When I began my blog on March 31st, 2012, one of my biggest goals was to help women better protect themselves against possible tragedy and financial difficulties. Last year I wrote seventeen blog posts that were viewed by roughly 1,100 people in thirty-five countries according to Google Analytics, and while that seems interesting I wonder if I’m really achieving my purpose. If you were one of those people reading my blog, let me ask you a question: Have you taken any action to look at your own situation and make changes for the better? For example, do you have a valid will that covers all of the people you care most about in the event that something happens to you? Does your spouse have a will? If something happens to him, are you fully covered? Do you have enough life insurance to pay all your liabilities and give you time to recover?
I’m willing to bet that many people who read the stories that I’ve published intended to sort things out and take action but never quite got around to it. Perhaps they actually wrote it down on the never-ending to-do list that sits permanently on their desk, kitchen counter or smart phone. Or worse, maybe they just figure that such nasty things are not likely to happen to them. After all, they’re in a great marriage, they’re reasonably young and fit and so on. Yes, it could happen but really, how likely is it?
Here’s the thing: you have no idea what’s around the corner. I have two cases to illustrate that point today and I’m hoping that the take-away message from these stories in particular, and my blog in general, is to take action sooner rather than later.
The importance of timing
First there’s my friend whom I’ll call Dave. Mark and I received an email from Dave a while ago that went something like this:
“My wife and I have been reading Doris’s blog and while we thought we were both on the same page regarding our situation, it turns out we weren’t. As a result, we increased our insurance coverage. Several weeks later I discovered that my “widow-maker artery” was 90% blocked and I needed a stent. I had been having symptoms but I attributed them to stress. Antacids seemed to be working so I kept popping them back. Only after the fact did I realize how close I came to having a heart attack. I’m feeling fine now but it was a close call.
If my wife and I hadn’t stopped to consider our insurance coverage and increase it when we did, I would no longer be eligible because I now have a heart condition.”
Dave and his family are protected because they took action right away. They had no idea that a heart problem was brewing. It was all the more surprising since there is no history of heart disease in the family and while Dave isn’t an athlete, he is in decent shape and takes care of himself.
From left field
Then there’s the devastating story of Helena Van Ryn. I spent an evening with Helena recently to discuss her story. She had reached out to me in June of last year after spending a couple of days on Parliament Hill advocating for care providers. As part of that process she gave a speech. It is so deeply touching and well written that I have decided to share a portion of it with you. My comments will follow.
“My experience as a caregiver began innocuously: In the spring of 2006, my husband Chris complained that his hand hurt when he was trying to grip a golf club or throw a Frisbee. At that time, Chris was a healthy, active, 40 year old man who had never been sick before and had a successful career working as a Director in the federal government. Chris saw our family doctor who immediately ordered an MRI and an appointment with a neurologist.
Soon after, in July of 2006 he was officially diagnosed with ALS and told he had likely had it for some time, and now had two years to live. At that time, our twin daughters were about to start grade 3. Thus my experience as a caregiver began with no training.
In 2007, he had many falls and became significantly weaker and began to use a motorized scooter. The following year, he required a wheelchair. The year after that he received a ventilator and night time breathing equipment and he passed away in July of 2010 approximately four years after diagnosis, the summer before the twins started Grade 7.
The harsh reality of care
One of Chris’s wishes was to not be hospitalized. I agreed to this request and in the ensuing four years, Chris did not spend one day in hospital,..not a single day! Instead our home became a hospital where he could be cared for with dignity and respect for HIS wishes.
During this four year period, I worked full time for about 2 ½ years and then took leave for one and a half years. Interestingly, I work in the health care field, yet nothing prepared me for this experience. The people who made the biggest difference to me as a caregiver were our fabulous team of personal support workers and attendants, many of whom, worked with us for 2-3 years and some of whom are here tonight. The consistency of this care was crucial. They are the unsung heroes of our current health care system and also deserve better treatment and more recognition.
There were many professionals involved in our home care experience. However the majority of the coordination of services and the burden of care rested squarely with me as his primary caregiver. Like the spine, I was the recipient of all the incoming messages from specialists, and was the backbone of the operation, disseminating medical information and translating it into care and treatment. It required a lot of focus and energy! It has been said that caregivers are the back bone of the health care system.
Being a caregiver was by far the most difficult job I have ever undertaken. It is taxing, physically, emotionally, economically and spiritually. The toll it took to deliver 24/7 care in terms of my personal health and well-being were enormous. What got me through these dark times was the support, love and care of our extended family, friends and colleagues.
Their support enabled me to care for Chris. They brought our family meals, helped us adapt our home, held fundraisers, including a lavish casino night and several wine tasting evenings and a garage sale. They set up a charitable account to help offset the costs of some of the equipment we had to purchase. They gave us air miles to reach the destinations on Chris’s bucket list. One of the most poignant of the many gifts we received were donations from our daughters school friends. These girls asked for donations to the ALS Society in lieu of receiving birthday gifts. It was heart-warming and humbling to see the compassion shown by all these amazing people. To this day, I remain truly grateful.
I needed these beautiful moments of compassion and giving. For during this time while I was taking care of Chris, I also lost both my parents and found myself being the “on” parent all the time. This was an extremely challenging time for me and I felt pulled in many directions. I have always considered myself a strong and resilient person, but to tell you the truth, this nearly proved too much. Watching the man I loved struggle with the simplest things: moving his fingers, taking a breath, speaking to me and ultimately losing even these simple abilities was both terrifying and humbling. ALS is truly a cruel disease.”
The lesson?
In 2005, if you had asked Helena and Chris to predict what their lives would be like in the following year, their answer would certainly not have included dealing with a degenerative disease that would tear apart the family. And yet that’s exactly what happened.
They had plans to travel the world together; they had even lined up a year off from work so that they could make it happen. Then their world turned upside down with a few small symptoms that seemed so innocent: a sore hand that can’t grip a golf club. Perhaps a pinched nerve? Some sort of swelling? Certainly not ALS.
It’s unbelievable what Helena and her girls have been through in the last six years and to their credit they are doing remarkably well, particularly in light of the trauma they’ve endured.
Financially Helena is is good shape today thanks in part to the help that she received from her incredible support system, but also due to her insurance coverage and her own resourcefulness.
The two stories I’ve shared illustrate the fact that we just don’t know what will happen. I’m not a religious person but there is an amusing proverb that seems apt: Trust in God but lock your doors. I’d like to propose a version of that for this blog: