In her book Eldercare 101, my friend Mary Jo Saavedra encourages families to create an “Aging Life Care Team”. This team consists of an assortment of individuals with the skills often called on when caring for a senior. Not surprising, they are the same qualities that are useful when supporting a dying loved one. The team is composed of knowledgeable individuals on legal, medical, financial, daily life, social, and spiritual categories. Mary Jo refers to these as pillars; I wore those roles like hats.
My family didn’t think to engage an outside advisor like Mary Jo, who is a practicing gerontologist and aging life care manager who could have identified who we needed on Dad’s “Team”. We didn’t know such a job existed, weren’t referred to one, and if we had, Dad’s insurance and Medicare probably wouldn’t have covered the cost. I encourage you to research your loved one’s coverage to determine if that opportunity exists.
For those families like mine, without access or a desire to engage an outside professional to personally manage the end-of-life journey, Caregiven provides support in a similar manner using familiar features of our smart-phones.
Until the Caregiven app is released and in the absence of a Mary Jo, my family relied on our collective “wisdom” and bounced like a pinball from topic to topic, making the best decisions at the time given the resources we had. There were many hats to wear, many personas to step into on any given day.
Deciding who wore which hat was difficult. What worked for us was that we were honest with ourselves, monitored our reactions and emotional stage, and swallowed our individual biases when it came to the capabilities of others. While I wished I could have been part of the financial conversations and decisions that my Dad, brother, and mother discussed, finance has never been in my wheelhouse. My emotions and ignorance would have complicated things. I didn’t try to become someone I’m not simply because I wanted to rise to the occasion and please my Dad.
Okay, that’s not quite true. In the beginning, I’m pretty sure I can remember my Dad having a good laugh at my assertion that I could wear a certain “hat”. The statement that “I’ve known you for 42 years and you’ve NEVER been able to understand that…” echoes in my memory.
Early on my family established a level of transparency to ensure that everyone was equally informed and on the same page. This meant a lot of long emails and documents flying around – things that the Caregiven app addresses. But it also meant that the same information was conveyed once, rather than through multiple conversations that would ultimately evolve into a game of “telephone”.
For now, I’d suggest thinking about the “hats” or pillars that you’ll encounter during this time: legal, medical, financial, daily life, social, and spiritual. Perhaps write down who has the skills or has taken on that role to date. Your own name may be the only one, which is alright.