Yesterday my grandfather had a severe stroke and ended up in the hospital. I found myself at his bedside watching my grandmother sob and plead for him to recover. She hadn’t slept in two days, wouldn’t eat or drink, and refused to leave his side. While I was with them, there were a few moments of hope. At one point he opened his eyes and said “help help help.” I also heard him say “Robert” when the nurse asked him for his name. Then, when I told my grandfather I had to leave, he clutched my hand tightly and struggled to communicate with me, even though he couldn’t open his eyes or get a word out. Despite these moments of hope, he has been almost completely non-responsive, unaware of his surroundings, and totally unable to communicate (besides wiggling his toes and fingers).
At one point in the evening, I found myself alone with a nurse who wasn’t afraid to tell me what this situation may really mean. The bleeding in his brain is significant and they are not sure it had stopped. She did not have definitive answers to my questions, but she painted a bleak picture and stated that this may be the best my grandfather gets moving forward. The nurse said that we may be faced with a situation where my grandfather has brain activity and can comprehend what is happening around him but he is unable to move on his own or effectively communicate with those around him. Essentially, he could be trapped.
As someone who has been practicing elder law and drafting estate plans for clients for years, I often talk about end of life decisions. I help clients designate who their health care representatives will be and assist them in filling out Living Wills, where they decide what they want if they need artificial means to keep them alive in their final days. As I stood there holding my grandfather’s hand, I couldn’t help thinking that I had stepped into the situation that I discuss with my clients every day, and my perspective may be changing. If my grandfather cannot get better and needs a feeding tube to stay alive, would there be more hope? Would he have quality of life? Who would have to make these decisions?
About a year ago, my grandparents completed their estate plan and named each other as their Health Care Representatives. This means that my grandmother will be the decision maker on what happens next. The woman who stood across from me in the hospital after 48 hours of not sleeping, covered in tears, pleading for her husband to wake up, refusing to eat… She could have to make the most devastating and life changing decisions of her life in the next few days. I cannot comprehend how she will be able to do this or what the outcome will be.
When I finally crawled into bed next to my husband last night, I wondered what would happen if we were in a situation like this. Am I capable of making these kind of decisions for him? What would I do? What would he do if he had to make these decisions for me? Do you really want the person closest to you to have this responsibility? Do you want someone in this role who will be practical or sensitive? Even if your spouse is the most suitable person to make these decisions, do you really want them to have to serve in this role or live with those decisions?
I don’t know if there is a right or wrong answer to these questions. And I hope my grandmother never has to answer them for herself.