Dementia and the Meaning of Life

Today we are talking about the meaning of life. I’m going to tell you why we are all here. Hold on to your hats…this is gonna be life-changing, friends.

Just kidding. (Keep in mind this is from the same woman who last week completely skipped #3 on a list of 10 things care partners need to know. I don’t know the meaning of life; I can’t even count to 10.) 

I consider myself more practical than deep. I’m not a pastor and I’ve only taken one philosophy class—and that philosophy class wasn’t my favorite class of my undergraduate career. In fact, I took it only because my boyfriend was taking it.

But let me start with this…

I was reading a story online a few weeks that gave me pause. A woman was told in the middle of her pregnancy that her child, according to the doctor, had “no chance at a meaningful life.” She and her husband had to make some difficult decisions. To be honest, I don’t remember what they decided and I can’t recall the outcome of the pregnancy.

What I do remember is that I stopped for a moment at “a meaningful life” to contemplate what that meant. Could someone live for only 30 minutes and have a meaningful life? Could someone be on a ventilator and have a meaningful life? Could someone without brain development have a meaningful life?

I am not proposing an answer to those questions. I get enough emails with negative comments about my blog….I’m not planning to venture to discuss a topic that forays into the pro-life/pro-choice debate.

But what is a meaningful life and what qualifies this doctor to answer that question?

Could the parents perceive a meaningful life when the doctor doesn’t see it?

Is what qualifies as a meaningful life subjective? Or individual to each person? I mean, there’s no rubric for whether or not someone is going to live or is living a meaningful life.

This doesn’t just apply to pregnancy, of course.

A woman I once met at a speaking engagement had a sister, whom I will call Elizabeth. Elizabeth was a career-oriented lawyer who had never married (or even had a romantic relationship) or had children (or had any interest in her nieces and nephews). She was independent, educated, wealthy, and a pretty big deal in the city in which she lived.

Elizabeth watched her mother decline and pass away from younger-onset Alzheimer’s and frequently made comments like “I’d rather be dead than live in a nursing home” and “Please shoot me if I get Alzheimer’s like her.”

This frustrated her sister, who interpreted these comments as “Mom is better off dead” and “I’d rather be dead than be like Mom is now.”

As luck (or genetics) would have it, Elizabeth was diagnosed with younger-onset Alzheimer’s. She retired from her legal career earlier than planned and spoke pessimistically of her future.

“I am not going to be one of those aimless idiots wandering around the nursing home with no purpose,” she’d said. “I’ll kill myself before that.”

As it turns out, Elizabeth’s Alzheimer’s progressed quickly and her sister made a decision that she could no longer live alone. Elizabeth and her family arrived at the nursing home with a few suitcases and a recliner. Elizabeth seemed sad but resigned to her new living situation.

But a funny thing happened.

Although she dreaded becoming someone who was purposeless, Elizabeth’s sister saw her develop a sense of purpose like she never had before. Elizabeth might have lost her identity as a high-powered lawyer, but she gained an identity as what nursing home staff referred to as a “cheerleader.”

No matter who came in her room, Elizabeth told them that they were smart, good-looking, loveable, and many times “perfect.” Nursing home employees said that they argued about who got to work her wing because being around her was such a joy.

Elizabeth’s sister couldn’t have been more shocked. She had never received a compliment from Elizabeth in all her life, but now when she visited she was told her she was “a ray of sunshine” or a “gorgeous woman.” More than anything, the anxiety and stress that had plagued Elizabeth during her life seemed to melt away. She seemed happier than ever. Joyful as a child without a care in the world. Was this is the meaningless life she had feared?

Elizabeth had given her family strict instructions to pursue limited medical inventions when she no longer had quality of life. When they had to make decisions, they struggled. She developed an infection and needed IV antibiotics. At one point, she broke her hip. Then she started experiencing respiratory issues. And heart issues. They evaluated whether or not to put in a pacemaker.

Elizabeth was unaware of the details of her health challenges. She remained positive and upbeat….and, according to her family, happy. Her family was left to determine when they should seek care and when they should not.

While she had expected that dementia would lead her to a life without meaning, her family saw that her life had meaning in a way that it hadn’t before.

But who decides when life has meaning? And who decides when it no longer does? Or, perhaps, life always has meaning no matter the circumstances.

If pre-Alzheimer’s Elizabeth could take a sneak peak at post-Alzheimer’s Elizabeth, what would she think? Would she still want someone to shoot her? Or would she recognize that she was making a positive difference in the lives of family and nursing home staff? Is that enough to qualify life as meaningful?

Would Elizabeth think so?