A Caregiver's Perspective

July 31, 2018

When my husband went into the hospital for an operation, I was up for the challenge of a three-month recovery.  Having raised four kids, I felt I had the skills needed.  But things didn’t go as planned and by operation number five, I was struggling.  Then he developed other health issues. By the ninth operation in year five, I was depressed. ‘In sickness and in health’ is what I signed up for as his wife, so I felt a huge responsibility. Every day was so busy I had no time for myself.   I had no idea I had a title, ‘Caregiver’. 

No one is born a caregiver. No individual becomes a family caregiver overnight.  It happens when someone you care about has health or age-related conditions. Caregiving is a role that one learns to play due to life circumstances. It’s a transition and a process of adjustment and re-adjustment. A caregiver goes through the stages of Engaging (accepting and mastering the responsibilities of the role), Negotiating (negotiation to define and redefine the role as the illness trajectory unfolds), and Settling (new normal is established).  These stages are not linear, but can move backwards or forwards depending on individual caregivers.  A caregiver may spend more time in one stage than another. Or, as I did, go through each stage again after every operation. The Stages of Caregiving pictures a journey that could be short or long, joyful or unpleasant, rewarding or exhausting, easy or complicated, but, like any other life journey, it changes your perspective.

One thing I learned, however: the better equipped one is for the journey, the easier the transition into the caregiving role. But, caregiving cannot be an individual journey; caregiving involves the triad of patient, caregiver, and health care professionals. Simply put, it takes a village to help a caregiver to give care! Caregivers need to educate themselves on their journey and providers need to meet them halfway by providing them with skills, knowledge, tools, and support.   

Usually, the caregiver is not aware of their title and responsibilities and as a result, has not thought about whether they are willing to do all, part or any of the activities required.  It doesn’t matter if you are changing wound dressings, dispensing medications, doing grocery shopping or even checking in on them from time to time.  All of it is giving care.  All of it takes away from your ‘normal’ life.

To reduce your stress, make a list of who you can call on to help you.  Your friends and family want to help but they are not sure what to do, so you need to be specific; eg. keep a grocery list handy, rotate friends/family to sit with the care recipient while you go to the movies or dinner, get a dog walker, etc.  When you are flying in an airplane, you are instructed to put your oxygen mask on first before helping others.  This is true for caregivers as well.  You can’t help your loved one if your battery is drained.  Figure out what will keep you on an even keel and enlist friends and family to help you.

Carole Ann Alloway is retired, a mother of four, grandmother of seven boys and caregiver for her husband for the past eight years.  Carole Ann works with The Change Foundation, Health Quality Ontario, Ministry of Health and is an international speaker raising awareness of caregiver issues and offering insights on engagement and co-design.

This is the first in a series of commentary articles giving a human perspective on the issues that the National Institute on Ageing addresses in its report Why Canada Needs to Better Care for Its Working Caregivers.

The National Institute on Ageing (NIA) is a university-based think tank focused on leading cross-disciplinary research, thought leadership, innovative solutions, policies, and products on ageing. The NIA’s mission is to help governments, health care systems, pension plans, businesses, and Canadian families to best meet the challenges and opportunities posed to ageing Canadians and by an ageing demographic. Follow us on Twitter and sign up for our mailing list.

Allan McKee