My mother started showing signs of early-onset Alzheimer’s about four years ago, when I was 19 years old, several years before I arrived in Oxford on a Rhodes scholarship.
We didn’t realize this at the time, but her disease would accelerate very quickly. In three years, she progressed from early retirement to a secure dementia ward in a long-term care facility. Everyday is different for her: some days she recoils when my father and I visit her, not recognizing either of us; other days she is lucid and engaged and our conversations flow with ease.
One afternoon, we signed my mother out of long-term care to pick up ice cream sundaes. She leaned over her cherry sundae and looked at me intently, her eyes clear. Her voice lowered, as if she was sharing a secret or sudden realization. “Maybe her brain was falling apart!” she whispered, hoping I would understand.
By then, she had progressed to the later stages of Alzheimer’s and often spoke about ambiguous, imagined characters, telling stories without any context. On this particular day, she was especially disheveled; the geriatric nurses at the dementia ward had been struggling to bathe her for weeks and her hair was matted and greasy. It was a rare moment of insight into my mother’s brain and her brief moments of clarity. I realized she was talking about herself.
Helping with my mother’s Alzheimer’s care has been one of the most profound experiences of my life. It has made me more humble, more compassionate and deeply grateful for Canada’s social safety net and the security it provides families when they experience unexpected and expensive diagnoses like Alzheimer’s.
It also changed my notion of work-life balance before I had even started my career. There are countless young women like me who are forced to balance a different type of ‘care’—caring for our parents rather than our own children.
For my mother, the type of care she needs is different everyday. Since her Alzheimer’s diagnosis, she has lost the ability to drive, cook, dress and feed herself. She has lost the ability to take her own medications, manage her own finances, leave our family home unaccompanied and communicate with those around her. Although I am the youngest sibling with three older brothers, I often shouldered these responsibilities, barely an adult myself.
Eventually, our family couldn’t care for her alone. We needed help from recreation therapists, support workers, geriatric nurses and the safety of a secure and supportive care facility. Despite such a transition, our family’s role in her care never stops. We still make frequent visits, help develop care plans and manage her daily needs with their assistance.
Alzheimer’s is a feminized disease in two ways: (1) women are more likely to receive an Alzheimer’s diagnosis; and (2) Alzheimer’s care relies on feminized labour, both informally in families and formally in care institutions. Across the spectrum, from patient to caregiver, Alzheimer’s is largely a women’s disease.
In Canada, 3 in 4 Alzheimer’s patients are women. Women with Alzheimer’s are disproportionately represented in the long-term care system, since their (typically male) partners are often less equipped to assume caregiving roles. Surprisingly, women in their 60s – like my mother – are twice as likely to develop Alzheimer’s disease as they are breast cancer.
Women are often socialized to be at the centre of caregiving—both as informal caregivers to their spouses and family members and in their professional lives. The majority of informal caregivers are women, many of whom are required to work fewer hours, take leaves of absence from their employers and lose job benefits or collect reduced pensions. In care institutions, women are dramatically overrepresented in the caring professions that support Alzheimer’s patients, such as nursing and recreation therapy.
As a result, one of the most significant feminist issues in the coming decade will be whether young women like me, in an increasingly younger sandwich generation, will be well equipped to take care of our mothers. Diseases like Alzheimer’s are an intergenerational feminist issue, too: they change relationships between mothers and daughters and perpetuate gendered family roles by relying on daughters as primary family caregivers.
So, where does that leave young women like me and how do we find a new iteration of work-life balance?
A fellow Rhodes scholar, Christie Hunter Arscott (Bermuda & Lincoln 2007), discussed this issue in a recent blog post on the importance of “judgment free flexibility” in the workplace, regardless of marital or parental status. Flexible workplace arrangements are often created with parents in mind, rather than other types of care obligations.
The feminization of diseases like Alzheimer’s, and the care these patients require, cannot be addressed with gender-neutral solutions. Conventional policy proposals to improve opportunities for women’s work-life balance often have middle-aged mothers in mind – not young women like me who are university students, early-career professionals or starting their own young families.
The perspectives of young women are, unfortunately, often absent from political discussions about flexible working arrangements, compassionate care leave, care allowances and tax credits and pension credits for lost time in the workforce. The nature of our caregiving is different, too. Instead of taking time away from the workplace, many young women like me are juggling their care responsibilities and academic/professional pursuits simultaneously. As a result, we risk early-career burnout and precarious employment because of our unique need for workplace flexibility.
Conversations about these new iterations of work-life balance also often leave men behind. It is particularly important to build men’s capacity as caregivers in their roles as sons, husbands and family members, since they may be less comfortable with the domestic responsibilities and intimate aspects of caregiving to support the women in their lives. On a professional level, we can also encourage men to explore nursing and caregiving career paths and compensate nurses and professional caregivers appropriately for the challenging physical and emotional labour they provide every single day. This will be a growing labour force in the future, and one we must ensure offers attractive and competitive job prospects. Finally, we must also make gender-neutral provisions for workplace flexibility to improve men’s confidence about asserting and balancing care responsibilities in their working lives.
Throughout our lives, we will all have moments where we are caregivers and where we ourselves are vulnerable. In my life, caregiving is a responsibility and privilege I have experienced earlier than most, but the question of work-life balance is no less relevant.
Joanne Cave (Alberta & St. John's 2013) is currently studying the Master of Public Policy at Oxford's Blavatnik School of Government. She also works as The Rhodes Project's current Profile Coordinator.