Recently I was at a social gathering and was asked to talk to a friend of a friend who has been worried about his memory.
I was immediately concerned when the friend of a friend didn’t recognize me and thought we were meeting for the first time (which we were not). We don’t see each other a lot, and maybe I am not that notable, but still…
He’s about 65. He forgets things. He been missing appointments. He still seems to be a decent driver, but he gets lost in familiar areas. GPS maps on his phone no longer make sense to him. And, to his horror, he occasionally struggles to remember what to do when he plays golf with friends. He recently showed up to play without his clubs. When his friends asked where his clubs were, the word clubs didn’t even make sense to him.
He teared up as he told me how concerned he was. He was divorced, and his only child, a daughter, lived about an hour away. He had not told her about his concerns, but he wondered if she had noticed anything.
He had confided these concerns to his primary healthcare provider, who assured him that we all get more forgetful with age. He didn’t even bother to bring it up at their last visit because he knew he’d be dismissed.
I recommended he visit a neurologist. He had some hesitation (because he said he was scared to get bad news) but agreed to try to get a referral.
He asked whether, if he was diagnosed with a type of dementia, he would have to quit driving immediately…if the Department of Motor Vehicles automatically takes your license away. Nope, I told him. Lots of people with dementia continue to drive after diagnosis. Of course, eventually a decision has to be made about when it’s time to stop driving but that decision typically isn’t on the day of diagnosis.
He asked whether, if he was diagnosed with a type of dementia, he would have to stop living alone. Do people with dementia live alone? Sure, they do. I always recommend some check-ins and safeguards, but nothing says you can’t live alone after diagnosis if it’s safe. Eventually there would need to be a discussion of next steps, but action would not need to be immediate.
I realized that this guy thought, upon diagnosis, he’d immediately lose his driver’s license and have to move either to a facility or in with his daughter.
That’s not the way it works.
There is life after dementia.
To be fair, people living with dementia live with a continual sense of loss. Loss of driving capabilities. Loss of the independence of living alone. But those losses don’t happen quickly. It’s not like ripping off a Band-Aid. They happen gradually.
It’s true that individuals living with dementia may have to give up a lot of things on their journey. Opportunities to work and volunteer. Hobbies. Traveling. Family gatherings. Toward the end, the ability to walk and talk and brush your teeth and dress yourself.
I often get asked about the order in which people will lose these abilities. Truth be told, I have no idea. I know someone who is non-verbal but can still tweet (quite eloquently). I have another friend with dementia who must walk with a cane but is still able to ride a road bike.
I stopped trying to make predictions a long time ago. I was wrong too much, and I don’t like being wrong.
This gentleman, as he talked to me, seemed to be envisioning a future in which he lost everything at once.
He told me he’d have to give up golfing. When I asked why, he shrugged and said he really wasn’t sure. When I said that people with dementia golf, he seemed pretty surprised.
“I’ll make an appointment with a neurologist,” he promised. “But what do I do in the meantime?”
I told him he should just keep doing what he enjoys doing. (And perhaps confide in a few people who he could go to for help and serve as safeguards.)
“And if it is dementia?” he asked.
I told him he should just keep doing what he enjoys doing.
You do what you love until you can’t do it anymore.
That’s not just true for those who live with dementia.
There will be a day that I can no longer teach indoor cycling classes, go paddleboarding, and give lectures (all things I think are fun….yeah, I think public speaking is fun).
There will be a day when this guy can no longer go golfing. But today isn’t that day, and neither is tomorrow.
And you can always borrow clubs if you forget yours.