One of the toughest times I recall was when I made the decision to sign papers for Hospice for my father.
He had been ill for a number of years – a slow decline at first, and then a rapid finish, it seemed to me, but my memory is blurred by love and sadness. At the time he was living in an assisted living facility with my Mom, receiving a lot of supportive services and trying desperately to keep a fair amount of time between Emergency Room visits as each one seemed to suck a chunk of time away from him.
My husband and I had taken the opportunity during summer to take some time away, just the two of us, for business and pleasure, after having spent nearly 5 years providing increasing levels of care for both of them. My siblings took time to visit from their own states and give us a reprieve. When our plane landed, I turned on my phone and the texts quickly pinged and populated my screen. I learned that both parents had made trips to the ER in the weekend before we landed back home, but that both were now back in their room, apparently safe.
The next day when I visited it was immediately clear that Dad was not all right. We made another trip to the hospital and by the end of a long day, arrangements had been made for me, as the one holding the Power of Attorney and Health Care Advocate status, had to make some decisions about Hospice.
Prior to this time, my assumption and vision of Hospice was that of a loving angel-like nurse who would come to care for my Dad, taking all burdens from him, easing his pain over the next year or more. It didn’t occur to me that I had to sign something. That I had to make a decision on his behalf and actually sign a paper that stated what levels of pain meds he could have, or that the meds he was taking for years to sort of extend his life would cease unless they were deemed necessary for “palliative care”. Palliative care. I knew the phrase, but really didn’t know the difference between palliative care and hospice. I didn’t’ know the difference between care that was considered curative vs ending pain symptoms during a “life limiting” condition.
Don’t get me wrong! I found Hospice workers to indeed be as near to angels as I imagined. But I had to make decisions, along with trying to consult my Dad and other family members. I could not really consult my Mom. She had Alzheimer’s at this time and based on consultation with her care team, would not fully understand. And I knew she would only want him to live. Live and be again, the dashing Navy Pilot she fell in love with many years ago.
One of the hardest decisions was agreeing on the medications he would continue. These would not be the curative type. It felt horrible. Like I was taking away his lifeline. Like I was taking his very life.
I wasn’t. I knew that then, and I know that now.
My Dad died at the end of the week. He rallied mid week, but then weakened. I believe he waited for my husband and me to be back home from our vacation. I kept telling him that I was here now. Mom was safe because I would be there for her, too. I do believe he needed that, and I was so glad to be able to give that to him.
I am glad I could be with him up to some point, and that we could spend a moment there together. It wasn’t serendipity. It wasn’t really painful. It wasn’t weird. It was graceful. It was possibly, grace.