My thoughts are spinning through my head as I write this down tears are running down my cheeks. It is very sad how beloved persons are slipping through our fingers. The brain is a strange peace of equipment and it can do strange things. I just drove home from a night shift as my mind was running around in circles.
Thinking about the roller coaster life that I am leading. Outside there is nothing left of the summer weather as rain bashes on my screen and the smell of a died out fireplace enters the car. My wife is having trouble again with her anxiety, our kids went to new schools this week and my mother in law has been taken into care as she is suffering from Parkinson's an Dementia my father in law is not able anymore to take the full day and night care of her. It is pretty tough for both of them. But the home were she stays is giving her good care.
Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.
But dementia is a physical illness, too and a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.
The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. I think it suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.
“When family members understand the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions,” I would say that: “Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care.”
Our mother in law is suffering from Parkinson's disease and to me there are a lot of similarities to Alzheimer's.
As a teenager, I saw a neighbour decline from Alzheimer's disease. During his final months, he was repeatedly treated for infections and put in restraints or sedated to control agitation.
“Seeing my mother in law in that state is so distressing that I will eventually stop taking the grandchildren to visit,” Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating which in turn, often leads to further treatment.
Geriatricians say a large part of the problem is that the patients are unable to make their wishes known. In the absence of a living will, family members often struggle with guilt and are afraid to stop the aggressive treatment because they do not want to be seen as abandoning a loved one in mental decline.Doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care.
When I go there on a Sunday to visit my mother in law and take her for a strawl, I enjoy the home that breathes slowly and reminds me that on the outside of this building the real crazy people are running around in circles. Driving in a full panic state with their SUV with the kids in the back to all kinds of sports. That is why I do not like the pressure were we are under nowadays.
I saw a dear friend a few days ago. I stopped by to ask her how he was doing, how his family was. He looked up, voice lowered, and just whimpered: “I’m so busy… I am so busy… have so much going on.”
Almost immediately after, I ran into another friend and asked him how he was. Again, same tone, same response: “I’m just so busy… got so much to do.”
The tone was exacerbated, tired, even overwhelmed.
How did we create a world in which we have more and more and more to do with less time for leisure, less time for reflection, less time for community, less time to just… be? Welcome to the land of Burn Outs.
This disease of being “busy” (and let’s call it what it is, the dis-ease of being busy, when we are never at ease) is spiritually destructive to our health and well being. It stops our ability to be fully present with those we love the most in our families, and keeps us from forming the kind of community that we all so desperately crave.
Since the 1950s, we have had so many new technological innovations that we thought (or were promised) would make our lives easier, faster, simpler. Yet, we have no more “free” or leisurely time today than we did decades ago.
For some of us, the “privileged” ones, the lines between work and home have become blurred. We are on our devices. (getting the bended neck syndrome) All The Freaking Time. Smart phones and laptops mean that there is no division between the office and home. When the kids are in bed, we are back online.
The reality looks very different for others. For many, working two jobs in low-paying sectors is the only way to keep the family afloat. Twenty percent of our children are living in poverty, and too many of our parents are working minimum wage jobs just to put a roof over their head and something resembling food on the table. We are so busy.
The old models, including that of a nuclear family with one parent working outside the home, have passed away for most of us. We now have a majority of families being single families, or where both parents are working outside the home. It is not working. It is modern slavery to pay all the bills from the tax office etc.
It doesn’t have to be this way.
I am not asking how many items are on your to-do list, nor asking how many items are in your inbox. I want to know how your heart is doing, at this very moment. Tell me. Tell me your heart is joyful, tell me your heart is aching, tell me your heart is sad, tell me your heart craves a human touch. Examine your own heart and explore your soul, and then tell me something about your heart and your soul.
Tell me you remember you are still a human being, not just a human doing. Tell me you’re more than just a machine, checking off items from your to-do list. Have that conversation, that glance, that touch. Be a healing conversation, one filled with grace and presence.
We need a different relationship to work, to technology. We know what we want: a meaningful life, a sense of community, a balanced existence. It’s not just about “leaning in” or faster iPhones. We want to be truly human.
How exactly are we supposed to examine the dark corners of our soul when we are so busy? How are we supposed to live the examined life?
Somehow we need a different model of organizing our lives, our societies, our families, our communities. I want my kids to be dirty, messy, even bored and learning to become human. I want us to have a kind of existence where we can pause, look each other in the eye, touch one another, and inquire together:
Let us insist on a type of human-to-human connection where when one of us responds by saying, “I am just so busy,” we can follow up by saying, “I know, love. We all are. But I want to know how your heart is doing.”
The Old Sailor,