Author Topic: After the marathon...another marathon  (Read 2318 times)

canadiangirl

  • Member
  • Posts: 438
After the marathon...another marathon
« on: May 02, 2016, 06:18:02 AM »
I'm posting here because I know there will be other former caregivers who get it. I am likely to modify this post at some point as I don't like to leave too much personal info here.  Sorry for the long original post.

I am a cancer wid.  I was only a caregiver for 4.5 years, and for many of these, my LH could take care of himself.  He became isolated and very angry and rightly so- it became clear early on that he was terminal, and I truly believe it is torture to know this, especially (but not exclusively) when you are young like he was.  He lived for years knowing this, and although I am glad he lived as long as he did, especially so our small child has some memories of him, he suffered mentally and physically.  It was a constant shit storm, with his anger, walking on eggshells and the endless stream of bad news.  He just never caught a break, ever.  We marched inexorably to his death, and it was far far from pretty or peaceful. In his final days and hours, everything went wrong that could, it seemed.

To the point. It will be almost 2.5 years this week since his death.  I feel like I left one punishing, grueling marathon only to enter another.  Trying to be mentally well myself, trying to move through this if not past it, trying to forget the anger and suffering and not to succumb to the former myself, while being the sole parent and breadwinner...well, in this everyone knows the drill.  But the absolutely incredible exhaustion that I still feel after all this time is just another layer that I think former caregivers (and others) can understand. The grief is exhausting in itself, and it came when I had no resources left.  Rock bottom is above my head.

When I write this out, I am proud to be still standing.  I am trying to fake it 'til I make it IRL and to not eff up my child, who also is suffering.  I am proud and honoured to have been my DH's support and caregiver, to the very end - he died at home in this house in our room.  But holy hell, the days are just a grind (and yes, I have seen an MD etc.) and it is so hard to find joy or beauty and love for life again. 

And I KNOW other former caregivers will get it when I say that my baseline after all those years has changed:  while I have very little that is positive to say about my current life, no one is dying, the ones I love who remain are here.  And that itself is more than I can say about the year 2013.  My heart goes out to those who have continued to suffer losses after this loss. 

It is a marathon when I wish I could sprint.










TooSoon

  • Guest
Re: After the marathon...another marathon
« Reply #1 on: May 02, 2016, 07:49:35 AM »
Hi CG, It is a marathon.  My semester is drawing to a close at last and I'm realizing the degree to which I let things go - both with my house and myself  - just to get through it.  And I am bone tired.  Living in survival/panic mode for so long left me  - and still does - just waiting constantly, sometimes consciously, sometimes unconsciously, waiting for the other shoe to drop.  Also, I share with you the toll it takes to live with a person fundamentally altered by cancer, waking up day after day, month after month, not knowing which incarnation of a person you used to know you would find and the cost of all of the stories you never told anyone just to protect them and everyone else.  I'm no psychologist but there are consequences, it seems, to living that way for an extended period of time. 

One thing I've realized is the complete and total rebuild this is going to require.  Now that I've survived, it is time to start making choices.  But I haven't had a choice in anything for so long that it is almost paralyzing.  Big changes scare the living daylights out of me.  What if, what if? 

Mostly, I am just sending support and solidarity.  Be kind to yourself. 

canadiangirl

  • Member
  • Posts: 438
Re: After the marathon...another marathon
« Reply #2 on: May 02, 2016, 08:12:23 PM »
Thanks TS. It is amazing that it takes only one person really getting it to feel heard and understood.  I am so sorry you and your LH also lived through this torment (because that's what it was) but I am selfishly glad you exist, to bear a kind of testimony. 

I think you're absolutely right- a total rebuild would seem to be in order.  I wish I could even lay the cornerstone of that foundation!  I hope you find some time to relax soon, once the semester is at an end. Thanks again. 

Trying

  • Member
  • Posts: 1607
  • aka MissingmyTim
Re: After the marathon...another marathon
« Reply #3 on: May 02, 2016, 09:10:15 PM »
I was only a caregiver to my DH for 4 months and my heart goes out to those of you who lived that role for so much longer.  My husband, for the most part, was the best version of himself during his illness so I am grateful he didn't suffer longer because it obviously would have taken more of a toll over time.  Of course during his illness I was the only one to witness the darkest moments and it was my privilege to do that for him on top of the caregiving. I honestly am better suited to be a caregiver during a crisis than I am to be a single parent with the day in and day out challenges.  Most of the time I feel like I am treading water until the next crisis hits. 
You will forever be my always.

canadiangirl

  • Member
  • Posts: 438
Re: After the marathon...another marathon
« Reply #4 on: May 03, 2016, 07:37:42 AM »
Thanks, Trying.  <3   I too feel like I'm treading water.  I think it's left over from being in crisis/survival mode all the time.  From your posts I have the strong suspicion you are doing better than you think as a single parent.   Hugs.


canadiangirl

  • Member
  • Posts: 438
Re: After the marathon...another marathon
« Reply #5 on: May 03, 2016, 07:42:42 AM »
For those reading who have or have lived through a cancer diagnosis for themselves or others, my husband's cancer was in his face and I believe the radiation treatments on his head combined with a disfiguring surgery (he was so handsome and remained so to me post-surgery but he felt monstrous) and the steroids which made him rage were strong contributing factors to his personality change and personal torment.  It wasn't "just" depression, hopelessness and understandable anger post-terminal prognosis.  It was a perfect storm. 

TooSoon

  • Guest
Re: After the marathon...another marathon
« Reply #6 on: May 03, 2016, 08:10:26 AM »
It was a perfect storm.


Agreed, the perfect storm.  I have to tell you, your post brought me back to those memories that I've tried so hard to bury.  I tried to hide from everyone what it was like behind closed doors, living with a person fundamentally changed by (in our case) brain surgery and my god those fucking steroids!  One of the hardest things about it was that while he kind of knew the rages and mood swings and personality changes were happening, he most often forgot so it was like living in my own personal hell where I was the only one who knew it happened.  He was also a master public performer so in public he was putting on this amazing show - and it was amazing - that then crumbled at home when no one else was looking.  It was my job to cushion that and I did it because that is love and that is what a marriage is.  The part of his brain that they took out for some reason made him extremely "religious."  I put that in quotes because the way it manifested was really, really weird.  And he insisted on creating this public persona on Facebook, super-narcissistic and attention seeking and exhibitionist (he was always an attention seeker but the steroids pushed it off the charts).  I supported it though it made me sad and deeply uncomfortable.  If that's not a mind fuck, I don't know what is. 

As both you and Trying have said, it was my privilege to walk that path with him and in spite of it all, I loved him (the many hims) to the last.  But the cost was high.  It is not his fault or my fault and anger has not been one of the driving emotions for me since his death.  Still, there is a part of me that will never be the same again and that is a loss in itself.  The cost for me was a fundamental loss of my identity that shook me to my core.  I lived that cancer, almost like I had it too (or maybe all caregivers feel that way.  I'm certainly not diminishing his suffering in any way but I guess I'm saying that was my life. His cancer was the axis around which everything turned but at the same time there was no axis because I never knew what was coming next).  In some ways, I bore the psychological cost of keeping him alive for as long as possible because very often, psychologically, he was off somewhere no one else could join him but someone had to keep the ship afloat.  This may not make sense but none of it ever made any sense in the first place. 

I try to think about the good times.  And there were good times and he was a good man and an unparalleled father.  And I am thankful that my daughter will not remember the ugliest of it.  That is a gift.  Sending you so much support and love. 
« Last Edit: May 03, 2016, 08:55:13 AM by TooSoon »

Wheelerswife

  • Member
  • Posts: 1069
  • Widowed x 2.
Re: After the marathon...another marathon
« Reply #7 on: May 04, 2016, 06:29:47 PM »
I have read and re-read this post.  I've been in a more reflective mode recently, trying to understand much of my life, my subconscious motives, and where life is going for me.  I was a very long-term caregiver - 18 years worth - and voluntary at that.  But caregiving did take its toll on me physically, emotionally, spiritually.  There were times when I wished I could have a break from caregiving, but that never happened.  I don't think I liken that part of my life to a marathon, because a marathon, while very long, has an end point.  I think it was more like swimming in the ocean, far from any shore.  Some days, the ocean was calm, but I still had to keep swimming, or I would go under water. It may have been a leisurely swim, but it was swimming none-the-less.  Along the way, there were storms.  Some of them weren't too bad...a cold, or mild bronchitis, but the work of swimming was more tiring.  Toward the end of his life, I was caught in a couple of big hurricanes and almost didn't survive the big waves crashing over, but I persisted in swimming in the rough surf and I still didn't go under.  Then one day, it just wasn't possible to hold him up above the water with me.  He slipped under and I couldn't save him.  He was gone. 

In time, I was able to swim to an island and was relieved to find respite and I didn't need to keep swimming any more.  I decided to stay on the new island.  The people were friendly, the work was much lighter, and I found someone who understood me and had known a bit of swimming himself.  We started a new life together and we had fun and we traveled to other islands and basked in the sun of our new-found home together.  We remembered our days of swimming, but we lived our new life.  Then one day, a tsunami swept over our island and my new partner in life was swept away.  I was left in the ruins of our island, overcome with shock, left to pick up the pieces of my life again.  Not long after the tsunami, an earthquake hit my island and shook up my world even more.  Fortunately, I had friends who had less damage than I did and they carried me along for awhile.  Eventually, though, there isn't much choice but to clear the debris after a disaster hits.  It takes some people longer to begin and carry out this process, and for me, it has been a slow start.  I cleared out a little part of my island and plugged back into the electrical grid, and started clearing the bricks and sticks, and made a short path so I could get some provisions.  In time, I realized that I couldn't rebuild on this island, so I've been preparing to move to another for a fresh start.  I have been working to pull together the resources I need to move to a new island.  I have scouted out a lot of places, but none have felt like they were right.  I don't quite have all of my resources yet, but I will in less than a year, and I hope by then I can locate a new island that has the right kind of trees that I need to start building a new home.  The hard part is that it feels sometimes that I'm swimming again, caregiving, but now I have to take care of myself.  I hope the water isn't too deep and that the storms are not enormous.  I need energy for the swim, bright sunlight during the day for encouragement, and a starry moonlit sky at night to keep my bearings.

It has been a long swim.  It isn't over yet.  I need to build again, and then hope that there isn't another tsunami that wipes out what I've toiled to build.  In the meantime, I keep gathering my resources and sifting through the debris of my life, deciding what I will hold onto when I move to the next island.

Maureen
« Last Edit: May 11, 2016, 04:34:13 PM by Wheelerswife »
Life is short.  Love with all you've got. 

Barry 11/29/55-9/22/09       John  1/16/57-1/11/14

Empathy  Developer  Responsibility  Adaptability Connectedness

TooSoon

  • Guest
Re: After the marathon...another marathon
« Reply #8 on: May 05, 2016, 07:27:36 AM »
Maureen,

This thread has stuck with me, too, and made me think about a lot of things I'd pushed away because i could not make sense of them or find a place for them.  Though (as you know well) I tried very hard to fit the square peg of what my life is now into the round hole of what it was before (and I like the metaphor - now life has hard edges - the square, to before, the circle - when things seemed organic and soft.   Sorry, art historian), I have realized that is not possible.  What seemed like the 'right' thing to do did not work and now I see that a complete and total rebuild from the basement up is required.  And that's scary.  People used to use words like 'fierce' and 'fearless' to describe me.  That's what brain cancer stole from me.  It's funny. Fear was not in my vocabulary.  Scott and I both had pretty peripatetic, eccentric lives until we met - no fixed addresses in our 20s, no possessions, lots of travel and no money - and when we decided to get married and have a kid, we were just learning to accept what 'settling down' means.  And then?  As you say, the tsunami.  I've wanted to move for a very long time and I'm trying to make that happen now.  Is leaving my job the risk everyone says it is?  I don't think so anymore.  I think the bigger risk is staying put, ceaselessly striving for something (happiness? fulfillment? peace?) I know I cannot ever have if I stay here.  At this point, after three plus years, I can confidently say that it is not 'cut and run,' but a genuine realization deep down that that life is over.  I might move only 45 minutes away or I might move across the ocean but I know now that there has to be a brand new start, no matter how difficult and stressful that may turn out to be.  I have every confidence we'll all find our way but I was wrong about holding on to the remnants.  It has not worked, not at all.  xo

canadiangirl

  • Member
  • Posts: 438
Re: After the marathon...another marathon
« Reply #9 on: May 09, 2016, 02:42:55 AM »
I don't quite have all of my resources yet, but I will in less than a year, and I hope by then I can locate a new island that has the right kind of trees that I need to start building a new home.  The hard part is that it feels sometimes that I'm swimming again, caregiving, but now I have to take care of myself.  I hope the water isn't too deep and that the storms are not enormous.  I need energy for the swim, bright sunlight during the day for encouragement, and a starry moonlit sky at night to keep my bearings.

It has been a long swim.  It isn't over yet.  I need to build again, and then hope that there isn't another tsunami that wipes out what I've toiled to build.  In the meantime, I keep gathering my resources and sifted through the debris of my life, deciding what I will hold onto when I move to the next island.

This is just beautifully written and so apt. Thank you, Wheelerswife.  You inspire me. I hope you find safe harbour soon. 

Bunny

  • Member
  • Posts: 265
  • widowed 2012
Re: After the marathon...another marathon
« Reply #10 on: May 11, 2016, 12:28:00 PM »
As I write this with tears in my eyes, I know his cancer, the two years I spent as his caregiver, and his slow and painful death, have deeply scarred me. But I just can't go there on purpose. It only comes out in surprise bits and pieces (like right now) before I get it all safely stuffed back inside. But I am so grateful to read other's writing on the subject. In exactly one month it will be four years, so the re-living has been kicking into full gear as of late. Even when my brain tries to ignore/distract, my body knows what's coming and reminds me in various ways.
« Last Edit: May 11, 2016, 12:31:34 PM by Bunny »
It is a fearful thing to love what Death can touch.

BrokenHeart2

  • Member
  • Posts: 958
  • Widowed 2013
Re: After the marathon...another marathon
« Reply #11 on: May 27, 2016, 10:34:58 PM »
Oh Bunny thank you for putting my thoughts into words. In 2 days it will be the 3 yr sadiversary. CG you have so eloquently expressed the dire straits I've been feeling for too long and was not able to put into words! As for all my other pillows, I thank you!
Hugs
I don't want it to be his legacy that his death destroyed me.
I need to honour his life by rebuilding my life.