“There are four kinds of people in this world. Those who have been caregivers. Those who currently are caregivers. Those who will be caregivers. And, those who will need caregivers.”~ Rosalynn Carter, Former First Lady
Are we there yet? Are we?” That’s what my kids always asked about 15 minutes after we left on a road trip. And repeated, with increasing frequency, as we got further from home, but still had a long way to go.
“We aren’t there till we get there,” I would say. And, that’s pretty much the story of Caregiving. We aren’t there till we get there.
Are you there yet?
Has a recent diagnosis of a spouse, sibling, child, parent, or someone you care for or care about thrown you for a loop? If Caregiving is a new role, do you worry that you aren’t up to the job? Maybe you are already on the Caregiver’s Path. How far along are you? Perhaps you’ve been Caregiving for awhile, and you’re worn out, exhausted, feeling that your Careé (care recipient) is slowly killing the Caregiver—which would be you.
Traveling the Caregiver’s Path, we all go through stages, although they may come at different times for each of us. Regardless of where you are now or what lies ahead, our journey begins when we travel from Denial to Acceptance. Along the way, we will pass a lot of Checkpoints and hurdle a multitude of Mileposts.
Sometimes a Caregiver’s Journey is jump-started with no advance warning. When it’s sudden, like a traumatic accident with serious injury, and you take a call then head to the ER, there isn’t much time to think about what you will do down the road. It’s less about action than reaction. The same applies when first given an unexpected diagnosis of a daunting disease like pancreatic cancer or when abruptly advised that someone has suffered a paralyzing stroke or catastrophic war injury. You must deal with immediate concerns: paperwork, insurance companies, tracking down specialists, lining up physical and occupational therapy, who to care for the family if that person has a spouse or children at home. You are in orchestration mode, a director of care rather than a direct Caregiver.
More often, though, the Caregiver’s Journey is a gradual process. You are aware of someone’s decline and, probably with some trepidation, are observing signs suggesting you will have to step in soon, that they can’t go on as they are without help. It’s rather like watching the weather channel and knowing that a storm is predicted. But it isn’t here yet (thank goodness!).
Same goes with warning signs of an aging parent, spouse or sibling or someone diagnosed with a disease that will progress slowly. The outcome is fairly predictable. You may not quite know when the storm will hit full force, but you know it is coming. It’s sad, but it is not a surprise. You have time to prepare, to plan, to decide who, if not you, will be the Caregiver.
The road ahead
Either way—sudden event or gradual change—you are faced with some hard decisions. Will your Careé need to be placed in a facility? For how long? Can you bring them home? If so, who will care for them, and if you, how much care can you provide? Caregiving is exhausting both physically and emotionally. Are you up to it? Do you know where to find someone to come in and help you? How do/will you pay for it?
The Caregiving Journey is not all solid concrete. Some places are smooth, others are nasty to navigate. There are no locked doors or chain link fences holding you in. You are free to stay on the path or step off. Or fall off, if you are careless. The path has no guardrails. For each of us, our Caregiver’s Journey is an exercise in free will, an educational sojourn. We must take it on by choice, because we want to, not because we have to. Along the way you learn to view options as opportunities, develop the resilience needed to sustain you over the rough spots, and gain the knowledge you need to find your way.
Whatever you decide, to be a direct Caregiver or a director of Caregiving, a big question is: Who will pay for it and how? Caregiving is costly, and the cost is growing. In the next issue, we will talk about care costs and how to pay for them.
Illustrations by Bryce Chismire
Kathryn (Kate) Burke is the author of the Caregiver’s Journey. Find out more about how to navigate the Caregiver’s path here, caregiver-journey.com