The toughest role during times of protracted health problems like terminal cancer is the role of care giver. Of that I am certain. But when I mention this to people not living the experience they always provide a response of disbelief. Or they give me a ‘isn’t that nice of you to say but I doubt it as I’ve seen what you are going through!’
And I shouldn’t judge their position as it is possibly a difficult concept to grasp when you see someone undergoing ongoing and difficult challenges.
But for some reason this is the case. No one fully understands the trauma, grief, stress and relentlessness that a care giver endures.
When I discuss this with others like me, be they living with Cancer, Parkinson’s or Alzheimer’s, etc., they all agree that the care giver has the toughest role in the partnership.
Every. One. Of. Them.
In Tracey’s case we often reminded of the firefighter in a firehouse scenario. As I keep finding myself in emergency situations she spends her days and nights on duty waiting for the sirens to go off. The process is relentless and even when I am in good stead she is always on standby waiting for the bells to ring so she can jump in the boots and go. Fortunately, like all awesome firefighters, she makes delicious nutritional meals while she is in-between the fights.
And as I’ve written before she has no sense of control. She can only wait for the alarm. And not having control of a situation is difficult for most people, and for Tracey, who is a planner and highly organized, it creates a real sense of stress and causes additional angst.
And don’t get me started on the weight being carried by a spouse of someone with terminal cancer. When I’m gone I’m gone, but it’s at this point the caregiver must march on with the emotionally charged functions of moving forward while carrying grief and the burden of raising their family alone.
I’ve spoken at length with my friend Sarah, also in the C-Suite, and we are brainstorming measures to find more support for caregivers as it seems the systems we’ve seen are presently lacking in depth and breadth.
I say all this while fully appreciating all the support our family has received from family, friends and neighbours. But I know the question everyone asks is ‘how’s Jim?’ I’ve spoken about this before and I will continue to remind everyone that both in the partnership are struggling while dealing with the challenge.
Oh and I decided to write this post as Tracey has finally taken a holiday. She just spent four days in New York with Amanda and is now on her way to Grand Cayman for a week with a gaggle of girlfriends. A well deserved respite from taking care of me for three years and I am super stoked she has taken the leap. There were many conversations, and even a moment of calling the travel agent to cancel the flights and hotels. Fortunately she didn’t cancel and is now on a much deserved break so she can focus on herself.
It’s like when you fly on an airplane, the flight attendant instructs you to put your oxygen mask on first, before helping others. An important metaphor to remind us that you will not be of any help if you cannot take care of yourself first.
And for those of you that have said ‘I could never leave Jim when he’s sick” or “I don’t know how you can do this while he’s back at home’, well you are the reason I have written this blog. Your judgement without understanding the role is not helpful. And while it’s said from a place of concern it’s also coming from a place of naiveté so when we hear it we both cringe, hold back our comments and move on.
This felt like a teachable moment.
Till you walk a mile in someone’s shoes….
Enjoy the sun my sweet, just remember to wear sunscreen, don’t drink too many umbrella drinks and get lots of sleep. ;-)