Understanding The Hard Realities of Becoming A Full-Time Caregiver

For caregivers, especially caregivers suddenly and unexpectedly thrown into this role of a lifetime, there is a very simple and very difficult answer to the question, “Where do I start?”

With yourself.

As you focus on taking care of the person you love, it’s easy to lose focus on yourself. “It becomes a habit. Before you know it, everything you talk about is caregiving,” says Debbie Cameron-Laninga, acting executive director with Caregivers Alberta in Edmonton.

Pat Ross Woodford understands first-hand how the world can become so much smaller when caring for someone. Her husband was diagnosed in 2016 with Clostridium difficile, more commonly called C. difficile, an often debilitating infection in the colon that causes fever, diarrhea and abdominal pain.

“After six weeks Harry was able to come home. But he was weak and his mobility was restricted. Suddenly I was a full-time caregiver,” says Ross Woodford, a retired business owner now living in Halifax.

“It changes your whole life, Everything you do revolves around the person you’re looking after.”

Those changes are substantial and often unrelenting. Ross Woodford’s day starts and ends with attending to her husband’s needs: helping the 250-pound man get dressed and undressed, preparing his meals, coordinating his appointments, leading him through chair exercises to improve his strength, and endless loads of laundry.

Her day also includes heart-warming and heart-breaking moments. “You grieve for the person you love and for the life you lost,” says Ross Woodford. “You also celebrate every little step forward. You are immensely grateful for even the smallest things.”

It’s essential to get off the roller-coaster ride that caregiving can become before your health and happiness are jeopardized. Ask for assistance, says Cameron-Laninga. “Caregiving is not a one-person job. It really is a team activity.”

And find time for yourself, for moments of bliss and independence. Ross Woodford goes to yoga twice a week. “It’s my escape,” she says.

“I walk into the studio and I leave everything behind for 60 minutes. Those 60 minutes are my salvation.”

She also makes time to visit with her sister, who lives only a few minutes’ drive away. They talk about the weather and Donald Trump’s latest controversy. They have a hot cup of tea, a slice of cheesecake and plenty of loving licks from Ludwig, her sister’s Maltipoo. It’s about more than whiling away a few hours, says Ross Woodford. “It’s about valuing yourself.”

With your loved one.

As a caregiver, you will be thrust into a new world. It has its own language (medical terms and government-speak) and its own timeline (appointments, homecare visits). While the demands are intense, at times overwhelming, caregiving at its most rewarding requires bringing some control to your life – and finding some joy. “[Caregiving] can be a gift,” says Cameron-Laninga. “You can be part of something bigger. You can have special one-on-one moments. You can contribute to the family.”

Those gifts are often small and unexpected, notes Dianne Crowell, who has spent her career working with older adults. The Lunenburg, NS, resident was also a caregiver to her mother before she entered a nursing home and continues to care for her, although in different ways. Crowell remembers the first time she took her mom out for the day after she entered the nursing home. The plan was to go holiday shopping and have lunch. When she asked her mother what she wanted to do, her mother said, “Go to the grocery store.”

“She loved to cook,” says Crowell. “She wanted to see the food. You don’t get to see the food in a nursing home.”

And so they went to the grocery store, and it was, says Crowell, one of the best times she and her mother have ever spent together.

Photo by Glenn Carstens-Peters on Unsplash

Plan for the unexpected

There are steps you can take to make caregiving easier. It starts by having what can be difficult but important discussions for you and your family. Nova Scotia community worker Dianne Crowell recommends spelling out how you, your spouse and your family will be cared for in the event of illness. That forward thinking, she stresses, should include how the caregiver will be looked after. “Try to be proactive and have a plan in place.”

Doing as much as possible in advance also includes paperwork. Having a will is important. You should also prepare a medical or personal care directive that can include specific information about healthcare decisions and who will make these for you if you are unable.

For more info

There are numerous resources and organizations that can lend a helping hand and some expert insight.

TCN, The Caregiver Network, is Canada’s largest online learning network for family caregivers. It hosts free events led by experts who share current information and respond to questions from participants. The goal: to help caregivers better navigate the care journey.

You may want to reach out to one of the four caregivers’ associations in Canada: Family Caregivers of British Columbia, Caregivers Alberta, Ontario Caregiver Coalition and Caregivers Nova Scotia. Although events are usually province-specific, the organizations offer resources that will benefit any caregiver. For example, Family Caregivers of British Columbia produces a free quarterly newsletter. The most recent edition offers tips on getting a good night’s sleep, explores the impact of telemedicine on caregivers and features a caregiver stress test.

Hats off and a heartfelt thanks

The first Tuesday of every April is National Family Caregiver Day, an important opportunity to acknowledge and celebrate the invaluable work done by family caregivers, while spotlighting the significant challenges they can face.