Crickets

There’s a saying amongst those of us in my dementia caregivers’ circle – with cancer, you get casseroles; with dementia, you get crickets. As is too often the case, when our person was diagnosed, people we thought would be there to support us immediately sent us their thoughts and prayers, and then just as quickly, faded out of our lives forever. It is true for many in the neurodegenerative disease space, and indeed, in the case of many diagnosed with a terminal illness.

We try to imagine why – it is inconceivable that people we love so much would abandon us in our time of greatest need – would we do the same to them? No, we assure ourselves, we would absolutely step up to the plate, be there for them, support them every step of the way. Sometimes, family members don’t understand, or don’t believe in the diagnosis. They often are critical of the care we provide our people, the decisions we make in an effort to keep them safe, to provide them avenues of stimulation, to keep them on a routine, to get them properly medicated – all things necessary to sustain a person with cognitive decline. Those family members often be sure to lay down their criticisms before walking away, adding insult to injury, and leaving caregivers doubtful of their capabilities and the tough decisions they are forced to make on a daily basis.

Dear friends, once integral to our lives, just can’t shoulder the pain we do, are afraid of saying the wrong things, feel inadequate to meet the challenges we face, and so find it easier to stay distant. Some of them, too, don’t believe the diagnosis, commenting, “he seems fine, to me,” and, suspicious of our motives, walk away. It leaves us feeling even more isolated, more alone, than we ever have before.

That people walk away isn’t a universal truth, however. We all have one or two people in our lives, someone else who has experienced pain and chronic illness in their own life and understands the pain we are experiencing, who steps up to the plate and puts themselves in our service, walks with us on our journey, stands with us in our pain. Sometimes, that person is a complete stranger, someone we meet along the way who says, “Here, let me help you; let me sit for you; let me get your groceries, I’ll come mow your lawn for you; can I help get your kids to school in the morning?” For me, it is those people on whom I focus my energies, instead of the pain of loss added to pain of loss.

I have forgiven those who just weren’t made for this pain, those who just couldn’t face the journey I walked. But the pain of loss continues to haunt me, the shared moments amongst friends echoing dimly in my head, the ghosts of those happier times laughing down the empty hall where I reside in the "after" of FTD/ALS. It is not only the loss of my favorite person in the world that I have suffered, it is also the loss of people who knew him, loved him as I did, who are no longer there to share in those memories, those echoes, that laughter. Loss upon loss, magnified and unspeakable, except to those who traveled the path with us.

I am reminded still of those angels that surrounded us on our journey, perfect strangers who gave us encouragement and strength when we needed it the most. Like the time Larry and I took Gabe and some of his friends to the mall for lunch and shopping, something Gabe asked to do to celebrate his birthday. Larry did great, waiting almost an hour for a table, waiting almost ten minutes for the kids to get back to the restaurant before ordering, barely making it through the kids’ drink orders before he ordered his meal, first in line, doing so calmly but deliberately, pointing in the most mannerly way he could, thanking our server pleasantly. For Larry, waiting is VERY difficult. Almost impossible. As was the noise level in the restaurant, all the people talking to him, asking him questions. Larry persevered, wanting very much to fulfill Gabe’s birthday wish, and I was so proud of him.

We walked through the mall with the kids for another hour or so before Larry hit the wall. I could tell he was just spent, but he didn’t want to disappoint Gabe. I suggested we head out to the bus to decompress for a bit while the kids continued with their retail therapy. I figured they could use the space. That we could find some shade, pull the curtains and take a quick nap, which would hopefully tie Larry over until we made our way home.

As he and I wearily made our way through the parking lot holding hands, we were passed by a fairly new Honda, the driver on her way out of the aisle we were in. I mentioned to Larry how much I admired the styling on the new Civic - the ground effects, the space-aged details, how I just love all the changes they made to it. Tired as he was, he smiled and agreed, nodding his head. The driver stopped just a little bit ahead of us and rolled down her window as we approached. She leaned out her window and said, “I just wanted to let you know I think you are the most adorable couple. You both look so sweet, walking together the way you are right now.”

I guess this was something I really needed to hear, because my heart swelled almost to bursting when she said it. I beamed at her, saying, “Wow, that was really sweet - THANK YOU SO MUCH. “ She couldn’t possibly know what we are going through, but something compelled her to stop, roll down her window and offer us such a wonderful, and truly needed, blessing.”

I am so, so grateful for memories like those, and for the people who did choose to be there for us and still are. The beauty of their love and sacrifice so greatly outweighs the pain of losing all those who couldn’t be there for us, and sustains me, even after Larry is gone. I have gained far more friends than I have lost on this journey.

I have even fallen in love again with the sound of crickets.