Care Planning and My Caregiver Binder


Care Planning and My Caregiver Binder


And after all, what good is a plan if you’re not tracking how you’re doing against it? It doesn’t matter if we’re talking about a care plan, business plan, or any other type of plan--my answer is not much.

Care planning was overwhelming for this family caregiver. It still is on some days now five years into my journey caring for Dad as he lives with Lewy Body Dementia.

It is most commonly thought of as a point-in-time conversation in a clinical setting, after a diagnosis of one kind or another, about the impact of a condition on a patient (and family’s) life. But care planning is more than that for me as Dad’s caregiver. It isn’t an annual conversation with a corresponding report for me to sign. Care planning is a living and breathing process, not a static one to be set every six months and forgotten until the next meeting.

Thanks to some great advice from wonderful people, care planning is more than a box that needs checking for me. Care planning is what allows me to focus on what matters most for Dad day-to-day, week-to-week, and month-to-month--helping Dad live the best life he can while Lewy Body tightens its grip.

The family caregiver’s job description

If I were to sit down and write out the job description of a family caregiver, inclusive of all the responsibilities and daily tasks the job requires, the output would be similar in length to the Dead Sea scrolls or one of those receipts we all get when checking out at CVS.

In our case, the headings on the job description would likely read something like this:

  • Help Dad find fulfillment and purpose
  • Keep Dad safe
  • Ensure people see Dad and not just a disease
  • Make sure Dad is comfortable

Under each of the headings would be pages of sub-bullets detailing countless daily tasks required to make those headings a reality. It’d be a varied and voluminous list ranging from toileting and bathing to meals, activities, and connection to the rest of the family.

And clearly implied, if not explicitly stated on it’s own sub-bullet, would be one of the most difficult responsibilities for me of all. Controlling the chaos.

Plan the work, work the plan. (And be ready to adjust.)

Some people thrive amidst chaos. I don’t. So on top of managing all of the stress, fear and uncertainty that accompanies caregiving, I also needed to control the chaos. If I didn’t, the weight of it all would break me and my eyes certainly wouldn’t be on the prize.

Care planning was the first step in alleviating uncertainty. The guardrails our initial care plan provided were an immediate source of comfort. And each time it changes, my caregiving gas tank is refilled. Energy renewed. It helps me feel on top of things, I suppose.

The second, most sanity-saving step for me was actually organizing around the care plan we’d put in place with Dad’s neurologist and other care providers. I vividly recall the suffocating feeling in my early days as a caregiver. I was sad and uncertain and scared--of course--but it turns out that it was the administrative burden of the job supplying most of the weight. Planning evened out the weight and made it feel less heavy. I had planned the work. Now I needed to find a way to work the plan.

Go back to high school

I’m forever thankful that a fellow caregiver, whom I met at a support group back in the early days of my journey, suggested I organize around the care plan. “Go back to high school,'' she said. “Go to Staples. Buy a binder. Buy extra index dividers and note paper. A three-hole punch too, if you don’t have one of those.”

Once I’d done that, this friend helped me step back to see the proverbial forest through the trees. She suggested I take inventory of all that goes into caring for Dad day-to-day.

  • Health & diet
  • Activity and observation
  • Schedules
  • Required supplies
  • Legal
  • Insurance
  • Family and personal
  • Helpful articles and resources
  • Lists of care providers

Once we’d done that, the inventory items became tabs in my Caregiver binder. More importantly, the binder became our one source of truth.

  • Notes about Dad’s day: How long he slept, what he ate, how much he drank, what activities he did, how much exercise he got, and details on his toileting.
  • Schedules: Who saw Dad last, who’s seeing Dad next, and how those visits went.
  • Supply list: Do we need clothes? Personal hygiene items? Incontinence supplies? Rubber gloves? Exercise equipment? Walker? Wheelchair?
  • Legal documents: I underestimated the comfort I’d receive from having copies of important documents in one place. Power of Attorney. Health Care Proxy. Advance Directives.
  • Insurance: No rocket science here and these aren’t top of mind each day, but they’re important. They’re things I search for at inopportune times, so why wouldn’t I have them in this binder? Putting copies of insurance cards here reduces my stress because it’s one less thing for me to think about. I know where they are by default. And others will too when I’m not around.
  • Family and friends contact list: This was a bit of a stretch and maybe not all that necessary, but it gives me comfort knowing there’s a list of people to call for the helpers we have for Dad to reference when I’m not home.
  • Articles and resources: Maybe this was me getting carried away again, but I like having one place to store articles and lists of resources for myself and for others who help take care of Dad. Any time I come across an insightful article either about Lewy Body or I deem pertinent to Dad’s situation, I print it out and throw it in the binder. Some of it is inspirational, some is aspirational, and all of it is comfortable knowing it’s there.
  • Lists of care providers: I have all of these names and numbers, but the reduction to my stress knowing they were all in one place surpassed my expectations. Dad’s neurologist, primary care, physical therapy and occupational therapy, and home care agency. All of them. In one place.

When we put all those things together in one place, we were left with a gigantic orange binder that wouldn’t fit in any of my daughter’s school backpacks. But I love that thing.

It’s how I control the chaos. Our oversized and bright orange binder is an objective archive of how Dad’s doing day-to-day. It’s also a single source of truth and reference for all the bits and bites of his care. More than anything else, though, our beloved binder is the fact-based record of how we’re doing against Dad’s care plan. The binder shines a light on how he’s doing, how we’re doing, and opportunities for improvement (and adjustments to the plan!).

And after all, what good is a plan if you’re not tracking how you’re doing against it?

Not much.

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Katherine Spong

Love this article. The binder is a brilliant idea. We are in Canada so keeping track of prescriptions is online for our province, as are the medical records although each new hospital always asks. I have a binder started but this design is so much more effective. Thank you for sharing that.