Thank you to everyone who has sent in good wishes regarding Mom. Her sleep situation isn’t really that bad because she always has the option of catching up during the day. So she’s been good for several days now.
As aging and dementia would have it, Mom now has more good sleeps than she’s had in about 40 years. That said, her last little spin saw her have two nights of max two hours sleep before she’d get up and need to be resettled.
She’d be back asleep quite quickly. But as care-giver, you have to stay awake to stand by in case they wake right back up. People often talk like that’s something significant. But any parents of kids who are not yet sleeping through the night are familiar with this role and type of exhaustion well. It’s common.
We work on trying for full nights because her getting better sleeps isn’t only healthier for her, but they also make life better. When Mom is super tired she is like anyone else –that’s when she’s the least cooperative, most combative, and most irrational.
That’s no small thing, because handling a combative, confused, determined 94 year old is much harder than you may first imagine. Just think: you can’t restrain them. And they fall easily. Yet avoiding being drugged into submission was the central fear they asked me to protect them from. So what possible strategies remain to prevent them from going dangerous places?
On top of that, how positively do you imagine they respond to someone barring them from going where they want to go? They can get nasty because in their reality we are being outrageous. That alone can create a weird kind of stress because you love them.
So sometimes the hard work is to stand in a doorway to repeatedly and calmly explain the same thing for two hours, while being verbally attacked by someone making zero sense. The resilience and care that a person meets those attacks with, is ‘love’ in action.
That’s why my parents wanted to be at home and not in a home. Without love as a motivation, there is often no real alternative to excessive wandering and meddling, except drugs or confinement. A care home can’t have my Mom constantly abusing others around her because she thinks they are other people.
But even in this ‘better scenario,’ both the caregiver and the people in care can still perceive they are each being mistreated within their own realities. And all of that can happen while, in their shared reality, the stakes of a dementia patient going out into a cold and snowy night can often have life and death consequences. There simply is no way to avoid these realities.
So the stakes are life and death; as high as they get. And that is added to the reality of incessant cooking and laundry, all while smelling like old people’s bathrooms and cleaning supplies.
In addition to the general daily indignities, as most caregivers know, the price is almost always a personal life, a romantic life, significant financial impacts, and the fatigue-induced dissolution of a network of unattended-to friendships. Virtually every book on the subject will tell you to anticipate those things.
On the other end of things, even the kindest people being cared for often aren’t capable of showing appreciation due to the challenges of their illness. Which means that all of a care-giver’s good work and sacrifice can easily go unrecognized, and remain forever-invisible to the world thereafter.
So it’s generally unpleasant, it’s difficult, and there are no notable rewards. All that being the case, there appears to be no motivation to do it. And yet, situations like mine are common for tens of millions of people around the world. Maybe hundreds of millions.
So the question is, why does anyone, let alone a guy who’s good at enjoying his life, choose to take on what appears to be such a difficult, often unpleasant, often invisible, high-stakes, opportunity-stealing, life-absorbing role?
Why does any care-giver do it? Because it’s too hard to be about ‘joy.’ Not that I’m against joy. Don’t get me wrong, I’ve had more than my share of it. We still generate quite a bit here as is, and I’m all for more. But I’m also not myopic. I also love chocolate cake. But the idea of chocolate cake for the rest of my life feels pretty sad.
Focusing on just ‘joy’ means we are looking at the waves of life and we’re overestimating their peaks. We have too much fear of their troughs. And that desire-and-fear duality causes us to focus on only two things, and in doing that we fail to appreciate the value of life’s flow.
Without really realizing it, people living in ego talk and act like it’s possible to freeze the wave of our lives, and then select out the narrow section of the wave’s peak, with the intention of just repeating that high, exactly like a drug addict.
What they are forgetting is that, if they did maintain that new high, that would just create a new flat line –a new ‘normal.’ To pursue that goal is to be in a perpetual state of ego and to deny what ‘reality’ truly is.
Reality is not some battle between peaks versus valleys where the ‘winners’ reach more peaks. Life is a motion that knows that each individual wave cannot exist without both peaks and troughs. Our appreciation of that sacred inevitability is what it means to say we ‘end suffering by accepting there will always be suffering.’
That is why so many different types of gurus talk about ‘letting go.’ We want to stop clawing our way to the peaks, and to stop clinging in some vain attempt to prevent our descent into its valleys. Rather than resist reality, we want to flow with life instead.
This means we no longer want ‘to be liked.’ We don’t want to do the ‘right’ thing because it looks good to others. Instead we simply are our truest self and we trust that aspect of us to know our way. Then, those that can see us for who and what we are, will be attracted towards us as we will be toward them.
This is what it is to live in ‘alignment’ with oneself. We do not do things because they are ‘right’ or ‘good’ in the eyes of others or society. Instead, we have those actions to come from our hearts. In doing so, we not only connect with others more meaningfully, but we also form a sense of courage, determination and resilience that emerges naturally within each of us. In short, we have found our ‘path.’
When we are in alignment with our ‘self’ at any given moment, even the dirtiest jobs take on a simple clarity. This is not to say we will never feel down or disheartened for short periods while we are tired or hungry and just worn down. But overall, what does not change is our sense that what we are doing is an important and inevitable part of being who we are.
We are not other people. They are not us. Each of us, if we quiet our busy thinking, feels compelled towards some actions while being neutral or resistant to many other courses of action. Some find what I do to be insane. I would find it insane to not do it. We should trust those senses to guide our lives.
In the end, some of these actions we’re compelled to do will be very enjoyable. Some will not. What makes them right for us, and peaceful to our soul, will not be whether or not they are ‘right’ or ‘good,’ or ‘easy’ or ‘enjoyable.’ What will make them peaceful is that despite other’s feelings, those roles feel like ours.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.