The way of the ‘post-caregiver’
Caregiving deserves more acknowledgement than the occasional pat on the back or sympathy card
I’m calling myself a “post-caregiver” — though I know that’s a placeholder term.
For seven years, I was a caregiver to my elderly parents — three of those years full-time. This caregiving ended after both of my parents, each in their own turn, died in their home of almost 40 years. (Though I was the primary caregiver, I acknowledge that this effort was far from single-handed).
While I like that caregiving gets acknowledged and named in the term “post-caregiver,” there’s no honouring of that work in the word. Not like with “veteran,” which an etymological dictionary informs me connotes “experience” or “one who has seen long service in any office or position.”
There was a time during my caregiving when I actually looked on the post-caregivers I came into contact with as “veterans.” Knowing personally only one military veteran in my lifetime (an uncle I had infrequent contact with), I had a similar awe and respect for what these postcaregivers had faced and lived through.
Talking recently with a grief counsellor reminded me that a connection between these two types of veterans — caregivers and soldiers — isn’t entirely unfounded. She cited research done in the United Kingdom that shows that caregivers can suffer from Post Traumatic Stress Disorder, especially if they’ve watched a loved one suffer. While the battlefields that the caregiver/ soldier fight on may be night and day, the wounds that each share aren’t unrelated. Though caregivers likely won’t lose limbs because of their work, they can suffer from deep exhaustion, prolonged mental stress and emotional scarring, any of which can be disabling — a different type of life risk, so to speak.
I believe that not having a word for “post-caregiver” reflects our culture’s unawareness of the implications and effects of caregiving. It is currently almost invisible service.
While I was caregiving, this was certainly reflected for me in the dearth of services geared toward the caregiver. Medical, social, and health-related institutions and agencies had relatively little difficulty acknowledging through their services the one who was being cared for; rarely if ever did they acknowledge that there was someone else who was providing the care — someone who was all-too-frequently overworked, unacknowledged, and to varying degrees unsupported.
Even some of the caregiver supports that exist out there can err on the side of providing too much information to the caregiver about how to provide/navigate care for the loved one rather than to first acknowledge, tend to, and support the needs of the caregiver.
Why are services to the caregiver important? Because if you don’t have a reasonably cared-for caregiver, you can’t be in a position to reasonably care for someone else. And why should that matter?
Since we’re a bottom-line culture, let’s look at the cost savings to the system. At a time when I was touring long-term care facilities — to get a sense of what was out there, and to be open to that possibility for Mom and Dad — I was told from different institutions that keeping Mom and Dad at home was saving the government anywhere from $2,500 to $4,500/month.
Over the five and a half years that Dad remained at home (after his health had begun to deteriorate) and the seven years that Mom remained at home, that savings to the government translated into anywhere from $375,000 to $675,000. And that is just for one couple.
If caregivers are rarely acknowledged by services and agencies, post-caregivers appear to be absolutely nowhere on their map. There is simply little to no acknowledgement of them — that they even exist, never mind that they suffer posteffects to their caregiving that could benefit from support. As a friend recently pointed out to me, we as a culture have no problem acknowledging the need for rehab after an injury or trauma; why do we think that the effects of caregiving simply end after the loved one has died?
Are post-caregivers unacknowledged, because caregiving has been a role typically assumed by spouses? And because any costs associated with it have been absorbed privately rather than publicly?
Curiosity got the better of me, and I looked on the Veterans Affairs website. The intention behind this exercise was genuine interest: how does the government of Canada acknowledge that particular form of service, especially if one is transitioning away from military service? Apparently (judging from the website) through such offerings as career transition services, rehabilitation services, case management, career impact allowance, disability benefits, earnings loss benefit, and even transition to civilian life.
For four years, I had been able to work freelance and even be on-site at a contract for two of those years, while caregiving for my parents — until the time when they could no longer be left alone. With some combination of part-time and, eventually, full-time private help, my family navigated what became those three final years of my mom and dad’s life — though even with all these supports and the support of my out-of-town family as well as some respite services, caregiving was still a full-time job for me.
Did I willingly choose to serve in this role? Yes. That choice also meant choosing to live off my savings and making myself available for sporadic consulting work while being present — as best I could — to Mom and Dad’s aging. Did I know at that time what time Mom and Dad had left with us, their family? No. I could only make decisions in the moment, and make those decisions again and again at different points down the road.
Now that I’m on the other side (of the caregiving), would I have chosen differently? Would I have opted out of caregiving earlier on? No. Even if that choice now means facing different challenges, including reintegrating more meaningfully into the world of work after a significant hiatus.
Part of what has helped ease the transition for me is an inheritance, which more than replenished my depleted savings. Included in that inheritance was a gift from my siblings (which meant that I received essentially double of what they each received in the way of inheritance money) to acknowledge my caregiving. Part of that money has enabled me to travel (a gift I promised myself after my parents died) as well as to transition into my new life without feeling pressured or rushed. It has been a gift beyond price.
But what if I didn’t have that inheritance or my siblings? What if there had been debts to pay after my parents’ deaths beyond what the estate could have managed? What if to show for my years of caregiving, all I had in the end was my exhaustion, my invisibility, and a pile of pressing financial obligations with no means to meet them?
Caregiving deserves more acknowledgement than the occasional pat on the back or sympathy card, or the respectful whisper behind a person’s back. It deserves a communal even public acknowledgement of that service, including services to help post-caregivers transition from their old lives into new ones.
Perhaps the start of it all will be having a word or a name that truly acknowledges post-caregivers — that they exist, that they have legitimate issues, that they have served nobly, and that they deserve all the support they can get to help them get on with their lives.