Dotty has dementia

I remember the first time I met Dotty*. She called our office pleading for assistance — could someone please come over and help her husband with his printer, please! It was Dotty's birthday and her husband was trying to print out the menu to her favorite restaurant so she could choose what to order for the celebratory takeout that night. "Bless his heart. But he's driving me crazy trying to fix the damn thing — it's probably his fiddling that broke the printer in the first place!" We assured Dotty we'd be there soon, no worries. I started frantically Googling how to fix a broken printer, already knowing my only contribution would be "Did you try unplugging it?" Oh well.

Dotty met us in the garage with a roll of her eyes. "Oh thank you so much for coming. Lord help us! What a mess." We followed her inside to find her husband, Tom*, in the office. His top half was hidden behind the desk as he tinkered with the plugs in the back of the printer. They bantered with each other playfully while we finally got the printer working.

A few months later Dotty called again, this time asking if I could help with a project on her computer. We met up and she pulled out her massive, outdated Macbook. She opened the heavy laptop and I audibly gasped. "Oh, Dotty! Wow… I've never... seen so many files on someone's desktop!" She looked at me blankly. "I have no idea what that means. But can you help me? This thing has been so slow and I can't get my work done. And I need to finish by Christmas!" I was about to ask what she meant by "work" and "finish" but got my answer as soon as we clicked on the first file. Each of the hundreds of documents saved on her desktop was a story. About her life. That she'd written. Dotty had penned hundreds of short memoirs, and as I opened one after the other I was blown away by her stories. Her writing. Her life. Her.

Dotty and I got to be really close friends. We met almost weekly to work on organizing her memoirs — she wanted them cleaned up in time to print for Christmas gifts. Sometimes we'd work on the files, sometimes we'd swap stories… a lot of the time we'd recap the exact thing I'd shown her just the week before. Every time she'd take meticulous notes by hand on what I was teaching her; every time we'd look for last week's notes only to find they'd gone mysteriously missing. Then Dotty joined my Sign Language group. Every Tuesday morning, about 12 olders and myself gathered to learn ASL together. Each week, Dotty arrived promptly at 10:30 and dressed to perfection as always: knee-length pencil skirt with matching sweater set and complimentary jewelry, perfectly styled hair, coral lipstick applied flawlessly. Every week she'd sit in the chair second closest to the door and follow along with the signs, making sure everyone fingerspelled her name correctly — ending with a "y" and not "ie."

Dotty's husband Tom frequently came up in our talks. Dotty would lament that all he liked to do anymore was walk; he didn't like to converse with her, they didn't seem to like the same things anymore. He'd just up and leave the cottage, walking and walking until he felt like returning, whenever that might be. I remember one day we were in a group talking about how people experience loneliness in different ways. Afterwards she came up to me and said "And remember, you don't even have to be alone to feel lonely."

I can't assume to know for certain the reason for the distance Dotty felt from her husband, but I have to guess it was in large part due to both her and Tom's cognitive decline. Tom had been diagnosed with dementia years before, and Dotty had always identified herself as the carepartner. But one day she came into my office and asked me to close the door. "Please, please don't repeat what I'm about to tell you," she whispered. "I have Alzheimer's. I was just diagnosed. I'm not telling anyone but my daughters and you. Please don't tell anyone else. I don't want them to make us move."

That's a huge fear in the minds and hearts of many olders living in Continuing Care Retirement Homes or CCRCs (one community that includes Independent Living, Assisted Living, Memory Care, and Skilled Nursing). I've had many olders tell me that they weren't fully truthful when professionals asked about challenges they were experiencing because they didn't want to be told they had to move to a different level of care. (One friend of mine, 99 year old Helen, would scold me everytime I called to check on her. "Why are you calling!? Did you hear I had a fall? I didn't! Well I did but I'm fine, so I didn't need to report it! You won't make me move, will you?!") Dotty didn't want to move out of the cottage she and Tom had shared for years. As any older living in a CCRC will be the first to tell you, the leap from Independent Living cottage to Assisted Living apartment can feel insurmountable. I just want to die in my own home, they say.

But Dotty and Tom had reached the point where something had to change. It wasn't safe for them to be in Independent Living anymore. They were both experiencing significant cognitive challenges, with Dotty's memory "looping" every couple of minutes. The day I gave Dotty and Tom a tour of the Assisted Living building was one I'll never forget. Every two or three minutes, Dotty would look at me wide-eyed and ask "They want us to move?! Here!?" I'd say yes, the interdisciplinary care team thought it would be best if she and Tom transitioned to a higher level of care. A sob would burst out and she'd shake her head emphatically: no, absolutely not. She'd get a tissue from her purse and dab her eyes. We're not coming here. A few minutes later she'd look at me and ask again: "What!? They want us to move!? Here?!"

Dotty heard the same answer to her same question over and over, but felt like she was getting bad news for the first time, every time. It was the toughest tour I'd ever given, that's for sure.

Dotty and Tom eventually decided to move to Assisted Living. They got a beautiful two-room apartment on the second floor with big windows and bright light. But Dotty was sad. It didn't feel like home. It wasn't home.

When I think of Dotty now, I see so many different versions of her: the frustrated and devoted wife, the put-together social butterfly, the dedicated sign language student, the beautiful writer, the heartbroken CCRC resident. But those aren't versions of Dotty, are they? They're all fully Dotty, each one a whole and true person.

I think so often we see olders as just that, old. We neglect to acknowledge and appreciate the countless facets of their being. Their wide range of emotions. The various roles they play. The way they look, act, think, write, move, feel, write. I'm so glad I got to know so many different, whole parts of Dotty; I know there are lots of parts I didn't see, too. No person is a one-dimensional human being and no dementia numbs the experience of life. That day of the Assisted Living tour, Dotty's memory was failing her. But her emotions, her reactions, her beliefs and desires were as potent as ever. Those senses weren't dulling, in fact they may have been sharpening. People aren't painted in monochrome; some parts may be fading while others grow in vibrancy.

Dotty is as full a person now as she was the first time I met her. I wish she didn't feel so profoundly the shame and stigma about dementia the day she came into my office to whisper her diagnosis. But that's not a Dotty problem; that's a culture problem. How do we shift our society to be one where fear isn't the main emotion with the diagnosis of dementia? Fear of being asked to move. Fear of judgment because of the stigma. Fear of life as you know it being over. Fear of everyone you know seeing that part of you as all of you. Or not seeing you… at all.

CR

*I'll never use real names, don't worry!