Cascading Failures. Not just for breakfast anymore.

I’ve been trying to write something here for days — first I was all “Rehabellion, bitches!” and then I was all “oh, Rehaburgatory….” and then I was all “We are getting the fuck out of here and taking you home, mommy!” and now I’m all “Oh…nothing makes anything better.”

So.

We brought Mom home from the Rehabilitation Center on Wednesday afternoon.  On account of how on Wednesday morning she was all “these bitches are trying to kill me and I won’t survive another night here….” (she totally said “bitches”, y’all) and then she was all “no, I don’t want a drink of water and I’m not going to take a drink of anything until you get me out of here.”

So it seemed pretty clear that it was time to go ahead with the move home, even though Mom still has c.diff — a horrible and contagious infection that the rest of us would prefer not to get — oh, and none of the medical equipment had arrived yet.

C’est la vie — when Mom wants out, not much is going to stop her, regardless of her physical/mental condition.

It all came together around 4:00 p.m. Wednesday when the Hospice Nurse, the medical equipment (including the bed) and Mom all arrived within 15 minutes of one another.  I was a total mess, but Anna the Super Hospice Nurse had it all under control and Mom was safely tucked into her new hospital bed in 10 minutes flat. 

I was a little disappointed that Mom didn’t seem to notice how cute her room is — Sarah had moved a bunch of stuff out and decorated with Mom’s art and then I had run all over town and gotten cute bedding, etc.  just in time for her arrival.  But I figured she was just out of it from being doped up and then put on a stretcher and into an ambulance and driven all over town.

Turns out I was wrong.

The Hospice social worker who met with us at the Rehabilitation Center had said that many patients struggle in the Rehab Center because they want to be home where they can, I guess, die.

I completely rejected that thought, and decided that Mom needed to come home from the Rehab Center so she could rest and we could be in charge of her medications (no waiting on overburdened nurses who couldn’t hand out meds on time) and in no time she would be her perky, chatty (even if it is complete non-sense chatter) self.

Mom hasn’t “perked up” at all since coming home.  She rarely opens her eyes and is mostly non-responsive.  At the Rehab Center she kept her eyes closed, but listened closely to everyone’s conversations/the TV/the people next door.  Here she seems to be trying to listen sometimes, but isn’t nearly as interested.  When she does wake up, she always wants to know what time it is.

As hard as it is to say out loud, Mom is dying.

I thought that I was the least “in denial” person about Mom’s illness, but now that the proverbial shit has hit the fan, I may have been realistic intellectually, but emotionally I’m as “in denial” as pretty much everyone else.

It’s surreal.

Just a few weeks ago we were in Puerto Morelos and Mom was fatigued and a little goofy from the brain tumor, but she was able to walk, dress and feed herself.  She was able to sit on the beach next to me and enjoy watching the waves roll in.  And then everything changed in one instant!  One minute she was relaxing on her bed, then she tripped on her gauze gown while trying to get out of bed, landed on her hip and BUZZ – Game Over.

A fractured hip led to a midnight rescue flight out of Mexico, hip replacement surgery in Tampa and then the cascade starts — high blood pressure, low red blood cell count, blood transfusions, low potassium, UTI (from catheter), anti-biotics for fracture and UTI, severe constipation (dangerous because of her abdominal tumors), more pain meds (which cause constipation), increasing fatigue (as if that could get any worse), developing c.diff because of the anti-biotics used to prevent infection after surgery and the UTI infection, increased abdominal pain from c.diff., headaches (new symptom of brain tumors), increase in steroids to reduce brain swelling leads to further mental status changes (paranoia, anger), liver is further compromised and can’t handle all the drugs so blood albumin drops even lower, leading to more weakness and abdominal swelling, all the abdominal swelling makes it uncomfortable to eat, etc. etc.

Today Mom hasn’t eaten much of anything for over a week, she is taking in very few liquids, she has lost the ability to swallow so her meds are all liquid and she is asleep/semi-conscious 99% of the time.

Our family is gathering around her — my Aunt and Uncle arrived yesterday morning, then my sister-in-law and another cousin arrived late last night, my son and another cousin  flew all night last night and arrived this morning.  My brother arrives this afternoon.

This is not how I imagined “the end” with my Mom.  Maybe the real truth is that I hadn’t allowed myself to imagine “the end” at all.  Somehow I thought it would be less scary/sad and I would be more at peace with it.  When my Dad was dying, I was able to tell him that he should go, that I would be ok and so would everyone else.  And I hadn’t had any time to prepare for his death.  I’ve had SHITLOADS of time to prepare for Mom’s death and I still can’t find a way to go sit next to her, hold her sweet hand and tell her that it’s ok for her to go.  That I’m going to be alright and so is everyone else.  I’ve had all this time to be ready and I want to scream at the top of my lungs:

I’M NOT READY, DAMMIT!

It ain’t pretty, but it’s where I’m at right now.

Thanks for all your messages of support, it means a lot to me.  We also have a page on CaringBridge.com — http://www.caringbridge.org/visit/margueritebroyles where I post updates and people have written amazing things on the guestbook.  My Mom has touched a lot of people, including me.

xoxo

kim

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7 Comments

Filed under Cancer sucks., The Caregiver with the Dragon Tattoo, Uncategorized

7 responses to “Cascading Failures. Not just for breakfast anymore.

  1. I am so sorry, Kim. It’s so hard, I know. Your vivid, candid, heartfelt storytelling has brought back memories of so many end-of-life experiences I have had. I work with the elderly, and have provided music therapy for hospice patients in the past. I’ve also lost three women to cancer who were all, though not my actual mother, absolutely mother figures to me and pivotal women in my life. I still miss them all.

    Sending you love, and all the comfort you can stand.

  2. Sue T

    Have been wondering if this would be coming soon for you.
    My Mom had a similar quick decline after a hospitalization. I didn’t believe it was the last either, til it became obvious. This may be a universal response.
    Hospice is wonderful. How grateful I am for those helpers.
    I’m sending oh so many wishes and prayers for you and your mother and family members over the next days.
    Hard to believe, there will be blessings, even now.

  3. Nancy

    I have been following your story through your blog, Kim, and also am caught by surprise by the suddenness of the change, even though I’ve seen it happen before.

    Sending you love and hugs from someone you don’t know but who still cares about the person you have shown yourself to be in your amazingly honest blog posts.

    Nancy P.

  4. I’m so sorry, Kim. Hang in there. That’s all anyone can do in a situation like this. Sending you good thoughts and prayers.

  5. Mary Jordan

    Yes.
    It is surreal.
    Take a deep breath.
    Know you’re ok.
    Know Mom’s ok.
    It’s ok to let her go.

    Love you.

  6. We are never ready and pre-grieving is what I did in the year before losing my mother to cancer on July 4 2010. I feel for you and am glad you find some comfort in whatever we can all offer you, an ear, an outlet, just a place to share your thoughts and feelings. Share away, I say, whatever you need to do to take good care of you through this most emotional time for you and your family. Sending much love, light and positive thoughts to all of you 🙂

  7. Hey Kim

    Words…. are hard.

    I’m sending you love and comfort through the intensity. In whatever form it needs to take.

    Because I am totally NOT a basket-case right now I’m only slightly to quite terrified that my baby is going to die in childbirth (thanks Mind) and I’ve been meditating a bit on the notion that “we cannot die, unless we have lived”. She was HERE. Did you see that everyone? Did you NOTICE??!!??…. How brilliant, random, astonishing, wonderful…… How lucky we have been….

    Sending wishes that you can hold onto that truth too in the midst of the truth of your journey with her from here.

    (And, you were totally right about the damn gauze.)

    ………………

    What to say? I don’t know. Love+light+peace to you and your mom.

    xoxo

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