Wednesday, May 25, 2016

Atlas of Caregiving

Last fall, I wrote about Richard, Robert and I participating in a caregiving study about our caregiving day.

Robert's View: Part of his grooming routine
It was conducted by Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving and Dawn Nafus, his partner for the study.

Robert has volunteered for studies his entire life – for medication, the Vagus Nerve Stimulator, the Deep Brain Stimulator – anything that might help him and others with uncontrolled epilepsy.  Robert was more than willing to participate in this study about caregivers and we were excited as well.

Rajiv and Dawn made it very easy and even though it sounds like it would be intrusive (cameras, home monitoring devices, keeping a log of activities), it really wasn’t.  We quickly forgot about the cameras and went about our caregiving day. 

Robert's View: Watching Trish organize his weekly meds
As I wrote in September, the dozens of interruptions throughout our caregiving day is mind-boggling! Caregivers know this but until I saw it on paper I did not really realize the extent of how much we juggle between (and in spite of) the interruptions. 

Fourteen families participated in this study and each one is a fascinating and eye-opening read. The results of this pilot program are out and can be read here.  (Our story is here.) 

Robert's View: Richard waiting for Robert
If you are not a caregiver, I encourage you to read each and every one of these stories to get a sense of the vast amount of caregiving being done. If you are a caregiver, you will definitely relate to these stories!

On a personal note, I would like to thank Rajiv, Dawn and Celine Takatsuno (who we have worked with throughout the publishing process).  They are doing great things for caregivers and truly care about our day and what would help make our day a little easier.

We all need that extra help and support in our busy, crazy caregiving days.

Trish's View: Helping Robert