Archive for October, 2014|Monthly archive page

Alzheimer’s means never saying a real goodbye

Over the weekend, I was channel surfing, and I landed on “Stepmom,” a movie with Susan Sarandon and Julia Roberts that I never saw in the theaters. I watched the last half of it, distracted by Facebook on my phone and not particularly absorbed in the movie. But near the end, during scenes featuring Sarandon and her two movie children, I got choked up. It was Christmas morning, and she was giving them handmade gifts covered with photos of her and the kids. She had metastatic cancer, and the presumption was this was her last Christmas. And each kid got to talk openly about her illness and how much they’d miss her after her death.

And I cried as my mind got to work, wondering what was really bothering me. It didn’t take long to figure it out. Alzheimer’s has been called the long goodbye. But that is misleading. I lost the mom I had known all my life many years ago. By the time she dies, she won’t comprehend any effort on my part to say goodbye. The truth is, at least in my case, that Alzheimer’s robs us of the chance to say a goodbye that has meaning. We are so focused on maintaining function early on, and learning how to interact with our loved one and her damaged brain. Keeping the peace, ensuring safety, striving for happiness – these are the concerns that consumed me before and after Mom’s diagnosis, when she still lived alone and then in assisted living. I thought a lot about her future, and what was in store for her, and for me. I wondered how long it would take her to decline enough to be receptive to a move to a nursing home for patients with dementia. I wondered when she would stop knowing who I am.

It never occurred to me to sit Mom down and discuss my wish to tell her how much I love her, to assure her I will be there for her, while she still might understand why I was saying this kind of thing. We didn’t get to have a heart-to-heart with the recognition that soon she would be gone. An Alzheimer’s patient is doomed to an inevitable outcome, but there is still so much uncertainty and fear about that future, and an overwhelming desire on a caregiver’s part to protect the patient from harm – physical or emotional. To talk about death with these fragile patients would be cruel if they could understand and a one-sided conversation once their comprehension is significantly compromised. Alzheimer’s sucks in so many ways, and it has taken until now – with the help of a movie, for god’s sake – for me to realize how particularly sucky this unfortunate truth is, that despite all the time we’ve spent together and all the time I will spend with her until she dies, Mom and I will never get to say a real goodbye.