What is next? What should we do? What will the end look like? What should we plan on? When should we fly down? How do I figure out a work schedule? When should the grandkids visit their Grandpa? How many plane trips should I make? How much money should I spend visiting? “Well it is just hard to say…” I keep hearing.
When our parents are sick, we don’t know when the terminal cancer, the congestive heart failure, the Parkinson’s disease, the liver disease, the kidney failure, etc. will grab its last bit of life and overtake our parents. Medical procedures, chemotherapy, and dialysis and respirators have added weeks, months, years to our human lives. As in Being Mortal, Atul Gawande asks “When is it too much? When is it enough? When do we stop interceding on the dying process? When does the living stop being more important than dying with dignity, and having comfortable surroundings to end life with family and friends rather than fluorescent lights, tubes, monitors, and strangers?
These are all questions with no answer. So many many questions. And, we don’t know if the end will be abrupt or drawn out. (So I felt a little panic to figure out the answers. I didn’t have time to ponder. I had to keep my own pedal to the metal!)
We can definitely know the price of a gallon of gasoline at the 7-11 and we know what our blood pressure was a minute ago. We know the number of steps he has to take from the living room to the bathroom, and the number of miles or hours between us and our parent. But we don’t’ know when we need to be there. We don’t know when the mental cognition will be so reduced that we won’t be able to have a conversation about work, the latest political intrigue, the neighbor’s new puppy, the memories of what it was like growing up in the Depression (“What was it like, doing tin foil drives for the war effort? Did you really collect gum wrappers?!?” I forgot to ask him that).
I compulsively trolled the questions: when, how, what; and the answers of course are unknown for them too. I feel so helpless not knowing answers. I remember every visit to my Dad, I felt helpless, watching his deterioration. He didn’t know what was in store either. He and my Mom were just trying to keep a stiff upper lip and keep on keeping on. I still remember the phone conversation in March when Dad told me he wouldn’t be around for summer in Wisconsin. He said “Wow, I haven’t said that out loud yet, to anyone.” I was quiet for a mini minute and then got back to being strong. Was I supportive though? Did I say the right thing? Did I comfort him in his admission? I don’t know and won’t know now.
So many questions, and my parents didn’t know the answers, the doctors didn’t know/wouldn’t tell the answers of when or how. The doctor said something non-descript like “You will just get all tired out” from his liver failure. When my Dad told me that I wanted to yell “And what does THAT mean or look like?! Can we get some details so we can plan?!”
Of course we don’t know the answers to how or when or what about death, any more than we knew those answers before we gave birth. We try so very hard to understand the unknowable with ultrasounds, MRIs, x-rays, blood tests, consultations, genetic testing. For me, the main question boiled down to “What can I do?”
What can I do? What is it I can control? What can I provide to help him feel comfortable? Soft socks, warm PJ pants, medicine, and a wheelchair to get to the dining room easier were those answers for one visit. What can I do to help him have meaningful time? Sit with him, really sit next to him, tell him stories and be there with my hand to hold if he wants it in the middle of the night were the answers for my last visit to him. What can I do to help him feel control over his end of life? That was really hard- offer Chapstick, help him to the bathroom as many times as he asks, let him wear whatever clothes he wants, let him listen to the golf channel, and then, give him space and quiet when he asks for it were my answers those last heartbreaking days in transition.
I wrote most of this 34 days before my Dad passed. I would love to have one more day to tell him yet again that I love him, to ask if I did ok as a daughter, and if I took good care of him. I would love to tell him again that he was so loved, that Mom did her best, that we are all so imperfect, just floundering around, doing our best. And I am sure Mom would say the same thing. If she could take him to the bathroom one more time in the middle of the night she would do that in a heartbeat, even though at the time she was exhausted and begged for someone else to do it. But he knows that. He knows it all now and he knew it all then. He knew we were doing the best we could with a mysterious time in life.
We want to know all these answers and more. And we are accustomed to knowing, but death and birth still hold the greatest mystery for us. And sometimes we just have to accept that.
Survival Tip- Remember that our control over the circumstances is gone. We can’t control the aging, the disease, the timing, the passing, and certainly not the reactions or impulses of those around us. All we can do is control our own behavior. I chose to help my Dad have as much meaning, control, and dignity as he could. Or as I could given the constraints.
And, we can pray for help.