Specific Situations > Extreme Caregiving

After the marathon...another marathon

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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.

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. 

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. 

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. 

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.


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