"Why don't you join us?"
"Can you come? Want to go?"
"I'll check my schedule."
"I will try..."
"I can't. Thanks, though! Maybe next time!"
Doesn't this sound like the common Caregiver script?
I know it does in our house.
Invitations turned down and plans not made.
The secret is:
Even if I thought I could go to the event, I wouldn't want to.
Even when I think the potential plans are logistically possible, I always feel as though I have increased the chances of a setback or emergency just by operation of being absent. It only rains when you leave your umbrella at home. Your phone only rings when it's at the bottom of your bag.
Being absent seems to be the antithesis of being helpful, and being a Caregiver at any level of involvement means being helpful, right? Present. Aware.
If I am neither present nor aware, how can I be helpful? It cuts straight to the "identity" of "Caregiver."
No human can be in two places at once. We all know this.
...But it doesn't mean we don't try it anyway. We teleconference, telecommute, telephone. We Skype and FaceTime into doctor appointments. We do research late at night, elsewhere on the internet and in forums like this one, only to call our loved one's doctor back long-distance the next day to ask more questions.
So, in the moments when we are not present in any way, actual or wired, how are we being *helpful* in any way?
We make ourselves available even when we aren't actually available, so why would we expect any diminution in our commitment to be totally available in lieu of leisure time?
No time is disposable. If anything teaches us the preciousness of time, it's cancer. Brutally and unmistakably. So...what is this "leisure time" you speak of?
I do not like to miss my mom's appointments. That's my Caregiver profile. (And we will talk about the insidious nature of competition and advice between and among Caregivers later this year). Basically, every situation is different just as every family dynamic is different. Patients and Caregivers are people. No one approach works easily as well for one person as for anyone else. (This is the same as what the oncologists tell you about treatment, so it only makes sense, I suppose).
Because I am the kind of Caregiver who balks at missing appointments, my experience is peppered with unmade plans and unmet deadlines. But every Caregiver at any distance or availability feels the same: the waiting, the walking on eggshells, the wondering, the lack of certainty. It all takes an emotional toll. Don't forget: "toll" means "cost."
No Caregiver does what he or she does in order to be called a saint or a martyr. The vast majority of us are not even close to completing the to-do list, and are still way behind on everything, but just doing what we have to do. So: why is it that the support systems in place for the Caregiver always make it seem as though taking breaks is best way to operate? Why are vacations encouraged? "Why don't my well-meaning friends realize how much it hurts when they ask me if I can take time for myself?"
The bill has to be paid. The dinner has to be cooked. The Rx has to be filled. These come first. They are time-sensitive, life-sensitive concerns. They aren't the hurdles we have to jump; rather, they are the very track we run on. It seems the spa days and morning walks and movie dates--let alone vacations--become the hurdles. The extra effort. The energy mustered at the end of the day, the end of the list, if at all.
It is my personal conviction that "self-care" for a Caregiver is not necessarily feasible. Not to the extent that it is discussed and recommended.
It is said that "you can't pour from an empty vessel." But doesn't the vessel take time to refill? And pouring has to happen anyway...
It's a weak analogy.
It is also said that you can't take care of anyone if you don't take care of yourself first. Like the oxygen masks on the airplane: this is another metaphor you see in the self-care conversation quite frequently. A metaphor that is particularly painful in a lung cancer context. If someone needs the mask more than I do--literally and figuratively--I simply have to give it over first, and secure mine later.
This week, on our monthly Twitter chat, we will be discussing the idea of taking care of yourself first. Is self-care possible? Is burnout avoidable? Let's talk!
We will also be sharing some of LUNGevity's many resources for Caregivers, such as this: http://www.lungevity.org/support-survivorship/caregiver-resource-center/caregivers-job/caregiver-fatigue.
Join us Wednesday (3/1) at 8pm EST on Twitter. Just follow #LCCaregiver to participate!
As always, I look forward to learning from you, and to coming together as a community!
The topics we will discuss are below. Take a look. Sleep on them. I am excited to hear what you have to say!
Love and thanks,
What are some of the challenges you experience as a Caregiver?
Many #LCCaregivers don't get the help they need, or they take on more than they are able to handle. Do you?
What are some common misconceptions about Caregiving/Caregivers?
Looking back, what are some warning signs of #LCCaregiver fatigue/burnout?
How can a new #LCCaregiver prevent caregiver fatigue/burnout?
What advice can you share that may help lessen the burden of Caregiving?
Do you feel you have the time to take breaks?
Do you feel the need to take time for yourself?
Do you feel guilty when you take time for yourself?
Do you feel like less of a Caregiver when taking time for self-care?
What do you do for self-care?