Falling into caregiving is a particularly apt descriptor for anyone whose spouse has suffered a stroke or received a cancer diagnosis. The day of a loved one’s serious head injury is the marker for a family life before and after caregiving.
A catastrophic event or diagnosis catapults a caregiver into another land – a territory that’s poorly lit and offers no familiar landmarks. The rads in this new world are all one-way – towards a new normal. There’s no going back.
Fear, confusion, self-doubt and almost unendurable worry swirl to make the first days of sudden caregiving a blur. At this stage, it’s difficult to retain information or make important decisions. A future that was once so sure and carefully planned is suddenly random, chaotic and completely unknowable.
There are a few basic truths that reveal themselves in almost every story of sudden-onset caregiving. The first is that love remains intact. Looking into the eyes of your loved one and touching her hand is the beginning of your common resolve to harness love as your fuel for building a new kind of future together. The power of love can’t be underestimated in healing the hearts and minds of families. It’s the single most important ingredient in locating the path forward and the strength to walk it.
The second truth is that in caregiving, time slows. As matters of the ‘before’ life cease to be important, a sensation of powerlessness will likely invade the caregiver psyche. Stop and breath deeply. Stopping and observing are powerful actions for caregivers to take, especially in times of great anxiety.
Survivors of automobile accidents often describe the sensation of time slowing down when recounting their experience of a catastrophic and life-changing event. This is a deeply human response to extreme fear and anxiety, and it’s a helpful one for caregivers. Slowing down and observing your loved one, your surroundings, your self and others around you can help create a sense of calm and control.
A new caregiver will have many questions. But a few are vital to ask in the early days.
- Can I do this alone?
- Who will help me?
Identifying one friend or key ally who will promise to make personal support a priority will be a big first step toward positive action and healing in the caregiving family. Building a co-ordinated team of support will come later, but for now, securing a commitment of abiding friendship from a single support person is enough.
“Live in the moment, minute by minute and day by day,” may sound like a new-age and rather trite adage. But for caregivers who find themselves newly minted in the first days post-diagnosis of their loved one, this is a viable mantra.
Take it slowly and look at your loved one. Look into their eyes and look at their hands. Strength for the long road is in the immediate and in the bond between caregiver and loved one.
That bond is where everything begins.
Donna Thomson is a caregiver, author and activist. She wrote The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (2014) and blogs at The Caregivers’ Living Room (www.donnathomson.com). She is a board director of the Kids Brain Health Network and advises from a family perspective on numerous health research projects. She also teaches families how to advocate for care at The Advocacy School and The Caregiver Network. She writes Caring Connections with Vickie Cammack, a social innovator who has established ground-breaking organizations dedicated to strengthening community and addressing isolation, including Tyze Personal Networks, Planned Lifetime Advocacy Network (PLAN) and the Family Support Institute of British Columbia. Cammack’s unique response to the isolation and loneliness that underpins some of our most intractable social problems – a network model of care – has been adopted internationally. She is a member of the Order of Canada.
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