Jolyon Hallows (pictured on the left) provided care for his wife Sandra (pictured on the right) for the twenty years she lived with Parkinson's disease (PD). Jolyon describes his wife as "loving, kind, generous and inquisitive. She was also stubborn, interfering, single-minded and sometimes infuriating. And I loved her for all these qualities" (Hallows, 2017). Sandra, a Registered Nurse, actively sought out treatments, therapies and medications to help manage her Parkinson's disease. Unfortunately, Sandra passed away in May of this year.
Like many partners to people with Parkinson's, when Sandra was diagnosed, Jolyon suddenly found himself in the position of caring for his wife. When he first began to search online for information about caregiving, Jolyon was struck by the lack of practical information and tips. He explains, "There was a great deal of emotional venting and support and I don't denigrate that; but I wanted to know, for example, how to give a bed bath, how to transfer, how to dress someone and how I could modify our home to make life easier for both of us. I couldn't find any of that, so I had to fumble around as best I could. Now, I want to make what I've learned available to other caregivers". To support others going through similar experiences, he started a blog at www.aparkinsonslife.com, and wrote A Parkinson's Life: And a Caregiver's Roadmap, which is scheduled for publishing later this year.
As the years passed, Jolyon looked for further assistance through Parkinson Society British Columbia (PSBC). "I realized I needed to join a support group, so I contacted PSBC and was directed to such a group. The group facilitator would bring communications from PSBC to the meetings or distribute them by email, and I was surprised by the wealth of resources now being offered. There was information on webinars, conferences and various programs for PD patients". As a result of the scope of services offered through the Society, Jolyon has become a member.
Recently, Jolyon won a video contest with the American National Caregiving Conference. In his YouTube video submission, he describes how he changed his approach to dealing with Sandra's anxiety attacks, which were often brought on by problems that didn't exist. He found that instead of challenging her perceptions, it was more beneficial to the both of them to reassure her that everything was alright. This tactic ultimately put an end to her panic attacks.
When asked what he saw as the most important piece of advice for caregivers, Jolyon offered this: "Find someone you can talk to frankly and who won't judge you. Caregiving is brutal. It takes a toll both physically and mentally. Sooner or later, everyone needs to vent. So my advice is to find someone, a support group, a therapist or a spiritual leader, to whom you can unload…my primary advice to caregivers is to find a caregivers' support group."
About Jolyon Hallows: Jolyon Hallows is an instructor, writer, speaker and advocate for caregivers of Parkinson's disease. He resides in Burnaby, BC, and manages the blog, A Parkinson's Life And a Caregiver's Roadmap. He also volunteers with Parkinson Society British Columbia (PSBC) as part of the Speakers Bureau, providing talks pertaining to caregiving and Parkinson's disease in public and semi-public settings.
Source: Jolyon Hallows. (2017, May 29). Remembering Sandra. Retrieved from http://www.aparkinsonslife.com/Sandra.html.