We Don’t Stop Being Who We Are Just Because Our Minds Go

I’ve been thinking about my hospice work and the extraordinary privilege I had of entering these homes–so many of them different (some extremely different) from my own. And not simply gaining access but entering as a full-fledged, intimate partner to the families. The whole thing makes me shake my head in wonder.

These are, on the whole, people who don’t really want me there. I’m never in somebody’s home because a family was just out looking for somebody extra to add to the mix. No. These are people in great pain and tremendous overwhelm. They’re often near drowning in the extraordinary demands of the dying process and this makes them need—often desperately—extra help to meet those demands. That’s where I come in. I’m there because I can offer them the kind of help they need, and they’re only letting me in because they have no other choice.

And I can’t emphasize enough the risk that they’re taking in doing so. There are a lot of vultures out there who prey on the vulnerable in a myriad of different ways and these families, in their exhaustion and bewilderment and deep grief, are exposed. And they know it. But here I am, a total stranger with a belief system that often differs widely from their own, coming in to witness every last, little area of their lives; their pain, their limits, their frailties, and their mistakes.

I hold my presence in their home as a huge responsibility. I feel like part of my job is to create a shield around them with my respect and reverence for their sovereignty over their own lives. I’m there to learn as much as I can about the moral and spiritual pillars that they’ve chosen so that I can help shore them up against the flood that’s engulfing them, support them from the level of the foundation that they’ve already built. Because that’s always the one that will serve them best in navigating the dying journey.

After watching the dying and their loved ones take that journey over the years, I’ve come to believe that dying is not the ideal time to begin questioning one’s spiritual framework. Furthermore, it’s a bad time for someone else to come in, take advantage of a dying person’s vulnerability, and start trying to stir up doubts in order to convert them to another one. Hopefully, by the time we start to die our values and beliefs are things that have been built up over time, taken from the many questions, tests, ideas, and experiences we’ve faced in our life. If we’ve had enough time and done things right, our values should have already been put through the fire, tested and confirmed so that, when something catastrophic finally happens, they’re there to fall back on for strength. For a person with a confirmed faith in any system of beliefs, trying to switch that system while dying is like trying to jump from one kayak to another in the middle of a class-5 rapids. It would be both stupid and dangerous.

(The one instance where I suppose it might be of help–introducing a possible set of beliefs to someone while they’re dying–would be if the person was floundering and terrified. If for some reason they didn’t have a spiritual framework of their own and wanted help finding one. But they would have to ask for it. Then I suppose offering them one would be more like pulling them out of the water and into any boat.)

One of the patients I worked with was a centenarian whose mental faculties, at 102, were drifting. She was a devout, lifetime Seventh Day Adventist, a branch of Christianity which I discovered, interestingly enough, does not believe in heaven. Her daughter/caregiver explained that Adventists believe a person’s soul, rather than going to heaven, stays with their body after dying, sleeping peacefully with no awareness of the passage of time, until the second coming of Christ at which point Jesus resurrects their bodies and makes them new again.

So this was the belief that this woman had chosen and embraced all her life. But in an odd twist, it was now contributing to an unwelcome side effect. Sometimes, in moments of dementia and confusion, she spoke of her mother (who had died years earlier) as lying cold and alone in the ground somewhere—the idea obviously distressing her a great deal. She’d grip my hand, moaning and crying, and it was difficult for me to distract her. As she was nearing death she seemed to be experiencing more and more fear about being laid in the ground herself (abandoned!) and, listening to her I was reminded of the way children often misunderstand and twist abstract concepts in a way that frightens them.

It was the first time I was confronted with a question that often comes up with dementia. Part of me wondered whether–for reasons of compassion–it might not be kinder to give her a different, more comforting, view even if it differed from the one she’d embraced before dementia. If it could bring her more peace, would it be all that wrong to tell her that her mother was not lying cold and alone in the ground somewhere but was actually up in heaven? (Which seemed like the closest alternative to her own belief system, but it could just as easily have been some other lovely place if she’d buy it.) Or should I stick with the faith she’d committed herself to throughout her life, the one she chose when she was still strong, rational, and clear, even though it was now causing her some profound distress?

Actually, the question was strictly hypothetical, an intellectual exercise. First off, as a hospice worker my duty was always to honor the values and beliefs of whatever home I entered and support the family from those. Making up something else to suit random circumstances just wasn’t an option. And secondly, her daughter was a fierce advocate for her mom and, even if I had been tempted to take the easy route and tell her mom a fib, I would have been turned out of the house in a heartbeat. The daughter would have felt that I’d betrayed them all and she would have been right.

But eventually, in spending time in their home, in listening to the family’s stories of the strength of their mother’s faith and in seeing the comfort and joy she still drew—even in her dementia—from singing and praying in the language of her faith, I drew my own conclusions.

Over time I became certain that, if we could go back twenty years to when she was still strong and lucid, and I could explain what was going to happen and ask her what she’d want me to do, the patient herself would be the first to tell me that–no matter how confused she might become in her final days, no matter how much fear and suffering it might temporarily cause her in her dying process–under no circumstances should I ever mislead her, try to support and care for her from any other basis, than the tenets of truth which she had adopted, embraced and lived by all her life.

It was a good lesson for me and deepened my understanding of what respect really means. The dying are achingly vulnerable. It would be so easy in this work to fall into pity and coddling, to take shortcuts to try and ease their suffering, but it would be wrong to do so. The symptoms of dementia, of oxygen deprivation, of disorientation, exhaustion, and loss of memory, do not in any way mean that a person has suddenly turned into someone weak, stupid, or childish.

As human beings we are far, far more than just a brain that is currently running up to speed. We’re rich and emotional and complex and unfathomable, as well as a whole lot stronger than we tend to believe.