Randi Schofield tried her best to not dwell on all the ways her life changed, on the pieces of herself that got lost in the shuffle. She was a 34-year-old single mother who, not long ago, was in the throes of a big life transition. She had left her full-time job of...

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I Took Over My Father’s Finances at 25. The Lessons Were Hard-Won.
Six years ago, I took over my father’s finances. ... I was 25 and had just moved in with my boyfriend, who is now my husband, and was working in New York as a health reporter making what felt like barely enough to cover my commute. I knew nothing about money — and now...
Being disabled is my future
People call me codependent. If you combined and then divided me and my partner in half, you might believe we are two normal bodies. But we’re not. When I can’t take my own insulin, his hand holding the needle to my thigh is my new limb and the pen is my pancreas. When...
How to Embalm Yourself Before You’re Dead
Since Mother’s death, I’ve been mothering Dad the way I’ve always wanted to be mothered. I learned to be a mother by caring for my younger siblings and newborn cousins in the cult into which I was born, until I partly grew-up and had four children of my own. I was...
Provincial funding programs should allow immediate family to be paid caregivers
Vancouver resident Evan Brunelle was approved for WorkSafeBC's Self Managed Personal Care (SMPC) program in 2019, which provides funding to people who have been injured at work so they can hire their own caregiver. However, it stipulates he cannot hire someone within...
Why Siblings Are The Forgotten Caregivers
When Katie MacDonald bought a new home in Brantford, Ont., this past spring, one of her main concerns was finding a house that was suitable for her older brother, Neil. ... In 2018, Katie started having intentional conversations with her parents about what Neil’s life...
How to Deal with Irrational Elderly Parents
Some of the approaches for responding to regular aging parents apply to irrational ones too, while other approaches are completely different. ... Understanding yourself and your parent doesn’t solve anything on its own. But, doing so gives you insight into where the...
Frontotemporal dementia: ‘I don’t ever want to be looked at by John as a caregiver, I want him to see me as his partner’
Cindy McCaffery provides support to her husband John who was diagnosed with frontotemporal dementia more than a decade ago, at age 48. Over the years, she has come to understand the importance of active living, and its apparent role in slowing down brain disease...
Saving Friends: What I’ve Learned from Insufferable Patients
How we conceive of autonomy, goodness, and justice (or their absence) serves as a fulcrum to reimagine the care clinicians offer for patients like Amy. The philosopher Andreas Esheté argues that in the revolutionary triad of liberty, equality, and fraternity, it is...
The Alzheimer’s Crisis in Indian Country
Alzheimer’s is on the rise across all Americans over 65, with one in nine people in that age cohort now living with the disease, a total of over six million people. But for American Indian and Alaska Native populations—who are more predisposed to Alzheimer’s and...
It’s time to embrace community care & let go of individualistic self-care
Everyone loves self-care these days… including billionaires, wealthy celebrities, corporations, your workplace or academic institutions, pop culture, and every social media influencer & wellness “guru”. The flourishing multi-billion dollar wellness, self-help...
Dinner with Proust: how Alzheimer’s caregivers are pulled into their patients’ worlds
In her mid-70s, Ida began showing signs of Alzheimer’s. Her decline was gradual. She experienced the usual memory loss and attendant confusion, but life went on pretty much as before. Then one day, Henry came home to find Ida speaking to a framed photograph on the...
Disability needs a new story
Disability typically is understood as the problem of a selected group of individuals who meet a defined set of conditions. This primary focus on the “people with the problem” has resulted in a narrow framework for understanding disability and for developing...
What I’ve learned being reliant on a caregiver
My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee's work day....
The Ultimate Guide to Purée
We ate a mostly pureed diet for almost two years. Yes, I said we, because I ate what Grandma ate. I never wanted her to feel different. Also, it was easier. Pureeing it all saves time. Otherwise, I had an added task of separating my meal from hers… and if there were...
How to Get Nurses Back in Homes Supporting Disabled Children
Finding nurses to care for medically fragile children at home has historically been difficult. But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The...
How to Set Boundaries with a Narcissistic Parent
Adult children of narcissists often find independence by separating out and spending limited time with their parents. But, as parents start to age and need support, the equation changes. Suddenly you may be expected to support them and may find yourself in the midst...
My Child Is in an Impossible Place, and I Am There With Her
In my family, we talk about hard things. That’s not to say we are morose. We are not. Nor are we particularly profound. If anything, we lean into the ridiculous, and the silly, whenever possible. At the same time, in over three years of managing our daughter Orli’s...
My grandmother died at home, just as she wanted. It cost $145,000
My grandmother died at home recently, surrounded by her family and loving caregivers with the support of a hospice team. It was exactly how she pictured the end of her life, and it cost our family $145,613.79. Many people envision their final days like my grandmother...
Family caregivers of people with long COVID bear an extra burden
For Louise Salant, long COVID has meant new stress, new responsibilities, and multiple medical crises to manage. It's transformed her life. But there's a twist. She's had to deal with this condition not just as a patient but also as a caregiver for her 86-year-old...
How Do You Deal With a Narcissistic Aging Parent?
Caring for a loving and grateful aging parent can be overwhelming at times. So, imagine what it’s like caring for someone who isn’t just struggling physically, but is also mean, manipulative, and highly self-involved. Unfortunately, some people don’t need to imagine,...
“Watching My Beloved Hurt Is Hard”
People are often curious about how Lene and I ended up together. This is doubly true when I tell them that Lene was disabled long before I met her. They can imagine themselves in a relationship where their partner could end up with a chronic illness or...
On hope
I knew what was going on the moment I rushed up two flights of stairs and found him. The kind of stroke my husband Roland had that morning, basilar artery ischemic, is not the sort of thing you want to be googling. It has a high mortality rate in cases where the...
The Brief, Wondrous Life of Little Leo
When Leo Babler was born with a rare and deadly genetic disorder, his parents reshaped their lives, moving to the mountains, building out an adventure van, and making sure their son experienced the most beautiful wild places in the country during the time they had ......