Caregiving My Opinion and Experience

My essay on caregiving was submitted last month to the Mayo Clinic Patient/Caregiver Scholarship 2013. Three great smart writers wii win a chance to go Mayo’s media week for free. I didn’t make the cut. But Mayo being the monolith of healthcare social media scored these results: 

We had a record number of participants, and through the process drew lots of attention to your stories. There were more than 18,000 page views of the essays, more than 1,800 comments and nearly 1,300 likes, and essays were shared on Facebook and Twitter more than 4,500 times.

Well done. They can sure work a social media room. 

Are we born caregivers? Do we surrender to caregiving? Where do we learn to be a caregiver? How do we measure caregiving?

Donna was a creative director. Her sense of type, layout, art, design, color, and copy was nothing short of brilliant. Donna was smart, strong, independent, and extraordinarily creative. She fought for every success and did not tolerate fools gladly. In 1979 that is the woman I fell in love with. In 1983 I married her.

January 2009 Donna was diagnosed with Stage IV NSCLC, told on voice mail at work you have six months to live. On February 6 Donna had a craniotomy. Two months later she began whole brain radiation. And in another two months began the first of three rounds of chemo. July 11, 2011 she was admitted for a thoracentesis. July 18 Donna was transferred to hospice. On August 7, 2011 she died.

I closed my business to become her caregiver. Donna put her disease in my hands; she gave it to me to manage and guide her. It was hard to imagine that I was guiding the strongest and smartest person I know. I read somewhere “Courage is not the absence of fear it is the presence of dignity in the face of fear.” She was dying yet she kept her dignity.

All through our marriage I made big family centric Sunday dinners for the two of us because as a child those meals were non-existent for her. That was caregiving sans the disease. During her illness caregiving accelerated and morphed: teaching her to ride a bike, helping with the nausea, vomiting, severe alopecia, hypertrophic osteopathy, preparing pill packs, and communicating with friends about her disease. Rallying friends to visit her in the hospice.

Toward the end I would come home from my part time job and just sit on the stoop afraid to see the disease the pain. I was broken and scared. But I went upstairs because it was my true job, my one love, my only universe, and our life.

Caregiving is an emotional rip tide dragging us out to sea to partake in our drowning but it frames love like nothing else. We give care to the best of our abilities but do it for all intents and purposes alone. Over time caregiving debilitates us physically and emotionally. Can that be changed?

We are not given a caregivers toolbox. Where do caregivers rally to find hope, help, and healing? With family, friends, colleagues? How do we measure if we are doing it well?

Caregivers acquire vast amounts of healthcare knowledge. They are little knowledge machines filled with hope and pain. My wish, this essay will be used to create caregiver toolbox of help. And other caregivers past, present, and future will find a voice. Our caregiving experiences can help others reflect and grow. And survive the crushing aloneness of our life after the death of a loved one.

The Harmony of Loss Found in the Caregiver Community

There have been many comments to my essay for the Mayo Clinic Patient Caregiver Scholarship contest. I am struck by them all. Struck by the resonate chord and the harmony we share as caregivers. They fill me with hope and understanding. 

What touches me the most is that we share a similar sense of loss while at the same time we have a strength of knowledge and understanding. This comes from our collective sharing of experiences and using that knowledge to move forward to find some peace. Peace that does not come easily while the pain is mitigated by knowing we are not alone.

If you can read the essay and the comments leave one if can but most of all feel the sense of place we share.

Caregivers and The Internet: A Force to be Considered has a great summary of a study done by Pew Internet/California Healthcare Foundation Family Caregivers Online last year. 30% of US adults are currently caring for a loved one. That number will increase due to aging population and changes in health insurance coverage. These caregivers seek out healthcare knowledge and information 20% greater than other users (18% vs. 38%). And caregivers know how to network.

Take a look at the e-patient link and the chart on what caregivers looked for online. If you buy the idea that adults will only learn if they are seeking the solutions to problems they have we can easily see what the problems are. But I am not sure we know the quality of the information they are gathering and how they are using it. A study whose time has come? We need to know more about this group and how to meet their knowledge needs.