Standing in the doctor’s office, watching the podiatrist work on Dad’s foot and processing what he has just told me, I feel as if we are all – my dad, Greg (his caregiver and the owner of the house where he lives), and I – perched at the top of a rollercoaster. Right before the drop we are poised to rocket down the steep slope, wheels rattling, gathering speed as we go. It is possible that something serious is about to start, and while normally, one would be apprehensive about a potential serious health issue, I find myself almost hoping for it – that the car the three of us have been in together for the last six years will start it’s slow forward motion.
To understand why a visit by Dad to the doctor is so momentous in the first place, you have to understand that he hasn’t left the vicinity of the house where he lives for a good three years or more. (Fortunately, his primary care doctor visits him at the house.) For years now, Dad’s health has disintegrated slowly; the Lewy Body dementia edging away at his mind, as his body gets more and more frail. He sleeps eight hours a day, doesn’t really walk much anymore, or speak, and doesn’t do anything for himself. However, nothing really dramatic has happened; aside from the dementia, he is so healthy – he just keeps ticking, like a watch. That’s how it’s been, for years, and I can’t help but wonder, for how much longer? And yet here we are today, at the podiatrist’s office for a badly infected toe that hasn’t cleared up despite weeks of antibiotics and loving care.
When Greg pushed him through the door in the wheelchair, I could tell Dad was uncharacteristically wide awake and a little anxious. Thin, collapsed, face slack and hands limp, he hunched in the chair. When I bent my head to catch his eye and he focused on me, he smiled faintly and I felt so bad for him. We had a complicated relationship during my youth and young adulthood, but now, the worse he gets, the more tender I feel towards him. He doesn’t know who I am, which is fine; I feel the connection between us. Oddly, he doesn’t feel like my dad, it’s more like he’s a loved one I take care of. Seeing him immobilized in his chair made me remember his more lucid – and aggravating – years. I say aggravating because I could never be quite sure what his malfunctioning mind would tell him to do.
One afternoon, years ago, I arrived at his Assisted Living Facility only to find he was MIA. On his own reconnaissance, he had called a car salesman who had picked him up and taken Dad to look at potential vehicles for purchase. I drove out to look for them, with no luck, all the while suffering visions in my head of him driving a car. When he got back, I was furious with him, and scared, and I went home feeling like I was at the end of my rope, because there was really very little to stop him from doing it again (other than not having a phone anymore, which I removed from his room.) But as I looked at him today, I almost wished back his strong legs and willful attitude.
Struggling to get him out of his wheelchair and into the exam chair, poor Greg had to support nearly all of his weight. I held Dad’s hands and rubbed his arm, catching his attention periodically and smiling at him so he would smile back, trying to distract him as much as possible. We had to carefully watch his face for pain since he can’t speak anymore. The doctor numbed his foot and clipped off most of his big toenail and then called my attention to something else. Apparently, Dad has a tumor under his toenail that could be melanoma: the doctor recommended an MRI within two weeks. He finished his work, bandaged Dad up, and we transferred him back into his wheelchair and into Greg’s car.
Of course, I’m wondering how this MRI is going to go because if it took this much effort to get him into the exam chair I can only imagine what placing him – and keeping him – in an MRI machine is going to be like. And I wonder whether this might be it, that thing I’ve been waiting for, knowing it had to come, that is going to take him away. He has had this disease now for at least fifteen years, and yet he has so rarely changed, and there has been so little for me to do, personal care-wise, that I wonder if it’s time to start gearing up for something big. I’ve helped other caregivers with these problems – I know what to do – and maybe now is our time. I am poised to spring into action, utility belt at the ready.
What I do know for sure is that I know he would hate all of this, and I hate it for him. He wouldn’t want to live like this, if he knew, and sometimes I feel like he does know, on some level. The religious beliefs he held so firmly in health tell me that no medical intervention would be welcomed or desired, even in dire illness. He wouldn’t even have gone to this doctor. So I might soon be making some difficult decisions, and action might be taken, and roles might be changing, and some things might be ending. But I won’t know for another few weeks, whether this is the thing, and our car is about to begin that final journey down the track. Nonetheless, I find myself looking down, and hoping it will start – and I find myself wishing for speed.