I recently read a book, Ambiguous Loss: Learning to Live with Unresolved Grief , at the recommendation of a friend. It’s one of those books where, as I read, I’m seeing myself in the pages; I’m seeing my constant struggle to make sense of what is happening with mom - and, in turn, me - and I find myself feeling a sense of relief that there is a name for what is happening.
Alzheimer’s and other dementias take so much away and leave vast uncertainty behind. It’s a terrible diagnosis for the person with the disease and for those who love them. And then there’s the grief that comes in waves, along with sadness, anger, and yes, even self-pity. It’s hard to take sometimes. I had no idea what I was in for and even if someone had described it to me, I wouldn’t have understood.
Twenty-four years ago my dad died in his sleep; one minute everything was normal and the next it wasn’t. That kind of grief, the kind that rockets into your soul and your heart and blows everything apart, dropped me to my knees. I remember looking around the room with the phone in my hand and it seemed as if everything had shifted. My world had changed and there was no going back, no easing in, no gathering myself up to face the inevitable, just a cannonball jump into a world my dad no longer existed in.
The grief I’m experiencing with mom is different. I felt profound sadness and disbelief when this all started happening, and a lot of anger. There was a sense of urgency to get her moved here and her medical needs taken care of, and tons of frustration with all the little things in between. Now that the logistics of her care is largely taken care of, the urgency is gone but the uncertainty never goes away.
In the book, Ambiguous Loss: Learning to Live with Unresolved Grief, the author, Pauline Boss, talks with a man named John whose wife, Sarah, was in the advanced stages of Alzheimer’s disease. When John was asked if his wife’s recent need for a feeding tube was the lowest point for him so far, his answer was not the expected ‘yes’; instead, he picked up a pencil and drew a staircase that was headed downward on a piece of paper. John explained that at each step, which represented each new crisis that came up, he had felt panicked and had no idea how he was going to handle it. But he did handle it, over and over again. At every new step there was a moment of not knowing what to do, or how to adjust, or what was needed but, every time, he figured it out. He kept going.
And that’s what we as human beings do - we handle life as it’s served up. Sometimes a regular Thursday afternoon turns into something unexpectedly wonderful and sometimes a Tuesday morning turns our lives upside down in a tragic way we never saw coming. We adjust, we re-calibrate, we learn, and we do the very best we can at every new turn and then...we keep going.
Mom and her dog, Susie. November 1958