If you want to witness the rapid collapse of a team, take me and my husband geocaching. Years ago, when my father was bitten by the geocaching bug, Len and I decided to try it on our own. I downloaded a slew of caches to our Garmin and off we went. Armed with tweezers for the micro caches, an assortment of doo-dads for cache swaps, and a pen to log our finds we headed out into a bright summer day to explore some local neighbourhoods and enjoy each other’s company.
Zero enjoyment, people. Our beautiful afternoon quickly devolved into a nasty little spat and we quickly realized that if we didn’t stop soon, geocaching would effortlessly topple our marriage. Extreme? Probably. True? Yes, ma’am. No more geocaching without Dr. Phil in tow.
We have always been a solid team, Len and I. We work very well together, and our individual strength complement each other quite beautifully. Apart from geocaching or the first ten minutes of trying to erect our tent while camping, we typically get things done quickly and efficiently.
When we first got married, we assumed those household tasks that suited us well. Len managed the finances, the gardening and landscaping, the repair of broken things. I took on the meal-planning, grocery shopping, and the lion’s share of the cleaning (not without a large helping of complaining). Dishes, cooking and laundry were often shared. There was a very manageable, amicable distribution of duties.
Enter chronic pain and chronic illness.
There is a danger early on in spousal caregiving to take on the whole world. We eagerly shoulder those tasks that our spouse used to do, and initially, it feels manageable. Easy, even. We’ve got this, and by golly, we will git ‘er dun.
In temporary bouts of caregiving where care of the spouse is short term, it is possible to pick up the slack for a small amount of time, until the team equilibrium is restored and life carries on.
In long term, permanent, even progressive situations, where the health of your loved one continues to deteriorate, you will eventually need to say the following words: my team is no longer intact.
I’m not taking a low shot at the suffering. Those who are experiencing chronic pain or illness aren’t opting out of the team. Take a moment to sit with Len, and one of the first things he will tell you is his permanent frustration with not being able to do more. He’s not swinging in an easy chair enjoying a carefree life. His health is his full time job, and it’s the job he never applied or interviewed for. It was assigned, and he’s doing his best.
Our team is not intact.
Confession: the admission is awful. It slices through me. This was not the plan. I married an active, hard-working man. He loved rollerblading, golf and tennis. We did a running clinic together. We hiked some pretty rugged sections of the Bruce Trail together, and he made sure I didn’t fall off a cliff and die. He worked hard at work and at home.
Our team is not intact.
There are days when his productivity astounds me. I’ll return home from work and find that his frustration has reached a point where he needs to do something. He falls asleep with a satisfied smile on his face; his body struggles for days to recover from the exertion. There are days (weeks, in some seasons) where his body won’t allow him to do much more than the basic expressions of living: try to sleep, try to eat, try to be present, try to find joy.
This wasn’t the plan, but our team is not intact. He knows it. I know it. This wasn’t the plan.
There is grief here, to be sure. We long for what we once had, before the progression of his neurofibromatosis chipped away at his energy and health. I long to see him satisfied and fulfilled by what he is able to accomplish in a day. Watching him struggle with his deep desire to be back in the work force is an endless sorrow.
If you are reading this, realizing quietly and with sadness that your team is not intact, I am sorry. You are not alone. I understand the responsibilities that you have taken on. I am well aware of the burden you carry as you try to maintain a home, a job, a spouse and possibly children without the helping hand your spouse was once able to be for you. I get it, friend. I do.
I know that you look wistfully at the lives of others and wonder how they have the energy for all the things they seem to do. I know there are days when you wake exhausted, and barely have the energy to do the basic tasks, let alone tackle the endless to-do list. I know that you long for the simplest additions to your life that you once took for granted… a Sunday hike, an evening with friends, a getaway down south to palm trees and coconuts.
I could write more on this (and I will) but for now, the admission is enough. Let it sink in, overflow and hurt for a bit. Next week we’ll take some practical steps towards easing the load.
You are loved.
And you are not alone.