Overwhelm, lack of control, and an unfamiliarity with the subject matter and “language” of end-of-life care breeds insecurity and mistrust.
- How can I possibly do what’s right when I don’t have a clue what’s happening?
- How do I know that’s the best advice when I’m being talked to in Latin or medical-ese?
- How do I ensure that my loved one’s wishes are honored if I’m not included in every conversation?
While Caregiven empowers you in many of these situations by providing you with the resources to prepare and how to contextualize the situation, technology can never eliminate the most primal of emotions caused by the fear of losing your loved one. This can morph into mistrust and resentment when multiple individuals are engaged in the end-of-life care of a loved one.
As I’ve previously written, it’s vital to have a team of care partners to share this journey with. Not only does it lessen the isolation when you are going through it, but a bond is forged that becomes important after your loved one is gone. Within this caregiving team certain individuals will take on duties and roles that they are best suited for – as I’ve also discussed. Inevitably this results in some in the team carrying the burden of the pragmatic aspects of end-of-life caregiving, and others focusing more on the poignant moments.
By pragmatic aspects I am referring to the forms and documentation, meeting with the doctors/lawyers/financial planners, taking notes and ensuring all the practical matters are addressed. Poignant moments evolve around bucket-list experiences and family stories, enjoying a favorite meal and reminiscing over a shared memory. Whatever role you find yourself in you will most likely resent other team members for their role.
As the family “historian” I spent many hours in conversation with my Dad, writing and recording his fabulous stories, soaking up the essence of him. My brother was better suited to learn how to service the windmill or meet with the financial planner. Many times I wish that I was that go-to person and not my brother, if only out of selfishness on my part.
Caregiven’s app ensures transparency so that everything from meeting notes, signed documents, recordings of family stories and legacy wishes are shared amongst the caregiving team. Not only do we make sharing simple, we also reflect whether someone has viewed that information. I like to think that we give everyone the opportunity to know as much or as little as they wish, while also protecting one another from accusation or resentment.
In providing this transparency and making it so easy to ensure all stakeholders have access to the same information at the same time and in the same format, we undermine transference of feelings of insecurity, mistrust, and resentment. While you still may have these feelings, it’s because of overwhelm, lack of control and unfamiliarity and not because of the perceived actions or inactions of others within the care team.
Until Caregiven is released I encourage you to use a shared drive such as those offered by Google or Dropbox. Store everything here – scans of medical reports and video recordings of a story being shared. Document, collaborate, comment!
Create transparency as a baseline. In so doing you will empower your loved-one and everyone in the caregiving team to share more and to share deeper.