At our Virtual Queen’s Park Day this past December, we heard from our community member Carol Sagan who highlighted the challenges that her family has encountered in caring for her husband Matt. Her story was compelling and all too relatable so we share it with you here in Carol’s own words.
I have been married to Matt for 10 years and we celebrated our 10th anniversary during the lockdown stage of the pandemic (along with many others) in April. Matt is a high functioning, C 4-5-6, incomplete quadriplegic with a Tracheostomy.
We receive care using the Direct Funding program which means Matt hires and trains his own workers, no agency involved. After speaking with our staff at the start of the lockdown in March, we all came to the agreement to continue working together with constant daily monitoring. Matt has care based on the hours needed to function during the day. However, I would always help with parts of Matts care throughout my day as no one person can provide care on a 24/7 basis.
We made it through two weeks before facing our first real interaction with COVID when one of Matt’s workers had been near a COVID positive person, a second one had symptoms while a third was awaiting test results after possible contact. And just like that, no morning workers, meaning no one left but me.
Matt needs to get up and function everyday so now I took on his 3-hour morning routine on top of all the care I already provide. Matt’s care in the morning is busy plus physically demanding, not just tea and toast. There’s using a ceiling lift for multiple transfers between commode, shower, dressing, placement in his manual chair for a workout followed by a final transfer to his power chair for the rest of the day. Thankfully, our evening worker who usually works 4 nights a week kindly picked up an extra one to help lessen the amount of care on my shoulders leaving weekend nights and meals. A PSW is unable to work 7 days in a row. There are no labour rules for a spouse. I worked like this until our staff was able to come back.
“So, at this point I am, among other things; a care worker, hairdresser, chef, grocery shopper, ceiling lift technician and wheelchair technician (Duct tape solves all!)”
On to the next crisis – gloves and P.P.E., neither of which could be found anywhere. Even the pharmacy Matt has been using for over 25 years could not find him the equipment he required. The normal order of 8 boxes of gloves every couple of weeks went down to zero. This left Matt searching the internet while my son and I drove around locating pharmacies with stock and their two boxes limit. This turned into a very costly venture as at one point three boxes of gloves cost us roughly $145 online. Direct Funding did issue a one-time payment for extra supplies which helped lessen the sting, but still wasn’t enough.
Then came the challenges of creating the pandemic box of personal protective equipment (PPE) that Matt might need if he contracts COVID and a requirement of Direct Funding. We could not buy medical grade masks, gowns or needed supplies anywhere because we were not classified as frontline workers. After numerous hours online, we finally located, ordered and paid whatever the cost to fill the required equipment for our pandemic box. This all occurred before May.
Our biggest dilemma of the pandemic soon followed as our weekday mornings worker gave in her notice. She finally completed her nursing exam and was now fully qualified. With the difference in pay and longer hours you can hardly blame her. After weeks of placing job ads in numerous locations, we approached an agency (frowned upon by Direct Funding) with hopes of finding help but even they had no staff available. This was partly due to the demanding role of a PSW, the money and the Pandemic rule preventing work in more than one location. So, I am now covering two mornings a week, while luckily, our part time weekend girl picked up the other three weekday mornings. Matt needs to get out of bed whether we have a paid PSW or not.
Overall, this pandemic has changed all our lives. Matt, who insisted from the time he married me, that I was not to do all aspects of his care. Right now, there is no option. So, at this point I am, among other things; a care worker, hairdresser, chef, grocery shopper, ceiling lift technician and wheelchair technician (Duct tape solves all!)
Oh yes, of course, I am also a wife. Yes, I married Matt for better or worse, sickness and health and I wouldn’t change a thing as I will always help out and step in anytime. However, the one thing I would change is having COVID not exist so no family would have to go through this ordeal at all.
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