Introduction: The Caregiver’s Toolbox

By Carolyn P Hartley, MLA and Peter Wong

Dear, dear Caregiver:

Please accept our highest praise to you for being someone’s caregiver. Most likely, you’ve seen this role heading your way for a while. A recent diagnosis. Aging parents determined to stay in their home. An accident that positioned you as the in-house rehabilitation expert. A beloved child with special needs.

You’ve talked to family, friends, a spiritual leader for support, gathering resources to help you on this walk. If you are like the 36.5 million other caregivers in the United States right now, you’ve used up vacation and paid time off, wondering how you will manage time off and duties piling up. If you are among the total 65.7 million Americans who at some time have been caregivers this year, you have a story to tell. Some of your secrets for keeping track of medications, physician appointments, diets, or helping loved ones get in and out of bed or chairs, bathe, or get dressed have made their way into the halls and kitchens of friends and caregiver communities. Thank God for you! Your care contributes more than $375 billion per year in unpaid clinical support. That number is rising because of people living longer (hats off to the Boomers) but fewer people to manage care. Some caregivers tend to more than one person.

If you are like the average caregiver, you spend about twenty-two hours a week providing support. The good news is that in 2014, your weekly devotion topped nineteen hours, one small sign that the aging population may be a bit healthier due to medications, exercise, access to care, long-term care insurance for home-based care, or the rapid expansion of home health agencies.

While love and commitment are at the core of your caregiving, 86 percent of caregivers are untrained, according to a study by the National Alliance for Caregiving. For example, caregivers learn the in-home requirements for managing a patient with Alzheimer’s disease or cardiovascular disease. You will learn how to manage the medical bills not only to pay them but also to determine whether they are accurate. You wonder whether your health will be compromised and question whether someone will step in and take over for a while.

My friend, you are not alone. We’ve been where you are, and we’ve done it more than once. It wasn’t our choice either, but when it was our turn, like you, we stepped up and started making spreadsheets. We’ve hugged family members so tight that we thought they’d pop; we sat in coffee shops retelling stories that everyone had already heard, but we just weren’t done saying what needed to be said. Yes, we held back a few stories that will just have to wait. We got through it with the help of our Lord Jesus Christ, though there were days when we asked the Lord to just cover His ears.

The Caregiver’s Toolbox is for list makers, those who wake at 3 a.m. with a list of tasks to do, the ones who remember while unpacking groceries that the prescriptions didn’t get picked up. You’ve bolted way beyond yarn around the finger, and you write reminders in code inside the palm of your hand. Our prayer for you is that you find some peace. Good friends will cry with you when you feel this world is too much. Church or synagogue friends supply meals to carry you through the hardest days or take you out for desperately needed time to breathe.

We prayed for a miracle while we were caregivers, and boy did the miracles happen—joy and such incredible peace from old friends and new ones. We learned the difference between a deep sigh that says “I hurt” and the deep breaths that mean “I love you” or “thank you, my Love.” We’ve cared for those who didn’t know that “thank you” could be so difficult to say.

Like you, we were hesitant at first. One thing we had to get over was not to suffer through our role in silence. We learned how to navigate the complex health care system, how to become the advocate when our loved one’s voice no longer seemed to resonate with the clinician. We learned how to speak louder when necessary.

We learned to take on health care bills and insurance denials, do background research on billing codes, and ask questions to huffing and puffing billing clerks. We dared to question medications and diagnoses, not that they were wrong or harmful, but we were the frontline care coordinators who built a list of questions when time with physicians eroded to ten-minute pockets of precious access.

We combed through dark closets to find insurance policies and disbursed funds to heirs, trusting that the wills that our beloved family members had entrusted to us would be accurately executed. We became funeral planners and obit writers when God called too many of family home too soon.

As we walked in your shoes, we were sometimes patient, more often not. Sometimes we just needed to slip away, apologize for a gruff tone, and take a five-minute power nap. What we learned is that sometimes our wells were drained by fire hoses; more often than not, our wells were tapped by a steady drip of dos and don’ts. When they ran dry, we found we had little energy to give and that our health hung in the balance. We learned that courage was a liquid substance that on any given day would boil, vaporize, or cool an overheated forehead.

As professionals, we also lost time from work, agonized over customers who needed help faster than we could give it to them. But in every case, neither of us ever bemoaned the time we spent taking care of a loved one. Your story will be different from ours, but the common theme among all caregivers is a giving heart.

We come to you with rich backgrounds in health care. We are major players in the adoption of electronic medical records, complex software that serves as a tool for physicians to track medications, blood sugar, or creatinine levels, and we’ll show you some terrific mobile applications available for you. We also have been leading consultants to the nation’s top employers and payers, leading work groups to build the electronic medical framework. We’ve been instrumental in helping health care providers implement privacy and security laws. Be sure to check out our chapter on patient rights.

The Caregiver’s Toolbox has your back if you are the early morning list maker. We provide printable checklists you can share with friends who want to know how to help. Here you will find resources and condition-specific communities; you will identify insider tips, resources, patient rights, and health care technology tools.

Technology is disruptive to the old way, but in a good way, it is setting the stage for new innovations. We will continue to post new technology on Visit us, tell us what you like, and access new apps. Tell us what you’d like to know about or let us know about a cool app that will help others in their caregiving walk.

How to Use The Caregiver’s Toolbox

The toolbox is divided into three sections based on the stages of a caregiver’s time line:

  • Section 1: Diagnosis
  • Section 2: Day-to-Day Tools
  • Section 3: Dealing with Death and Rebuilding

You may not go through all of these stages, but begin with the stage that most closely speaks to you and where you may need the most support. You can back up to a previous section, go forward, or hunt and peck through the chapters. If you have purchased this book for a friend or loved one, what a gift you are giving! Your thoughtful gift also means you are committed to helping your caregiving friend through some tough but also joyful times.

It is our hope that you are richly blessed by the tools, stories, and resources provided in this kit. We thought of you every day.

You don’t have to be perfect. Thank God, that position has already been filled. You will say things you don’t mean, but be strong and wise enough to ask for forgiveness. Please know that we are hugging you through the caregiving process, step-by-step. When you just need a prayer and a friend, send us an e-mail. If it’s at midnight, we will answer in the morning, and you’ll feel better.

God bless you and your loved ones. We hope you’ll let us know how you are doing.

In deepest kindness,
Carolyn and Peter