I’m sitting at a soccer field in the middle of the Great Smoky Mountains in Tennessee. A text message pops up on my phone. It is from my mother. “Bless your heart.” That was all it said. My response, “What do you mean by that?”
My husband has been diagnosed for over two years with a degenerative brain disease called FTD (Frontotemporal Dementia). He’s showed symptoms for at least 4-5 years prior to that. My mother has been around my husband for over 20 years. Yet, she has lived in a state of denial concerning my husband’s declining cognitive abilities and his socially inappropriate behaviors. She is not the only family member.
My oldest son had a soccer tournament in TN. My husband can no longer drive, so my mother offered to pick up my husband, take him to lunch, and drop him at the Greyhound bus station so he could spend the weekend with his own mother. She had spent the sum total of one hour that afternoon with my husband eating lunch at a local restaurant. She was exhausted and mortified by his behaviors. He asked the manager to run the “choo choo train” in a childlike voice. He was overly boisterous with the waitress. He was confused over the menu. He picked up his plate and licked it. He requested the neighboring store to blare “Sweet Home Alabama” from its stereo then proceeded to sing and dance to the song.
She’s read my blog (I think) and listened to my stories. We have been to her house numerous times. She has been to sporting events and theater productions with him. But, she had never handled him alone. It has become my last resort for overcoming the denial in the family. When I am around, there is a buffer between his behavior and others. He tries harder to keep things in check when I am within reach. People tend to focus negatively on how I am responding to my husband rather than focusing on his behaviors. Left alone, bam! Works. Every. Time.
But, there must be more to this denial. It’s a nearly universal experience among FTD family members. My theory… the natural human spirit is to wish and want people to overcome illnesses. To get better. With cancer, there continues to be hope until the end is very near. This is not cancer. There is no cure. There is one outcome. One. Yet, the human capacity to accept that escapes most. We are not conditioned to do so. But, when it’s the ones closest to us that cannot accept the disease. That cannot accept the declines. That cannot accept that everything possible is being done to help those afflicted. It hurts. It’s exhausting.
But finally after two and half years post-diagnosis, all the family members now see the disease. They understand the struggles. Three simple words – “Bless your heart.” Relief.