The person and the disease

Is it possible to draw a line and separate one from the other?

I just started listening to Travelers from Unimaginable Lands. Dasha Kiper’s book explores the expereince of being a caregiver for people with dementia. Kiper’s interest is in the ways living with someone with dementia can shift and warp the perceptions and functioning of the ‘healthy’ mind. Rather than addressing the more common question of ‘how can we make dementia caregiving easier?’ she asks ‘What makes dementia caregiving such a mindfuck?’

Kiper wrote about in The Guardian recently:

“Although we expect irrational behaviour and lapses of judgment from Alzheimer’s patients, we’re often puzzled by the baffling behaviour of caregivers themselves, many of whom mirror the denial, resistance, distortions, irrationality and cognitive lapses of the people they’re caring for. Carers, despite recognising that their charges are ill, find themselves behaving in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Because caregivers are “healthy”, we assume they should be reasonable, which is what makes their inability to adapt to the disease feel like a personal shortcoming.”

We all know that someone with dementia isn’t responsible for the things they say or do and that they cannot take in the information we provide, yet we all end up responding to their irrational behavior with irrational behavior of our own. Dementia is not a disease nesting itself in perfectly healthy minds of people who were previously homo economicus.

Dementia is acting upon the minds of real people, both the patient and the invisible patients. We do not make it to adulthood as the blank slates of medical research, addressing a single factor at a time. The caregiver is not just the caregiver. The patient is not just the patient. Yet the experience can hollow us out until we are.

So many changes are a slow slide until the whole edifice collapses. My grandmother failed to recognize me one day when I was in elementary school and was not diagnosed with dementia — was she ever actually diagnosed? I have no idea — until twenty-so years later. In those interceding years, what was dementia and what was her? What was her being cold and what was her covering up biological lapses of the self? She wasn’t known for being warm before I was born, so it’s easy to dismiss it as a moot point.

Trying to hold on to our sense of reality is difficult when we’re spending a lot of time with someone whose brain chemistry has unwound the thread of reality. Without a diagnosis or other clear medical explanation for behavioral changes and disagreements over what’s real, it’s even easier to feel our own sense of reality slipping.

Eleanor Henderson’s Everything I Have Is Yours is a memoir of her experience as the primary caregiver to her spouse, whose chronic illness remains undiagnosed. Or, as is often the case of the undiagnosed, his symptoms have been diagnosed as many things, none of them satisfactory.

In my own marriage I remember reaching the point where I concluded my wife’s illness was a combination of psychosomatic symptoms and faking in order to avoid potential anxiety triggers. It sounds very melodramatic; it’s not. Who of us hasn’t lied and said we had a headache in order to get out of something? Who hasn’t had a stomachache we blamed on a dietary intolerance whose source was more likely to be the anxiety we refused to deal with? Still, this conclusion felt like the ultimate betrayal.

Henderson reached that point, too. And then she came back from it. My marriage didn’t make it that far.

I have spent so much time trying to divide the person from the illness. Not just with my ex-wife or my grandmother. So many people in our lives are dealing with chronic health issues that impact their behavior and their sense of reality. I don’t have the faith in my interpretation of reality to stand strong against these conflicting interpretations. I often blame this on my aphantasia. Perhaps, though, it’s just a feature of being a social creature, a resident in a reality that is always co-created.

What’s them? What’s the disease? What is an issue of mental health and what is an issue of physical health? Sure, we start there.

Then we go through the trial and error process of managing symptoms with medication. All the side effects. All the behavioral changes. The steroids. The hormones. The antidepressants. The one time I insisted someone stop a medication it was Gabapentin. Is this a new symptom or are they simply being unreasonable? Are they lying or confabulating or gaslighting? Is this really how they feel or is it a side effect? How is it that we are made responsible for ‘compliance’ with doctor’s orders and when does doing what we are told slide into abuse? How does one remain neutral about issues of their bodily autonomy when we are being told by the treatment team to talk them into something? How does one remain respectful of their bodily autonomy when each choice they make has major ramifications for both of us?

Then comes debating the chicken and egg nature of the quantities of alcohol and painkillers. Is her speech slurred because she has not taken her medication or because she has taken too much of it? What is drug abuse and what is pain management?

What is them simply being a jerk? What’s understandable because they’re in pain? What’s understandable because they are under so much stress from navigating the healthcare system and worrying about money? Is there such a thing as being both understandable and unforgivable?

What symptoms are real? Can they not do that or do they simply not want to do it? When they get sick each time I have plans with my friends, is it a coincidence, is it psychosomatic, or is it a conscious control tactic? Where is the line between support and enabling?

Are we still allowed to have boundaries when someone at the nucleus of our universe needs us? Even when those boundaries protect the core of what we need to remain a functioning person ourselves? How is it that their limits rule both of our lives while mine are irrelevant? We know they would not truly be left to die if I were not here, so how is it impossible for me to step back? What is fair to expect of someone who is chronically ill? Would releasing them from the obligations of partnership or friendship or parenthood or adulthood dehumanize them in some way? What level of care am I truly willing to sustain in the face of chronic illness? What sort of relationship is this becoming?

Perhaps there is a way to debate the answers to these questions about the people we love most in the world without coming to hate yourself, at least a little. Or a lot, just in short bursts. I haven’t discovered it. I have also yet to discover ways to debate the answers without coming to hate them a little. Or a lot, in hot moments. Mostly, though, it’s the situation I hate. It’s the way the stars have aligned so I have found myself in this place.

When I was in my twenties and a girlfriend of mine ended up in the psych ward, I went to the library and took out stacks of books on mental illness. What did this mean and what was I supposed to do now? They left me more confused, with their quick fixes and tidy vignettes and labels — that seemed to apply to everything and its opposite. It’s the memoirs — with their stuckness, their complexity, their lack of any satisfying resolution — that have shown me how to make my own path forward.

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Heather Havrilesky said, in an advice column that had nothing to do with care work, “when you fully welcome sadness and anger, they often bring with them intense feelings of compassion and love and hopefulness.”

The Negative Space podcast hits on some big topics that are on our minds and rarely discussed, like how on appointment day we’re never just a spouse, we’re expected to become medical researchers, spousal caregivers deal with resentment, and caregiving impacts the mental health of the caregiver.

Do our friendships fall apart during caregiving...because our friendships were barely being held together before caregiving? “I want to convey that in friendship, we’re going to be inconvenienced. In friendship, we’re going to do things that we don’t want to do. In friendship, we are going to have to go out of our way and take initiative and be proactive and all of those things. And I think those all fit into the realm of “effort.”

“efficiency is the enemy of social life. You tend to enrich your social life when you stop and linger and waste time.”

Visualizations of American household types. The most common type of household is someone who lives alone.

If you're curious about how medical care works in other countries, here's the rundown on India. And here's a comparison of what it's like to give birth in NYC and London.

Even in countries with a social safety net, it's always been easy to fall through the cracks. Here's one story, recalled by the ten year old child of a woman who had a stroke.

Safety is an illusion.