In today’s installment from The Caregiver Series, Sally talks about those first moments and days after her husband had a massive stroke and her transition from wife to “enraged caregiver” and fierce advocate.

The Death of a Brain – A Guest Post by Sally

I had never been around a person who had had a stroke. The entire experience was like being in the Twilight zone.

I can remember putting my husband in the car. He is just a bit over six feet tall and I am nearly a foot shorter, so I still do not know how I picked him up or got him into the car. I took him to the local hospital where he had once worked as a urologist. Just after we arrived, I heard a physician laughing and saying, “Too bad it isn’t a kidney stone,” in reference to my husband’s former career. How could any trained medical person be so cruel?

At that moment, my feelings changed and I went from being a wife to an enraged caregiver.

Calling our children was one of the most difficult things I have ever done. Yet, without them I could not have survived. I owe them and my faith in God for any sanity I have now.

Then and now, prayer gets me through the challenges. My father taught me that people do not need to talk about God as much as the need to act in God’s teachings. I figured that if I could take care of my husband and act in God’s teachings, then I would be okay. So, this became my prayer. I needed strength and wisdom and patience and understanding and a list so long that it was never-ending.

As the day progressed and his situation became clearer to us, we realized he needed to be in a larger hospital.

Our rock-of-a-neice, Jane, was the angel we needed.  A nurse, she can move mountains when the people she loves need her. She was our first advocate and soon we were transferred to Vanderbilt thanks to her determination.

I realize now how lucky my husband was to have had relationships within the hospital. I cannot imagine what this experience would have been like if we were lacking knowledge or connections in the medical field.

Every patient needs fierce advocates.

It is so important to have someone who knows the patient’s health history and medications. One of the first things I did when we got settled into Vanderbilt was to get a notebook where I could keep track of everything. Even four years later, I still write everything down.  Every change in him, every medication, every weird thing he does – I write it all down.

(Heaven help the doctor who asks me how he’s doing!)

When someone has a life-threatening disease you watch them either die or get better, but a stroke’s a little different. You watch part of them die.  With a lot of hard work and rehabilitation, they may achieve a new level of functioning.
Even still, being witness to the death of a brain is one of the saddest things that can happen to a person.
My husband was a very intelligent man. He was an honors graduate from medical school, a surgeon no less, and here he was unable to talk, walk, sit up or control his bodily functions.
So, although I didn’t realize it at the time, I had a choice. I could either hire someone to care for him or jump in and learn how to do it myself.
I jumped in.
For the first time in my life I was completely in control of myself and this very helpless adult. He had taken care of all our finances and important things while I lived in my fairytale world of an allowance.  If I messed up, he was always there to bail me out.
But here we were, and it was up to me to take charge.
* * * * * * *
If you’ve served as an advocate for someone going through a healthcare crisis, what did you learn about the healthcare system?  About life?  Love?

4 Responses to “The Caregiver Series : The Death of a Brain”

  1. on 19 Nov 2012 at 9:50 amEvie Carroll

    Very moving and touching.

  2. on 19 Nov 2012 at 9:52 amMary Fisher

    As always, Sally’s article is so touching. I look forward to Mondays to read each entry.

  3. on 19 Nov 2012 at 10:09 amhot Nai Nai

    I hope that everyone that reads this will take some time this week to make sure they know everything about their family finances. Know where all the papers are , the key to the lockbox, your wills, and any other important papers.
    Next I would ask you to make a list of all your medications and make sure someone knows where to find it.
    And third if you do not have disability ins. PLEASE go get it.

  4. on 19 Nov 2012 at 2:51 pmKathy

    Thanks for sharing your story. It’s so true about each patient needing fierce advocates. I have a younger brother with special needs so I grew up watching my mom take care of him (in addition to her other 3 children). Navigating doctors and therapists and insurance and schools was a full time job. I am so thankful she was such a fierce advocate for him but it was certainly frustrating and confusing at times. My brother’s disability was from birth so we knew no different, I can’t imagine watching your husband go through this. I think it speaks volumes that you jumped in to be his caregiver, it’s such a selfless and hard job. I love how you see it as acting in God’s teachings, your actions definitely speak of God’s love louder than any words can!

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