Sunday, February 24, 2008

Keeping the faith

I am by no means a slow person. I tend to be actually rather quick on the uptake, according to most people I know. But something I was apparently well behind the curve on was Marcie's imminent demise.

Marcie's illness had been on a progressive-regressive loop. She would improve greatly over a long period of time, then she would lose a little ground or suffer a setback.

At the time she became bedridden for good, Marcie was prepared to have a little extra help around the house in the form of hospice nurses, as palliative care with our provider meant "waiting for about six weeks."

So, when her last setback came, I focused on her recovery. I stood alone on that ground until the end.

She had had her medication adjusted the night before and she was feeling good. She had some energy. Jane was on the way to see her the next morning, which we were both greatly looking forward to. Jane visiting was always an immense bolster to Marcie.

When she woke on her birthday, and I did as well, she asked for help. She could not raise herself from the bed. Her speech was slurred. I will not further detail that day's pain for now.

By the end of it, she was in a nursing home, I was being assured that the home would help her convalesce, including recuperation of her to an ambulatory state, and her medication had been changed again.

Just one of many changed, though. It drew my eye that it was the same one which had been changed the night before. That change was never explained to me.

I was foolish enough to believe the nurses and staff at the hospital would help her walk again. I was very wrong.

The first visit to her in the nursing home, after a drive up in an ambulance the day before, was horrible. It was only the next day, and she already was being neglected.

She had not been changed, an ignominious offense to her that I immediately remedied. It was only just more horrible that she had not been tended to in such an important and basic way than the fact that now she needed to be changed at all.

I read her chart. No Range of motion exercises had been done. None had been ordered by the doctor, the nurses explained.

I performed them for her, stretching her legs and toes, moving them back and forth, massaging them gently as she watched, occasionally smiling, tired. It took a lot of energy, but she tried. She did not want to, but did it for me.

The following day, I received a call from her oncologist, who expressed shock that she was in the nursing home at all.

"My god," he said. "I don't understand. Her radiology came back and all of her brain metastases have reduced in size 'markedly,' according to the report on the MRI."

This was hope. I expressed his thoughts to Marcie, who smiled a little, weakly, and demanded that I haul away all of her birthday belongings. She allowed to give her range of motion exercises and I swore to get her home.

Jane had to go back to San Francisco, but she had provided me with some comforting food and immeasurable moral and physical support. She had also given Marcie compassionate and beloved company in frightening times. She would return.

When Marcie was finally able to come home, Kaiser said that she would not be on her feet again. I was incensed. I checked her chart, and she had not received a single day's range of motion exercise from the nursing home. But she was headed home.

After I fought Kaiser to first provide everything she would need, from a hospital bed to a transfer chair for her shower and a commode, she was brought to the house by an ambulance. She was so tired.

At least she was in my care again. I did range of motion every day. Her nurse and other support staff came by when they were scheduled or after I repeatedly demanded it. But they were not enthusiastic about it.

They weren't alone.

I noticed the rituals beginning around me. When her mother visited, there were sympathetic smiles and silent strokes of Marcie's hand, no discussion or speaking. When others visited, they either whispered or did nothing but look down at her grimly.

I never surrendered her. Every day was encouraging words, range of motion exercises and constant skin care and love. Every two hours saw me rise from bed to shift her weight a bit and prevent bed sores.

She never developed a sore after the red, nasty, open welt of one she came home with from the monstrously negligent warehouse-as-nursing-home in Poway was eradicated. Her skin was constantly massaged and tended to.

I noticed that the nurses were not performing range of motion for her and asked why. One nurse said that I should probably continue it, but it was really not in her orders. Another said she was only for skin care and vitals, or changes.

The nurse started giving me the, "you know that she is pretty close now..." speech. I knew the speech well. I ignored it and kept working, feeding, cleaning, loving and tending to, hoping and straining for my woman.

The social worker started prodding me to read the "blue book," of how to care for one's loved one and understand dying from their perspective. I already understood and refused to further fall back on my hope for her.

I do not know who it was or how it came to be discussed with Marcie, but one night, upon my return from work and after her family had left, she took my hand and squeezed with all her might.

"I don't want to suffer, honey, okay?" she asked, slurring her words as tears slid down from the corners of her eyes. "Please, don't make them revive me if I die."

I knew Marcie's wished to not be revived very well, and I felt tears on my own face as I quietly asked "Why would you suffer?"

"Because you want to make me live and she thinks you'll keep me alive if I start to die," she said, biting her lip. "Please don't?"

"Ohhhh, honey, I won't make you suffer," I said. "I promised you that. Don't believe them."

"Okay, honey," she said, trying to enunciate. "I trust you, okay. But I'm afraid."

I enveloped her on the bed, carefully hugging her as she laid there until I heard her breathing slow and go regular, felt her little heart slow and the pounding of some horrible fear grow softer. She slept and I tucked her in.

I was afraid, too. She never saw a nurse unless I was there with her after that.

I did not have time to find out who had said such horrible things to her. Her condition changed and she started falling ill of pneumonia shortly after that day.

The county burned around us and I was ordered home by the school district because of the fires. Schools were shuttered.

I focused on connecting to Marcie whenever I could. The slightest stir in her bed brought me out to her and had me holding her hand.

Every word and every recognition of me as I spilled my love over her was a little moment of peace or comfort.

I hid my trepidation, but my heart was already in ashes, and the wildfires outside rained little echoes of my agony across the map as she faded.

I accepted the possibility but not the inevitability of her death in time. But when it came, I was still unprepared.

I knew when she did depart that I had been there to the end in the faith of her potential renewal, and I stood alone only because she, the last to leave, had no choice to make that would let her stay.

To that last breath on the 29th of October, I had held hope only for her to be my wife, whole and walking, loved and loving, smiling and vibrant, again.

It was better to feel the full brunt of the pain and loss at once. I saw the people around me surrender her. Some, family and friends, did so with little choice.

Others let her go with little honest effort otherwise. To this day, I cannot help but remember how fast those paid to aid us seemed focused on her remaining time and how much more she had, as opposed to how much more she could have.

But what evicts their dark shadow from my memory of that small part of our journey together is the support of our loved ones, her loving touch and the occasional moments of clarity, which we spent sharing our love and healing our last wounds.

We had a chance, and we did everything we could to make it matter. We succeeded in some ways more than others, especially where honoring her, us and our love was concerned.

I hope that some of that honor will be reflected in this, and my future, work.