Don't Tell Me to Take Care of Myself
by Sarah Kaplan
It has been weeks since I slept. My husband almost died. I am burned out at work. And people say to me in the most insincere positivist tone they can muster, "don't forget to take care of yourself."
As if taking a bath and putting lavender in my diffuser will somehow wash away the post-traumatic stress that I am experiencing.
People honestly believe they are delivering lifechanging advice when they end their time with me reminding me to take care of myself. What this really feels like is a shift of responsibility from the systemic failure that created my misery, onto me to create the solution.
Don't get me wrong, I love doing my best to make the world and my life better, but this toss out cliché is insulting.
I am a fulltime caregiver to my husband who almost died because of a rare brain injury. The systems that I have had to navigate have caused injurious stress for me. It is not just the fact that I have a husband who cannot work or drive; I am responsible for his healthcare and everything else. Caring for him is an immense amount of work and navigating the challenges of the various "care" systems in this country make it much more difficult.
Healthcare, long-term disability, and his insurance. There is no one door to get what you need with a welcome mat placed lovingly in front. It is a complex labyrinth every time.
And, of course, the forms. Forms for everything. And each form has to be signed by a doctor. My husband didn't have a family doctor. I had to ask the various specialists that took care of him in the hospital to complete the form for long term disability. They all pointed to someone else, as none of them wanted the responsibility of stating that he wasn't fit to work. This guy who had an infection in his brain and almost died. This guy who has been left with permanent brain damage, a seizure disorder, and chronic kidney disease requiring dialysis 3 times a week.
The first disability claim was rejected. The search for a family doctor wasn't going well. I got an attitude when I asked a healthcare professional to print out his record of his hospitalization so I could include this with the forms for the insurance company. Eventually, she did it and I am thankful.
In the hospital, I was told my husband would probably die in two weeks of a very aggressive cancerous brain tumor. Then I was told he would not die, as it wasn't a tumor, rather a very aggressive brain infection, and I had to authorize the medication to treat it, but that this medication would kill his kidneys. Then I had to drive him, one hour away, three times a week, to dialysis, until he was accepted in our local clinic.
Somehow, I had to go back to work full-time. How was I going to manage this? I had a very sick man on my hands with no help at all. I finally found a transportation service that I paid for that would take him to dialysis. This enabled me to stay at work for the whole day. But also, due to the brain injury, he couldn't stay alone for too long. It was too much, but I didn't have enough support, so I did have to leave him from time to time. Each time I left him alone I was terrified, always checking in. If he didn't respond to a text or answer the house phone in a timely manner, I would jump in my car and race home.
One of these times, he fell down our basement stairs carrying a plate of food. My house looked like a crime scene, as he cut his wrist from the broken plate, and there was blood everywhere. He had to get stitches, an MRI and a CT scan. More appointments, more waiting, more worry. And the fall caused two subdural hematomas. Not good for someone who already has a brain injury.
My fears were confirmed that day, and I realized I would have to fight harder to get homecare. I also made the decision that day that we would have to move to somewhere safer for him.
Before he was discharged, we had a meeting with a representative from homecare. We got home in October, and didn't have our first meeting with the case manager until March. Then another 6 weeks for the in-home care to begin.
In the heat of this, I tried different self-care options to stay sane, such as exercise, baths, essential oil, meditation etc. I don't know if I wasn't doing it right but somehow, I was still stressed. Methinks, there was something untoward at play.
Every time I have to interface with the healthcare system, I am always on edge, expecting to be treated badly. When I am treated with respect and kindness, I tear up and want to kiss the person I am talking to. I have had so many negative experiences with rude, judgmental and unkind healthcare professionals. I don't understand how it is allowed in healthcare to have individuals who have zero compassion. Kindness needs to be a required skill. However, there have been many great people on our journey as well.
All of these experiences are what has made me ill with post-traumatic stress disorder (PTSD). I am not unwell because I don't take care of myself. I am unwell because of many systemic failures. And my unwellness will not be healed from herbal tea and a meditation. While those things are very positive, they do not address the systemic realities that caregivers face.
It was all I could do to stay on top of my husband's care plan, work full-time and take care of everything else in our lives. This is why caregivers burnout. Caregivers need real change in healthcare. Caregivers need to be recognized as an essential part of the healthcare team. They need to be routinely asked about their health and then real support needs to be offered. Hospitals can start by developing policies and practices that include and support caregivers in their role.
Organizations need to take care of their own employees and develop/improve wellness programs so we don't have burned out staff in roles where they need to support other people who are in pain. All organizations need to make kindness in customer service a hiring requirement and part of on-going performance management.
Telling a caregiver to take care of themself invalidates the experience of caregiving. And the worst, is most people tell the caregiver to take care of themself in order to be able to take care of others. Caregivers don't even matter as human beings. We are machines that need to be properly serviced so we can continue taking care of those in our charge.
Imagine you see someone lying bleeding on the road. Are you going to help them, call someone, do something? Or are you going to say, "wow you look like you are in a lot of pain, you should really take good care of yourself. You can't take care of others if you don't take care of yourself."
Sounds pretty ridiculous. But THIS is what is happening to caregivers. All the time. While we may not be laying in a road visibly bleeding, many caregivers are suffering from PTSD. I would be over the moon if we could rid ourselves of this horribly frightening affliction by simply "taking care of ourselves."
Maybe the real cause is tied into the "taking care of others" and that is where the focus should be. There is something missing in the understanding of caregiving that simplifies the impact when these tired statements are uttered directing the caregiver toward self-care.
So next time you are talking to a caregiver, think about why they are burned out and how the systems they interact with impact them. Perhaps, the trite little line of suggesting self-care will resonate differently.
Maybe instead of telling the caregiver to take care of themself, we could open our hearts and offer something helpful.
Sarah Kaplan is an MSW(retired) healthcare professional & caregiver. She has social work degrees from McGill University. She managed a medical forensic program, lead change projects, focusing on caregiver inclusion in healthcare, new mental health programs & community strategic alliances. Her publication history began in 1991 with an academic article in Canadian Women Studies to current articles in journals and an anthology. She is currently working on a book about the health impact of caregiving. Sarah enjoys geocaching, libraries and advocating for a better world. She lives in Cornwall, Ontario. You can check her out on Twitter @sarah12192017.
Photo by Acharaporn Kamornboonyarush.
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