Compassionate Caregiving


An important role that sometimes lacks proper support

by Peggy Edwards

My mother died 10 years ago at age 87. This Mother’s Day, I will think about how I still miss her, but mostly I will recall with tenderness and joy how she loved, influenced, and cared for me. And I will remember when my siblings and I took on gradually increasing caregiver roles in the last seven years of her life.

In 1970, the average Canadian woman became a mother at age 24. Her mother’s life expectancy (at age 65) was 82 years of age. By 2012, Canadian women could expect to live to 87 and the average age for first births was 30 and older.

These two trends—living longer and delaying the age of procreation—means caregivers of older loved ones are increasingly older themselves. Boomer women and men in their 50s, 60s and 70s find themselves pro- viding assistance and support (informal care) for older parents, spouses, other family members and friends.

The “average” mother of a boomer is now 85 years old. Most likely she is widowed and lives alone. She has some kind of health or mobility challenge and a 50-50 chance of having dementia. If she’s comparatively healthy, she’ll probably live for three to 10 more years. Once she cannot live on her own, she will require a supportive or assisted living facility,which will cost between $20,000 and $60,000 a year (nursing homes cost more).

The term “informal caregiving” is used by Stats Canada and literature on aging to distinguish between paid caregivers and those who provide “free” care to loved ones. Some of us dislike this term. Helping your

father shower and organizing complicated care with parents who are ill is anything but casual or informal. Nor is it free. One survey reports typical caregivers spend $5,500 a year out-of-pocket to assist a family member.A 2009 study estimated if governments had to pay for caregiving provided free by those age 45 and over in Canada, it would cost about $25 billion. Caregivers who are still employed typically suffer a significant loss of income and career progression due to the need to reduce their number of work hours to keep up with caregiving tasks.

Informal caregiving can include a wide array of ac- tivities, varying in levels of intensity and degrees of physical and emotional demands. It takes many forms—including occasional help with household jobs and driving to appointments, overseeing care in a facility, or full-time care of someone who is ill and/or dying at home.

My friend Sandy looks after her 101-year-old mother in the home they share. David cares at home for his wife who suffers from a heart condition and painful arthritis. While David and Sandy both have help, they are on duty 24-7. Margaret oversees her 99-year-old mother’s care in a retirement home located two hours away. Her husband has managed her mother’s finances for many years, ensuring through sound investments that she is able to live in a good retirement home, despite her limited income and lack of pension. Susan visits her 90-year-old mother four times a week at a nursing home and manages medical crises because her mother is frail and prone to falling. Liz and her husband have arranged for home help for her parents who live in another city, and visit at least once a month.They are always on “emergency call” duty and limit their own travel in case they are urgently needed. Recently, a team of six women cooperated with a palliative care team and set up a schedule so that a caregiver would always be with their friend, who had terminal cancer and wished to die at home.

Informal caregiving can be rewarding and joyful, but the demands, decisions and emotions can also be overwhelming.While nine in 10 caregivers (age 15- plus) feel providing care is rewarding, feelings of not being able to cope and negative health consequences for the caregiver are magnified with the intensity and amount of time involved. When caregivers spent 20 or more hours per week on caregiving tasks, 20 per cent reported their physical and emotional health suffered. Common complaints associated with caregiving responsibilities include feeling anxious and worried, over-tired, short-tempered or irritable and overwhelmed, and having a disturbed sleep. Older caregivers may experience other serious health problems because they do not have the time to properly manage their own health conditions (such as diabetes or high blood pressure).

Mary says the hardest thing about caring for older parents is the overwhelming tendency to feel guilty. “I am constantly asking myself:Am I doing enough? Am I making the right decisions? It is worse for my sister who lives in the U.S.? She feels guilty that she is not here and that her siblings necessarily take on the bulk of the caregiving tasks.”

Mary and her sister have talked this through and have agreed on how her sister will contribute to her mother’s care. “This is important,” says Mary, “because there is real potential for lingering sibling upsets if you feel resentful, and keep it inside.”

In my parents older years, my sister and I helped with housework, shopping, cooking, driving to appointments and social events. I brought dinner and enjoyed a few hours talking with them three times a week, and we all made sure to include them in outings and family gatherings.After my father died, we packed up and sold their home (as per my mother’s wishes) and carried out a thorough search for the best retirement home for Mom, who had early signs of dementia. She happily settled into a residence just a few blocks away from where I was living.

My brother took on their financial and legal affairs. This took patience and sensitivity as my father first felt resentment. He eventually decided it was best to turn over this responsibility to his son. My brother was following the advice of experts who assert that the worst thing one can do is to try to reverse roles and “parent one’s parents.”

No matter what age, a parent is still a parent. As people grow older, they still deserve respect, dignity, and independent or collaborative decision-making when possible. If faced with an adult child who says you must hand over your finances, wouldn’t you feel resentful, demeaned, and maybe even angry? If a par- ent or other loved one is emotionally or cognitively incapable of making decisions, you may have to step in. But that is much less common than many impatient adult children believe.

Looking back, I can now see the difference between the wonderful relationship my mother built with me and the caregiving tasks she so competently and lovingly carried out. As we help to care for our aging mothers and fathers, let’s celebrate and nurture our relationships. Let’s acknowledge the stresses and challenges of caregiving. It is real, essential work, with economic value. Let’s support each other and press for social policies that help make caregiving the meaningful and positive job it is meant to be.

Peggy Edwards is a well-known writer and speaker on aging and health and is the co-author of The Healthy Boomer: A No Nonsense Midlife Health Guide for Women and Men.

Post script

This just out! Approximately 747,000 Canadians are living with Alzheimer’s disease and other dementias,and almost 500,000 Canadians provide care to family or friends with dementia. Caregivers provide an average of 74 hours per week caring for loved ones.To acknowledge this, Employment and Social Development Canada has launched a video series regarding dementia and the significant role of caregivers. Learn more at www.seniors.gc.ca.