Creating every-day routines helps with shouldering the burden of care-giving. We have found that using timing devices and lists to complete complicated medication time schedules, and having customary procedures for bathing, hygiene, as well as dressing and food preparation help us more easily complete the daily tasks required to care for Nick.
It can all become customary and ordinary until it changes again. Life is never static and although having routines and schedules can create a false sense of stability, we do know that Nick’s Lennox Gastaut Syndrome is a progressive disease. Sometimes that progression seems to wake us up like a slap in the face.
Nick loves to travel and over the past decade we have become very used to bringing his adaptive equipment as well as changing his medication schedule as we cross the time zones. We have adapted to the changes. During the trip to Ireland this week we faced another change. Nick didn’t have the strength to walk more than a few feet. Typically we would wheel him to the door of the airplane and he would walk from there, using the seat-backs as a support as he walked down the aisle to his assigned seat. This time we asked for the aisle wheel chair. The two individuals that assisted Nick with the chair were patient and kind. Since Arden and I didn’t know how to set up the chair, we weren’t any help. We just observed the amazing young people as they rendered this service to Nick.
He loved the trip and actually slept for about five and a half hours of the nine hour flight. We had planned out seats to be across the aisle from the disabled toilet on the plane, which is very convenient.
The lack of leg strength is still a big concern. We are doing all we can to curtail this progression. We have been taking Nick to physical therapy and doing the prescribed exercises with him. It is a battle we seem to be losing. Sometimes unexpectedly, we need to let him rest for 20 minutes before continuing, so this has greatly affected our schedule. We’ve been late to events and meetings or had to reschedule them. So far everyone involved has been gracious as we are adapting to our new normal. I am sure that there is some level of frustration; I know that Arden and I sometimes feel it ourselves.
Nick is generally happy and doesn’t seem frustrated with all of these changes. He is a great example to me. We will continue with all of our activities as long as we can.
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