People often come to The Caregiver Space looking for instructions for achieving the impossible. Surely there must be something they can do to ensure their loved one recovers, or at least survives. Surely there is a way they can be more resilient, enough so they can provide 24/7 care while working full time and keeping the rest of their life running. Surely there is a way they can do all of this while being happy and grateful for the opportunity.
Nothing less is acceptable. Not when the life of someone they love hangs in the balance.
I asked Donna Thomson to share her thoughts, since she has a lot of experience doing the impossible.
“I think that love and loyalty colour our perspectives and skew them towards this false and dangerous idea that we should be able to meet the needs of those we love, no matter how great those needs are.”
She sent a hilarious Catherine Tate sketch to help us take a step back and recognize how our desire to help skews our perception:
I cringe watching the absurd sketch. Yet somehow it's entirely normal for someone to be discharged from the hospital to home under the assumption that a family member will perform the procedures that requires licensing for a professional to perform.
When someone begs to come home from the hospital we announce “I can do that!” — and just as often we're told “You will do that” by medical staff who need to clear beds.
In my French conversation group we've been discussing happiness and well-being. I'm less than conversational, so my contributions to the conversation involve a lot of baby talk and mime. The group is led by Tudor Petcu, a Romanian philosophy professor with an incredible amount of patience and good humor.
Bertrand Vergely, a French moral philosopher, joined us for a class session. I was intrigued by his discussion of happiness as a moral obligation. How can we be obligated to be happy in a world that contains so much suffering?
Certainly there are many happy people in this world of ours. I understand the way that the type two fun of athletes, those challenges that can be quite unpleasant while you're doing them, is more satisfying than the simple fun of things that are purely pleasant. I have the privilege of knowing people who are happy not despite their circumstances but regardless of them. Still, when I think of an obligation to be happy I automatically think of Arlie Hochschild's concept of emotional labor.
While the world prefers caregivers actually be happy, what's required is that we perform the emotional labor of appearing happy at all times. It's fine for us to boil with resentment and to wilt with exhaustion, so long as we don't subject anyone else to the truth of our internal existence.
Vergely’s vision of our obligation to be happy is quite different. His idea of happiness is the ability to see the harmony of the world and act in concert with it. Tudor explained that gratitude for the gift of life entails being aware of its hidden beauty. All of us have known the sublime that can be found in the most devastating of experiences.
Vergely described three types of happiness:
Happiness on the scale of an individual person, such as physical pleasure and material comfort.
Happiness on the scale of the community, such as the joys of collective celebration and community support.
Happiness on the scale of the universe, to view the harmony of the world.
During the conversation, Tudor described happiness as doing things for others, being responsible, and demonstrating love. The purpose of the individual is to make thoughtful choices that align with the happiness of all. To treat people well and, as Tudor put it, "to be a positive drop in this ocean in which all of us are swimming."
In this moment when meditation and mindfulness are en vogue, quieting the chatter of our ‘monkey mind’ is a widespread goal. We are only beginning to discover the diversity of the human mind. It’s from this angle that I listened to Vergely describe a spirituality in which he has an ongoing internal dialog with God.
When I asked Tudor to explain how one can go from an avalanche of sadness to a virtuous circle of happiness, he explained:
“We become the expression of our sadness and our happiness through our own desire to access a more profound understanding of reality. How can we do that? By assuming that we are not just flesh and blood, but sources of light, intellect, and spiritual resources. Using these resources, we learn the lesson of harmony with ourselves, the lesson of inner peace, and then we are able to contribute to a better world.”
I asked what advice he would give someone who needs to find the harmony of the universe in the face of incredible suffering. While he demurred to give advice, he suggested that we can always be stronger than our own suffering. With our mind we can view suffering as an entity that is separate from us. We can find ways to befriend suffering while it's with us.
I used to bristle at the idea that one can’t be considered an adult unless they've married and had children, these being two of the five markers of adulthood in my psychology 101 textbook. I haven't come to accept with this idea; I have come to understand it. Agreeing to be bound to the will of other people, people who we are simultaneously responsible for and unable to control, forces us to confront parts of ourselves. I imagine it's this knowledge of the self and acceptance of responsibility without control that makes one an adult. That’s a lot more difficult to track, statistically, than collecting marriage licenses and counting babies.
As Tudor explains:
“the deepest dialogue that we can have in this world is actually with ourselves because the biggest distance is that between us and ourselves. Developing such a dialogue we will have the opportunity to experience celestial happiness, which is a part of our being. We have so many inner resources but we are not aware of them because we are so obsessed with the world.”
In the video, Vergely quotes Fyodor Dostoevsky: “The problem of the modern world is that the essential has become the accessory and the accessory has become the essential.”
That probably brings to mind smart phones, fast fashion, and celebrity gossip. I think of bureaucracy. The chores we do in hopes that PCAs and visitors won’t judge us. Spending our time applying for support services rather than doing something meaningful with the person we’re doing all of this for.
Vergely reminds us that we need more than the basics. We need spirituality in order to illuminate our existence. We need the practical knowledge of finite wisdom to survive from day to day. We need infinite wisdom to experience the essence of life and fulfill our destiny.
I asked Tudor how people can be happy when they spend their life enacting the will of the person they're supporting, rather than their own. He replied:
“They are making sacrifices and sacrifice is proof of offering happiness to someone who's suffering. Who can do that? Only a person who understands the depth and logistics of happiness.”
We discussed the incredible sacrifices care work can require. He added that “love and caring are the best gifts we can offer to anyone at any time.”
This answer made me think of the times my attempts to support people have gone poorly. It was the times when this care was not given freely. I wanted them to comply with my vision of what their life should be like — I thought I knew what was best for them or I wanted them to follow doctor’s orders. Or I was reluctantly fulfilling an obligation. In these times, I was not offering the gift of care. I did not understand the depth and logistics of happiness.
Even when care is freely given, there are limits. Donna doesn’t want to set limits to the care she provides her son. Those limits are simply there, a fact of being human. Providing him with the support he needs requires accepting the limits of her own capabilities… and a battle for support.
How do we accept that we are not capable of doing what must be done? She pointed out how in the context of paid work we wouldn’t consider it a failure to need help. Donna reflected on how she handled it:
“I think the answer may lie in a statement of ‘I can do this. But I cannot do that.’ A strong declarative statement (a document is best so it can be shared) about what you will do and what you cannot or will not do.
I did that when I was appealing to the province for substantially more funding to help us at home. Mind you, I had no more pride left — I was completely broken by then. But writing out what I could do and in another list what was needed that I could not do really helped me understand with clarity that I was doing my best and my best was pretty good. My best was already superhuman even though it didn't meet all of Nick's needs.”
Vergely tells us that sadness doesn't require work. It’s easy to be sad. It's happiness that requires work. It's a battle to remain happy. It's a battle to remain open to seeing the harmony in the world.
Does care work break people down because the amount of labor required keeps them absorbed in finite knowledge? People make it through years and decades taking it one day at a time, moment to moment, doing what needs to be done. Their tasks become drudgery. The workload leaves them without the resources to fight against sadness. Their community is too self-centered to offer anything besides bromides and has no interest in listening to the things that need saying. They become mired in a superficial world, where the only thing of depth is suffering.
The idea that caregivers are saints has never sat well with me. Now I suspect I've been misunderstanding what that means. I have been overlooking the spiritual power of care, the mysticism of helping someone else be themself.
The grinding monotony of feminized labor, the exhaustion of performing tasks you did not choose, can be many things. Reading the history of Portugal, convents play a variety of roles. The convent is a place girls were sent to be educated. Women and children are placed there for their protection from war and plague. The elderly and infirm were nursed in convents. Women were imprisoned in convents for displeasing men. Other women went to the convent willingly to achieve spiritual freedom.
Of course this all brings us back to the title of Donna's first book, The Four Walls of my Freedom.
We know that people are not broken down and burnt out simply from the amount of work they do. Flow states are transcendent. Perhaps those of us who have been broken down and burnt out by our care work experiences have been missing the critical element of the celestial experience.
If you’re looking for very practical advice on how to do the impossible, check out Harriet Hodgson’s advice.
One of the reasons support groups can be so helpful is that people can give you personal suggestions based on what worked for them. Another great resource, which just launched, is the Disability At Home website, which shares tips and hacks from people’s personal experiences.
Donna’s list reminded me of this article on what goes in a care binder.
My thoughts about how to become an adult have been influenced by Juniper Cameron’s writing. Here’s a recent post on integrity and self knowledge.
Denise Brown is offering free Kindle versions of her books on July 20, 21 and 22.
If you’re feeling cooped up at home, the Family Caregiver Alliance has a bunch of virtual travel events coming up.
The P4P Planning Network in Canada has an upcoming webinar on future planning with siblings in mind.
Typically I only share events that are online and ideally are free, although I occasionally share things with fees that seem relatively accessible. I’m breaking that trend to let you know that there will be an Indigenous Disability Health and Wellness Gathering in Victoria, BC from November 15-17. I see so little attention paid to indigenous care work, I wanted to spread the word. Hopefully this in-person event will also involve some online components.
In my religious tradition, we understand happiness to be: one who is satisfied (content) with what s/he has
I love the idea of the happiness of the universe!