Some changes in life are predictable and easily assimilated into our life plans. We know that time passes and we age, we know that our families go through stages from infancy to empty nest to grandchildren. These changes we take in stride, planning for what we know is coming, and then there are those abrupt life-changing moments we could never have predicted. There is that day you walk into the doctor’s office and get a diagnosis that shatters all the plans ever made and leaves you staring into the great unknown without a plan.
One chilly February Day in 2022, my spouse, his daughter and I walked into a neurologist’s office to be informed in a very harsh, crass manner that my 69 year old spouse had dementia, there was frontal temporal atrophy and he was at what they consider to be a moderate stage where the dementia makes it impossible for a sufferer to be left to their own devices. In denial my spouse became very agitated and stated there was nothing wrong him and the Dr was an asshole, the Dr earned his moniker as he got confrontational with his patient and declared out of the blue that my spouse would never operate a motor vehicle again, his days of independence were over! We could not comprehend what we were being told as my spouse’s agitation spiraled towards a possibly aggressive level. We hustled out of the office bowed under the portentous weight of the diagnosis with an aggressively agitated patient and an unconcerned Dr. We were stunned by the expected diagnosis and the unexpected severity of same said diagnosis and we were frightened. We had no chance to talk to anyone about just what this diagnosis meant for him as the sufferer or us as caregivers. We were on our own.
The portentous declaration that the Dr. had declared my spouse unsafe to drive and that he would never operate a motor vehicle again hung over us like a declaration of doom. Of all the things that had been said this was the dominant theme. My spouses driving had not been a concern. He drove less, he was self-regulating behind the wheel and never seemed to be unsafe. He only drove short distances anymore. His sense of self and independence hung on that keyring and none of us were ready to take them from him. Of all the things that we should have been able to wrestle with, this one shouldn’t have taken center stage at this moment. But there it was, and there I was…and here I am.
Our trip home was laced with accusations. My spouse claimed he had never been to a doctor before who set about just to make him look stupid. The doctor was an idiot, he didn’t have dementia, there wasn’t anything wrong with him. The cognitive test full of questions he couldn’t answer, had been a minefield of frustration and embarrassment for him and kept coming up between the potential loss of his driving privileges and just who did that asshole think he was? Did I know that asshole was going to do him that way? Why did I think there was something wrong with him? What had he done to make us think there was something wrong with him?
Denial is easier to embrace than such a portentous diagnosis. His short term memory was failing, his confidence and self assurance fading. His personality had changed from that of a rugged individualist who was almost selfishly narcissistic to a clingy dependence that sought reassurance over the simplest things. Before, He was going to do what he was going to do and if you wanted to go too fine…if you didn’t hey he’d see you when he seen you. Now, he would not go anywhere or do anything without me. It was smothering after my independence. His dependence on me for everything was not something I had ever thought to experience. The total 180 degree personality change is hard to process at times. Where is the man I married?
We can’t say dementia, but we can acknowledge that maybe he took a few too many blows to the head over decades of contact sports so we go with that when we get too close to the truth that all is not right in the world anymore.
For me this has been a redefining moment. It seemed like all of a sudden I stepped off a ledge and I no longer had a partner, I had no idea just what I had. The emotional blows have beat me down and left me ragged and exposed in ways I am struggling to cope with. I am writing this blog to chronicle our journey through this terrible Illness. Maybe it will help someone else to know they are not alone. Sometimes it really seems like I am on an emotional island and no one is anywhere around. I am a small soul walking a long dark path.
MrsSmithsLifeUnexpected 