February 25, 2015: Imagine yourself sitting around the dinner table with members of your family or a group of your friends. Suddenly they start talking about you and the intimate details of your life as if you’re not there.
“She got up early. Had a BM first thing. I gave her a bath, got her dressed and then made breakfast. The bath wasn’t easy. She got a bit cranky, but she was okay once it was over,” your daughter or friend says. You are speechless.
“What about this afternoon? Did she sleep?” your son or friend asks. EXCUSE ME? You think to yourself.
“No, I took her Wal-Mart. She needs some new clothes.” She ‘took’ me!? I can take myself thank you very much, and I prefer to shop at Simons. This is what you think, but for some reason you’re not able to get the words out fast enough to say so.
“Gee, I’m not sure she should be out in this kind of weather.” That’s your son. Hey! Wait a minute! What’s going on? Suddenly I don’t exist anymore? Suddenly I am invisible?
How would you react to being invisible? I would feel humiliated and embarrassed. And pissed off. REALLY REALLY pissed off. And I wouldn’t get over it in a hurry either. Especially if it kept happening over and over and over again.
I know that despite the outward symptoms of being in the later stages of Alzheimer’s disease, despite the fact that she can’t keep up with the pace of “normal” conversation, despite the fact that it takes her a long time to process information, and despite her aphasia, Mom is aware and is affected by what happens around her.
She sees and hears and feels. She understands. She is here. In a different way than someone without dementia perhaps, but she is definitely here. I know it as surely as my heart beats in my chest as I write this. I have seen the indisputable evidence. I have experienced her intuition and wisdom.
Yet we treat millions of people like my mom who live with dementia as if they don’t exist. We do it in their homes and in public places. We do it in doctors’ offices, care facilities and hospitals. We do it everywhere. I see it and hear it all the time. I’ve been guilty of it myself. It’s hard not to do what everyone else does. This way of treating people with dementia has become normalized. Accepted. Even though it is disrespectful, demeaning and damaging.
I hate it when others talk about Mom like she’s not there, and I hate it even more when I slip and do it myself. No one does it maliciously. Or at least not most. Mostly people are trying to be helpful, not hurtful. But I’m certain that speaking about her like she’s not here when she is makes Mom feel diminished. I know what it’s like to feel invisible. It’s painful. We all have a right to be seen and heard.
“I’m thrilled we were able to shine a light on Alzheimer’s disease,” actor Julianne Moore said when she accepted the 2015 Oscar for Best Actress for her role in Still Alice. “So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is that they make us feel seen and not alone. And people with Alzheimer’s deserve to be seen so that we can find a cure.”
I agree with her. But we need to do more than find a cure. I believe we have to see people with dementia as the whole people they are so we can support them and help them to live rich, full lives for as long as possible. Finding a cure will be amazing. In the meantime, we must find better ways to integrate people with dementia into “our world.” People with dementia are not “shells.” They do not disappear when they are diagnosed. Memories do not define human beings. Being and feeling do.
In September 2014 Mom and I had a profound conversation in which she shared what she wanted from her life now. She told me she prefers to be awake rather than asleep; that she wants to “keep going” as long as she can. She is aware others often don’t see her for all she was and still is.
“There is more to me than what you can get,” she told me. I know exactly what she means. To me, it’s perfectly clear. Yes, she is not invisible. And neither am I. Nor will we ever be.
February 25, 2015
My Mom died on August 17, 2016. I’m so grateful I was able to see her until the very end.