. Some might consider it a curse.
Tay46
Posted: Saturday, December 31, 2016 1:05 AM
Joined: 9/18/2013
Posts: 243


Still Waters wrote:

Tay not only did I lose my purpose, I lost myself. I don't know who I am anymore. I defined myself as a caregiver for so long. I forgot who I was. I am certainly not the same person I was before my mother got Alzheimer's.

I know what you mean. It's as if you're starting all over again. I know I'm not the same person. After being what we've been through, I think it is impossible to be the same person coming out on the other side. I am reading this book called Becoming Myself: Living Life to the Fullest After Losing Your Parents. It's pretty good with a few exceptions. It gives insight and guidance about how one can reenter, if you will, the land of the living and redefining or finding new purpose in life.  People with a spouse and children have something to focus on. With people like us with none of that, alone is really alone. I never knew quiet could be so deafening. 

His Daughter
Posted: Sunday, January 1, 2017 10:13 PM
Joined: 6/25/2014
Posts: 2270


Still Water, I believe that some of what we experience is a total identity crisis.  In some ways, I think your feeling more closely aligns with caregivers who have lost their spouse.  There is such identity in being a couple.  You socialize with friends as a couple, every part of your being is in the marriage.  It really is a totally new life when you lose a spouse.  No one to live with, share daily conversations, go out together, have dinner with, etc.  And since you didn't have additional family members, this makes it all that more difficult.

  So yes, I get it that you are now in the process of picking up all these identity pieces and trying to put the puzzle pieces back together.   But the puzzle has completely changed.  And yes, many people see this as a new (yet scary) adventure.  But even for those people, it takes time to want to venture out into this new world.  It doesn't happen over night.  

  And I do think that having my husband, kids and grandkids helped keep me grounded.  They were also a part of my world.   While Dad was my primary focus for years, we all felt his absence.  

  Maybe when you are ready, you can look around and for the first time in a LONG time, ask yourself what you want things to look like. (Don't think you're ready yet for this.)   All I know for sure is that we only have one life to live.  And it goes by all too quickly.  So whatever time you have left in this world, do something that makes you whole and happy.  You were such a wonderful, thoughtful, compassionate caregiver, could you see yourself somehow involving yourself (in some capacity) for others who need loving help?  It might fulfill your need to feel purpose again.  It might be the first step to finding a new YOU.  Just a thought.  

And then I re-read this comment you made:  I am certainly not the same person I was before my mother got Alzheimer's.

ME EITHER.  I think this experience does change us all.  I certainly know it did me.  But the question remains, "Who were you before your mom got AD?"   Any pieces of that person you miss and would like to see again?  I only ask, because this is one thing I am trying to do for myself right now.  I used to always be so happy, optimistic and energetic.  Where the heck did that go?  I know it's there somewhere, I just need to find it and harness it again.   But I also  know I also miss my identity, as just bing, a daughter.  My dad was the last person who could ever refer to me by that term.  And now that's gone too.        

But we all have to admit that as well as losing our LO, we also lost our role, and our identity, as a caregiver.  One of the hardest jobs, we ever loved.  Many people ask "What in the world do I do now?"  "How do I start over?"  and "What does this new picture look like?"  

I guess that answer is, what ever we want it to, when ever we're ready to draw it.       

    


KML
Posted: Thursday, January 5, 2017 12:25 PM
Joined: 11/30/2011
Posts: 2105


I can say for me it wasn't easy to pick up after my father's death even though I was married, had a child, had full-time job.  I found that husband, child, employer did not understand the depth of my loss.  My family went through their own experiences with my caregiving, they saw me run myself into the ground, but even though they cared, they could remove themselves from it.   I was running on fumes for 12 years trying to cover all bases.  My father was my main focus for those 12 years, followed by full-time work, couldn't quit, needed the money, daughter, husband, home.  I didn't find it easy to go back to my life.  I found it hard to remember what it was like to not eat on the run. Everyone else in my family, my employer, they were sorry, but they moved on and went back to doing what they do, and everyone else thinks you should be able to do that, too.  I felt I was standing alone in my grief, my feet were stuck in cement, it felt like.   It's not a matter of picking up the next day, week or month and resuming as if a minor glitch just happened.  The time of caring for my father was an intense time as it is for most of us.  It was hard to remember things being any different, it was a consuming time in my life.

I was running at full speed and when he died, I hit a brick wall.  I had to slowly peel myself off of that wall and look around me at everything and everyone that fell through the cracks, including myself.  I am still trying to pick up the pieces and doing a lot of catching up on things that need attention.

Everybody's situation is unique. 

I thought I was pretty good at managing everything while I was caring fro my father.  I had a routine going and I got used to running on fumes, it became the normal for me.  When he died, I lost myself, too.  I had defined myself as his caregiver, I was my father's advocate, I was, what I thought, his savior.  I knew what the outcome would be, but when he died the way he died, I was unprepared.  My sole goal from the moment he was sick was to provide care and comfort to him, I thought I could keep him from suffering.  When he died, I beat myself up relentlessly for what I felt were my failures, my shortcomings, the things I would have done differently, etc.  On and on and on I beat myself up.  I still do that sometimes, not as much as I used to.  When they die, we are left numb and not knowing what to do, we are temporarily lost.  Eventually, though, we begin to move, we pick up and go on.  I'm still picking up.  This is not an easy process to go through, but we do it in time, lots and lots of time, it doesn't happen quick.  One thing this experience gave to me, is that I found that I am a very strong person, I did things I never imagined I could do, I did it in a heartbeat because someone needed me.  I found a capacity in me for compassion and strength.  I was not perfect, but I always did the best that I could at the time.  I know now what I am capable of.  Four years later, I am still sorting through it all and I expect this will go on for a while and I now accept that.  It's traumatic for sure, but it's not hopeless.  I see things now that feel hopeful and joyful, sometimes the smallest of things.  In time, it comes again.