Wednesday, September 28, 2011

New Hope

In January of 2006, three months after we were married, Bill and I traveled to Fowler, Colorado. We stayed with Bill’s sister Shirley for a couple of weeks, and during this time, Bill filed his company’s income tax return and took care of other matters. We left Sheridan on the bus at three in the morning. In my haste to shower and finish packing, I forgot to put on my watch and didn’t realize it until we were about to board the bus. Needless to say, I spent the next two weeks relying on Bill or other sources for the time. Fortunately, I’d packed a small radio with headphones, and I could occasionally find a station that gave the time.

One morning soon after we arrived in Fowler, Bill shook me awake and told me it was seven o’clock. Shirley’s cleaning lady was due to come at eight, and I didn’t want her to catch us in bed. At seven forty-five, after having showered and dressed, I settled in a recliner in the living room with my radio and headphones. Shirley wasn’t up yet, and this seemed odd. I also noticed that it didn’t appear to be getting any lighter. I tuned in a public radio station out of Pueblo, and after fifteen minutes of national news, a local announcer said, “Good morning. It’s six a.m.”

Barely able to contain my anger, I stomped into the bedroom where Bill was dressing. I didn’t want to yell for fear of waking Shirley. “You idiot! It’s only six o’clock.”

Bill laughed. “I thought my watch said it was seven.”

“Yeah right,” I said, as I sat on the bed and took off my shoes. “That’s why I don’t use a Braille watch anymore.”

“Well, let’s go out to breakfast.”

“You go out to breakfast,” I said, as I lay on the bed and covered myself with the blanket. “I’m going back to sleep.” I turned on my side and closed my eyes. I heard him leave and knew he was mad, but I didn’t care. As I drifted back to sleep, I vowed never to forget my watch again. Little did I know that this was the last trip Bill and I would take together.

Four days after our return from Fowler, I walked into the house on a Saturday night after a performance with my singing group. “Hi, honey. I’m home,” I called. The house seemed unusually quiet. Bill had told me earlier he was planning to make spaghetti, but I couldn’t smell it. I hurried into the dining room and stopped short. He was sprawled on the floor near his computer. His chair had overturned and lay on top of him. “Honey, what happened?” I asked, as I knelt by his side and tried to take his hand.

He moved his hand away and reached high above him, mumbling something I couldn’t hear. In a cold sweat, I picked up a nearby cordless phone and dialed 911.

In my fifteen years of working in a nursing home, I knew what to do when I found someone on the floor. Now, there was no nurse’s station nearby, no one I could alert to the fact that someone was on the floor, and that someone happened to be my husband. I was consumed by panic, as I tried to give the 911 operator the information he needed. “He’s all sweaty, and he can barely talk. I’m visually impaired so I can’t tell whether he’s bleeding. I just came home and found him like this. I don’t know what happened.”

“Ma’am, take a deep breath,” said the operator. “You’re doing fine.”

I somehow managed to calm down, and a few minutes later, the ambulance arrived. I called Dad, and he drove me to the hospital. All the while, I kept telling myselfthis was a bad dream. Any minute, I would wake up in Bill’s arms, and everything would be all right. At the hospital, there was an endless wait before we were ushered into a curtained cubicle where Bill lay. “Hello, sweetie,” he said. “I was planning to make spaghetti for dinner.”

“Don’t worry about that now,” I said, taking his hand. “How do you feel?”

“I can’t feel my left side.”

Minutes later, the doctor gave us the bad news. “Bill has suffered a massive cerebral hemorrhage on the right side of his brain, causing paralysis on the left side of his body. He may need surgery to stop the bleeding. We don’t have a neurosurgeon here so we’re sending him to St. Vincent’s Hospital in Billings.”

Billings, Montana, was about 150 miles north of Sheridan. It was arranged for Bill to fly there, and I was told that I could fly with him. There was a hotel across the street from the hospital where I could stay.

Numb with shock, I hurried home with Dad. While he waited, I tossed a few things into a suitcase. I couldn’t help thinking that I’d just returned from a trip, and now, I was getting ready for another one. At least this time, I was wearing my watch. We returned to the hospital just in time to meet the flight team. I rode in the ambulance with Bill to the airport where we boarded the small plane that took us to Billings.

The flight was bumpy. The previous summer when Bill and I flew to California, he held my hand when the flight got rough. Now, I didn’t have the comfort of his touch, as the plane dipped and soared. All I could do was grip the arms of my seat and try to think about something else. I couldn’t hear anything over the roar of the engine. I didn’t know if Bill was awake. He was probably drifting in and out of consciousness.

After about half an hour, we landed in Billings. I was relieved when the plane touched down and came to a complete stop. Another ambulance was there to meet us, and we drove to the hospital. Bill and I waited for over an hour in a cubicle in the emergency room. He slept most of the time, and I yawned and twiddled my thumbs and wondered what was taking so long. Finally, the neurologist arrived. He was dressed all in black and reminded me of the priest who visited the nursing home when I worked there. I was about to tell him that Bill wasn’t a Catholic when he introduced himself. “I’m afraid the doctor in Sheridan is right about the stroke, but in this case, surgery will do more harm than good. We’ll admit him to the intensive care unit where he can be monitored more closely.”

After he left, I called the motel across the street from the hospital and was relieved to be told there was a room available. When I told a nurse I needed assistance in getting there, she called a hospital security guard who drove me across the street. “Here’s our number,” he said when we reached the motel. “Call us in the morning, and someone will pick you up.”

Once inside my room, I checked my talking watch and was surprised when it announced it was three o’clock in the morning. Where had the time gone? Although the wait for the neurologist had been interminable, I couldn’t believe I’d spent that much time in the emergency room. As I crawled between the cool sheets alone, I wondered if Bill would ever hold me in the darkness of our bedroom and whisper, “I’ve got a woman.”

The motel provided a free continental breakfast. After several hours of fitful sleep, I found my way to the dining area and was surprised to meet one of the paramedics who’d flown with us from Sheridan. He’d been helpful during the flight, and he offered to drive me to the hospital after I’d finished eating. I accepted his offer since it meant I could get to Bill more quickly and wouldn’t have to wait for a hospital security guard to pick me up. The paramedic also helped me find Bill’s room in the intensive care unit.

Dad arrived later and spent the rest of the day helping me figure out how to negotiate the hospital and plan a route between it and the motel. Besides the cafeteria, the hospital also had a sandwich shop so I had a choice of where to eat. Food was the farthest thing from my mind, but I knew I had to keep up my strength. Dad offered to spend the night, but I was concerned about Grandma since he’d been caring for her at home and knew it wouldn’t be a good idea to leave her alone overnight. Although his presence would have been reassuring, I told him I would manage.

Despite Dad’s skill as an untrained mobility instructor, the hospital’s doorways, tunnels, and corridors all looked the same. Several times, I let myself get distracted and took a wrong turn and had to ask for directions. On a couple of nights while I was there, I went out the wrong door and couldn’t get back in because it was locked from the outside. Since I didn’t carry a cell phone, these were frightening situations, but after wandering through the deserted parking lot and down the quiet street adjacent to the hospital, I was finally able to find someone to point me in the right direction.

For the next few days, Bill remained in the hospital in Billings. He stayed in the intensive care unit for a day and a half and then was transferred to a stroke unit. He drifted in and out of consciousness. When we were finally told he could eat, he was too weak to do so on his own. I told the staff I didn’t feel comfortable feeding him because of my visual impairment. Nevertheless, meals were delivered and it was up to me to get him to eat.

One evening, I placed a fork in his hand and said, “Here, honey, eat some mashed potatoes.” After taking a bite, he hung his head and went to sleep. I woke him several times and encouraged him to eat, which he did.

When he grew tired of the potatoes, I gave him a spoon and said, “Try some peas.” He ate a few bites of these in similar fashion before he said he’d had enough to eat. I buried my face in his hair, the only part ofhis body that didn’t have that antiseptic hospital smell. I was comforted by the scent of his shampoo.

We were given the impression that he could participate in the hospital’s rehabilitation program and be home in a month at the most. But after a day in the stroke unit, it was determined that he was too weak and recommended that he be sent to a nursing home for therapy.

When the social worker asked me if I had a preference as to which nursing home in Sheridan, I didn’t hesitate. I gave her the name of the facility where I worked for fifteen years. I even gave her the phone number since I still remembered it.

Four days after we arrived in Billings, we boarded another ambulance for the return trip to Sheridan. The following day, the nursing home hosted a potluck dinner for residents and their families. Although Bill was still pretty weak, I decided to eat with him in one of the dining areas. It was nice to re-acquaint myself with residents, staff, and family members I knew during the years I worked there.

Here, residents were not left to fend for themselves at mealtime. The aide who brought Bill’s plate sat down and encouraged him to eat. When he grew too weak to lift the fork or spoon, she fed him. It was a relief to know that Bill was in a place where people would take good care of him.

As the weeks progressed, Bill slowly improved. At first, he spent most of the day in bed, only having enough energy to get up for meals and therapy. But as his appetite improved, he gained more strength.

In the meantime, I carried on a lone existence. Although I missed Bill, it was nice living alone again. I could sleep when I wanted and eat what I wanted.. When Bill did the cooking, our diet consisted of mostly fatty foods and few green and leafy vegetables. On my own, as I’d done before I married Bill, I subsisted on mostly canned and frozen foods plus salads and lost ten pounds. Bill had been nagging me for months to lose weight, and although I’d tried, it wasn’t easy. At last, he finally got his wish.

During the many months Bill spent at the nursing home, except for the rare days when I was sick and the few times I went out of town for writing workshops, I visited him daily. It was hard seeing the man who was once so strong having been reduced to someone who could do little for himself. Before his stroke, I often sat on his lap while he sang to me and plied me with kisses and caresses. Now, although he could still kiss me, he could only hold my left hand with his right, and it pained me to hear him intone his favorite songs without carrying the tune.

There were times when after returning home, I cried my eyes out. Here I was, alone in the house that was also his with his talking clock that cheerfully played a little tune and announced the time every hour as if nothing were out of the ordinary, his bird clock that chirped each hour as if everything were normal, his computer I used occasionally to check his e-mail and keep his many friends up to date on his condition. Would he ever return, bringing things back to the way they were before?

In March, we saw a local neurologist who gave us more disappointing news. “You’ll always have some numbness on your left side, and this will put you at risk for falls. I don’t know how much you will improve or how long it will take.”

As each day went by, Bill was able to accomplish more with his left arm and leg. His speech improved somewhat, and he smiled and laughed more often.

Bill had been through so much. As a small child, he began losing his vision and the use of his limbs due to arthritis. As a boy, he had surgery to correct the physical disability, but he walked with a limp. As an adult, his vision was surgically corrected, but he eventually became totally blind. Some of his joints were either fused or replaced. Several years ago, he contracted the West Nile virus and it took him months to recover. I was told by people who knew and loved him that he would pull through this as well.

After several more months at the nursing home, we had to face the fact that Bill might never regain full use of his left leg and arm. Most of his therapists said there was nothing more they could do. Only his occupational therapist, Laura Andrews,remained dedicated to his rehabilitation.

I found a house that could be more easily modified to be wheelchair accessible. With her guidance, I hired a couple of carpenters to widen a bathroom doorway and install a ramp and several vertical bars Bill could use for support while being transferred from one place to another. Laura showed me how to transfer him from his bed to his wheelchair, to his recliner, and to the commode. She also helped me figure out the best way to perform most of Bill’s personal care tasks despite my limited vision. I arranged for a home health care aide from the senior center to come three days a week and give Bill a shower and once a week to clean the house.

On September 11th, 2006, the day after our first wedding anniversary, Bill came home. He could do little for himself except eat. He was able to check his e-mail and surf the Internet on his computer, but it was difficult with only one hand.

I took care of him and did the cooking, cleaning, and laundry. I got up once, twice, even three times a night to help him when he needed to relieve himself. I wrote. Being a writer/caregiver was a twenty-four hour a day seven day a week job. It didn’t matter. We were together and happy. About a month later,, Bill started outpatient physical and occupational therapy and seemed to be improving. For a while, there was hope he would walk again.

But in January of 2007, he suffered a second stroke, not quite as severe. He returned to the nursing home for therapy. Again, Laura worked to help him regain his strength and by March, he was home once more. He resumed outpatient therapy, but in August, that was discontinued because he was showing little progress.

We have accepted the fact that Bill will probably never walk or use his left arm. It doesn’t matter. Although he’s not in the kitchen preparing supper as I write this, I still love him. Although he can no longer hold me on his lap and sing to me, he’s still my honey. Now, I hold him in the darkness of our bedroom and whisper, “I’ve got a man.”

Abbie Johnson Taylor, Author of We Shall Overcome

http://www.abbiejohnsontaylor.com

abbie@samobile.net

2 comments:

  1. Dear Abbie,
    I read the story of your husband's strokes, and it really hit the mark. As I think you know, I also suffered a catastrophic stroke about 15 years ago, which left me visually impaired, hearing impaired, unable to breathe without a respirator, unable to speak or swallow, and partially paralyzed on my right side. I was told I would never regain these functions, but fortunately for me, I am a bit stubborn, and responded "You wanna bet?" Today, I still am visually and hearing impaired, but I only use oxygen at night, talk a blue streak, and eat like a horse (albeit a very slow-eating horse!) I have been on two 5-day raft and kayak trips since the stroke, work with a dog rescue group, self-publish dog treat cookbooks, as well as many other types of writing. I am not trying to blow my horn........I am just trying to say "Don't take 'never' as a final diagnosis. Just don't let doctor predictions put barriers in the way of your husband's recovery! I will be praying for a more complete recovery, and if that isn't God's will, then I pray that peace will find you both in spite of both of your difficulties.

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  2. Hi, Bonnie, I'm glad you're able to do the things you can do despite your strokes. I think part of it is in your head. When Bill's therapists told him he wasn't making progress and there was nothing more they could do for him, I think he gave up on himself. Maybe I should have been more forceful and worked with him more at home, but who knows if that would have done any good. I think age also plays a big part in recovery. Bill is almost twenty years older than I am, and he was in his mid sixties when he had his first stroke. Anyway, we've found peace, and we're happy.

    Abbie Johnson Taylor, Author of We Shall Overcome
    http://www.abbiejohnsontaylor.com
    abbie@samobile.net

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