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Harder Than I Thought

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By Debra Bourdeau McLoughlin

It was harder than I thought.

We had joked about it - "Promise you'll pull the plug," my mother would say.  "Sure, no problem, " I'd answer. And we'd laugh. As time went by it was less joking and more promising. I promise I won't let you suffer. I promise no life support. I promise I won't let you lay there with tubes coming out of you.

As I watched her sleep - at least I hoped she was sleeping - I looked at all the tubes. And I thought about broken promises, and the phone call. "You have power of attorney, will you consent to surgery? Without surgery, she will not survive the night." My brother, who was there with her, pleaded for her life. And so I consented, against the thousand promises, against my better judgment.

It was harder than I thought.

My siblings and I fought over feeding tubes and respirators and extra measures and whatOld hands.jpg she wanted and what she didn't want, over medical care and nursing homes.  Over life and death. Because one did not have the heart to stop treatment and another did not have the heart to keep it going.  One believed she would get better, another believed she was already gone.   One wanted to sell her house, another held on to the hope that she might one day go home.  I consented to a feeding tube. Then, she had a stroke.

Someone had to decide and so I, the one with the power, decided.

But then I wavered. 

She trusted me. With her life.  It was harder than I thought.

Things happened quickly. And there was no sense to be made of it. The decision was out of my hands.

The tubes came out slowly, first the breathing tube. She silently screamed "Help Me!" over and over.  She pointed to the machines and shook her head, and screamed with no sound.  There are no words.  I wanted to die but I knew that wouldn't be fair.  I hadn't let her die.

A few days later, I walked into the room and she said: "Debra! You look great!"  I caught my breath and said "Thanks, Mom you look great too." So had -- inexplicably -- revived.

The IVs came out and finally, the feeding tube.  It left a horrific sore that took months to heal. But it did heal. We moved her from the hospital to a nursing home.

Over the weeks, she progressed from being spoon fed pureed food to eating the lobster tails my brother would bring her. And pizza. From being bedridden to pushing herself about in a wheelchair, visiting other residents. From being unaware of time to being painfully aware that she had missed her granddaughter's wedding. We brought pictures and tried to comfort her.

When she was on life support, her husband left.  It was not his fault, it was a decision that must have been made for reasons that had nothing to do with love or commitment. She had nothing now except her house, because she owned it with her first husband, my dad. He died decades ago after being subjected to medical treatment that offered no hope for his cancer, just radiation burns and blood transfusions and suffering.  My mother brought him home, to stop the doctors from prolonging not his life but his death. He died there, in his own bed.

It was harder than I thought. To move that reality to a different place in my mind, to make room for hope.

In the nursing home, my mother, as she always has, had her hair and nails done every week and put on her own makeup each day.  I overheard another woman bluntly say to her: "You think you are special, you have nothing." And my mother sat up straight and looked her in the eye and said: "I have my children and my home." And I realized then that we had to bring her home, not to die, but to live.

That January day was cold but sunny. The transport pulled up to the house and as mom disembarked in her wheelchair, she waved. She was wheeled into her living room, now bedroom, and she was home. Over the following months, she regained her independence, learning to take care of herself and walk again.  She spent the days in her beloved porch, watching the birds and the deer, doted on by my brother and his wife who had moved in to care for her. She was back to living and she was home. All my doubts drifted away. We had done the right thing. During the following months, we all slowly healed along with her.

Then she was rushed to the hospital. Her kidneys failed. And we had to relive it all, all the decisions about life support, DNRs, quality of life had to be made again and again over the next few months. She would rally, then fail again. We were more informed now but the decisions did not come easier. And all the issues that drove us apart the first time returned with a vengeance. I began to pray that she would die, then I would be consumed by guilt.  Hope was replaced by dread that I had failed her.  Finally, she recuperated enough to be transferred to a nursing home. On her good days, when she was conscious, the damage was cruelly evident, and took my breath away. But she always recognized me, and always called out "Debra!" when she saw me.

It was harder than I thought.

In November, she developed an infection. We decided to send her back to the hospital because she was in pain. While she was in the ER, an aide fed her and she aspirated the meal and went into cardiac and respiratory arrest. Then, in violation of her living will and the DNR order, she was resuscitated and put on a respirator. Two weeks later, we all finally agreed it was time.  My brother and I were haunted by the thought that we had sent her to the hospital, a decision that we could not know would have this result. But the reality forced a decision. The doctors told us she would not last another day without the respirator. It was turned off. And she began to breathe on her own. The hospital demanded her immediate transfer to a long-term acute care facility.

At the facility, mom continued to breathe on her own. Last week, I showed her a picture of her new great-granddaughter. She looked right at me and although she could not speak, she mouthed the words "Oh My God" which is what she always said when she thought something was amazing.

Oh My God.

Mom died today.  It is harder than I thought.

 

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