A Reflection from The Caregivers’ Living Room – Donna Thomson’s Blog

Sometimes, it may seem like professionals or other (more experienced) caregivers have all the answers. You might even believe that after taking Caregiving Essentials, you won’t question decisions you make on the fly with your loved one. But an important ‘Caregiving Essential’ is that our working conditions are unpredictable and uncertain. The health of a loved one may change from day to day and disease progresses differently for every person with a diagnosis. How do you feel about managing with uncertainty?

Recently I had a conversation with our family GP. “Why do you take all the complex patients?”, I asked. “You are amazing – I’ve heard you advocating on the phone for frail seniors who have no one else and when other GPs turned our family down because our son is too complex, you said YES.

Why do you say yes when other doctors say no?” He shrugged. “I’m OK with uncertainty, I guess.” I could have hugged him.

I’ve been thinking a lot about that short conversation and what it means to me. Of course I’m grateful for our wonderful family physician. I wonder if we shouldn’t be offering a course in embracing uncertainty to all prospective family doctors – and maybe to family caregivers, too. And I’m thinking about my own feelings about uncertainty. Am I OK with it?

To be honest, I hate it. In the driver’s seat is where I want to be and if others are driving, I want them to handle the wheel MY way. And that’s the crux. So I can understand those doctors who turned us down, I really can (even though I find it infuriating). It’s hard being OK with uncertainty. In caregiving, we want to be in control, yet so much of caregiving is uncontrollable. We believe that we can live our own life and the life of our loved one too. Any other approach feels dangerous and even possibly life threatening. Hasn’t every caregiver worried, “What will happen if I look away… if I become distracted?”

I’m not referring to urgent situations where taking total control is required – or when we must relinquish all of our control to an emergency health care team. I’m talking about long-term care, when care is given and received continually over months and years. I’m talking about the voice in the caregiver head that says, “this is the way the care must be done”. When others offer to help but perform care and homemaking duties differently, it feels unhelpful and for some, even intolerable. Because any other way destroys the illusion that life has changed from the way it used to be. Any other way is imperfect.

I am guilty. I admit it – I have suffered the anxiety of the perfectionist in the midst of my son’s and my Mom’s highly volatile health care needs. I have tried my best to morph the uncontrollable into something under my strict command. It didn’t work and I just made myself unhappy and resentful.

I learned the hard way that letting go of control and making peace with uncertainty is the key to feeling relaxed and even happy most of the time.

There are various names for this trick of the mind; some call it ‘giving it to God’, while others might say they ‘live only in the moment’. Putting out the welcome mat for uncertainty doesn’t mean giving up on excellence in caregiving. But it does mean that excellence in caregiving doesn’t necessarily lead to excellent outcomes in your loved one’s health. Accepting that random and unknown elements can factor into how things happen in life is the key for me.

So, I still make meticulous plans and I still watch my loved ones very, very carefully. But I know that whatever course of action I think is best may turn out to be wrong – I accept that I cannot know the future. I know that I do my best and that my best is good enough. My shoulders are down and I can smile, confident that I am imperfect.

Interested in catching up on Donna’s blog? Please visit A Reflection from The Caregivers’ Living Room – Donna Thomson’s Blog.

For further information on how we can support you, please visit our Caregiving Essentials program and our newest course Infection Prevention and Control of Caregivers and Families.