dying

I recently finished reading Kathryn Mannix’s “With the End in Mind: Dying, Death and Wisdom in an Age of Denial.” Mannix tries to reveal love and resilience that presides in human beings, all through the stories of dying people.

My friend, Leslie, had recommended the book to me after lunch one day. We only see each other once a year, but we just had a mutual friend die (we miss you, Marcia!) and we wanted to see one another again. We started talking about my husband’s illness, living wills and death, and she mentioned how much she loved this book. We both had a list of books about grief and death that we enjoyed or learned from, so here we were at my favorite lunch spot, swapping death book titles.

It was honestly such a good lunch and visit.

But when I was reading “With the End in Mind,” I couldn’t read it quickly. I would put it down and watch tv for a bit or read a romance novel. I couldn’t take in everything she had to say. Then one evening, my husband asked what I was reading. I told him and asked if I could tell him one of the stories. He agreed with obvious trepidation.

The story was about a couple, husband and wife, and the wife was dying of cancer. Kathryn Mannix came to visit to offer information about hospice services, but the husband met Kathryn at the door and told her not to mention dying or hospice because the wife didn’t know she was dying. In the hospital, after the doctors told the husband, he just couldn’t tell her. He didn’t want to upset her. Kathryn warily agrees not to mention death. They go to the wife’s bedroom and Kathryn just asks how she’s feeling, does she like her view, that kind of thing. The wife asks the husband to get tea for the three of them. The husband doesn’t want to leave but does. The wife then tells Kathryn that she knows she’s dying but can’t tell her husband because she knows it will upset him.

It all gets sorted out and the couple is able to live more freely for the last of the wife’s days. She is able to communicate with her husband how she wants to die without feeling that she’s causing him harm.

The next night I read my husband another story from the book, about a man who was dying at the age of 60. He was afraid to tell his adult daughters but was finally able to before it was too late. The women were able to say goodbye in person.

I think I ended up reading three stories to my husband. He became a bit more receptive to them, and with that, I found the courage to ask him to talk about his own death. Like my dad, he wants to die in his sleep, but he thinks it will be more like a “shit show.” We talked about his decline over the past year and that how he’s been physically feeling absolutely sucks, but he could still get his wish of dying in his sleep. Like many people, Walter wishes he’d feel good most of the time but die suddenly while sleeping, hoping to negate some of the pain and fear. But from what I’ve seen, dying typically doesn’t happen like that. It’s a process, one we’re all currently in, but his process is quicker than the average 57-year-old. I won’t say he’s actively dying, because that term is used for someone who has only hours or maybe days left to live. But he’s on the decline, still has a few years, maybe even 5 years left.

Even if Walter has 1, 3 or 5 years left to live, I still want him to live a good life, his version of a good life. I know for some people that would include travel or visiting friends or hiking a mountain. Or if physically you can’t do some of those, your good life could include cooking your grandmother’s beef stew recipe or reading Les Miserables by Victor Hugo. That last suggestion was what my brother did. He wanted to make sure he read Les Miserables before he died, and he did. He also wanted to travel, but instead he “traveled” through eating new foods from other countries and trying out recipes he never had before.

My husband’s version of a good life is more to the tune of playing Spaceship Engineers on his computer, listening to Patricia Briggs’ audio books, watching the occasional movie or television show with me, and taking part in conversations with our son about the state of the world and what our son’s part will be in it. And those are things I hope he can still do for as long as possible. We’ve had a horrid two weeks with him sleeping 18 hours a day, but much of that was due to mental health. That seems to be much better now, so my hope is that he’ll stabilize and be ok until at least our son’s high school graduation in June.

You know, though, after reading some of those stories from “With the End in Mind” out loud, my husband expressed his worry about me. Something I didn’t know. He knows I’ll be here for him as he transitions from life to death, but who will be there for me? He knows I’ll never marry again and we don’t expect our son to give up his life to care for me (although I hope I live near him if possible). Will I end up in a nursing home? Maybe. (My son and I saw a really fancy one last year near George Washington University in DC, and I told him he could put me there. 😉 ) I then reminded my husband that yes, I might end up in a home, especially if Alzheimer’s hits me like my mom. But that I also had a pretty incredible support system, especially these women you see here:

While we were in Belize, my friends and I often started a sentence with, “In this scenario, all the men are dead.” We’d describe how we’d live close to one another but probably not with one another. How we’d travel together, be there for one another more than we can now. It might sound a little morbid or maybe disconcerting to the men in our lives, but it gave me such comfort to have those conversations. Whether those scenarios really happen, we’ll have to see. But no matter what, I know I’ll always have people to guide me, hold my hand, and help me figure my future out.

Friends, please, don’t wait to have conversations about your future, your life or your death. Have them now, while you are still able. Make out a will and living will. If you can’t talk to some people in your life, write letters to them to express your gratitude and appreciation, or even just to express what you hope their future is and maybe even what you hope they’ll remember about you.

These things matter. They really do.

She’s gone.

These are the words my sister says to me over the phone, just 5 minutes after I left my mother’s bedside.

I think that’s what she said. I’m not quite sure now. My sister and I had been with our mother for 24 hours–sleeping in recliners, talking and reading to Mom, rubbing her arms. She had been unresponsive for the day. We knew it was near the end but I thought she’d be here for one more day.

Mom had been with hospice care for 3 weeks, but at first, we thought she had a few months left. Or I did. She had a gastrointestinal bleeding that they couldn’t fix, so she began pain medicine to help. We took her to the waterfront for her birthday and ate ice cream and whoopie pies and drank coffee–all some of her favorite things. We had some wonderful visits with Mom and she seemed more like herself than she had in ages. I’m assuming she had been in more pain than anyone thought.

Then her pain increased and she was on a regular dose of morphine. Two days later she fell. It was awful. She was so fragile and now in more pain than ever. Her morphine dosage increased just to keep her from crying out. So my sister and I sat with her, told her we loved her and told her it was ok to let go. We would be ok.

Friday morning I left to go home and wake my son up, take a shower and take my boy to school. I drove back to the residential facility, thinking about the afternoon. My sister was going to go home and take a shower and I would sit with Mom, read more of her favorite book aloud and just be with her. Weirdly, I was looking forward to it. I would spend some time with my mom and hang out. Just the two of us.

When I got back to the facility, Mom’s breathing had changed. But it still wasn’t like Dad’s had been. He had long bouts of no breathing before he died, so I thought we still had a little time. I stayed for a bit then had to leave for an hour to get another x-ray for my arm. I was just down the road when my sister called me. I turned around and raced back. I ran from the parking lot into the facility and down what seemed like a very long hallway. When I got to Mom’s room, the hospice doctor, nurse and my sister were there but I didn’t look at anyone. I hurried to Mom’s bedside, touched her face and arm and just sobbed and sobbed. My body shook with grief as my sister rubbed my back.

I knew this would happen. I knew Mom would leave once I was out of the room. I said this to my sister the day before, and Mom just proved me right. I was the baby of the family. Before dementia set in, my mother did all she could to protect me, but not my sister. She was the oldest and honestly the strongest. My mother would tell her when she was in pain or when things weren’t right, but never to me.

I was so angry at Mom. Why couldn’t she have waited? Couldn’t we have this one last afternoon together?

I knew I wasn’t being rational, but none of that mattered. I was angry and sad and devastated. I thought I would be a little relieved after everything we’ve been through, but I wasn’t. This is my mom.

My mom.

My mother remained my mom until the very end. I essentially became her parent over the past two years, but she was still mom. She couldn’t remember I had visited her the day before or that her mother had passed away 14 years before, but she remembered that I injured my arm 3 months ago. Less than a week before she died, Mom stopped herself from touching my arm and asked me about it instead. My sister kept poking my arm because she forgot, but our mother with Alzheimer’s did not.

And I know she was still trying to be my mom with that last breath. Everyone has their theories about what people do on their deathbeds and what is intentional and what is not, but I do believe Mom wanted to save me from what maybe she thought would be too hard for me to handle. But I am so happy my sister was with her. When our dad died, I was with him and I felt like he gave me this incredible gift. I can’t tell you what it is or why I feel this way, but I do. I only hope my sister feels that way now with Mom. My sister’s was the first life my mother brought into this world, so it seems fitting that my sister was with Mom as she left it.

I feel lost tonight. Earlier today I found myself walking back and forth in my house, not sure what I should be doing. I called my sister and she was doing the same thing. What do we do now? What does one do without their mom? I feel like I’m in a foreign place that looks familiar, but I have no compass so I don’t know which way to go.

I miss her. I miss my mom.