Recently, a friend who is the primary caregiver of her mother posted a meme. Her mother has Glioblastomas a cancer with almost a 0% chance of long-term survival. If caught early, surgery, radiation, and chemotherapy will give you more time, not a cure. It is brain cancer so you also get to watch a highly educated distinguished speaker utter scrambled words. The cruelty is that depending on the location of the tumor the patient knows simultaneously what they are trying to say and that they are not able to say it. The meme, “Watching someone you love suffer is sometimes worse than suffering yourself.”
I immediately wanted to tell her a joke I learned when I was working with a group of healers. My mystical aunt, who sewed me into her family tapestry, was teaching me connective tissue release. It is a massage technique and it can be extremely painful but once the connective tissue releases the pain ceases and the movement is free and a fuller range of motion is restored. It can be a real miracle. The joke goes, “It hurts me to see the pain in your face and to hear the agony in your voice. So, excuse me while I turn up Enya on the CD player and close my eyes.” My fiend the caregiver can appreciate dark humor and at another time it would make her smile and laugh. I also know what it is like to be the primary caregiver and sometimes nothing is funny.
Twenty plus years ago, I was the primary caregiver for my friend who died. It has taken me nearly the full twenty years to understand and process that experience. This is my unasked-for advice about the shit show of death and dying in a society that does everything possible to distance itself from death and dying.
If you are the primary caregiver whether you like it or not you are on the healer’s journey. The biggest miss conception about the Healers Journey is that you are some mystical person capable of magic, in reality, you are more like a dog, an Australian Blue Healer. A shepherd that keeps the dying from falling off the cliff prematurely. It is a journey no one wants to take, down a shitty road, heading to a destination that no one wants to arrive. The job is to help your person keep their dignity. It can be a daily job to not let them fall into the ditch of despair or wander off into the valley of isolation, anger, and regret. Because no one should die there. That is an awful death. About half way through, it will dawn on you that there is no destination, you are just traveling until they, not you, are too tired to go on. The hardest part of the job is to navigate the world where everything has a beginning and an end, in a culture that tells us that death is a failure. Giving someone permission to die with dignity and peace shouldn’t be such a fight.
Then there is the permission to die. Every single person will die and every single person has their own unique relationship and language to the process of death. We are biologically programmed to fight it; the continuation of life demands that we fight it. Until our biology fails us then there is this surrender that can happen. In our lifestyle obsessed American culture, it is difficult to explain that there is a difference between the time to fight and the time to surrender. Surrender means giving up and giving up equates to being a loser. The cultural denialism that all life cycles come to an end is damaging to the dignity of the end of life.
If life demands a fight: then death demands grace.
The charity slogans, in my opinion, do the most harm. Charities are focused on raising donation dollars and to do this they sell a moral imperative about being a fighter, a warrior, survivor, they battled, or they lost the fight. This is excellent at raising dollars but the cost is that people who do not survive may be left feeling like losers. The caregiver can be left feeling they failed the person they loved the most. No, they are not a loser if they die, no one gets out of this alive, no one. Dying sucks but death is just as valid and honorable to the cycle of life as being born. The compassion of the human spirit demands that we remind them that there is no indignity in laying down with grace and going peacefully on their terms. If life demands a fight: then death demands grace.
The daily routine returns and in a sense of normality the fact that they have passed is no longer constant in the forefront of the brain. You suddenly have something important you want to share with them. You dial the phone and the loss hits all over again tearing open a partially healed wound. At six months, everyone else will have moved on and you probably not. No one will tell you it takes almost a year for your head to come out of the fog. So, I’m telling you it may take a year for your head to come out of a fog. It may also take a year before you realize your head was in a fog. One day you will go, “Oh I was in a fog…that is what a fog is.” This is also a really convenient time to pick up an addiction like alcoholism, shopping, sex, food. Don’t. Go to therapy, get support, or just become a fanatical annoying yoga or CrossFit or whatever and cry a lot. It is easier and cheaper to stop being a fanatical CrossFit Yoga a-hole than an inpatient rehab. If you need just allow yourself to be an A-hole for a while.
Sometimes the caregiver is wounded and that wound will serve as a calling into a whole new life. Friends and family will romance this as a blessing, a blessing because you are so much stronger because of the tragedy and it was actually for a higher good. More often than not, you are not magically transformed, you are just wounded.
There is no escaping it. If you do everything right you will get wounded. If you lean out, and become emotionally detached thinking it will hurt you less you will still get wounded. However, now you will also have guilt about being detached. I detached a few times, and I was still wounded, and I still have guilt about it. When you have the wound from the Healers Walk you know that you showed up and were present for another person for the most vulnerable time of their life. I wish it paid the student loans or got someone a new car! Or even made me a better person. It put me into homelessness and debt. It halted my career projection for more than a year. People said things like I was brave and a good person as they quickly distanced themselves from me as if my compassion would be contagious and they would care for another person to the point of financial ruin. I would just watch them run off to their good jobs that pay their mortgage on that split-level modern in their gated planned community that keeps them safe from the realities of death and dying. I was now so closely associated with death and dying; I was to be avoided. There is a substantial financial and social ranking cost attached to being a caregiver.
I did it because I loved my friend, and he needed me. It would be really shitty of me to want a gold star for that. But, I would really like to have a gold star if I could trade it to get him back. I still miss him.
I don’t regret what it cost me, but I still resent how I was treated by those on the side lines.