Our story began with my father's illness, dementia. He wanted to stay at home for as long as possible and we wanted to provide him with the best care. We knew at the outset that his needs would increase continually.
My mother did a great job as primary caregiver until she became ill herself. It was clear, then, that we would have to do things differently. We needed to become better organized and we needed to share the care, in order to extend my father's stay at home and to reduce the risk of our burnout.
Our plan was to use time-tested, best-care practices to make things easier: for example, plan ahead, get organized, focus on needs, share tasks, leverage strengths, communicate well, monitor conditions, look after ourselves, work effectively with healthcare professionals, etc.
But, like all families, we had our challenges. We had little caregiving experience. We lived in many places. We had different opinions and very busy lives. One person - my mother - had managed all of the care.
We needed to overcome these challenges. We needed tools so that we could share the care, provide care efficiently and effectively, and do so independent of where family and friends lived.
The care tools began by putting three key items - a calendar, a task list and a team list - online so that everyone could see what was coming up, what needed to be done and who was helping. We then added tools to help focus on needs, communicate easily, eliminate having to ask for help, build a robust team, and ensure nothing fell between the cracks. We added a tool to manage medications, and two tools to track changes in health conditions. These allowed changing conditions to be graphed and shared easily with healthcare professionals so they could provide the best, evidence-based treatment, proactively.
We made the Care Tools publicly available after my father passed away, and we have expanded them to encompass any illness. It's our goal to make care easier and better for everyone impacted by illness.
We encourage you to try them. Don't struggle, burnout or wait for a crisis, as we did before having the care tools. You can use them now and we hope you will.