Beautiful and Awful, Tender and Terrible

After a great deal of consideration, I’ve decided to write about the last days of Susan’s life. If you would rather not read about this, you might want to stop here. 

But most of Susan’s anxiety was related to uncertainty about what the end of her life would look like. How much pain there would be. How she would be able to say goodbye. If she would be frightened. I think it might be useful for other families going through similar situations to be able to read about someone else’s personal experience. 

We shy away from discussing death, even though dying is one of the few things we all have to do. Currently, nearly two people die every second of every hour of every day. Best estimates are that roughly 100.8 billion people have died in the history of our species. That’s a bigger number than you might think. If 100.8 million seconds is about 3.2 years, 100.8 billion seconds is 3200 years. In short, lots of dead people. 

Yet death is shrouded in superstition and secrecy and fear, shunned in conversation and spoken of in whispers. Perhaps more now than ever. We’ve santitized death, compartmentalized it and sealed it away in hidden vaults. It’s something that takes place in a sterile hospital room or a brightly-lit operating theater, far away from family and friends. That saddens me. Susan was fortunate enough to be able to come home and spend her final weeks with people she loved. And there was a lot of love going on up in here. “I love you’s” were falling faster and thicker than f-bombs at a biker convention. 

So what was the end like? Beautiful and awful, tender and terrible. And rapid. What it wasn’t was shocking, shameful, fearful or grim. It was inexpressibly heart-rending, yes, but it also included moments of tremendous affection and genuine happiness. 

Here’s how it went. On Friday Susan was able to walk short stretches of the promenade along the beach on her own, using her wheelchair for support. By Saturday she was too weak to walk, but I pushed her in the chair and she was able to enjoy the late-autumn sun on her face. She was in pain, but it was manageable with medication, and she was sleeping a great deal. And although we still sat down to meals together, she was eating less and less, and shedding weight more and more. 

Sunday Susan spent most of the day in bed, taking what little food she would eat there, and getting up only to brush her teeth. And although mentally Susan was increasingly adrift, she was in good spirits and our bedroom became the focal point of the house, the place we would all hang out together when she wasn’t sleeping. (And sometimes when she was.)

By Monday morning Susan’s condition had deteriorated considerably. Friday she was walking; Monday she was clearly dying. I had a friend call the palliative care people, who said they would be there early afternoon. Susan was unable to swallow her medication, including her fentanyl, so her pain had worsened and she was unable to get comfortable. She would ask me to help her sit up, then moments later say she had to lie down. Then in a few minutes we would repeat the process. Over and over again. It wasn’t that she was in tremendous pain – she wasn’t – it was more that she couldn’t find a position that offered any degree of comfort or relief. 

The palliative care doctors arrived around 13:00 and examined her – very gently, calmly, and compassionately. By that time Susan was struggling to communicate in more than short bursts of words. Worse, she had become anxious and agitated. The doctor pulled me out into the hallway and told me what I already knew – these were Susan’s last hours. She told me that they wanted to give her a sedative to calm her and make her comfortable, then start a morphine drip. 

They sedated her, which eliminated the anxiety but left her reasonably clear-headed, and prepared the morphine. At that point our ten-year-old son G came home from school for lunch. The timing could not have been more perfect. When she saw him come in the room Susan smiled joyfully and cried, “My baby!” 

The doctors left us alone, and G and I sat on the bed and he simply held her hand, giving it a kiss from time to time. Thirty minutes later D arrived home, and he was able to hold her hand and stroke her hair. Then they went downstairs for lunch and the doctors returned. Her primary doctor asked Susan if she wanted to be given the morphine drip. Susan hadn’t understood the question, so I explained it in English. The drip would take away the pain and make her sleep, I told her, but she would never wake up again. She looked at me for several moments, then nodded her head. Once more the doctor asked, “This is what you want?” Susan looked at me again and said, “Si.” 

Within minutes she was asleep and snoring, as was her custom. The boys went back to school. I stayed with her and read messages that people were continuing to send in. I stroked her hair. I rubbed her thin, naked limbs with warm lotion. I talked to her. Obviously I had no idea if she could hear or understand me, but I figured that Susan was in there somewhere.

Then the boys came home from school and I prepared dinner. After dinner we sat with her for a while, her breathing faint and shallow. Then D said goodnight and went to bed, and I got G ready to go to sleep. I tucked him in, said goodnight and gave him a kiss, and when I went back to our room she was gone. 

I immediately felt guilty that I hadn’t been with her the moment she passed, but then realized that I had been doing exactly what she would have wanted me to do – taking care of the boys. 

I won’t go into details about the rest of the night, but two doctors arrived around midnight to certify her death, and around two o’clock in the morning two men from the local funeral home came to take her away. The less said about that the better. Fortunately, the boys had slept through both visits and didn’t have to witness their mother being taken out in a bag. I hadn’t anticipated the bag; I wasn’t ready for it. Then, just like that, I was alone. I poured myself a glass of red wine, sat on the sofa in the middle of the night, and wept. 

When I was in high school our English class had to memorize the last lines of William Cullen Bryant’s ‘Thanatopsis.’ I’ve never forgotten them. 

So live, that when thy summons comes to join   
The innumerable caravan, which moves   
To that mysterious realm, where each shall take   
His chamber in the silent halls of death,   
Thou go not, like the quarry-slave at night,   
Scourged to his dungeon, but, sustained and soothed   
By an unfaltering trust, approach thy grave,   
Like one who wraps the drapery of his couch   
About him, and lies down to pleasant dreams.
 
Susan lived, really, truly, deeply lived. As she herself insisted, she felt lucky, and blessed. And when her time came to move to that mysterious realm, she did it with courage, and grace, and love. She wrapped the drapery of her life about her, and lied down to pleasant dreams. 

6 Comments

  1. Dear Matthew, thank you for sharing your family’s last moments with Susan. My heart breaks for you and the boys, she was loved and she was with all of you.

    Liked by 1 person

  2. It’s an honour to read your words of Susan’s last days. Thank you for sharing. It was inspiring that you kept the boys routine going and doing the usual looking after them in the midst of Susan passing on. Susan is such an amazing person who seemed to have lived her life to the fullest. You are a truly amazing family, so much love and support and just wow. You are all angels. The love lives on. My heart is with you and the boys. Susan thinking of you wherever you are x

    Liked by 1 person

  3. Thank you Matthew for sharing. What an odyssee. What pain and agony. But in the end Susan had love, comfort and peace of mind and could die in the arms of her loved ones when she was prepared and ready. The best way to transition. I admire your strength and that you were so courageous to give her the last moments at home. This is not a given. Many are afraid from disease and death and let doctors and hospitals take care of the unpleasantness. God bless you and my heart goes out to you.

    Liked by 1 person

  4. Your words just undid me. As I sit here and the tears trickle down my cheeks, I thank you for sharing all of these experiences, and for giving us the chance to get to know Susan. She was a remarkable woman and the love you share was and is truly spectacular. I’m sure it’ll continue to show up for you as the boys grow and you see pieces of her pop out and remind you again and again. Even though the time wasn’t what any of you would ever have chosen, it’s nice knowing she was able to take her leave on her own terms, and all her loved ones had an opportunity to say goodbye, good night, and I love you. May you take comfort in that.

    Liked by 1 person

  5. I’m nobody you know – I’m not sure how I saw your post, but it showed up on my feed.
    I am so very sorry for your loss. There are no words, and yet, we have to say them. Your Susan was well-loved, beautifully loved. And it seems clear that she loved well, and beautifully. Death is mysterious. We, the ones who carry on, carry on blindly, but when there are children, we have to be there for them, and they, in turn, help us find ourselves, somehow. I’m glad that you were able to tend to your children. It’s exactly right. I’ve read that people find it hard to leave when we’re around.
    I was deeply moved by your post. It was eloquent and heart-breaking, and a tribute of rare love.

    Liked by 2 people

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