New Beginnings

October 12, 2018

Being a family caregiver is exhausting - physically, emotionally and spiritually.  This takes a toll, not only on the caregiver, but can also affect their relationship with the patient. Whether you’re a spouse, parent, child, sibling, cousin, or friend, you want to keep on good terms with the person you are caring for. But sometimes resentment can set in and it’s important to recognize when it does, so you can take action.

I remember coming home one day, struggling with a number of grocery bags and looking down the hall and there was my husband playing computer games - again.  My husband relied on me for everything - a glass of water, meals, getting outside, bathing, and getting to appointments, and he resented that dependence on me.  The more operations he had, the more he relied on me until I had to make all the decisions and answer all the questions.

Looking back, I’m disappointed that no health professional ever stepped back and looked at the big picture of what was happening to him, to me, to us. No one looked at the ‘whole person’ of the patient, the family caregiver, or our relationship.

I felt like I had to do it all and by myself, but I didn’t. People want to help but they don’t know how. To do it over, I would have asked for help. Sounds simple, but it’s not.  I come from the generation that expects you to take care of your own business.

The first step is to make a list of things that need to be done daily or weekly. Then ask family and friends who wants to do what. I wish I had gone away for an overnight once a month, gone to a movie, made time for friends. Caregivers need to be given these breaks.

Some family caregivers are managing a patient with dementia, or a brain injury, or mental illness. It is critical that we support these family caregivers, because their work seems endless.  Some family caregivers are young - some as young as six years old. They are trying to get themselves ready for school while dispensing medications or getting breakfast for an ill parent or sibling. There are teenage and young adult caregivers. They should be planning their future, but they are juggling school, work, caregiving and personal time. Our schools and businesses need to be aware of the invisible caregiver in each of their students and employees. The stress level is high and they need all the help they can get.

If the patient’s issue has resolved, the caregiver will need support transitioning out of their role such as, grief counselling, job training/search support, counselling on regaining their social life.  The caregiver may have given up their hobbies, friends and sometimes quit work or retired early. While they have made that choice, they may be at a loss on how to get back into the swing of things. Home care can play a key role in advising the caregiver on the different options available for them. They may not be ready for socializing and may need some space, but at some point, they will be ready to reclaim their old life.  Even if the patient recovers successfully, the caregiver has lost their ‘job’ and relationship counselling may be required. I’m glad I was able to care for my husband because I learned a lot about myself. As a result of our experience, I am an advocate for family caregivers. Every caregiver has a story, but the themes are the same.  Let’s work together to recognize and value family caregivers.

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.

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