Paige Wilkins and Taya Jones struck up a friendship at a seniors’ centre where they worked — Wilkins as a social worker and Jones as a recreational therapist. They formed a close bond and over the years, their lives became unexpectedly intertwined. They both married around the same time, had three children each, and then years later, both went through divorce.
In 2018, Jones, a then 44-year-old fitness enthusiast was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects the brain and spinal cord. It was something Wilkins says she never saw coming. Jones was athletic — she competed in IronMan Triathlons, was doing yoga, bootcamps, running and cycling. She was extraordinarily strong, both physically and mentally, and it was unimaginable to Wilkins that someone with so much strength and athletic ability would be diagnosed with such a devastating disease.
Since Jones’ diagnosis, there has been a slow yet steady decline in functioning, and this past summer, she lost much of her mobility. She needed care throughout the day, above and beyond a personal support worker who visited each morning, so Wilkins ended up leaving her job to help care for Taya. She is now one of the 7.8 million Canadians who provide unpaid care to a family member or a friend with a condition or a disability, 54 per cent of whom are female.
This week, Wilkins opened up to Healthing about her experience and about the financial impact of her decision to leave her job to help care for her friend. She also revealed how she struggles with feelings of guilt, and why she believes that grief starts long before a loved one dies.
This interview has been edited for length and clarity.
Taya’s unexpected ALS diagnosis must have been hard for both of you.
When Taya was diagnosed, she was incredibly stoic about it and she vowed to fight it, to find every treatment that was available or emerging. I was in shock for a long time, it didn’t seem real. I worked in palliative care for 20 years, so I was very accustomed to illness and when the news sunk in, we both approached it more as a problem-solving challenge than anything else.
As a caregiver, what responsibilities have you taken on?
I am with Taya typically Monday through Friday. On weekends, her children are home, and they provide care, along with a personal support worker. Other friends also help on weekends and some evenings. On weekdays, I usually arrive before noon or after her personal support worker has helped with showering. I take care of the errands, pick up groceries, assist with online banking and her administrative tasks. I do laundry, dishes, meal prep, feeding, and some degree of personal care. I occasionally drive Taya to and from medical appointments and I attend meetings with her health-care team.
What’s been the biggest challenge for you?
In my experience, it would be the complexities of navigating the blurred line between friendship and caregiver. Respecting boundaries while maintaining the closeness of a friendship has probably been the biggest challenge.
Early on, Taya also faced some hardships herself.
In those first few months after diagnosis, Taya sought to access Edaravone — a treatment that was not available in Canada, so she ordered it herself from Japan. It was very difficult to get, and it wasn’t covered by OHIP, but she advocated for herself and was able to access the medication. It was incredibly expensive, and it cost her a fortune, but she knew that the studies that had been done suggested that it was effective in slowing down the progression of the disease. She got on that treatment within a few months of her diagnosis, which was quite remarkable. Over the course of her illness, she also tried several naturopathic remedies.
How is she doing now?
At this stage of the disease, she is hoping to access the experimental stem cell treatment from BrainStorm Cell Therapeutics called NurOwn. It is not yet approved by the U.S. Food and Drug Administration (FDA). It’s disappointing the amount of time it has taken for this treatment option to be offered, and it is still unclear how long eligible patients will have to wait to access it when it does get approved.
You left your job to help support Taya. How has that decision impacted you financially?
I have been lucky enough that it hasn’t created any hardship for me or my children. I have not had to make any compromises, compared to many other caregivers out there. But this experience has certainly financially impacted Taya. She went from having a salary to long-term disability support, which is wonderful to have, but it’s not nearly what she would be earning at her full-time job. The number of disease-related expenses, such as installing a chair lift in her home, which can cost roughly $17,000, can really add up. Some of these may be written off through taxes, but the costs are significant, and there are many expenses that are not covered.
End-of-life conversations are an inevitable part of a caregiver’s journey. How have you handled it?
We actually talk about it regularly — we’re both very practical about it. For example, we have completed legal forms, we’ve talked about the possibility of pursuing medical assistance in dying (MAID), and we’ve discussed funeral arrangements. Unlike metastatic cancer, the ALS disease trajectory is variable. The life expectancy can depend on the decisions that are made along the way regarding life-sustaining medical interventions. We are aware of what the next year might hold and there is still a lot of planning to do. She has three teenagers, and the goal right now is to have everything in order while focusing on ‘today.’
You are a mom and a caregiver. How do you find time for yourself?
Being a caregiver to Taya is different from a paying job where you would schedule a couple of weeks off and take your vacation without a degree of worry or concern or guilt. Perhaps this is my psychology, but it is difficult for me to prioritize myself. I have always been a caregiver, first growing up, then through my career as a social worker and then when I became a mother. The thought of taking time away is difficult for me. I know that, conceptually, it is the appropriate and healthy thing to do, but prioritizing myself feels selfish.
There is so much research out there that tells you how counterproductive this is, and we have all heard that analogy that you need to put on your oxygen mask first, but I find it challenging to act on that. I would love to say that I do yoga and go to the gym, but the truth is I don’t. I scramble through the week, and when I am with my kids, I scramble through the weekends as well. Self-care is something I still need to work on.
What advice do you have for other caregivers who are just starting their journey?
Enlist the support of people who have differing skillsets. For example, identify which friends are good at cooking and ask them to commit to a meal once a week or find out which people are more comfortable doing grocery shopping or driving to appointments. That way you don’t need to ask them at a later time, when things become more stressful and difficult. I think that it would be wise to identify these various supports at the beginning of a caregiving journey so that you know who to go to and when.
Do you plan to go back to work at some point?
I didn’t want to take a leave of absence from work because I wasn’t sure how long I would need to care for Taya. If I decide to go back to a different role in the future, I’ll figure out what that looks like for me down the road. Right now, I’m focused on all the caregiving work that’s in front me, along with parenting my children.
Caregiving is a tough job that doesn’t come with a paycheque. Do you think that caregivers should be compensated for the work that they do?
In my field, the adult children of my clients would say to me, ‘Why do we not get paid for caring for our parents when we’re not putting them in a long-term facility and we’re doing all the work?’ It’s such a valid argument, and I don’t know how that would be measurable, but I recognize that it would be an astronomical undertaking to try to define the value of the work caregivers do. In theory and ethically, people should be compensated for doing work that is needed or required and is otherwise done in a very fragmented way. If government support were available to caregivers and they could tap into that type of financial assistance, better care options would be available to people who need it.
I will say this: it was bad enough before COVID, but now with the pandemic and all the staffing changes, there are fewer personal support workers available to work in the community, and people who don’t have family or friends to rely on could be left hoping that a support worker would turn up on those scheduled days. Being a PSW is such a difficult, underpaid role that it’s hard to get people to do it well and stay committed to it.
We know that caregiving can be physically and emotionally draining. Where does grief fit in?
There’s a lot of subtle grief in the entire process, and there are losses that happen along the way as someone’s disease progresses. Anticipatory grief (grief before death) is overlooked, and people don’t often talk about it. It’s important to seek counselling and support because grief begins long before you lose a loved one.
What are you most grateful for right now?
What I’m most grateful for is the opportunity to share this journey with someone so important to me. I’m aware of how precious time together is and appreciate the chance to make as many memories as possible.
For more information about ALS and caregiving, visit ALS Canada. The Ontario Caregiver Organization and the Canadian Centre for Caregiving Excellence also offer resources for caregivers and opportunities to connect with others.