Devotion

I was with my husband when he died. We were talking. I was holding his hand. We both knew he was ready. (I'd heard the death rattle that morning...) He'd battled - there's really no other word for it - cancer, with stunning equanimity and good humor, for two years. He closed his eyes. He let out a gasp. His mouth went slack. And that was that. Jim was a talker, so it was actually comforting to me that he died with his mouth open. It just seemed right.

I was with my mother when she died. We'd been told that morning by the doctor that, after 2 weeks in the ICU, she was never going to make it back to any kind of independent living. During one of the times when she had drifted out of it, we had already made the DNR call. None of us (her five kids) are religious (understatement of the decade), but we had talked things through with her parish priest and he told us that we all knew what my mother wanted - and didn't want. So true! She had made no bones about what she thought was worth living through, and being kept alive flat on her back wasn't it. We were relieved that Father M didn't pull any Karen Ann Quinlan/Terry Schiavo Lord's will on us. We weren't going to pull a plug on her, but we weren't going to let the plug be put in either.

On the morning of her death, my sisters and I talked things through with my mother. We explained the situation and asked if she wanted the doctors to stop "doing things." She was intubated and couldn't speak, but she could nod. She nodded yes. We asked her if she knew what that meant. Again she nodded. We then explicitly told her that it meant she was going to die that day. Again, she nodded. Although we really didn't believe it, we told her you'll be with Dad. Again, the nod. 

We spent the day talking to her, singing the only words to "Sentimental Journey" that we knew, patting her hands.

She hung on until my brother arrived early evening. He didn't have a cell phone and it took hours to get word to him that this would be it. 

Once Rick arrived, my mother faded fast. (Even near death, she seemed to understand that my brother Tom, who had returned home to the West Coast when it had looked like she was going to survive, wasn't coming.) Her extremities turned cold, her breath shallow and irregular. And that was that.

I saw my father the day before he died. He'd been hospitalized for two months by that point. Today, he'd likely have been in home hospice, but this was 50 (!) years ago, and back then they let terminal patients stay put. He'd suffered from progressive kidney disease for years. Towards the end, he and my mother had made the decision that the dialysis option presented - could it actually have called for a 24/7 link to a machine? - wasn't for them. On the day after Christmas, the doctors told my mother that he was terminal. And she called us, hovering in Worcester, to give us the news. Merry Christmas!

My father hung on a month after my mother got the word, and died alone in late January. He certainly didn't want his kids - and we were kids: 23, 21, 18, 15, 11 - to see him die, and I guess he didn't want my mother, the complete and utter love of his life, to be with him, either. She had barely left his side during his final two month hospitalization in Boston, just leaving to spend her overnights at my aunt's in Newton. 

My father was in and out of consciousness that last month, but never lapsed into a full blown coma.

My beloved friend Marie died on a Wednesday. I'd seen her the Saturday before. She was in and out of it, but knew who everyone was. And she damned well knew that I'd had the pink challis scarf I was wearing for longer than the 10 years I estimated I'd had it. (That night, when I got home, I saw a picture taken at my mother's 70th birthday in which I had that scarf on. The picture was 25 years old. Marie was right.) Anyway, on Saturday evening, Marie was put on palliative sedation and was pretty much out of it. Pretty much in a coma. Until she died. But I didn't see her. The only visitors at that point were her husband, children, and sister.

Those are my deathbed experiences, and none of them involved a long coma period in which someone I loved was alive but not really. 

Not so for Bernadette Adams, whose husband died the other day at the age of 73, having spent 39 comatose years in her care. 

Her husband, Jean-Pierre Adams, was a French professional footballer. At age 34:

Adams was admitted to hospital for knee surgery in March 1982 but never regained consciousness after an error with his supply of anaesthetic. (Source: BBC)

He went into cardiac arrest, and suffered brain damage. But somehow, his body survived. And Bernadette took care of it.

Bernadette Adams is a remarkable woman, a gentle but steely soul who never once considered turning off her husband's life support machine despite his vegetative state.

Remarkable woman, I'll say!

For four decades, she has spent nearly every day caring for Jean-Pierre, changing his clothes, preparing his food, never forgetting to give him presents and often talking to him too.

She bathed her husband and changed his clothing daily - those presents were T-shirts, sweaters, and cologne. She bought pretty sheets for his bed. She made food for him - he could sit up and swallow. But there was virtually no communication. (The few times she was away from him, the nurses who watched over him reported that his mood changed a bit.) 

And that was that.

Bernadette Adams did all this while raising their two sons. (I was originally going to include a recent picture of Bernadette holding a picture of her husband, but then went with  one of happier times, with this handsome, strong, vibrant man good-humoredly riding on the kiddie-cart of his darling boy.

What must it have been like to spend your life caring for someone in a vegetative state. Does it become more or less routine? Just part of the scenery? 

While part of me thinks that the experience must be somewhat akin to taking care of a large and ancient plant, that's not fair. This was her husband. The father of her boys. So much history and emotion and love and regret and anger (must have been) and hope and despair wrapped up in there. Did Bernadette drop into bed (alone) each night in a state of unimaginable exhaustion? Were there mornings when she just said to hell with it and pulled the covers up over her head?

I read that she was always hoping that at some point, the coma would end and Jean-Pierre would be restored to her. 

Well, the coma ended, but not the way that Bernadette Adams had hoped.

But talk about devotion. 

Part of me thinks she was crazy to sacrifice her life in this way, but that was her decision. And, frankly, it's one that completely puts me in awe.

RIP Jean-Pierre Adams. Live in peace, Bernadette.