(photo: summer fun at the cottage)
I have been thinking lately about my role as Owen’s primary caregiver and advocate and the process involved in making tough medical and care-related decisions. I’d always thought it was quite simple: do what I think is right given what I believe to be true at the time. ‘Right’ means 2 things: what do I think Owen would want, and what would I want if I were him. Using this admittedly rudimentary yardstick, decisions have included (but are not limited to):
- not getting a cochlear implant
- using hearing aids
- not using hearing aids
- not getting a g-tube for feeding
- getting a g-tube for feeding
- learning ASL
- learning Blissymbolics
- not learning Blissymbolics
- not medicating Owen for sleeping
- medicating Owen for sleeping
- going to school
- not going to school
- not getting a baclofen pump
- getting a baclofen pump
- removing a baclofen pump
- and now recently – not getting deep brain stimulation
Each of these decisions was followed by loud pronouncements to family, friends, doctors, and then within months completely reversed with much quieter assertions of opposite intention. “I will NOT…” or ” I could NEVER…” or “I will ALWAYS…” were replaced by “It wasn’t working so…” or “I just couldn’t bear the ______ (lack of sleep, discomfort, hassle – choose one) anymore”.
So far, no regrets. Decisions are made, things change, new decisions are made. But life with Owen is getting much more muddled and complicated and on reflection I see that none of this is simple. I’d like to move forward having learned something from our almost 11-year journey together. Maybe I need to broaden my definition of ‘right’ (as in ‘do what’s right’).
As I have mentioned in previous posts, Owen is deeply uncomfortable a lot of the time. However, his pain threshold and tolerance for the discomfort is increasing. In other words, he’s used to it. BUT, and it’s a big but, his pain isn’t the only issue at stake. At stake are his health, his manageability/quality of care, my health and wellbeing and Angus’ eventual involvement in Owen’s care. Consider this:
- Owen’s dystonia and spasticity are wrenching his body out of alignment. His hip is dislocated from the twisting and writhing and I think his opposite shoulder is next. When sleeping, his body is totally twisted in what some of us in the yoga world call ‘little boat twist’ – head turned to one side, knees bent (and drawn in) and dropped to the other side.
- Owen is getting hard for me to manage. He’s not huge – only about 45 pounds – but imagine carrying (safely) a 45 pound wiggly, slippery fish. Or strapping that fish into a wheelchair in a seated position (oh, and don’t forget to attach/fasten the lapbelt, chest harness, neck support, pummel… quick!).
- Owen is even harder for others to manage. He didn’t show up on my doorstep as a fully formed 10-year-old Owen. He and I have travelled this road together. His new caregivers though are a whole different story. I am acutely aware that for the young women I’ve hired, Owen is a huge challenge. Physically, mentally, emotionally.
- I don’t really sleep. Owen’s bed is beside mine and I often need to adjust him or change him in the night. He might sleep deeply from around 11 pm to 3 am. At a time when most of us can just yawn and turn over, Owen somehow wiggles himself into a pretzel shape and can’t get out. He’s also extremely tight and needs to be untangled. By then he’s entered a different phase of sleep and is less calm. He jerks, spasms, thrusts, postures – the only way back to sleep is to be held in a kind of fetal position (by me). I sleep on one side and basically hold him down while he twitches and flinches for the next 3 hours or so. We muddle through most nights, he and I, and get about 5 or 6 hours of sleep total – but for me it’s not restful or deep. The toll on me is undeniable.
- Owen’s brother, Angus, already feels responsibility for Owen. He recently announced that he will want to live on his own for a bit “in his 20’s” but then in his 30’s he will live with Owen and take care of him. Angus is 8.
Really, this list could go on and on. My point is that in addition to Owen’s comfort, I need to consider the long-term ramifications of my decisions and Owen’s ongoing care. I want him to be loved and cared for for the rest of his life – in order to make this happen, medical decisions must account for this.
My responsibility as his mother, advocate and substitute decision-maker requires that I consider so much more than what Owen would want. Partly because there are so many other issues to consider (some of which are listed above) and also because I just have NO IDEA what Owen would want.
I’m going somewhere with this – check the next post. This one is getting too long, even for me.