“Do you have any questions?” This has become the phrase du jour.
The doctor asks Mom, “Do you have any questions?” But while she is certainly cognizant enough to ask questions, she is mired in her own residual pain from a fall five days earlier that has left her aching and miserable. Nothing is broken per the x-rays and CT Scan, but she hurts nonetheless simply because she’s 92 years old, weighs in at less than 100 pounds, and doesn’t have the padding to cushion her bones when they slam so abruptly against the bathroom floor.
She has plenty of questions on the drive over to see the doctor. “Who made the appointment?” “Why am I seeing the doctor?” “Who said I’m refusing to take my medications?” We explain the need to have a meeting with all of us in the room at the same time so that there is no question about what is said. We urge her to talk to the doctor and tell him everything she’s experiencing. “He’s not a mind-reader,” we tell her. “You have to tell him what’s wrong and ask him the questions that you want answered.”
The doctor has been treating Mom for years. He was, in fact, Dad’s doctor, too. There’s comfort in the fact that he has a history with her. He knows her and all that she has been through. He broaches the subject of whether or not she wants any heroic measures taken.
“Do you understand what the doctor is asking you?” My husband, her son, is tuned in to the fact that she’s withdrawn from the discussion and has just given an answer that we know is exactly opposite of what she’s been saying for several years.
The doctor tries again. “If something were to happen today, and you had a heart attack, would you want us to do everything we can to help you live longer?”
“No! I don’t want that.” Her voice is strong and certain. Then in a whisper, “Just let me go, it’s time. It’s time.” This is the answer we’d been expecting. The doctor revisits this question several more times throughout the consultation to make certain that he’s confident she knows what she wants. And she does. “I miss my husband and sister. I miss my friends. I just want to go.”
He gives us a referral for hospice and orders for lab work to be done on the way out of the building. This generates more questions from Mom as we’re riding down the elevator. “Why do I have to go? Why can’t I just go home?” We explain that the doctor wants to check things. “I don’t want to go” fails to produce the response she’s looking for as we acknowledge her discomfort but insist that she stop by the lab. It quickly escalates to temper tantrum proportions, but since she’s in a wheel chair, her options are limited to loud protestations of cruelty. She’s tired and her back hurts. We understand, but... Rebellion quiets and she is soon done with the blood draw and is on the way back to her room at the assisted living facility. She’s exhausted and probably glad to have us go away so that she can rest in the comfort of her favorite chair.
We stop off at the nursing coordinator’s office. We’d promised to come by and brief her on the outcome of the meeting. We learn that hospice has already contacted her, so she has some idea.
We return home to our own message from the hospice provider. A quick call sets up a meeting the next morning at Mom’s place. We understand that they offer more than simply being there during the last days, but we have questions as to what exactly they bring to the table in terms of Mom’s care. We have questions about what Mom’s being on hospice means compared to simply going along as she is without them.
The next morning we’re anticipating Mom’s question to be, “Why are you here?” We’re not prepared for “Who are you?” as we wheel her into the elevator from the dining room. The looks that chase across on my husband’s face probably mirror my own. We’ve been talking with her for 10 or 15 minutes and are stunned. We know that eyesight is an issue, but she knows our voices and we’ve been calling her “Mom” throughout the conversation. I can see the question in the hospice nurse’s eyes. “Is this usual for her?” I expect she can see the answering confusion on my face as I lean down to tell Mom that it’s us.
We listen to the nurse’s explanations and introduction to this new world that we are entering. We answer her basic questions about Mom’s health. Yes, she has Type II Diabetes. Yes she’s legally blind in one eye. Mom interjects a clarifying point, explaining that it’s a detached retina, and then settles back into quiet listening. My question is what she is listening to – I’m not sure it’s the conversation taking place around her. The nurse lists off various ailments. No, no, no. “Basically,” I tell her, “Mom is in pain because of her back. But other than the diabetes and her eyes, she’s in pretty good shape for a 92-year-old woman who won’t eat. She’s just wearing down and, frankly, she doesn’t want to be here any more.”
The conversation winds down and, after the nurse has left, we settle in with Mom because we have more questions. My husband goes through everything again, stopping periodically and asking her to repeat back what he’s said. She understands their role of just keeping her comfortable. We decide to be brutally blunt. Does she understand that if she’s dying, they won’t give her anything to cure the problem? Mom nods, “They’ll just keep me comfortable. That’s all I want.”
It’s not a light conversation. We are all sitting together and very calmly talking about her dying. For years she’s made announcements at dinners and other gatherings to the effect that “this will probably be the last one,” or there being no need to continue a magazine subscription because she probably won’t be around long enough to get them all. Such dramatic pronouncements have generally resulted in eye rolls on our part, or quick comebacks like, “Oh, do you have a ticket to go somewhere?” This is not that conversation. Today we are telling her that we accept her decision to choose. We are learning that there comes a time when someone is simply tired and wants to go home.
There have been so many conversations where she has assured me that she’s content. She’s had a good life filled with family, friends, and travel. She is content because she knows that her two sons are happily married, that they have good jobs, and that their children are headed in the right direction. She tells me that she feels like she’s had everything she could possibly want. But now, she wants to be with her husband and her sister. She misses them terribly and she just wants to go. She’s tried to explain why she feels like she’s done. For my part, while I understand on a certain level what she’s saying, I’m not in the same place. I look forward to exploring my life in all its new phases. She grows impatient and tells me I’ll understand when I get to be her age.
As I speak with our son, updating him on the latest developments, his response helps me crystallize my own thoughts. He loves his grandmother dearly. And while he is sad at the thought of her dying and knows that he will miss her presence in his life, he says that the thing that makes him the saddest of all is watching her be so very unhappy. “That’s not the way it should be in her last years. I don’t want to see her being so sad.”
So today, I understand and I accept. I accept that I do not have her perspective. I understand that she has been the only mother remaining to me after my own died 28 years ago. I understand that I didn’t want to face losing that. But today, I accept that this is not my decision. It is her life. And while we are not standing over a woman who is within hours of breathing her last, we are sitting with a woman whose end-time is probably closer than we realize. And we are sitting with a woman who has the right to be happy and to be comfortable. So we’ll work on making that our question—“Are you happy? Are you comfortable?”
