My brother soon arrived with his eldest daughter who, without hesitation, undertook the task of getting my mother dressed while my brother and I cleaned up the kitchen.
My niece and I put Mom into my car and headed for the emergency room, leaving my brother to keep an eye on Mike. "If he gets silly, spits foul language or makes gross sounds with his mouth, get him something to eat. Preferably cheese, or a cookieósomething with sugarówhatever you can find. And donít insist that he needs to eat, ícause heíll get oníry and fight it Ö let him think youíre just sharingócookies, a soft drink."
Once home from the emergency room treatment, my niece agreed to stay with her grandmother 24/7 for the foreseeable future, until I could sort out Momís financial condition and locate responsible in-home care. My mother, as had my father, always wanted to spend her final years at home. It would be up to me to make that happenóI felt accountable for her care, not only as a daughter, but also as her Durable Power of Attorney, the position she and Dad had coerced me into years earlier.
Thus began a two-year whirlwind of work and worry for meóthirty-four biopsies of her brain, looking for a tumor which turned out not to exist. No malignancy, but bleeding into the seizure-generating part of her brain which, ultimately, led to Dilantin medication, which in turn led to uninhibited behavior so unlike my prim and proper mother.
She was admitted to Northwest Hospital for further care. When she refused to eat for two days, the doctor scheduled a care-conference with my siblings and me. He shared her Living Will directives of, "no life-support, which would include her present need for a feeding tube. Should she continue to refuse nutrition," he advised, "she will surely die an unmerciful death, in a matter of days."
The room filled with an uneasy silence, brother and sisters eyeing each other in solemn reverence. The doctor broke that silence by questioning each of us, separately, "Do you agree to honor your motherís wishes, or do you want a feeding tube inserted?" He looked at me.
Difficult as it was, I answered, "Honor her wishes."
My younger brother agreed, "Honor her wishes."
My sister agreed, "Honor her wishes. Thatís what she wanted."
My older brother, living out of state, was not present.
"Agreed," the doctor said. "Iíll order that then. Are there any questions?
"Iím curious about the Dilantin," I said. "I understand itís the cause of her outrageous behavior. How long must she be on it?"
My sister took interest. "Iíd just take her off it." She grinned.
"Probably not much longer," the doctor said. "Weíll wean her off it over the next few days. There is a chance she could have seizures once off the Dilantin, but there is no reason she canít be released to go home, assuming there will be a caregiver in place twenty-four hours a day." He looked at me.
I met his glance. "Iíll find one."
And so it was that my niece, fortunately between jobs, agreed to stay with and care for her grandmother while I began the search for day-round, licensed caregivers. My inquiries were sandwiched in between the daily cleaning and dressing of the wound on Mikeís foot, his weekly checkups with the surgeon, and keeping up with my book business and home chores.
Once Mom got home from the hospital she began to eat again. My brotherís daughter took charge of Momís care while I tried to locate a suitable replacement. As it turned out, I did have to hire and fire a couple of caregivers along the way, but still maintained a sense of consistency for Mom. I ended up with two ladies who shared the week in three and four-day shifts. They were wonderful.
At the end of October, Mike underwent surgery to amputate his left leg, below the knee, two years and four months after the first one. Thereafter we were again making regular visits to the prosthetist in Seattle and to check on Momís care in Edmonds.
The following year, my nephew updated the old bedroom in our house, relieving my worries of emergency medical techs ever having to help Mike in that horrible room. I ordered two inexpensive twin beds, ending my need to sleep on the floor, and stored Mikeís old sleeping cot out in the carports.
Over the next months, Mom had more brain strokes; more visits to the hospital, and finally was relegated to a hospital bed in the living room. To cut down on the number of phone calls I received asking about her condition, I started mailing newsletters to her circle of friends every three months or so.
Somewhere in those long months of tedious chores, Mike learned to walk on his two "plastic" legs. The wheelchair became his main method of locomotion, with me as the operator. As his mental acuities dwindled, his frustrations increased. I found it hard not to argue with him when heíd insist that the sun rotated around the Earth, when a public announcement system did not need a microphone to transmit. "Just speak into that other speaker," heíd insist. Another time, inside the Northgate Mall where we had met with Jon, a former coworker of Mikeís, the conversation turned to diabetes and the loss of circulation and then amputations. Mike took issue with that truth, shouting so loudly that all shoppers around us stopped to stare. "It was not caused by diabetes!"
Jon, also a Type I diabetic, looked shocked but politely changed the subject, realizing that Mike was no longer the sharp-minded fellow he knew during their work years together.
With my days filled with caring for Mike, seeing to my motherís and her caregiversí needs and trying to keep up with my book business, my world spun at warp speed, nearly beyond my comprehension, one year into another.
In mid-1992, it became apparent that Mom was failing more each day. She barely knew any of her family that came to see her. My younger brother and I began scoping out nursing homes in case the need should arrive. I put her name on the waiting list at a non-profit Lutheran home in north Seattle and carried on with my busy life.
Just after Thanksgiving that year, I felt compelled to put up our small, artificial Christmas tree. I decorated it, and once again played Christmas LPs on the old stereo. I bought Mike a warm flannel shirt and a little mouse in angelsí robes holding a long golden horn to hang on the tree topósomething he could add to his long-held collection of tiny mouse-people.
In my research of nursing homes for Mom, I learned about an attorney familiar with DSHS rules and regulations and made an appointment for December 7th, Pearl Harbor Day, to confer with him regarding her long-term care. I knew she might well out-last what funds she had left to stay at home.
Mike chose to stay inside our truck, in the parking lot, while I waited inside the building for my appointment. The lawyer was running late. I waited and waited, thinking about Mike out in the truck Ö I hoped he wouldnít slip into an insulin reaction and try to drive off on the icy streets. He didnít, thank Godóbut I didnít know that until my appointment was over.
The attorney advised me to use my Durable Power of Attorney to create a document naming myself as rental agent for my folksí house and file it with the county auditor. If Mom needed to be moved into a nursing home, I should move her when she still had enough funds to pay for the first three months. I followed his instructions to the letter.
We stopped at my motherís on the way home that cold day. She and the caregiver were doing well. I left more cash in the food envelope, and took the receipts that were there home with me to reconcile.
Our cairn terrier, Shotgun, jumped with joy to have us back home. Mike was still shivering, so I turned up the heat and fixed dinner, welcoming the end of this long, cold, arduous day.
Around three oíclock the next morning, I awoke when Mike sat up in his bed, fastened on his legs, and made his way to the wheelchair.
"Are you okay?" I spoke my usual, unwelcome question.
"Just going to sleep in the recliner."
I went back to sleep and woke again around seven. I went to the living room, where he lay in his recliner, hand on chest. His eyes opened.
"Morning," I said.
"Morning," he answered.
"Do you feel okay?"
"Not really." His voice was weak.
"Are you in pain?"
"Does your arm hurt?"
"Yes." He moved his hand to his right arm.
"Feel sick to your stomach?"
"Okay. Iím going to get dressed and take you to the emergency room."
"No. Iím fine."
"No. Youíre not fine. Weíll go find out for sure."
I drove him to the hospital, parked in the no parking zone and wheeled him inside, handing a paper I always carried with all his medical information to the nurse behind the counter. "I think heís having a heart attack."
"How does he present?" she asked.
"Iím not a nurse," I replied.
Immediately she called for help, and he was wheeled out of my sight. I went back outside to move our vehicle, then returned. They escorted me down a hall and behind a curtain where Mike lay on a gurney with three medical people around him.
They asked him if he wanted to try a new, experimental medicine that might dissolve any clot that could be causing the attack although they didnít know what else it might do. I was skeptical. Mike agreed.
I stayed with him well into that day, leaving around dinner time so I could check the post office box and get dinner for the dog and myself. I was back the next morning for another long day. Around noon, the doctor pulled me aside in the hall and explained to me that Mike had had a very significant heart attack, and was still having small ones. "How much should I tell him?" he asked.
"He needs to know its bad," I said. I wasnít prepared for this question.
I stood by Mikeís bed all day, until one of the nurses told me I should go home and get some rest. Sheíd call if there was any change in his condition.
So I did. Go home. And slept soundly until the phone rang at four-thirty the next morning. It was the nurse.
"Mikeís getting very upset ... trying to pull out the tubes, asking for his clothes. Can you come calm him down?"
"Let me grab a quick shower, and Iíll be right there." I hung up and ran to the shower, a five-minute wash and shampoo at most. Then out into the frosty mist and to the hospital, wet hair and all.
Mike calmed down when he saw me, and we exchanged hellos. Again I stood at the rail of his bed, watching the blips on the monitors as he dozed.
"Helen Ö" A nurse entered. "Thereís a fellow here to see Mike. Says heís Jon, a former coworker. Can I let him come in?"
"Yes, of course."
Mike woke up when Jon came in, cane in hand. "How ya doiní, buddy?" Jon walked to the bedside and they shook hands.
"Hanginí in there, I think." Mikeís reply was weak. He dozed off again. Jon, a good-sized man of mild manner, sat on a stool in the corner, and we visited quietly.
The doctor called me out into the hallway again, to let me know that Mikeís heart was barely beating. "I donít know why heís still alive," he said. "Itís time to call any family that might want to see him."
"So itís time to face it ... "
"Yes." He nodded, and put a caring hand on my shoulder.
The nurse offered to let me use a phone at the ICU desk. Mike had no living family to notify, but I called my sister, quickly explained the situation, and asked her to let my brother and nieces know.
Back in the ICU room, I watched Mike between glances at the monitor that showed his heart rate slowing and blood pressure dropping. At forty-seven minutes past noon the monitorís lines went flat.
A nurse came in and turned off the machines. "Heís gone," she said. "Is there anything I can do for you?"
I lifted the hand I was holding, and moved it toward her. "Would you take off his wedding ring?" Mike had told me time and again to take if off if he should die.
"Donít let the undertakers get it," heíd say.