I met a woman at an event who told me that when she was diagnosed with Alzheimer’s she was given one and only one piece of advice from her doctor. It was that she shouldn’t let anyone put in a feeding tube when she reached the end-stage of the disease. REALLY?!?!?

I am generally not a fan of feeding tubes in most case of end-stage Alzheimer’s, but that’s irrelevant. What is bothersome is that this is the one bit of advice her doctor could muster. That’s it. The woman told me that she felt like she should stop by Walgreens and buy adult diapers on the way home–or maybe just check herself directly into a nursing home.

There may be a point where she and her family are faced with decisions about feeding tubes. And those are important decisions. I am huge proponent for discussing end-of-life options with families and medical professionals. However, they are not issues that need to be considered five minutes after being told of your diagnosis. I’m not sure I’ve ever used the phrase “putting the cart before the horse” before, but there’s a first time for everything.

As this woman told me about her doctor’s “advice,” she stood in front of me looking like any “typical” middle-aged woman. She was wearing a long flowery dress and heels. There was no wheelchair, no walker, no cane… If you saw her at the grocery store, you’d never guess she had been diagnosed with Alzheimer’s. There was definitely no feeding tube in sight.

I asked her how long ago she was diagnosed. She told me it had been about four years. Four years and still no need to consider the feeding tube. Four years and still living pretty well (although a little bit differently) most of the time.

It occurred to me that her doctor had told her how to die from Alzheimer’s. However, there was no one to tell her how to live with the disease.

From my perspective, we struggle to bridge that gap. Often there is much time to live between diagnosis and the drooling, bed-bound, disconnected individual that many of us picture when we hear the term dementia (and, of course, not everyone who has dementia will reach this point). Life may have to be adjusted in some ways, but it’s life. 

There’s been some movement toward teaching people to live and live well with dementia. It hasn’t come from the medical profession. In fact, it’s come from people living with dementia. They’ve realized that they had to search for resources after diagnosis, and they are helping others so they don’t have to search quite so diligently. One of the most amazing aspects of the dementia community is how people with dementia have connected–often online–to support each other.

They often vent about how we (as professionals and family members) just don’t get it. And you know what? They’re right. We don’t get it. I hope they realize that we are trying–or at least most of us are. We may say stupid stuff, but we are well-intentioned. I try hard, and yet I wish I had a dime for every regrettable thing I’ve said to someone with dementia.

We are putting more money into finding cures for most diseases that cause dementia than in the past. However, the support services and advice the medical community (with exception, of course) hands out at diagnosis is still pathetic. You leave the office knowing you have Alzheimer’s, or Frontotemporal Dementia, or Lewy-Body. But then what do you do? This isn’t some abstract, philosophical question. Literally, where do you go next?

Someone once mentioned to me that she was told by her family doctor that it was likely she had Alzheimer’s. She had planned to meet a friend for lunch after the appointment. She sat in her car–frozen–not knowing if she should go to Applebee’s with her friend or cancel her plans. She managed to text her friend a message that said something like, “Can’t do lunch. Might have Alzheimer’s.”

Then she went home and sat with her phone in her hand, wondering if it was appropriate to call her kids and tell them of her diagnosis, or if it was in bad taste to not tell them face-to-face. When she called her daughter, her daughter asked, “So is this better or worse than cancer?” They discussed this for several minutes and came to the conclusion that it depended on the type and stage of cancer.

She was working a part-time job and didn’t know if she should go to work the next day. Or maybe she should call in sick–because she had Alzheimer’s. Can someone with Alzheimer’s work? She had no idea. She actually called the doctor back to ask. He said it was fine to work…until it wasn’t fine anymore.

Most of the information available regarding Alzheimer’s and related dementias isn’t about life. And life, even life with dementia, is about more than preparing for death.

When I did a hospice training about ten years ago, I met a middle-aged guy with cancer. He had been in hospice for a few months. The volunteer coordinator had invited him to come talk to our group of volunteers. As his wife pushed his wheelchair into the conference room, I couldn’t help but think he looked pretty cheerful for a man with a few months to live. I don’t remember his face; I do remember that he was wearing a Hawaiian shirt and had a pierced ear.

He talked to us for about an hour, but I only clearly remember one thing he said. He told us, “There’s something between diagnosis and death. It’s called life.”

And that’s especially true of a disease like Alzheimer’s…when that life can last a long time. And for some people, life after diagnosis can be a pretty good life.

The reality (as ugly as it is) is that some people with dementia will need adult diapers. There may be decisions to make about feeding tubes and other end-of-life issues. But…truth be told…there’s a chance that every single one of us has this in our future–whether we have dementia or not.

But in the meantime, there’s life.