Zamplo blog is a place where patients and caregivers can find information that empowers them. Read posts about health care tips, practical advice and motivating stories.

Mike Urquhart Jul 6, 2020 11:20:00 AM

A caregiver's journey: learning, listening, and accepting

I distinctly remember the day I finally figured out what it means to me to be a caregiver. My oldest son had been diagnosed with severe Obsessive Compulsive Disorder (OCD), was starting out on medication and was in the early days of therapy. His obsession was related to cleanliness, and the biggest challenge he faced was using the washroom. One of the cruelest things about OCD is how it makes you doubt things, and in his case, it was whether or not he was ‘clean’ enough to leave the washroom. The answer was almost always no, and an average trip to the washroom in those early days would take 3-5 hours. It is also a very painful thing to observe as a parent. The second hardest day of my life was working in the study at home, and hearing my son crying in the washroom on the other side of the wall because he couldn’t get out. But in the end, we figured out a washroom hack that worked. Once he was finished and had washed his hands until they were clean (another story in itself), he would jump in the shower and I would come in and disinfect his entire washroom. I would then walk out backwards, cleaning the floor as I went, and he would jump out of the shower, walk into his room and air dry for half an hour before we would both go to bed. The challenge was that this would normally take place sometime between midnight and three in the morning. And one of these nights, because he is a very thoughtful young man and knew I was exhausted, he told me to go to bed and that he would figure out how to manage. And it was at that moment around 1:30 a.m. outside the washroom door that I realized there was nothing more important to me and nowhere more important to be, than being there for my son. And that was when I finally figured out what it means to me to be a family caregiver. Now taking a step back, it might be helpful to share more about myself so that you can put that story into context. I’m a middle-aged white male who tends to use logic over emotion (my late wife Lorraine was prone to saying it was like being married to Spock), I should at times listen more, rather than trying to immediately ‘solve’ problems, and while I’m really smart in some ways (usually involving spreadsheets), I can struggle with other, more obvious common sense things. Over the past eight years I’ve been a caregiver four separate times: twice for Lorraine before she passed away from NUT carcinoma in 2014, once for each of my children, and this is not counting my own ongoing issues. The story I shared above occurred during my fourth time as a caregiver, which some good friends might say shows how slow I am to figure things out. But I think it also shows how it’s not unusual to cling to our expectations in life, even when those ships have long since sailed. And it is from this perspective that I’ve learned a few things that I hope may help other caregivers and patients as they walk similar paths. And literally on a path is where this story really begins. In 2012, if you had talked to Lorraine and I about what our lives would be like in 2020, we would have gotten everything wrong. Our oldest son would be moving out after graduating from high school, our youngest would have been a year away from being finished, and we would have been a planning the next stage of our lives, with lots of travel, cycling around the world, and growing old together. Then in March of 2012 Lorraine had a pain in her right leg after a hike, which turned out to be something called a giant cell tumor in her femur. A titanium plate, six screws, some wire, and a bucket of bone cement later, she could barely get around with a walker. This was my first real experience as a caregiver. I was working full time, taking care of Lorraine and the boys, and all during a time before Skip the Dishes. And the thing I remember the most was being tired. But I didn’t have to go through a seven-hour emergency orthopedic surgery, so I sucked it up. And two years later, after lots of physio and something called a forced manipulation (which is as bad as it sounds), Lorraine had ridden three Gran Fondos and you could barely notice her limp. My takeaway from this time in my life was if you worked hard, you could get by without too many life changes, except waking up the odd time to one of your kids covering you up with their blanket when you fell asleep on the floor, or the couch, or in their beds. Unfortunately, that didn’t work the second time around. After getting a mysterious bump on her head biopsied in August 2013, Lorraine was ultimately diagnosed with NUT carcinoma, a rare and very aggressive form of cancer with an average life expectancy of six months. Which leads me to my first key learning, Redefining Hope. This concept came from Bert Enns, a wonderful counsellor at the Tom Baker Cancer Center in Calgary who worked with Lorraine and I. Because we knew Lorraine was going to die, hope was redefined from growing old together to Lorraine having the best quality of life she could with family and friends before that happened. So, we travelled with the boys between chemotherapy, radiation therapy and surgery, and made as many good memories as we could. It was later I learned as part of my meditation practice that Redefining Hope isn’t a new concept, it was just new to us. Impermanence and change are constant in life. Many people know nothing else, and in hindsight Lorraine and I had been lucky to have gone as long as we had before something ruined our plans. My second key learning during this time was to Take Care of Yourself, and Accept Help. And I was surprised by the forms help came in. A food schedule was created by Lorraine’s friend Donna, and three nights per week dinner was brought to us by different friends. My business partner Tom created a site where Lorraine could blog, which was cathartic for her, and saved on answering a lot of well-meaning but draining “How are you?” e-mails. My other business partner Barb created guided meditations for Lorraine, which made bedtime a bit weird when I would drift off to Barb’s voice telling me to close my eyes. My buddies Evan and Glen were on call to go for ‘no cancer talk’ beers, so I could find an hour or two of respite occasionally. And an awesome client (because of course I was still working) fired me because I was exhausted and they could see what I couldn’t, that I should be spending more time with my family (thanks again Doug and Jarvis). It is also important to note that we got professional support for the boys, and in addition to the support from the cancer center, I started working with a private psychologist. And while the latter might not be financially feasible for everyone, there are supports of different types pretty much everywhere, and now online, so it is important to find what works for you. Because if you are drowning, you won’t be able to keep anyone else afloat. Before she passed away, Lorraine shared with me that she was dying with no fear and no regrets, having lived her life to the fullest for the time she had. This became the theme for her celebration of life, and a couple of years later I had it tattooed on my wrists in her handwriting so that this inspiration would always be with me. And I still live with gratitude to all the people who helped make our last months together possible.
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Zamplo Team Jun 22, 2020 10:15:00 PM

The Importance of Taking Control of Your Own Health Care Data

Taking the initiative to control your health data can lead to better patient empowerment and overall health outcome. As the healthcare industry continues its march towards the digital age, the democratization of data has become an increasingly important topic. It’s common for any health-related experience to become overwhelming, as patients and their caregivers need to keep track of different symptoms, treatments, notes, and appointments. Taking the driver’s seat with your health data can lead to a more empowered patient experience and ultimately, better overall health outcomes. Why is this patient-centred approach to taking control of your health data so important? Ease of Navigation When battling an illness or undergoing a complex treatment regime, the individual patient experience often involves navigating multiple practitioners, clinics, and opinions – most of which aren’t connected. It’s no surprise that patient’s data can often become scattered, especially as the network of parties involved grows, or as patients are dealing with physicians outside of the health care system and country. Taking ownership of your health data positions you as the hub of all your information from different sources. By keeping track of your data in an organized manner, it allows for a streamlined process. Now, when visiting a new practitioner for the first time, you can simply show them a complete log of everything you know so far, which will help to expedite the process. A study conducted in 2015 found that for 55% of patients, their medical information and history was either incomplete or missing when they arrived at their doctor’s office. In these types of circumstance, doctors would rely on patients to fill in the gaps - which can only be properly done if they are in possession of their health data.
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