What’s In A Caregiver Toolbox? Let’s Build One

Many of know or remember that I wrote an essay for The Mayo Clinic Social Media Health Network on caregiving. The essay is here. If you haven’t read it please take a look, comment, and vote. (Okay that was my shameless pitch for like me like me.) To the bigger point I want to make, caregiving extends beyond caring and giving of two parties. It is a necessary and highly valuable part of healthcare and healthcare’s future. In my essay I mention the need to create a tool box. We may not need to create it just use the tools we have.  

An article in JAMA last month “The Critical Role of Caregivers in Achieving Patient-Centered Care” by Muriel R. Gillick, MD. Opens the idea of caregivers and tool box.

Achieving high-quality, cost-effective medical care remains an elusive goal of the US health care system, but there is widespread agreement that patient-centered care will be a key ingredient.1 Yet for frail elders and patients with advanced illness, many of whom have multiple chronic diseases, patient-centered care is impossible without caregiver involvement. 

Gillick addresses the fact that the elderly suffer substantial disabilities in the final year of life and that demands active and daily care from a loved one. The stats are mind blowing. 

In the year before death, only 17% of individuals experience no disability, 22% have persistent severe disability, 18% have accelerated disability, and 24% have progressive disability.4 Some of these patients have advanced organ failure and experience frequent exacerbations of illness, with a fluctuating need for personal assistance. Other patients, who together constitute the largest group of dependent elders, are frail (28%) or have advanced dementia (14%).4

Gillick presents four points on implementing patient-centered care and how to integrate caregivers. 

  • Understand the patients underlying health status
  • Prioritize goals for care with the caregivers
  • Designing a plan of care
  • Perform a comprehensive assessment of both the patients and patients surroundings

Finally Gillick shares the critical need to have care plans available across all sites of care and this should include EMR etc. This is the core of the caregivers tool box, HCP, patient, caregiver planning and goals. 

Family Caregiver Alliance

This the national center on caregiving. It calls itself a public voice for caregivers with information, education, services, research, and advocacy. There is so much on the site it is somewhat overwhelming but that’s me and my attitude toward design. They have a valuable tool a map to view caregiver resources for all 50 states. 

This is another tool to add to the caregiver toolbox.

Broadcasting Bereavement

Scott Simon @nprscottsimon writing on The Dish presents the case for speaking about, dealing with, and conquering grief. He captures my very feelings when he says 

Grief is the flip side of love. Mourning has become an all too isolated experience—but Facebook and Twitter have become a place (strange as it may seem) where the bereaved can find community, a minyan of strangers to share their prayers

Another tool.

CS Lewis in his essay “A Grief Observed” clearly captures the reality when he says 

“…bereavement is not the truncation of married love but one of its regular phases–like the honeymoon.” 

 Further down he states

“The less I mourn her the nearer I seem to her.” 

Grief and bereavement is part of the caregiving process and the natural extension. We need tools for caregivers to aid and support and help prepare them and guide them. I believe that caregiver will have a lower incidence of complicated grief when they are actively supported and aided durning caregiving. Indeed another tool in the toolbox.

In the end caregiving is what we do it is an extension of our love and who we are. But as huge segments of our population ages and more and more of us get ill caregiving will be a critical part of each one of our lives. We cannot escape it. We can only manage it and make it a task that is less horrific and painful. It will never have joy but perhaps it can have a place in our hearts where it gives us peace. 

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