I recently wrote about ONE MORE THING. The cumulative toll of all the small bits and pieces of caregiving that can add up to TOO MUCH. In isolation each Thing seems do-able. But overall these Things contribute to the out-of-control life that is extreme caregiving.
I have a love-hate relationship with technology. Technology is a huge gift. In the first hour of Matthew’s day, alone, we use many forms of technology. The day starts with me programming his feeding tube pump and administering meds via an air compressor and gastronomy tube. I then transfer Matthew using a mechanical ceiling track lift into a dynamic wheelchair with lots of moving parts. Matthew then is loaded into our van using a mechanical lift. And this is only the first hour of our day. When Matthew is ill we add things like a pulse oximeter and a suction machine into our daily routine. Because of our reliance on technology and power for health issues we have a whole home generator hooked to our natural gas line. We have an elevator in our house to allow Matthew to move freely between floors. All this equipment is wonderful – when it works.
All this technology allows Matthew to live a healthy life at home and in the community. Without this technology Matthew would likely not leave his bed. Indeed, without this technology there is good reason to believe Matthew might not be alive. The harsh truth is that kids like Matthew didn’t survive into adulthood prior to the availability of this technology – and they certainly didn’t live at home in bedrooms that resembled mini-hospitals.
If any of Matthew’s equipment doesn’t work life comes to a screeching halt. If Matthew’s wheelchair has issues he spends the day in bed. Similarly if his transfer equipment doesn’t work he’s stuck, or I risk a back injury to move him. If the van lift doesn’t work Matthew is house-bound. If his feeding pump stops working we have a TOTAL crisis on our hand since my son has never tolerated gravity or bolus feeds. And so on.
All this technology comes at a cost – financial and otherwise. Despite scrupulous maintenance of all of Matthew’s equipment things inevitably go wrong, break, and just-plain fall apart. Matthew has very powerful muscle tone and is very hard on his equipment – particularly his wheelchair. It seems like I am constantly calling technicians for support and repair work. All this equipment is a huge source of One More Thing. In the last two weeks alone I have had to coordinate necessary elevator repairs as well as emergency van work, and emergency work to Matthew’s wheelchair. While I have excellent relationships with a few local companies who move heaven and earth to be supportive and helpful (National Home Health Care in Kitchener I am looking at you!), some companies don’t seem to appreciate the urgency that is associated with equipment malfunctions for people who rely so heavily on technology to survive. There are times that one has to be an outright nag to get service, much less service in a timely fashion. I find that part of my role as an equipment manager VERY stressful. For Matthew and I all this equipment MATTERS. A lot.
Oh, and of course there is the cost which I would remiss not to mention. All this stuff costs money. Lots and lots and lots of money. Matthew’s wheelchair cost $32,000. Yes, you read that correctly and it is NOT a typo. In total all this technology costs thousands upon thousands of dollars and these costs are a huge burden to already overwhelmed parents. Many kids go without vitally necessary equipment. Parents injure themselves because they lack appropriate transfer equipment. Only basic wheelchair and feeding pump costs are funded by the government, and only then up to 75% as a rule. The never-ending cost of repair visits and technicians’ add up quickly. When it comes to the equipment parents are either required to cough up the money themselves, or more likely since the costs are exorbitant, do without or search endlessly for funding sources which demand mountains of paperwork, multiple quotes, medical information, signed releases, and so on. Yup. One. More. Thing. Just to have equipment so your kid can get out of bed in the morning or have a shower. Stuff most of the world takes for granted.