Contingency Plan

con·tin·gen·cy plan (/kənˈtinjən(t)sē plan/)

noun: a plan designed to take a possible future event or circumstance into account.

It has been written that caregiving is not for the faint of heart. The truth is that life happens regardless of your perceived resilience, strength or willingness to do so. After I got over the notion that Meredith was our sole responsibility and therefore, we would have to do everything ourselves, we learned that there was support and that it was crucial that we engage in that support. As a result, we have been very blessed with incredible helpers over the last two decades.

We know that we would have never been capable of caring for Meredith at home without the team of professionals, physicians, nurses, personal support workers, and private family relief workers guiding and supporting us through close calls, surgeries, seizures, sleepless nights, trying days, and harrowing moments.

Recently, we have had to evaluate the toll on our well being when we are short staffed. Cancellations, particularly for the night watch, can leave us grappling and having to function with little to no sleep. This means driving 100km to work on limited sleep or having to carry on with the day ahead running on fumes. I have found that I am far less able to cope with these sudden change of plans than I was in my 30’s.

During a recent conversation with a new care coordinator, I was left speechless when she innocently asked me what our “contingency plan” was. After a long, uncomfortable pause, I blurted out, “Us. We are the contingency plan.” Meredith’s care is such that we cannot call in family members or nurses or PSW’s on a whim to take over when those who have received extensive training caring for Meredith have to bail. Her question was really about, what can we do to mitigate the impact of staff shortages. What can be the back up plan. And it was in that moment that I was reminded, yet again, that this level of care is in its own category of extreme caregiving.

Over the years, we have had countless people offer to help assuming that the professionals who work in our home are essentially glorified babysitters. I recently spoke with someone who “understood” our situation as they have a child with “special needs” (Gawd, I abhor this label!) however once I explained what a simple night shift entails, they quickly backpedalled and recognized that our parenting experiences are vastly different.

Last week’s troubleshooting led to a frank discussion on the reality that sometimes, there just isn’t a cut and dry contingency plan. Another care coordinator admitted that she is kept awake at night trying to figure out what would happen if by some stroke of bad luck, Tim and I were to succumb to death simultaneously. Statistically, there is low probability for two parents to die together but for the sake of this discussion, what would happen to Meredith in that rare case? With the precursor of: “Not to scare you but……”, she went on to bluntly inform me that there really wasn’t anywhere Meredith could go to be cared for due to her extensive fragility and care required. The best and only place, really, for her is at home with us and within the circle of care we have curated over the last many years.

When we reflect on our lives and feel as though we have adapted and adjusted to the intensity of it all, it is this stark reality that takes our breath away. It also reignites a fire under our arses to examine where we fall short and what we need to do to ensure our ability (barring any uncontrollable circumstances) to be in shape physically and mentally to carry on in this marathon of caregiving. Above everything else in our lives is Meredith. Since her birth, our very existence has revolved around her, and her needs and happiness. It is our responsibility to do whatever it takes to stay well so that we can be here for her for the long term. Truth be known, there is tremendous pressure in that and with it comes a background hum of fear that whispers, “What if…..?”

And so we do what we have always done: we do not get too far ahead of ourselves, we plan as much as we can and make adjustments based on anticipated challenges and finally, we focus on those things we can control to increase the odds of being healthy in all ways for as long as we have Meredith in our care.