Sometime in the next few days, as I write this, my mom will take her last breath. I am sitting in the room with her waiting for that to happen, and it is not — and I am okay admitting this — my shining moment. I am not the caregiver of the family, I am not the caresser, the cuddler, the let-me-clip-your-nails child. I thought I would be. I wanted to be a nurse, but good grief and glory, I would have left a trail of dead patients in my wake, had I pursued that career.
I am a problem solver, the cheer-you-on, find-a-better-way-to-do-it, collaborating-is-better-than-competing person. So, I hold her hand, for just long enough, and I make nice with the caregivers, because if they are on our side everything will be better, and I watch. I watch her breathe, I watch her wince, I watch her as if she were my precious baby, her every move and moan a sign I must decipher and respond to. And I watch the staff care for her, and, sadly, ignore her.
I have railed against the system for a few months now. There have been errors, omissions and mistakes that have led us to today, this painful waiting for death, and in trying to make my peace with it, I have tried to figure out how to make it easier — easier on the patient, easier for the staff, easier for the family.
So, while parts of this issue are designed to celebrate moms, those glorious creatures who gave us life, and at least once (and maybe a dozen times if you participated in precocious antics as I did) threatened to knock us into next week, or give us something to cry about I am going to give you insights for when it is time to say goodbye.
It won’t be easy. It won’t be beautiful. It won’t be fun, scripted, or full of joy. There will be tears and long hours of frustration from all of the things you don’t know. I tell you this because it seems that society wants to put a bow around the end of life with lots of sentiment and little reality. It’s not pretty, so be gentle with yourself. I leave the room when they move her and when I just don’t want to see what is going on. It’s OK to escape, just don’t miss the beauty.
It will be beautiful. I leave home well before 6 a.m. so I can be holding her hand when she first opens her eyes. She smiles. We are quiet. It makes me cry to think of these quiet moments. Had I been in her room like this 10 years ago, it would have been creepy, and she would have sent me away as she did when I was 4 years old and being a pest. It will also be beautiful when you see a sibling lean in to whisper sweet nothings, to feed her, to look her in the eyes. The same is true of caregivers, friends, and the pastoral care team. When you sit back and watch, every beautiful moment will reward you tenfold for every one that is hell.
Ask the hard questions. Say the hard words. It took days, painful, information-filled, tear-filled days, to be ready to ask if she was ready for hospice. She already had a do-not-resuscitate order, but this would be a new path to the end. We gave her space to think about it, laid out the facts she needed. What we dreaded the most turned out to be a relief, a gift, a promise for hope. Mom took about 2.3 minutes to say yes to hospice, to waking up in heaven. She never wavered, even when someone she loved begged her to rescind the decision. She chose her path and she said the hard words to friends and family: “I’ve made a decision.” We also said our apologies. Apparently, I am bossy, and with spinning tires and a handsome boyfriend, put her through some undeserved teenage drama. It was hard to say “I’m sorry” for the last time but it was a relief. Say what needs to be said. Whatever is keeping you awake at night, say it.
Let people work. When you are saying goodbye to your mom, or your person, especially if you are in a hospital or care center, get out of the way. While you are living your story, and you want the world to stop and honor that fact, other people are trying to work. They are trying to read the tests, wash the wounds and change the sheets. Let them. Assign one person to be the information portal, handle the decisions. The staff does not need to give a play-by-play 84 times for one patient. The best decision we’ve made for our parents is to assign one sibling as the decision-maker and never to question their decisions. Happily, it wasn’t me, as I am bossy and told others to take the task. They would say it was the fact that I am not the caregiver, but they are wrong.
Let people help. Even if it is something that does not need to be done, let them do it. Your mom meant the world not just to you, but to her neighbors, her workmates, the crazy aunt that always brings the Jell-O mold to the party. There are also people that love you. Let them. Let all of these people hold your hand, bring you a dinner you won’t eat, mow the grass, wipe your mom’s brow. These acts are about more than the act, they are the quiet gifts from the angels. Accept them, and when it is your turn, and someone else is about to lose their mom, you can quietly give a gift to them, of time, or care, or duty.
I thought I knew my mom, but I didn’t. Not until I sat in this room and watched the world swirl around her, and you will probably find the same. My mom, I discovered yesterday, drank Wild Turkey with her good friend and Southwest Airlines founder Herb Keller. She also so touched the hospice pastor that he made a CD of hymns, singing “I’ve Got the Joy” just for her. He cried as we listened together. He met her once.
I did not always honor my mom or even like her, truth be told. Mothers and daughters can be like that, but in stopping my life to help her die, I found the best of both of us, and that is an incredibly beautiful gift. It’s the kind of gift you can only give if you’re a mom, or receive if you open your heart to her.
Editor’s Note: Karen’s mom, Mary, died on March 13 with Karen and those she loved by her side. We send all the blessings possible to her and her family at this time.