One thing about Alzheimer’s is that it always keeps you guessing. Just when you think you have their triggers figured out, they change. Think you’ve got the agitation under control? Guess again. Sleep patterns? Rarely the same two nights in a row!
Perhaps appropriate then, that the single, solitary point I was absolutely certain of ended up being a fallacy. Mom had been ill for years; we were barely into 2004 when the signs of the disease began to unmistakably show themselves. And, in hindsight, although she lived for another nine years, the progression was fairly rapid. My gaffe was the sincere belief that all of the grieving I’d done during her illness would lessen the pain of the final loss. Oh how I had miscalculated that one!
With Mom, aphasia set in early and hastily worsened, so it had been many years since I’d been able to sit down and have a normal conversation with her. As is so common, very early on in our journey, I began to feel as though I was losing her a bit at a time. But at each stage, we managed to find moments of joy and ways to communicate even if just through facial expressions and touch.
It was an ongoing process, to be sure, but the idea that people who have Alzheimer’s are completely “gone” is a misnomer. Right up until the end, we were still seeing aspects of her personality shining through. Despite her severe decline, we continued to see that stubborn independence, a disdain for being fussed over, and most notably, her magnificent sense of humor. We absolutely tried to make the best of the situation, but that didn’t minimize the grief along the way.
Hospice entered the picture, and I began to sense that for all the grieving I’d been doing over the years, I was embarking on a new, even deeper loss. We had indeed been living “the long goodbye,” but with each farewell, there had been the promise of tomorrow. It might be a good day or it might be a bad day, but I would see her again, touch her again, and say “I love you” again. And, there was a chance she would smile, laugh, or even tell me that she loved me.
When the moment came that she was released from this life, I felt loss the depth of which I’ve never experienced. It was only then that I fully understood – no matter how much advance warning I had or how much I thought I had grieved, I was now facing something distinctively different. To muddy the emotional waters, I knew I should feel thankful that she was whole again and that her suffering had finally ended. And I did feel that, but it didn’t dull the pain of this final loss.
In the midst of the battle, Alzheimer’s and dementia take over your life; sadness, stress, fear, uncertainty, exhaustion. Overwhelming. Yet to the degree possible, try to savor those special moments with your loved one – the hugs, the smiles, the rare twinkling eyes. Those moments come with less and less regularity until eventually they’re gone. Hold tight to the memories of those treasured flashes in time, and I promise, they will help carry you through.
Get the latest tips, news, and advice on preventing Alzheimer’s, treatment, stages and resources.
6330 Sprint Parkway, Suite 450
Overland Park, KS 66211(866) 567-4049