Monday, August 20, 2012

No Job Description- Caregiving Part 1: Search and Rescue

Harry Potter World, August 2011
Almost one year ago exactly, Jonny began a new battle with Trigeminal Neuralgia*(TN). One year on and 2 surgeries later, Jonny's pain is very much  under control.  From this positive vantage point I have now begun to reflect back on how we coped during  those frightening unpredictable first days and weeks. In particular I have been ruminating on how I learned the ropes of my new  job as caregiver, a job that like Jonny’s illness was thrust unceremoniously and without notice on     me.

Normally when you agree to take on a job, you have researched it, examined the job description, negotiated hours and pay, have some pre job training and /or bring your expertise to your new position. Hopefully  you also have colleagues, vacations, in service training and a salary which you hope reflects your years of experience, expertise and job performance and how much your employer wants you. Last year I found myself in a job with none of those things-the job of caregiving for my husband.

Harry Potter's Hogsmeade
We were in Florida for a week, taking our kids to Harry Potter World at Universal Studios and having our long looked forward to family vacation. On Jonny's birthday that week-August 17th 2011 he broke the news to me that his trigeminal neuralgia had returned. He had, unusually for him, kept this from me for two weeks. This meant he had been suffering in silence with harsh, electric, shock- like pain on the left side of his face since the beginning of August. 

Jonny says now, he was partly in denial and desperately hoping the pain would go away on its own. I had been wondering why this normally affable, unflappable, reliable guy had been quite the opposite- short tempered, unfocussed and unpredictable. When I finally asked him what on earth was going on - he murmured,

 " My pain is back and it's bad."

 I felt a shadow of dread wrap itself around my heart and a thousand things went through my head. But my first thoughts were practical: At least we knew  what this was, Jonny was on a baseline of the medication (Tegratol) that had worked before so we knew how to medicate him and we had a neurologist. We were in a much better place than we had been when the pain had first hit Jonny three years earlier (Oct 2008).Then we didn't have a diagnosis, never mind a way forward. This time we knew the first line of action was to double the medicine dosage and make an appointment to see the neurologist. We knew the medicine had taken time to kick in last time and although it had horrible side effects, it had worked. All this knowledge seemed empowering and reassuring last August. We had a plan that had worked before.

Trigeminal neuralgia had other plans. For 4 weeks the regularly increased medication chased but never caught up with the TN pain. The side effects by mid-September were beginning to ratchet up and TN was ahead of any battle plan we had. I sensed that the TN was going to force us on a different path and I needed to be with Jonny at each new twist and turn. I gave up my paying job and launched with no job description, training or other plan into the job of full time caregiver.

Suddenly we were plunged into a whole new world. If medication didn't work -surgery was the only option. We had to find a neurosurgeon who specialized in treating TN. Now my job was search and rescue -search for the right path, surgeon and surgery and rescue Jonny from the deep dark TN pain hole he was tumbling down. 

The first part was easier than the second. Thanks to the internet, and our geographical location- near the National Institutes of Health and John's Hopkins Hospital in Baltimore we had access to many doctor friends who, although they did not know much about TN and were learning with us, understood how to help us find the neurosurgeon who did. 

The rescue part was more challenging. The only thing that was certain, was that the TN was in control and we were not. Watching Jonny's pain increase and side effects take hold, meant I was losing my soul mate as I knew him. The advocating, problem solving, out of the box  positive thinker characteristics, needed to become a part of my job description instead of his..................

Next week in Part 2, I will describe how we coped as Jonny's Trigeminal Neuralgia pain escalated beyond any imaginable nightmare and how I failed to do all the things caregiver websites advise caregivers to do to take care of themselves!

Have a good week and take care of yourselves.


*Taken from The Johns Hopkins Website

"Trigeminal Neuralgia is an extremely painful condition usually involving one side of the face. It usually occurs spontaneously. It has a characteristic feeling of “shock-like” pain which travels through the face in a matter of seconds, but can occur in a repetitive fashion. Sometimes it is triggered by specific things ,mostly it starts and stops for no reason and an episode can last from minutes to hours at any one time.
The intensity of the pain is exceptional, and it is felt to be more severe than experiencing a heart attack, passing a kidney stone, or even having a baby. There is no other pain quite like this.

Trigeminal neuralgia can be very active for a time, and then seem to disappear, sometimes for long periods, but always recurs later, often with more intensity. We also know that the most commonly accepted theory of what causes trigeminal neuralgia is vascular compression. There are blood vessels that travel with the nerve, and if they cause pressure on the nerve or irritate it, pain can occur.
For more information  visit The Facial Pain Association website or Living With Trigeminal Neuralgia site They are excellent resources for anyone wanting to find out more about this horrendous condition.

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  1. I'm glad I'm reading this a year later when we all know the outcome. However, I was a bit shocked to read that Jonny's pain is very much under control. I thought after the operations he would have no pain. Is this a pain for life? I hope not.

    1. Yes I agree Rachel. I don't think knowing the ending spoils the story in this particular situation. The brain surgery certainly eliminated all Jonny's facial electrical pain, which was the worst symptom. Any residual pain, which unfortunately is often just part of having TN is being managed as needed very effectively with medication.
      Thanks for checking.

  2. An intriguing discussion is definitely worth comment.
    I do believe that you should publish more about this issue, it might not be a taboo matter but
    usually people do not discuss such issues. To the next!

    Also see my website - play2win

  3. Thanks for commenting. Now that we have some distance from the experience I feel strongly about raising awareness about Trigeminal Neuralgia and how it, like other serious illnesses affects everyone in its destructive path.

  4. Its hard to take care of yourself when you watch your love ones suffer.

    1. That's true, particularly if you are juggling the needs of the patient with the other family members without any other family hands on support.Thanks Corey.

  5. Gilly, I am so glad that you are writing this to let people know what it is like for a carer too. TN is bad, but watching someone you love suffer from it, is also bad.
    I am glad that your husband is doing better now and hope and pray that it continues for him.

    1. Thanks Liz. Yes I think this is a very important topic to explore. Part two has just gone up on the blog.I'd be interested to know what you think about it.