When my Dad was sick one of his biggest fears was to lose the ability to make decisions for himself. It’s a fear that we all have and leads us to completing an Advance Directives, setting up our will, and worrying over our end-of-life choices. It takes on a different form when you are actually dying.
For my family, my Dad was dying of cancer and he knew the likelihood that his mind would fail before medicine allowed his body to was increased. He and my Mom did a lot of work to ensure that his wishes were spelled out in all the appropriate legal and medical documents (all of which are made available in Caregiven).
What I learned was that while checking boxes on forms and “expressing” in a document your wishes is absolutely vital, so are the conversations around them. It’s not enough to have written guidance, you need to truly understand the fears and motivations behind them.
As a care partner I shared my Dad’s concerns, not just because I’d be losing the father that I knew, but for selfish reasons. I didn’t want the responsibility of interpreting these forms and documents; the fear of having to choose to honor his wishes when my very being didn’t want to let go of him was ever-present. The thought of living the rest of my life knowing my decisions on his behalf either prolonged his suffering or caused him to pass too soon was something I didn’t think I could live with.
So, I purchased a tape-recorder and I started asking my Dad about his choices. Why did he select that box and not this? What does he mean when he says he wants to die in his own bed? What does he consider life-support? Every time the topic came up, that tape-recorder was on. I’d even stop him mid-thought to grab it because I wanted desperately to get “this” right.
Getting Dad comfortable with being recorded took some time. As did fumbling around with a tape-recorder. Knowing which questions to ask and how to guide the conversation to get to the essence of his fears and wishes took some time for me to develop.
The fear of making the wrong decision is debilitating, as I wrote about previously. But when we have the words of our loved-one to guide us we are no longer making decisions, we are enabling theirs. I know that someday someone will be faced with a heart wrenching decision regarding their dying loved one and they will access their Caregiven recordings to hear the words of instruction needed to do what their loved one has asked.
We were fortunate, my Dad’s body failed before his mind. Having had the conversations and knowing that he avoided what he feared most offered comfort after his death and I truly believe enabled him to live longer.