Mark Stolow is a very interesting man and spared some time to speak with me about caregiving – something he knows a lot about. Mark worked on The Caregiver Network which has recently become Huddol – an online learning and support community for family and friend caregivers.
Jamie: Thank you for agreeing to speak with me Mark! You speak with caregivers on your site daily and you were also a caregiver yourself for many years. Can you tell us a little about your story and how you came to start Huddol?
Mark: Sure. My mom is bipolar. My dad did the best he could to be the primary support, but he didn’t have a strong network around him. At a very young age, my brothers and I had to step up and support her. At 12, I really had a limited understanding of what was going on other than my mom wasn’t feeling well. We’d take turns staying home from school to help her, mostly during episodes of depression. I would say I was shaped by being a young caregiver – it’s something that changes your worldview, affects family dynamics, and eventually took a toll on my parent’s marriage.
But my firsthand experience with suffering led me wanting to work in the human development space, eventually landing in the world of caregiving. In truth, even though I had been a caregiver, it took me months to bend my mind around the idea of caregiving; I had never seen the care experience outside the context of everyday family relationships.
I always had a relentless spirit of betterment and a focus on innovation. I started working with a team where I co-built and eventually managed The Caregiver Network, which was focused on online learning for caregivers. We then expanded our vision and created Huddol; an online community for and by caregivers. The Caregiver Network brought experts to caregivers, but caregivers are experts as well. Through Huddol, we wanted to give caregivers a much stronger voice. Everything we build aims to create a support network around the caregiver. For example, Onist is on Huddol as an innovative financial management solution and resource. You contribute invaluable insights around financial issues affecting caregivers. Brad’s (Onist’s CEO) experience with caring for his dad is a great example of where his personal care experience can help guide others and help them avoid financial stumbling blocks.
Jamie: Yes we are, Huddol is a great community support platform! What would you say is the average age of the caregivers on Huddol?
I’d say around 70% of Huddol members are 55+. The unique challenge we face is how to create links between members with similar experiences and also expand a social network around them. This is why we are very focused on piloting programs with groups of caregivers, like we’ve recently done with the Parkinson Society of Quebec. Familiarity breeds comfort, and comfort creates a feeling of safety and trust.
Jamie: What area do you see as the most daunting when it comes to caregiving?
Mark: I’d say there are a few. 1. Emotional acceptance vs resistance: Coming to terms with an unplanned life experience, managing your expectations against your hopes and dreams and the new reality in front of you. 2. Being active vs. passive: It’s disorienting to navigate the world of caregiving and know who to talk to and when (nurse, social worker, private sector… there are so many different people to coordinate). 3. Family dynamics: Money is a big factor. If you’re caring for someone with a loss of autonomy or cognitive function, steps may be required to make you legally responsible for their financial decisions. Many caregivers (more than 550,000 per year) often have to leave work partially or fully to meet the demands of caregiving. This means decreased income at a time when they are taking on additional expenses related to care. Parking costs, travel, supplemental services, treatments, etc. add up over time. Caregivers can become impoverished from supporting a chronically ill family member. Caregiving has a resonating impact on all aspects of personal and family life.
Jamie: How do you see technology like Onist’s household financial management platform making a difference for caregivers?
Mark: Caregivers need solutions that make their life easier and that don’t add more to the to do list. For example, it’s easy to get started on Huddol, it’s free and relatively simple to understand even for those who are less familiar with online environments. Onist has done a good job making their product fit more seamlessly into the experience of care; keeping track of your parent or spouse’s finances fits into existing caregiver tasks and provides immediate value without adding more work. It’s important to keep this in mind when you’re building solutions for caregivers – the key is to show them that the resource in front of them will actually ease the challenges associated with care. Onist is also a great tool for open communication, transparency and keeping track of your loved one’s financial transactions. Transparency is also important legally – with elder abuse on the rise, having a system like Onist that’s based on the transparent exchange of information is vital. Where money is involved, you may find malicious behaviour especially when someone is vulnerable. Having more eyes on a senior’s finances gives extended family members the opportunity to stay in the know and help prevent instances of financial abuse.
Jamie: What would you say to new caregivers who are just starting to take on this role and are feeling overwhelmed?
Mark: Simply: we get it. Caregiving can be overwhelming. It does take a physical and emotional and financial toll. Caregivers should not feel guilty for feeling overwhelmed. Once you know that your cup is too full, it’s about finding a balance between caring for your family member and maintaining your own sense of sanity and well-being. Understand that your welfare and the welfare of the person in your care are woven into each other. You cannot self-sacrifice to the point where you harm yourself and believe you can still help your family member. It’s important to reinforce the message that ‘caregiving is an important part of your human experience but only one strand of your life’.
Jamie: Is there a mantra that helps you day to day?
Mark: In the context of family care, I’d say nurturing and cultivating a sense of resilience and self-acceptance is critical in dealing with any experience of suffering. Maintain a proactive disposition while trying to develop the tools and strategies to maintain a high level of resilience. From my experience, caregivers who are most resilient come out better on the other side, but resilience can be learned!
Jamie: If you could leave us with anything, what would it be?
Mark: It can be hard to spend time contemplating or talking about a less than perfect future. It’s important to recognize that with aging comes an increased likelihood of age related health issues. Having the conversation early with ageing parents about how they want to be cared for, and how you can help them, allows you to prepare before a situation becomes urgent. When it comes to the care of a family member, important conversations can never come too soon.
Jamie: Thanks Mark, see you on Huddol!