"Hindsight is 20/20!"
"You know, in retrospect..."
"Looking back now, I'd..."
"If I had it all to do over again..."
"If I had known then what I know now..."
Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often.
I know I am. A LOT a bit often!
Why is that?
Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience?
Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats.
But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it.
What the **** just happened?
Where do we go from here?
Get our heads back in focus, get info, get a plan.
Stand back up:
We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on.
Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan.
The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.")
Any caregiver is familiar with this basic framework.
Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle?
There's the rub.
That's the part that's not so simple.
The GOOD news is: that's the part where other caregivers are the best and most helpful resource.
What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care?
At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example.
To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers.
LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community).
(Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center).
Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome!
This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of?
How can you catch the signals ahead of other curveballs?
To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other.
Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver.
I can't wait to "see" you there! Thank you, my friends!