Too Funny!Talking husky puppy
From Suppositories to Enemas
In the six years I cared for Bill, if it wasn’t one thing, it was something else. Often, he had trouble peeing, and all I could do was let him sit on the commode in the bathroom until he succeeded or gave up. Then a few minutes after I settled him in his recliner, at his computer, or outside, he would insist he needed to go again, and the process would start all over. This also happened at night, and I was often up for an hour or more, waiting for him to pee. When he finally figured out how to pee lying down, the night routine became a lot easier.
He was frequently incontinent. Many times in the middle of the night, I leapt out of bed and made a mad dash to sit him up and give him the urinal, only to discover it was too late. Sometimes while I pulled him to a sitting position on the side of the bed, he was urinating, and the liquid dribbled to the floor. Fortunately, I had a towel in place to solve that problem, but after a night of marathon urine collection, the sheets were soaked, and I had to change them the next morning. Later, it occurred to me to put a pad underneath him in bed, but even then, the sheets got wet.
“Maybe I should go to Sheridan Manor,” said Bill after one such episode.
It was tempting, but the fact that I was tired of constantly washing and changing sheets was no excuse to send him to the nursing home. “Of course not, honey, we’ll figure this out,” I said, more to assure myself than him.
These episodes didn’t only happen at night. During the day, I often dropped what I was doing and rushed to him in the recliner when he said he needed to go to the bathroom. By the time I had the wheelchair in place and was ready to transfer him, the pad underneath him was already soaked, and I had to change his pants instead.
I called the urologist many times and was told to bring in a urine sample. Fortunately, the office was located across the street from the YMCA where I participated in water exercise classes three days a week, and when the weather was bad, I often rode with people who were glad to swing by and wait while I dropped off the sample. Many times, those samples came back positive for infections, and Bill went through quite a few rounds of antibiotics. When I actually took Bill to see the urologist, he admonished him to drink plenty of water, but as with many teen-agers, this advice went in one ear and out the other.
Bill preferred Pepsi and Mountain Dew with his meals and in between. At least he wasn’t an alcoholic, I thought, as I opened can after can of these soft drinks for him. In the morning, he liked to drink peach juice with his breakfast, but that was the only hydration he wanted. One day, Jaylynn, one of his shower aides, told us about Propel, a bottled water that came in several different flavors with no additives or preservatives. “Bill, you’ll love it,” she said. “It tastes really good, and you don’t get all that sugar and other stuff you get with pop. The grape flavor is the best.”
I figured it was worth a try so the next time I went to Walmart, I bought a six-pack. One sip and I was hooked. Bill was skeptical but soon grew to like it and drank more of that and less carbonated beverages.
Bill’s bathroom problems weren’t limited to urinating. He often suffered from blocked bowels. Fortunately, there was no incontinence here, but as a result, he often spent long periods of time on the commode before succeeding or giving up. We tried a couple of over the counter stool softeners, but these didn’t work. One morning when I transferred him to the wheelchair after another unsuccessful attempt, he said, “Honey, I think I should go to Sheridan Manor this time. They can give me enemas and stuff like that to help me.”
“Are you serious? You really want to go back to Sheridan Manor?”
“I have to, or I could die.” There was a note of desperation in his voice.
This was during the time we were waiting for the new lift, and Bill was receiving his showers at Sheridan Manor. I called and spoke to a different admissions coordinator, this time, who was sympathetic and told me I could bring him in when he was scheduled for his shower.
Bill spent a few days at Sheridan Manor and was given suppositories and milk of magnesia, and that seemed to clear up the problem. When he was discharged, the nurse admonished him to drink plenty of fluids and take milk of magnesia or some other laxative regularly, but again, those ideas went in one ear and out the other.
This was in November of 2008. In January of 2009, Dad and I took the trip to Florida we put off the year before because of Andy’s marital difficulties. Soon after we returned, Bill’s bowels started blocking up again. One morning, he said, “I think I’d better go to Sheridan Manor again.”
“You’re kidding! I just brought you home a couple of weeks ago.”
“They need to give me another enema.”
“An enema? They didn’t give you one of those the last time you were there, did they?”
“No, I mean a suppository.”
A suppository, I had one of those in college when I was hospitalized for a high fever. I was sick to my stomach, and when I told the nurse I didn’t think I could get a Tylenol down, she shoved it up my butt instead. I’d heard of people giving themselves suppositories so how hard could it be? However, I realized that if Bill couldn’t wipe himself after a bowel movement, he couldn’t give himself a suppository.
Since the idea of inserting a suppository didn’t appeal to me, I did the next best thing. I called Bunni at the senior center to ask if the aides could administer them after his shower if necessary. My hopes were dashed by three words. “It’s against regulations.” Kathy, our aide at the time, used to be a nurse so she would have known how to do it. How ironic it was that regulations prohibited certified nursing assistants from administering suppositories, but it was okay for an uncertified family caregiver to do so.
Feeling discouraged, I placed another call to Sheridan Manor’s admissions coordinator. “Why don’t you bring him in, and one of the nurses can show you how to give him a suppository?” she said.
I didn’t like this idea any better but figured it was the best solution. However, when I suggested this to Bill, he refused. “Honey, are you sure? We can’t keep traipsing back and forth to Sheridan Manor whenever you need a suppository. Please let me try.”
“No, they need to do it.” To tell the truth, I was relieved. After only two weeks at home with him and his uncooperative bowels, I was ready for another break.
After a week at Sheridan Manor, Bill was ready to come home and willing to let me learn how to give him his suppositories. During his stay, I watched the nurse insert the suppositories and realized that although it was an unpleasant task, it wouldn’t be hard to do. Since Bill could no longer do his business while sitting on the commode, I asked the nurse what kind of bed pan I should use with him at home. She recommended a fracture pan, and since the local pharmacy we used for our prescriptions carried them, I bought one.
When we approached the social worker to ask that Bill be discharged, she offered to have one of the nurses show me how to administer suppositories. Sharon was a nurse I’d worked with before when I was employed as an activities assistant. She gave me a pair of gloves, and after I put them on, she showed me how to roll Bill onto his side, take the suppository out of the package, find his butt hole, and insert it. The gloves made it difficult for me to feel what I was doing, and Bill’s giggling didn’t help. I finally found the bull’s eye and felt that wonderful, familiar sense of elation that came with accomplishing Bill’s personal care tasks. I had more trouble at home, although I didn’t wear gloves, but since Bill still had some feeling down there, he could tell me if the suppository was going in the right place. Eventually, like all other tasks associated with Bill’s care, I got it down to a fine art.
Unfortunately, Bill’s bowel trouble didn’t stop then. One day a month later, Bill had trouble peeing again. At four in the afternoon, when he hadn’t urinated in twelve hours, I was concerned, but for once, he wasn’t. “Don’t worry, honey,” he said as I kissed him while he lay on the bed. ‘I’ll pee eventually.”
I went next door to give the local newspaper to John and Diane after I finished reading it. Since John had been a pharmacist, I asked him what to do. He suggested sitting Bill up for a while to see if a change in position would get his bladder to cooperate. Since he could no longer do his business while sitting on the commode, I would have to put him in his wheelchair or the recliner and then lay him back down again if he suddenly felt the urge. Since my singing group was practicing that night, I had little time and a million things to do. I needed to do something, though. He couldn’t go on like this. Much to my relief, when I walked into the bedroom with John’s suggestion on my lips, he held out the urinal and said, “I’ve got something for you.” I was never more glad to empty a full urinal.
However, he hadn‘t moved his bowels in three days which wasn’t unusual. That night before we went to sleep, he peed again, and I offered him a suppository. “No, it can wait till morning,” he said. Because I didn’t want to get up in the middle of the night to wipe him, I didn’t push it, but later, I wished I had.
At two o’clock the next morning, Bill said, “Honey, I need to go to the emergency room.”
“I can’t pee. I can’t poop.”
“Why don’t I give you a suppository? Maybe that will help.”
“No, I have to go to the emergency room. I could die otherwise.”
Since the paratransit service didn’t run in the middle of the night, the only way to get him to the hospital was by ambulance. This was crazy, I thought, as I picked up the phone and called 911. I contacted them many times before when Bill was on the floor, and I couldn’t lift him, and the operators and paramedics knew us. When I explained the situation, the operator on duty assured me the ambulance would be there shortly.
I then realized that if he was going to the hospital, they would need a list of his medications. Still half awake, I stumbled into my office with the intent to print the list on my computer, but when I saw the lights of the ambulance turning into the driveway, I knew there wouldn’t be time. After showing the paramedics into the bedroom, I dashed into Bill’s bathroom with a zip lock bag and tossed all his pill bottles into it. Since then, I kept a printed list in my fanny pack, back pack, and gym bag.
The paramedics discovered that Bill had a fever. This was serious, I thought, as they loaded him into the ambulance. Since I was still in my pajamas after the paramedics left, I quickly dressed and called John, waking him up of course, and he drove me to the hospital. When I was shown into Bill’s cubicle in the emergency room, the stench of fecal matter assailed my nostrils, and I
was relieved. “They dug it out with a chisel,” he said. “It hurt like hell.”
My relief was replaced by anger. “If you’d only listened to me when I suggested giving you a suppository at bedtime, we wouldn’t be here now at this ungodly hour,” I said, as I flopped into a chair near his bed. I knew I sounded like one of those nagging wives of hen-pecked husbands, but I didn’t care. John left, telling me to call if I needed him.
For the next four hours, I waited while Bill was given a laxative and two enemas. At six in the morning, Bill was finally ready to go home. The nurse had apparently overheard my earlier outburst because she said, “Okay Bill, it says here on your discharge instructions that you need to listen to your wife.”
Bill and I both laughed. We were both in better moods now that he was empty of waste. Since the doctor explained that Bill’s fever was caused by the stress his body underwent as a result of the blockage, I didn’t have to worry about that.
We were sent home with a tube of butt cream and a prescription for a laxative. Because the paratransit service still wasn’t running, the local ambulance service was again called, and the same two paramedics who took him to the hospital arrived to bring him home. I hated to call John again at such an early hour so I asked if I could ride with them, and they agreed. As we pulled out of the hospital parking lot, Bill said from the stretcher in the back, ‘Let’s go to the Rainbow Bar.”
”I don’t think it’s open yet,” I said, relieved that he still had his sense of humor despite what he’d been through in the past few hours.
At home, we settled back into our usual routine. To my relief, Bill liked the taste of the liquid laxative that was prescribed, and I gave it to him twice daily with his meals. The nurse at the emergency room said I could add it to his drink, but since Bill didn’t always finish his beverages, I decided against that. He also took an interest in eating fresh fruit: oranges, strawberries, and watermelons when they were in season. Eventually, he no longer needed the laxative and didn’t require suppositories as often.
Because the strokes somewhat effected his ability to communicate, he had a hard time thinking of the word “suppository” when he needed one. He often said he needed an enema, but I knew what he meant. One morning however, he threw me completely off guard. I’d just finished showering and dressing and was about to get him up when he said, “Honey, give me a butt fuck.”
“Oh, I mean an enema,” he said, laughing.
“You silly goofball,” I said, and we embraced and kissed.
In the spring of 2009, one of the aides who gave Bill his showers three times a week suggested we get a roll-in shower. This way, instead of transferring Bill from the commode to the shower bench in the bathtub, she could just wheel him right into the shower. Since I still had some money left over from Grammy Hinkley’s estate after paying off the mortgage on the house, I called A Plus Plumbers. I’d dealt with them before when we had sewer trouble. Jack, the firm’s owner, came with Garrie, a carpenter, to look at the situation and gave me a reasonable estimate. This was in the middle of April. In May, Dad and I planned to travel to Florida to visit Andy and his family in their new home. I arranged for the new shower to be installed while I was in Florida and Bill was at Sheridan Manor.
At the end of April, I was traveling home with Rose, another writer, from Casper, Wyoming, about a two-hour drive south of Sheridan, where we attended a poetry workshop. When we pulled onto the highway, I called Bill at Sheridan Manor to tell him I was on my way back and would see him the next day when he came home. After talking to him, I put my cell phone back in my pocket and reached for my bottle of Dr. Pepper I’d purchased at a service station before leaving Casper. Just then, my phone rang. “Oh, he really misses you, doesn’t he?” said Rose with a giggle.
Because I couldn’t read the display with a naked eye, I had no way to know who was calling so after flipping open my phone, I fought the urge to say, “Hi hunky poo.”
It was a good thing because the caller wasn’t Bill. It was Andy, calling to tell me that he and Kathleen were having marital problems. To make things worse, cell service on the highway was spotty, and we kept getting disconnected. A couple of times, Andy called back and poured his heart out to me but didn’t get far before we were both flung into the abyss of no cell service.
However, I gleamed enough from our conversation to realize that the last thing they needed was company. Besides, they were in the process of moving to another house in Jupiter, and when we visited them the previous year, they were also in the process of packing. It seemed like we always visited them at a bad time. After talking it over with Rose during the long drive back to Sheridan, I decided that it would be best for Dad and me not to visit the next month as we planned. When I got home, I called Dad and explained the situation, and he agreed.
I then called Andy, and it took some doing to convince him. We would have been a diversion for him, but the last thing Kathleen needed was a visit from her in-laws. After further discussion without interruptions this time, Andy reluctantly agreed. He and Kathleen patched up their differences, but a year later, they separated and eventually divorced.
I was actually relieved we weren’t going to Florida in May. After making the arrangements for the installation of the shower in Bill’s bathroom, I was increasingly apprehensive about strangers coming to our house while we were gone. Although I hated being around when power tools were used, it was good to know that I would be there while the old bathtub and shower were taken out and the new shower constructed and installed.
Bill still had to go to Sheridan Manor while this was being done since not even the toilet in his bathroom would be usable, and there was no way to get him into my bathroom. He took it in stride, especially when I pointed out that once the new shower was installed, we could occasionally take a shower together. We never did this because I realized later that I couldn’t have transferred him from the bed to the commode as easily as the aides from the senior center.
On a Monday morning in mid May, work on the shower began. By the end of the week, it was finished, or so we thought. Late Friday afternoon when Bill came home from Sheridan Manor, I wheeled him into the bathroom so we could explore the new shower together. We then discovered that instead of a roll-in shower, we had a step-up shower. Apparently, Garrie misunderstood what we needed. “This isn’t going to work,” said Bill.
“You’re probably right,” I said with a sinking heart.
On Monday morning, Garrie was planning to return to perform some finishing touches to the shower before it could be used. Bill’s next shower was scheduled for the following Wednesday. Before Garrie arrived, I called Bunni, our case worker at the senior center and asked her to come and take a look. To my relief, she determined that although he couldn’t be rolled into the shower, the aide could still position the bench inside the shower and then transfer Bill from the commode to the bench as before. “It’ll still work,” she said. “You just won’t get as much bang for your buck.”
I was willing to let it go, relieved that Bill could continue to be given his showers. But for the first and only time since his strokes, my husband took some initiative. He called Jack at A Plus Plumbers and asked him to give us an estimate on fixing the shower so he could be rolled into it. Jack and Garrie came the next day and quoted another reasonable price for raising the floor so it would meet the shower. This involved installing extra flooring in the bathroom. Jack and Garrie said they could start on Thursday and assured me it would only take one day. “I don’t have to go to Sheridan Manor,” said Bill. “I can just lie down and use the urinal.”
By this time, he figured out a way to use the urinal while in bed without making a mess. In the middle of the night, all I had to do was empty the urinal when he was finished. He eventually got to the point where he couldn’t do his business on the toilet at all and had to lie down frequently during the day to urinate and move his bowels.
Jack and Garrie were true to their word. They arrived bright and early Thursday morning and by late afternoon, the project was finished. Bunni came in the afternoon to inspect it, and to my relief, she said, “This is great. It’s going to be so much easier.”
The original floor in Bill’s bathroom was made of linolium. The extra flooring was tile, and the process created an upward slope from the kitchen into the bathroom which was easily negotiated with the wheelchair. However, the tile was slippery so I had to be careful when the floor was wet. I occasionally slipped and nearly landed on my back side when I encountered a wet spot I didn’t see. Fortunately, I never slipped while transferring Bill to and from the commode.
It was a relief having the new shower, especially since it made the aide’s job easier. In the fall however, she complained of pain in her lower back and thought it was caused by transferring Bill from the bed to the commode. Bunni came one morning and observed her to see if there was anything she could do differently that wouldn’t cause strain on her back. After watching the aide transfer Bill from the bed to the commode, she said, “I wish I knew how to build a better mousetrap.” I thought, okay, maybe we didn’t have a solution to this problem, but I had a great title for a poetry collection. Hence, How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver was published in December of 2011.
Bunni called in a physical therapist to see if he had any ideas. Michael, whom I knew when I worked at Sheridan Manor, was now employed by an outpatient physical therapy program. After observing the transfer, he suggested a lift that would make the transfer easier. Bunni then told us that because of the risk of injury to the aides, her agency could no longer provide the personal care Bill needed until we acquired the lift. She gave me the name of a medical supply store in Billings, Montana, where we could order the lift, and Medicare would pay for it.
We weren’t left to fend for ourselves, though. Bunni contacted Sheridan Manor to see if Bill could go there just for his showers. Jean, the director of nursing, whom I also knew when I worked there, immediately called me and we arranged for a time when Bill could go there three times a week to get a shower.
After a month of red tape, the lift finally arrived, but we discovered another problem. It was a hydraulic lift, and because of the way our bedroom was set up, Bill had to be raised out of bed and moved a few feet to the commode before being lowered onto it. The lift was hard to push across the carpet without Bill’s weight. Pushing it with Bill on it would have been almost impossible. We needed thinner carpet.
My funds from Grammy Hinkley’s estate were pretty much exhausted after paying off the mortgage on the house and for the shower renovation. Fortunately, Wyoming Independent Living Rehabilitation, a private agency, had limited funds for such purposes. We applied for and received funding to replace the carpet.
This meant that all the furniture in the bedroom had to be moved out while the old carpet was removed and the new laid. Fortunately, the project would take only a day, and Bunni found volunteers to help us move the furniture. “All you have to worry about is taking care of Bill,” she said. “We’ll do the rest.”
She was true to her word. Early one morning in October, she arrived with a couple of strong guys, and everything was moved out of the bedroom in record time. An hour later, a crew from the carpet store arrived, and much to my relief, by one o’clock that afternoon, the project was completed and furniture and other items moved back into the bedroom. During the process, the living room was crowded with the bedroom furniture which made it impossible to get Bill to his recliner. Fortunately, he was content to work on his computer before going to Sheridan Manor to get his shower. He returned around lunchtime, and by the time everything was done, he was ready to lie down.
We then discovered another problem we didn’t foresee. Our bed had coasters which wasn’t a problem on the original carpet. With thinner carpet, it moved more easily which made transferring Bill more dangerous. Fortunately, Bunni had a solution. She called in another volunteer who put blocks of wood underneath the coaster so the bed wouldn’t roll.
At first, Bill didn’t like the lift because it suspended him in mid air while he was transferred from the bed to the commode and vise versa. I almost laughed when I saw the process for the first time because it reminded me of the song about the man on the flying trapeze. Because of his lack of vision, I could imagine how insecure he felt during the process. We kept reassuring him that he was securely fastened into the sling and wouldn’t fall, but after his first shower, he said, “I’m not using that damn lift again.”
It took one month to get the lift and another for the carpet in the bedroom to be replaced. For two months, Bill trapsed back and forth to Sheridan Manor for his showers. I had to dress him every day, not just on the days when his showers at home weren’t scheduled. I was ready for a break. “Please, honey, just try it for another week,” I said. “It takes some getting used to.”
Bunni assured us that Bill could continue to have his showers at Sheridan Manor indefinitely if he no longer wanted to use the lift, but I wasn’t about to settle for that. Because Bill joked about girls seeing him naked, I got an idea. “Okay, honey, just imagine you’re naked on a flying trapeze in a big circus tent, and fifty women are in that tent who paid $50.00 each to see you naked on that flying trapeze, and you’re going to get all that money in the end.” It sounded outrageous, but it worked. After another week, he seemed happy as a clam, being propelled across the room, hanging in mid air.
A Home of Our Own
Bill might have fallen into a deep depression if it weren’t for the fact that his wife was now a published author. In August, Dad and I took another trip to Los Alamos, New Mexico, to visit Andy and his family. Bill went to Sheridan Manor for respite care, as he did many times when I was out of town on vacation or at writers’ conferences. Although he preferred being at home, he understood that there were times when I needed a break, and he made a few friends during his previous stays that made going there more bearable.
In September, I started promoting We Shall Overcome. One of the things Laura helped us figure out was how to get Bill in and out of Dad’s car so we could go places with him when the minibus wasn’t running. Because most of my promotional events were in the evenings or on weekends, this made it possible for Bill to be by my side, as I signed books and conducted readings.
One Saturday afternoon in late September, we returned from a book signing to find a message on the answering machine from my uncle in Denver, asking me to call him. My grandmother on my mother’s side of the family was hospitalized a few days earlier with pneumonia, and after what happened with Grandma Johnson, I feared the worst, as I dialed his number. My suspicions were confirmed when Uncle Jack told me that Grammy Hinkley had passed, and her funeral was scheduled for the following Thursday. I called Dad, and he agreed to drive to Denver to attend the service.
The only thing that remained to be done was to make arrangements for Bill’s care in my absence. I wasn’t sure if the nursing home would take him on such short notice. When we went to New Mexico the previous month, I called the admissions coordinator at least a month in advance. Now, all I could do was hope for the best.
To my relief, the admissions coordinator was sympathetic and assured me there would be no problem. He was an older gentleman named Bruce, and he hadn’t been there before. I told him we would leave Wednesday and drop Bill off on our way out of town.
On Wednesday morning when we arrived at Sheridan Manor, Bruce was waiting for us. He escorted us to Bill’s room and helped me get him settled and unpacked. As Dad and I were leaving, Bruce said, “I’m sorry for your loss. Don’t worry. We’ll take good care of him.”
When we reached Denver, I was once again pressed into service as funeral singer. Since I didn’t bring my guitar, and no piano was available, I sang “Amazing Grace” without accompaniment during the service. This time, I got through it without the urge to cry since Bill wasn’t bawling during my solo. Afterward, a reception was held at the church where the service was conducted, and after that, people gathered at Grammy’s house for sandwiches, salads, and desserts. Andy and his family came from New Mexico, and I was reacquainted with my cousin from Alaska whom I hadn’t seen in years. I also met Grammy’s friends I hadn’t seen before. I brought a few copies of We Shall Overcome and sold one or two of them.
Dad and I stayed in Denver an extra day and had tea at the Brown Palace and saw a play in Boulder. Early Saturday morning, we had breakfast with Andy and his family and others at a pancake house before making the long drive back to Sheridan. We arrived early in the evening and picked up Bill at the nursing home. I’d called him every day from Denver, but it wasn’t the same as being together. Although I had a great time in Denver, it was good to get home, even if unpacking and settling in required twice as much work. Life continued on as usual.
In the spring of 2008, John suggested I again try for a loan to buy the house. It was getting more and more difficult for him to carry the mortgage on our house as well as his own property. Since Bill’s credit card debts had been dissolved as a result of us filing for bankruptcy the year before, I figured it was worth another try. This time, I went to a different bank where I hadn’t done business before and was surprised by the helpfulness and optimism of the loan officer. She assisted me in filling out the loan application and said that because of our credit scores, there wouldn’t be a problem.
Then one rainy May morning, as Bill sat on the side of the bed, clutching the pole, and I maneuvered the wheelchair in place so I could transfer him, he said, “I think the roof is leaking. It’s dripping on my head.”
I placed my hand on top of his head, and to my horror, I felt a drop a moment later. My heart racing, I said, “What do I do?”
“Put me in the chair. Then call John.”
As I transferred him to the wheelchair, my mind was reeling. “You’ll probably have to go to Sheridan Manor until we can get the roof fixed.”
“No, a roofer can put a tarp over the place where the roof is leaking until they can fix it.”
Relief and hope flooded through me, as I dialed John’s number. When I told him what was going on, he promised to call someone right away. About twenty minutes later, as Bill predicted, a roofer arrived, and the leak was temporarily stopped. “Tell Suzanne at the bank,” Bill said. “She can add the cost of the roof to the loan.” Suzanne was the loan officer. When I called her, she said that was possible, but she would need an estimate. I gave her the name of the roofer John called.
As it turned out, we needed a new roof, but Suzanne said adding that cost wouldn’t be a problem. Fortunately, the rain eventually let up, and our days became warm and sunny with no worries about the roof. It took three months to cut through all the red tape, but on a sunny day in August, Bill and I and John and Diane met at a local title company to close on the house. Because of Medicaid’s restrictions on property ownership, I registered the house in my name only but reassured Bill it would always be his home, too, and he understood. “Congratulations! You’re a homeowner,” said Suzanne after all the papers were signed.
“My wife, a published author and a homeowner,” said Bill, putting his arm around me, as we sat at the conference table.
“Oh you,” I said, leaning toward him and placing an arm around his shoulder. He planted a slobbery kiss on my cheek, much to the amusement of everyone else in the room.
We planned to have lunch at a local pizza joint to celebrate after the proceedings, but Bill was tired so we went home and ate frozen pizza from Schwann. As we sat at the kitchen table, enjoying our first meal in a home that now belonged to us, I said, “We really need to figure out a better way to keep this house cool.”
The house came with a swamp cooler, but it did no good when the weather was humid. Bill’s window air conditioner that we used in the previous house didn’t work here because all the windows opened sideways. “We could have ceiling fans put in,” Bill said. Our previous house had ceiling fans in almost every room, and it made a big difference, even when the air conditioner wasn’t running. “Wouldn’t that be kind of expensive?” I asked.
“It wouldn’t cost that much, and we could have an electrician put them in.”
“Shouldn’t we wait until we get the roof fixed?”
“No, that doesn’t matter.”
When I called an electrical firm, I was told they could install ceiling fans but didn’t sell them. Dad drove me to Home Depot where we picked out four ceiling fans: one for the kitchen, one for my office, one for the living room, and one for our bedroom. It took about half a day for a crew of electricians to install them, and our home was in a bit of an upheaval while that was being done, but it was worth it. Not only could these fans help keep our house cooler, but they could be reversed to keep the house warm during the winter months and cut down on heating costs. This made it a worthwhile investment all around.
In the middle of September, the work on our roof began. It was a noisy, hectic couple of weeks while one crew tore off the old roof, and another installed the new one. The crews worked from seven in the morning until seven at night, and during that time, getting in and out of the house was a challenge, depending on where the men were working. Fortunately, Bill didn’t need to be taken out for appointments, and for once, he didn’t ask me to park him outside to sit in the back yard where he loved to listen to ball games or talking books when the weather was favorable. I was also relieved it didn’t rain during that time, although the contractor assured me that tarps could be put down to prevent leaks.
By the beginning of October, we no longer had to worry about raindrops falling on our heads while in the house. In November, I learned, much to my surprise and delight, that I had inherited a sizable amount of money from Grammy Hinkley’s estate. I paid off the mortgage on the house and put the rest in savings. On Turkey Day, Bill and I had a lot for which to be thankful.
When a Caregiver Gets Sick
In the six years I cared for Bill, I often wondered what would happen if I became too sick. After Grammy Hinkley’s death, it was a relief to know that Sheridan Manor would take him on short notice, but getting him there would have been tough if I were sick. I would have had to get him up, dress him, feed him, and pack his belongings in preparation for his stay. I couldn’t have called on the senior center for help because Medicaid wouldn’t have covered services from two sources in one day. Laura, who helped me when I took Bill back to the hospital after his second stroke, moved away several months after Bill’s recovery, and we eventually lost touch. I could only hope that one of the many aides who gave Bill his showers and cleaned our house over the years would help us out of the goodness of her heart, as Laura did. Fortunately, this scenario never occurred, but there were times when I couldn’t care for Bill because of health issues.
In May of 2008, while we were in the midst of applying for a loan to buy the house, Dad and I took another trip to New Mexico to visit Andy and his family. We spent a few days with them, and as usual, when it was time to leave, I was anxious to get home to Bill, although this meant getting back to the daily grind of care giving. But the night before we planned to leave, I came down with a violent stomach flu. After throwing up half the night, I was hardly ready for the long journey the next day. Andy and his wife Kathleen encouraged us to stay until I felt well enough to travel, and although I hated to put them out, I knew I had no choice.
Kathleen left for Florida to look into buying a house since Andy recently accepted a position in Jupiter. This meant my brother was left to care for three children, two dogs, and two house guests, one of them sick. Despite having to work and take the kids to and from school and other obligations, he found time to do my laundry, fix me soup and toast, and make sure I was drinking plenty of liquids.
I worried about the kids getting sick, especially since the two older boys, Dylan and Tristan, liked to use the computer which was housed in the room where I slept. I didn’t mind them coming in to use it, especially when I was sick because the diversion took my mind off my stomach. When they left, I admonished them to wash their hands thoroughly with soap and water so they wouldn’t catch my germs. Either they listened to their aunt or were just lucky. In any case, they didn’t catch my bug.
It was a Monday morning when Dad and I postponed our travel plans because of my illness. As usual, Bill was staying at Sheridan Manor, and Bruce, the admissions coordinator who was so sympathetic and helpful after Grammy Hinkley died, was still employed. When I explained the situation, he said, “Don’t worry about a thing. We’ll take good care of him. You take care of yourself and stay in touch.” It was a relief knowing I didn’t have to worry about Bill, and although I longed to be sick in my own bed, I was thankful this didn’t happen when Bill and I were home together. After a night of throwing up, I barely had enough strength to get up and go to the bathroom and make the phone call to the nursing home.
For two days, I was sick in bed, barely able to keep anything down. As usual, I called Bill often. I told him I wished he were here to hold my head when I threw up and massage my shoulders and neck the way he did when I was sick before his strokes but assured him Andy was taking good care of me. On Wednesday, I felt a bit better and miraculously, I was able to eat and keep solid food down.
Dad and I left on Thursday to return home. I still felt dragged out and didn’t have much of an appetite, but Dad’s station wagon’s front passenger seat reclined so I was able to rest comfortably during the long drive home. We stopped for lunch in Alamosa, Colorado, and while I was in the restroom, I received a call from Bruce on my cell phone. I called the day before, and since Bruce wasn’t available, I talked to another employee in the admissions department who assured me the nursing home’s van could bring Bill home Saturday morning. “How are you doing?” Bruce asked when I answered my phone.
“I’m feeling better, thanks,” I said. “Did you get my message? Can the van bring Bill home Saturday?”
“That’s not a problem,” said Bruce, and I breathed a sigh of relief. Normally, the van driver didn’t work weekends, and if she couldn’t bring him on Saturday, he would have had to wait until Monday, and he wouldn’t have liked that. But as I replaced my phone in my pants pocket, I wondered if I should have left him there over the weekend to give me more time to recover.
Fortunately, I felt much better by Friday, and by the time we arrived home early that evening, although I was tired after a long day of traveling, I felt ready to resume my role as a family caregiver. Bill came home as planned on Saturday morning, and it was so good for both of us to be together after being apart for over a week. Although I needed to rest frequently for the next few days until I felt sufficiently recovered, everything went smoothly.
Bill and I discovered that the beauty shop at Sheridan Manor gave the cheapest haircut in town. It served residents and their families. Michelle, the beautician, was one of my classmates in high school, and while Bill was recuperating from his strokes, it was great to have her cut my hair and talk to her about old times. After Bill recovered from his strokes and came home, she still agreed to cut our hair. She occasionally came to the house so we wouldn’t have to take the minibus to Sheridan Manor and wait forever to be picked up after a ten-minute haircut.
One late December morning in 2009, I was sitting in the beauty shop while Michelle was cutting my hair. Bill sat in his wheelchair nearby, his hair already cut, waiting for me. Without warning, I broke into a cold sweat. My forehead felt clammy, and I had a sudden urge to lie down. “Are you okay?” Michelle asked.
“I don’t know.”
“I’ll get the nurse,” said Michelle, hurrying from the room.
“Are you sick?” Bill asked with a note of worry in his voice.
“I’ll be okay, sweetheart,” I said, trying to reassure him as well as myself. “I’ve had this before. If I can lie down for a while, I’ll be fine.”
Michelle returned with a nurse who gave me a glass of orange juice, thinking my blood sugar had dropped. “I’m not diabetic,” I told her. “but thanks for the OJ anyway.” I drained the glass in several gulps but still didn’t feel better. When the nurse took my blood pressure, it was 70/80.
“Who’s your doctor?” she asked.
I gave her my physician’s name, and after she got off the phone with her office, she said, “Dr. Bennett says you should either go to her office or to the emergency room right away.”
“What about Bill?” I asked. I didn’t have the strength to get out of that chair, take Bill home, get him situated, then go to the doctor’s office.
“He can stay here,” said the nurse.
“I don’t know if I can make it,” I said.
“I’ll call an ambulance,” said the nurse.
After making the call, she took Bill out to the lobby to get him out of the way. When the paramedics arrived a few minutes later, my blood pressure had shot up to 170/80, but everything else seemed normal except for the fact that I was still weak. When I lay on the stretcher, I felt much better and thought this ridiculous but knew the fluctuating blood pressure was nothing to brush aside.
Michelle called Dad who met me at the hospital where I was given medication to lower my blood pressure and blood was drawn. After a couple of hours, I was told my lab results were normal. The emergency room doctor said my fluctuating blood pressure could have been due to hormonal problems and referred me to an endocrinologist and sent me home. I decided to leave Bill at Sheridan Manor overnight. When I called him, he said, “I thought you had a stroke.” I could tell by the tone of his voice how worried he was and wished I’d thought to call him while I lay in the emergency room with nothing else to do.
“I thought I was going to have a stroke,” I said and told him what my blood pressure was when the paramedics picked me up. I then told him my plan and assured him Dad would be there shortly with clothes and other items he needed.
To make a long story short, when I saw the endocrinologist the next day, she said the problem wasn’t caused by my hormones and prescribed medication to lower my blood pressure. She also referred me to a cardiologist who did another test and said there was nothing wrong with my heart.
In 2011, I turned fifty. For years, Dr. Bennett told me that when I reached that age, I would need a colonoscopy. Because I knew someone who survived the procedure, this was something to which I wasn’t looking forward, especially since it meant worrying about how I would care for Bill in the aftermath. When I went to the doctor in November of 2011 for my annual check-up, I hoped she would forget my age, but how could she when my chart was in front of her, I realized, when she said, “Oh, guess what you get to do now.”
“Okay, I probably can’t do any heavy lifting or anything like that afterward, right?”
“You should be okay by the next day, and the procedure itself isn’t bad. It’s just the preparation that’s hard.”
After she promised me I’d be hearing from the surgery center where the procedure would be done, I went home and told Bill the news. I wasn’t surprised when he said, “Oh, they’re going to stick a tube up your butt.”
“Yeah, maybe you’d like to come with me and watch.”
The procedure was scheduled for two days after Christmas, and when I found out I wouldn’t be able to eat anything but broth the day before, I arranged for the nursing home’s van to pick Bill up first thing that morning. I didn’t want the added complication of preparing meals for him when I couldn’t eat. On that morning, as I scrambled to get him fed, packed, and ready to go, he said, “When I was in high school, I had to starve myself for wrestling, and I worked in the cafeteria.”
“That was your job. You had no choice. I do. Goodbye.”
Because my poetry collection, How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver, was just released by the publisher, I had plenty to keep my mind off the subject of food after Bill left. I spent the day stuffing envelopes with sell sheets and business cards to be mailed to bookstores and libraries. I also did laundry and took a nap. By five o’clock, my chores were done, and I was ready to start the grueling preparation process.
This involved drinking a gallon of nasty solution, one eight-ounce cup at a time every ten to fifteen minutes until it was gone. Actually, it wasn’t all that bad since the pharmacist added lemon flavoring. In fact, I wondered if I’d added too much water when I mixed it the day before and was afraid it might not work. A half hour later though, I didn’t have to worry about that.
I ended up camping out in the bathroom for the next four and a half hours. At eight o’clock, although I was still sitting on the toilet, letting it all out, I decided to call Bill. If I waited much longer, he would worry, I thought, as I pulled my cell phone out of my pants pocket. When I told him what was going on, he said, “You’ll probably be in the bathroom all night.”
“Aren’t you glad you’re not home? I don’t’ have any control over this. If I tried to get off this john and take care of you, I would have wet my own pants.” This scenario made him laugh.
Dr. Bennett was true to her word. The procedure the next day was nothing compared to what I went through the night before. After I was wheeled into the operating room, the gastroenterologist, who’s accent was foreign, introduced himself and said, “I can’t believe you’re fifty. I hope you’re as beautiful on the inside as you are on the outside.”
I could imagine why he said that. I wasn’t wearing my wedding ring because I’d been told not to bring anything valuable to the surgery center. It was probably a good thing Bill didn’t come to watch him stick a tube up my butt. If I was using my head, I would have said, “Thank you. I’m sure my husband feels the same way.” That was one of the last things I remember before I went to sleep.
When I woke up, Dad was there, and he drove me home where I spent the rest of the day eating, recuperating, and checking e-mail. I learned later that except for the fact that I had hemorrhoids, the results of my colonoscopy were normal. The next morning, my love and I were reunited once more, but as we snuggled in bed that night, we had no way of knowing that a year later, his side of the bed would be empty for good.
A Second Recovery
The next morning, Bill was moved to Sheridan Manor. We discovered that a couple of improvements had been made since Bill’s last stay. For starters, all the rooms had at least one phone. I learned much later that there was a phone jack by each bed so a second phone could easily be installed. The last time Bill was there, the phone was down the hall from his room, and although he could navigate his chair with his right arm and leg, it was difficult. Now, all his friends, relations, and I were close by as long as the phone was within reach.
The other improvement was the food. Not only did it taste better, but there were more choices. Since Bill was such a finicky eater, this was great news.
Since I had an eye appointment on the morning Bill was transferred from the hospital to the nursing home, I wasn’t with him when Sheridan Manor’s van picked him up. When I arrived at the facility, Bill was sitting in his room in his wheelchair with the television on. At the moment, he didn’t have a roommate so I turned off the set and we sat and held hands for a while. It was nearly lunchtime so I decided to eat with him.
In the dining room, Laura came and saw us. I’d called her the night before and left a message on her answering machine so she wouldn’t just read the news on that day’s briefing notes. Her voice was filled with concern when she said, “Bill, why did you want to come back here?”
“Because I want you,” he answered. “and I know people here.”
Before the strokes, Bill made friends easily as evidenced by the many people scattered across the country with whom he kept in contact. Now, he seemed more self-conscious about being in a new environment around people he didn’t know. He also could have felt a sense of loyalty to me by choosing Sheridan Manor since I worked there for fifteen years. In any case, I had to resign myself to the fact that this was where he wanted to be, even if the therapy took longer.
This time though, he was only there for a couple of months. A few days after he arrived, I found that his room had been rearranged to simulate our home environment. The bed was against one wall with the pole next to it. On the other side of the pole was a recliner. The bed and the recliner stood in a proximity similar to the pole as they were at home, although our recliner was in the living room with a separate pole next to it.
One Saturday morning, Bill was sitting in the recliner. A window was behind it, and neither of us realized that the chair was too close to the window. As Bill reclined, it hit the window which shattered with a loud crash. “Good God!” I said. “What kind of man did I marry? First, you’re hitting on other women. Now, you’re breaking windows. What’ll it be next?” We both laughed.
Grandma’s funeral was scheduled for the Saturday after Bill’s arrival at the nursing home. Danielle, the facility’s van driver, agreed to take Bill to the funeral. During the service, I sang “Amazing Grace,” accompanied by two musicians on violin and cello who often played at the nursing home. As I sang, I heard Bill burst into tears, and it was all I could do to keep from crying, not for the loss of Grandma, although I was mourning that, but because I couldn’t comfort Bill as I usually did during his outbursts of sadness. Somehow, I managed to get through the song.
At the end of the service, I sang “I’ll Fly Away,” a more lively number. My uncle from Colorado accompanied me on guitar. Afterward, everyone was invited to Grandma’s house for supper, but because there were steps leading into it, there was no way we could get Bill in the house so he went back to the nursing home with Danielle.
At grandma’s house, I enjoyed a variety of food and visited with family and friends. Just about everybody who’d been at our wedding was there. It was sad seeing all my uncles, aunts, cousins, and friends without Bill by my side. Although everyone was concerned about Bill and expressed wishes for his speedy recovery, the loss of Grandma was foremost on everybody’s minds.
When I walked into the house later that night, the phone was ringing. It was Bill. “How did it go?” he asked.
“It wasn’t the same without you.” We talked for a while, cried for Grandma some more, and hung up.
Laura again worked with us on transfers. At home, I was used to the carpet in our bedroom which gave my feet more leverage. Although I always wore shoes with good treads, I was afraid of slipping on the smooth, cement floor of Bill’s room at Sheridan Manor while transferring him. I was relieved when Laura said it was time to work with Bill at home.
However, the nursing home’s van developed a series of mechanical problems which made it impossible to bring Bill home for our therapy sessions. Although this was frustrating for Bill, his sense of humor came through one day after Danielle found a leak in the van’s gas tank. “She should have taken a match to it,” he said. “Burn, Baby! Burn!” Eventually, the van was fixed, and Laura was able to work with us at home.
After his second stroke, Bill had more bouts of crying than usual. His doctor prescribed an antidepressant which made Bill tired.
The first afternoon Laura brought him home for therapy, we worked on transfers for a while. Then Laura left us, promising that Danielle would pick Bill up later that afternoon. We stretched out on the bed, enjoying each other’s company. After a while, Bill had to go to the bathroom, and the nightmare began.
He was so weak I could barely transfer him from the bed to the wheelchair. Not again, I thought, as I wheeled him to the bathroom. It was all I could do to hold him against the wall while I got his pants down. I got the commode under him in the nick of time. As I stood outside the bathroom, waiting for him to do his business, I looked at my watch and wished it was already four o’clock, the time Danielle was scheduled to pick Bill up. Would it always be like this?
When he was finished, I grabbed his gait belt with one hand and positioned my other hand under his bottom, bent my knees, and said, “One, two, three, up.” Nothing happened.
“Come on, honey, we can do this,” I said, more to reassure myself. “One, two, three, up.” His butt moved an inch or two above the toilet before his legs buckled under him, and we were back where we started.
“I can’t do it,” he said. “You’d better call Laura.”
To my relief, I was able to reach Laura at the nursing home right away, and when she came, between the two of us, we were able to get Bill back into his wheelchair. “I need to lie down,” he said.
“That’s not a good idea,” said Laura. “Abbie may not be able to get you up again. You’ll just have to wait for Danielle to pick you up. Then you can rest when you get back to Sheridan Manor.”
For the rest of the afternoon, Bill sat at the kitchen table with his head on a pillow while I worked in my office. I found it hard to concentrate, thinking about what had just happened and wondering if it would always be like this. I was relieved when Danielle finally arrived. Needless to say, the antidepressant was discontinued, and Bill’s strength improved.
After a couple more weeks of sessions at home that went a lot more smoothly, Bill was finally discharged from the nursing home. The first night after he came home, I was a little worried, but to my relief, other than the usual potty breaks, we made it through without difficulty. We quickly settled beck into our routine.
The year before, after We Shall Overcome was rejected by numerous agents and publishers, Bill said, “Why don’t you just self-publish it? It’ll be my Christmas present to you.”
At the time, one of my writers’ organizations, a group of disabled authors from all over the country, was trying to find a publisher for an anthology of poems, stories, and essays by its members. To our surprise and delight, iUniverse offered to publish the book for free. This encouraged me, and I called the firm and talked to a helpful representative. Although she didn’t offer not to charge me for the publication of my book, she gave me some useful information about pricing, and I decided to go with this company.
This was in November, and there was no way I could even get it ready to be published by Christmas. A lot of revising needed to be done, and I spent the next few months doing just that. This sustained me through the stress of the holiday season and the turmoil of Bill’s second stroke in January. In a fictional world where nobody had a stroke, and no one had to assume the role of family caregiver, my heroine’s romantic difficulties seemed mundane, and I was only too glad to lose myself in her story.
By June of 2007, with the help of a local copy editor, the book was ready for the publisher. A month later, I was holding my first published book in my hands.
“Let me see it,” said Bill. He was sitting in his recliner when the box containing thirty free copies arrived. I took one out of the box and put it on his lap. Although I couldn’t see his face, I imagined the proud smile from ear to ear, as he fingered the front cover, then turned it over and felt the back. “I love you,” he said, and we embraced. “My wife, the published author.”
After Bill was discharged from the nursing home, he continued his outpatient therapy until one day in August when he came home after his last session and said, “They’ve given up on me. I don’t think I’ll ever walk again.”
As I held him while he cried, I realized that I would probably be a family caregiver for the rest of Bill’s life, but the prospect didn’t seem as daunting as it did the year before. Finally, I said, “I love you, sweetheart, and I’ll take care of you for as long as I can.”
“Good,” he said, planting a slobbery kiss on my cheek.
A Second Blow
January 20, 2006 started out like any other day. Since it was a Tuesday, Bill didn’t get his shower from the senior center’s home health care aide. As I got him dressed, he seemed more lethargic than usual, but I wasn’t too concerned since we managed the transfers and breakfast without a hitch. Bill had therapy that morning, and we planned to meet later at the senior center for lunch where we would attend our monthly visually impaired support group meeting. The previous summer, I was elected president of the Wyoming Council of the Blind, and that evening, our board of directors‘ meeting was scheduled via conference call.
The support group was one Bill started after he moved here. He had facilitated such a group in Colorado. After the stroke, it was up to me to publicize and facilitate the meetings and come up with guest speakers and other activities. This was a tough job because most of the participants had no idea what they wanted to do, and at times, I felt like I was pulling teeth. However, they were all supportive of my endeavors to care for Bill at home. At that day’s meeting, a volunteer interested in starting a reading group at the senior center agreed to talk to us about his project. As I got Bill’s coat on him in preparation for the Minibus, our local paratransit service, to pick him up for therapy, I hoped someone would come up with a topic idea for the next month’s meeting.
After Bill left for therapy, I did some work in my office before starting the trek to the senior center. Snow was on the ground, and the sidewalks were icy in places where they hadn’t been shoveled. At one intersection lay a huge snowdrift where I would have crossed, and since I couldn’t see a way around it, and I was wearing boots, I stepped through it, using my cane as a ski pole. Fortunately, anticipating this, I had left in plenty of time so I wouldn’t be late.
At the senior center, I found other support group participants at a table where we usually ate lunch together before the meeting. Bill soon arrived. “Angelique says he’s sleepy,” said the Minibus driver, as she parked him next to me at the table. Angelique was Bill’s occupational therapist.
His head hung down, almost to his chin, and I couldn’t see his face because the hood of his sweatshirt was pulled down over it. Usually, he greeted me with an embrace but not today. “Ken says I need to take a nap,” he said. Ken was his physical therapist. Apparently, he didn’t have enough energy for therapy.
When our food arrived, Bill showed little interest in eating, even when the volunteer who delivered our trays offered to cut his meat for him. I was concerned, but I told myself there was nothing to worry about. He was just tired. Maybe he hadn’t slept well the night before. I had promised to fix goulash for supper, and maybe he was holding out for that since it was one of his favorite meals.
Much to my consternation, Bill slept through the whole support group meeting. Afterward, the Minibus took us home, and when I wheeled him into the bedroom and transferred him to the bed, I discovered he had wet his pants. He was so weak I could hardly get him onto the bed. I took off his soiled pants, covered him with a blanket, and left the room.
Bill had recently started taking a different muscle relaxant, and I wondered if this was causing his weakness, although he’d been fine for the past few days. I called his doctor, and to my surprise and relief, I was able to get through to her immediately. She said she didn’t think the muscle relaxant was causing the problem but said to decrease the dosage and see what happened.
The minute I got off the phone in my office, I heard Bill’s clacker that he used to call me. When I hurried to his side, he said he had to pee but didn’t think he could sit up. I handed him the urinal, but before he could position it, his urine saturated the bedspread. In those days, I didn’t put a pad down to prevent such accidents since most of the time, he peed either while sitting on the side of the bed or on the commode in the bathroom. Because he was so weak, transferring him from the bed to the wheelchair in order to put on clean bedding was impossible. All I could do was cover him with a blanket.
Five minutes later, it happened again, but this time, he was able to get some in the urinal. “I think there’s blood in there,” he said. “Maybe I should go to Sheridan Manor.”
“We’ll see,” I said, stroking his hair. Actually, I thought that wasn’t such a bad idea. I didn’t know if I could take this much longer. I peered in the jug and didn’t see any blood, but to be on the safe side, I called John who had better eyes, and after taking a look, he said he didn’t see any blood, either.
As the afternoon wore on, I made frequent trips to the bedroom to give Bill the urinal. Sometimes, he got it in the jug, and at other times, his urine soaked the bedclothes. He laughed every time he called me. It was probably out of embarrassment or frustration, but that didn’t make it any less nerve-wracking. Finally, he pointed to his penis and said, “I hurt here.”
It was nearly five o’clock, and when I called the doctor’s office a second time, I expected to get the answering service or voicemail. To my relief, the nurse answered the phone. I knew her voice because I’d talked to her many times before about Bill and was almost in tears when I told her what was going on. “You’d better get him to the emergency room,” she said.
Relieved, I called 911, and Bill was soon on his way to the hospital. Grandma had been admitted the day before with pneumonia. I punched in Dad’s number and hoped he hadn’t left for the hospital to visit her. To my relief, he answered, and when I told him what happened, he agreed to drive me. It was then I remembered the Wyoming Council of the Blind’s board meeting. While waiting for Dad to pick me up, I called a friend who was also on the board and asked her to call everyone else on the board and say the meeting was canceled.
At the hospital, when the emergency room physician learned Bill’s symptoms, he thought it was a urinary tract infection. My heart sank. If that was the case, we would be sent home with antibiotics. I didn’t think I could care for Bill in his weak condition.
The doctor took a urine sample, and an hour later when it came up negative, he ordered a CAT scan. While Bill was having that done, Dad took me to the cafeteria for supper. So much for the goulash, I thought, as I bit into a tasteless sandwich. After supper, we returned to the emergency room and found Bill back in his cubicle. Since the results of the CAT scan weren’t yet available, Dad left me to visit Grandma, saying he would be back soon.
All this time, Bill was alert. For the next half hour, I held his hand and talked to him about this and that. I wished the doctor would hurry up and tell us what was wrong, and though I didn’t tell Bill, I also hoped that whatever it was, they would admit him, at least overnight. I needed a break.
When the doctor finally arrived, he said, “Well, it looks like you had another stroke, not as severe, but on the same side of the brain.” I was alarmed a moment later when the nurse took his blood pressure, and the top number was 180. The neurologist had told us it needed to stay below 150. No wonder Bill had suffered another stroke.
To my relief Bill was admitted to the intensive care unit, and Dad soon drove me home. Later, after calling Bill’s sisters in Colorado and California and giving them the bad news, it occurred to me to call Laura, the therapist who had stuck with us while Bill was at Sheridan Manor. We hadn’t talked to her since October when she told us we no longer needed her. I thought back to that last day. Bill cried when she left, and I wanted to cry, too, but instead, I held and comforted him until he quieted down. This was usually what I did when he burst into tears. He was sad to see her go, but for once, I was confident we’d be all right, and we were, until now.
“Oh Abbie, I’m just sick,” she said when I told her.
“I know,” I said. What I didn’t tell her was that I was relieved not to have to care for Bill for a while. I was exhausted, and it was nice knowing I wouldn’t have to put him to bed. Fortunately, the urine outbursts hadn’t spread to my side of the bed. I crawled under the sheets and went right to sleep. Needless to say, the first thing I did the next morning was throw the bedding in the wash and put clean sheets on the bed.
The next few days were a blur. Bill seemed to be getting better, but Grandma was getting worse, and Dad’s brothers from Colorado and California flew in just in case. Although I visited Grandma for a few minutes when I went to see Bill and noticed her deteriorating condition, I couldn’t be too concerned about her. Bill was constantly on my mind.
When the neurologist visited, he said perhaps one of Bill’s arthritis medications caused his blood pressure to skyrocket so he suggested decreasing the dosage and that we monitor his blood pressure regularly which we hadn’t been doing. He also said that since the second stroke hadn’t been as severe, the recovery process wouldn’t take as long. It was not yet known that this stroke probably set him back enough to the point he would never walk again.
The hospital staff was a lot better about helping Bill eat than at the facility in Billings, Montana, where he was airlifted after his first stroke. When I was there at mealtime, they offered to bring me a tray. His appetite was good, and he seemed to be gaining strength. We were given the impression Bill could participate in the hospital’s therapy program. On Thursday morning when he asked me to bring his talking books and portable cassette player with headphones, I started feeling optimistic.
On Thursday evening, Bill was moved out of the intensive care unit and into a room near Grandma which made visiting both of them easier. On Friday morning when I walked into Bill’s room, his doctor was there, and to my surprise, she said that he was ready to go home. My mouth dropped open, as I stared at Bill. “Yeah,” he said.
“The therapy department says he’s at full strength,” the doctor said.
“Okay,” I said, but I had a bad feeling about this.
I went to Grandma’s room and told everyone there the news. My uncles and Dad were more thrilled than I was, but Grandma was barely conscious, and I wasn’t sure she understood what was going on around her. With Bill to think of, I couldn’t be too concerned about her. Dad agreed to drive me home to get clothes and Bill’s wheelchair.
Once I returned to the hospital, I wondered how I would dress Bill. There was no pole for him to hold onto, and although I could get his pants on without it, I didn’t know how I would sit him up in order to put on his shirt and gait belt. Fortunately, an aid offered to dress him. As she struggled to pull on his pants, I said, “Honey, are you sure you can do this?”
“Yes I can,” he said.
In minutes, Bill was discharged. I called the Minibus to pick us up, and we were soon home.
“Put me in the recliner,” he said when we got in the door. That transfer went pretty smoothly, despite my trepidation, and I began to relax. He didn’t want lunch, but said, “I want goulash for supper.” That was also a good sign.
By evening, it was clear I’d used my heart instead of my head when I decided to bring him home. We managed to get through dinner, but he was pretty weak. Afterward, he said he had to go to the bathroom, and it was all I could do to transfer him from the wheelchair to the commode. He couldn’t go, and after an hour, he finally gave up. “Let’s go to bed,” he said.
When I pulled him to his feet and pushed him against the wall, he could barely stand. I found myself bracing him while I pulled up his pants. I aimed his butt at the wheelchair in the nick of time.
The transfer to the bed was just as harrowing, but miracle of miracles, Bill didn’t hit the floor. I took off his clothes, tucked him into bed, and kissed him goodnight, as if it were any other night. Later, I crawled in beside him, physically and emotionally exhausted.
I couldn’t sleep. Bill was restless. His legs kept twitching this way and that. Many times, just as I drifted off to sleep, I was jerked awake. Maybe the dosage on his muscle relaxant needed to be adjusted again. In the meantime, I crawled out of bed and went to the spare room to sleep, as I often did, leaving the clacker within easy reach in case he needed me in the night.
I slept fitfully, and at five in the morning, I woke to the clickety clack that told me I was needed. Bill was laughing when I reached his side. The bed was again saturated with urine. I’d put a pad down, but there seemed to have been a torrent, and I was afraid the mattress was ruined. I climbed in bed next to him and held him, burying my face in his hair that still smelled like the hospital and wished he were still there.
After another three hours of fitful sleep, I got up to take a shower. Bill woke up and said, “Maybe I should go to Sheridan Manor.”
“I’ll call Laura and see what she says.” I hated the idea of him going back there, and Laura agreed with me.
“It would ruin his self esteem,” she told me. “Call the doctor and tell her you want Bill to go back to the hospital’s rehabilitation program.”
When I called the doctor’s office, I got a voice mail and left a message for her to call me as soon as possible. To my amazement, she called me back in a matter of minutes. I explained the situation, and she assured me the arrangements would be made. Laura came and dressed Bill and transferred him to his wheelchair. I called the Minibus, and we were on our way.
At the hospital, they were expecting us, and we got Bill settled in another room. I called Dad and told him what happened and which room we were in. He said he was getting ready to go visit Grandma and that she wasn’t doing any better. “I’m sorry,” I said, but I couldn’t be too worried. Bill was in a different room, and I wasn’t sure I could find Grandma’s room, and I didn’t have the strength to try.
Bill’s room had a recliner, and once he was settled there, he was happy. We had lunch together, and just as I was about to call the Minibus to take me home, my aunt appeared in the doorway. “Grandma passed,” she said.
I was stunned. I knew she was dying, but because I was so preoccupied with Bill, the concept hadn’t sunk in until now. Numb with shock, I said goodbye to Bill, promising to return the next day, and went with my aunt to Grandma’s room.
Grandma lay peacefully in her bed, and everyone was there, including Dad. “I’m sorry,” I said. It was all I could say. Although my aunt was sobbing in her husband’s arms, I felt no tears. I watched, as one of my uncles leaned over the bed and kissed Grandma’s face, but I couldn’t bring myself to do that.
On Monday afternoon, Bill and I met with the hospital social worker. She thought Bill could try the therapy program, but she wasn’t sure how successful that would be. “They’re familiar with him at Sheridan Manor. He might be better off there.”
“That’s where I wanted to go all along,” Bill said.
Feeling sheepish, I asked the social worker to make the arrangements. After one quick phone call, it was done. The nursing home’s van would pick him up at the hospital in the morning.
After the social worker left Bill’s room, the nurse who took care of Grandma came by and told us how sorry she was about her passing. Bill burst into tears, and when I held him, my own cheeks were wet. Grandma was gone, and Bill was almost back to where he was a year ago. It was too much.
During the fall and early winter months, I was not only perfecting my skills as a caregiver, but I was also learning to cook. When I was single, I heated canned and frozen food in the microwave or oven. When Bill and I got married, he did the cooking. When he was discharged from the nursing home, I ordered meals on wheels from the senior center for him. Delivered once a day by friendly volunteers, they consisted of meat and potatoes, pasta, or Mexican food plus a vegetable, salad, roll, and dessert. Since Bill didn’t like salad or bread, I gave him the hot food while I ate the salad and bread and sometimes the dessert if he didn’t want it. That took care of one meal.
After a while, Bill grew tired of the meals from the senior center. He was used to home-cooked meals he prepared himself, but with the use of only one arm and leg, cooking was pretty much out of the question. I was already overwhelmed by the tasks associated with his personal care so Bill reluctantly agreed to eat the ready-made meals I put in front of him until one day when he said, “Let’s make meatloaf. It’s easy.”
With a sigh, I took down the casserole dish he once used, got a pound of hamburger out of the refrigerator, and set these items in front of him on the kitchen table. He then instructed me to tear the hamburger into small pieces and put them in the casserole dish. After that, he said to add two eggs. “Now squish it all around like this,” he said, using his right hand to knead the mixture as if it were dough.
I hated the texture of squishy things. As a kid, I balked at finger painting because I didn’t like the way the paint felt. In the fifth grade, I threw up all over a Halloween pumpkin when I was told to pull out its slimy innards. The meatloaf mixture didn’t smell like the inside of a pumpkin, and I knew it would eventually taste good, but at first, all I could do was stand there and watch Bill attempt to knead the mixture with one hand. Finally, I stuck my right hand in the bowl, and we kneaded the mixture together.
I added onion soup mix, cream of mushroom soup, ketchup, and oatmeal, and we mixed it all together in the same fashion. Bill then told me to put it in the oven for a couple of hours. As the tantalizing aroma filled the house, I felt a sense of accomplishment. After the oatmeal disaster, I didn’t know what to expect when we sat down to dinner that night. To my surprise, the meatloaf tasted pretty good, and for the first time in a long while, Bill said as much with a smile.
After that success, I decided to try my hand at oatmeal again. Although I eventually figured out how to get it to the right consistency, I couldn’t keep it from sticking to the pan. When Bill offered to clean it, I parked him next to the sink where the pan filled with soapy water waited. It was harder for him to clean it with one hand than it was for me with two hands, but it gave him a sense of accomplishment. Finally, a friend suggested cooking the oatmeal in the microwave, and I found, much to my relief, that it tasted just as good and didn’t stick.
Of course I still had cooking disasters. One time while I was making goulash, I discovered we were out of whole tomatoes so Bill suggested using sauce instead. The sauce turned out to be a paste, and the macaroni ended up in clumps. Another time, I made enchilada casserole, and while it was in the oven, the dish’s lid broke, leaving bits of glass embedded in the casserole. I threw the whole thing out and ordered a pizza.
Bill also loved scrambled eggs, but I could never get them to the right consistency. As with other food, Bill told me I wasn’t cooking the eggs long enough, and when I asked how much longer I needed to cook them, he said he didn’t know. Another friend suggested cooking them in the microwave, but they turned out runny so I gave up on scrambling eggs. However, Bill liked my meatloaf, goulash, tuna casserole, and macaroni and cheese. He told me how to fry pork chops on the stove with flour and olive oil and how to cook steaks and other meat on his electric grill. We were happy.
As the Thanksgiving holiday approached, and I learned my uncle, aunt, and cousins from Colorado were coming, I offered to host Thanksgiving dinner since it would be tough getting Bill to someone else’s house because the para-transit service wasn’t running that day. Unlike our anniversary/coming home party which was catered, this required more work. Dad supplied the turkey. My uncle and aunt here in Sheridan provided the potatoes and a vegetable. At Bill’s insistence, fool that I was, I offered to make two pies, two appetizers, and cranberry sauce. Everything was either canned or frozen so I just had to put it all in the oven and time everything just right so it was ready by the time guests arrived. Between that and taking Bill to and from the restroom and meeting his other needs, I was hopping.
There were twelve of us altogether. A card table was set up in the living room for the kids. Everyone was helpful and enjoyed the appetizers and pies. Afterward, my aunt from Colorado helped me put food away and dishes in the dishwasher. Although we had fun, it was a lot of work, and I was relieved when everyone left by seven that night, and Bill and I could enjoy a relaxing evening.
The next two weeks flew by, and all too soon, it was time for the Range Writers Christmas party which I’d agreed to host in September. This was a bit easier because it was potluck. I supplied a ham from Schwann already cooked and sliced, and everyone else brought a side dish or dessert. We used paper plates so clean-up was relatively easy, and again, guests were helpful.
One side effect of a stroke is that the person has little control over emotions. Often while listening to a talking book or e-mail message, Bill would start bawling because the material moved him. When I sat next to him, even in public, he frequently put his arm around me and told me he loved me. As we all sat in the living room, laughing and chatting, Bill extended his hand to the woman sitting on the couch next to his recliner, thinking it was me. “I love you, honey,” he said.
From across the room, I heard and saw everything. “Oh sweetie, that’s Mary,” I said.
Embarrassed, Mary rose and offered to trade places with me. As I sat down next to Bill and took his hand, I said, “I turn my back for ten seconds, and you’re hitting on another woman.” He laughed, and so did everyone else. After that, I always made sure I sat next to Bill at parties and that he always knew where I was.
Christmas was a relatively simple affair, compared to Thanksgiving. My uncle and aunt here in Sheridan offered to come over Christmas Day and bring chili. We had no out of town relatives visiting, just me, Bill, Dad, Grandma, and my uncle and aunt. For once, it was a nice, quiet holiday.
Bill and I rang in the new year by watching Casa Blanca. The past few months had been tough at times, but we had finally settled into a routine, and I could do most tasks associated with Bill’s care without thinking or worrying too much about them. Bill had recently started outpatient physical and occupational therapy, and I hoped he would develop the strength to do more on his own. However, as we snuggled together in bed after the movie, little did we know what lay ahead.
Bill loved to throw huge parties as evidenced by the gathering he hosted in Fowler to celebrate our engagement. We decided to have a get-together to celebrate Bill’s homecoming and our anniversary. It was scheduled for the Saturday after he came home.
Because this was a spur of the moment decision, there wasn’t time to invite family and friends from far and wide so we came up with a list of about ten people including Dad, Grandma, my aunt and uncle, John and Diane, and a few other friends. I spoke to the manager of a local market that delivered our groceries and also did catering. He quoted me a reasonable price for feeding ten people. The menu would consist of barbecued beef sandwiches, baked beans, and potato salad, and it would be served outdoors. It was a relief not to have to worry about food preparation, especially since I wasn’t much of a cook. All I had to do was take care of Bill and entertain our guests.
The big day got off to a rocky start, and I wondered why in the world we’d decided to have a party on this day of all days. First of all, we woke up to rain, and it didn’t look like it would let up anytime soon. “So much for eating outside,” I said to Bill, as I got ready to take a shower.
“Maybe it’ll clear up,” said Bill, ever the optimist. I didn’t think it would, and I didn’t relish the prospect of cramming ten people around our kitchen table.
If that wasn’t bad enough, I soon found a leak in the closet. John came when I called and found another leak in the kitchen. We put out buckets, and he promised to see about getting the roof fixed. A year later when I was finally able to apply for a mortgage to buy the house, extra funds for the replacement of the roof were included.
The transfers from the bed to the wheelchair were going pretty smoothly, but we were still having trouble dressing, and it would be another month before Laura finally helped us figure out the easiest way to put on his shirt. In the meantime, it took us half an hour to get him dressed and ready for the day.
In the kitchen, Bill insisted on having oatmeal for breakfast. This was one of many dishes I would learn to cook over the next few months. When I was single, I heated instant oatmeal in the microwave, but Bill would have none of that. It had to be cooked the old-fashioned way.
Following his instructions, I poured a generous amount of oatmeal into a saucepan and added enough milk to cover it. “How long do I cook it?” I asked, after I’d placed the pan on the stove and turned the heat to medium.
“I don’t know, till it’s done.”
When Bill did the cooking, he must have had a sixth sense that told him when food was cooked, I realized, as I stirred the pan’s contents. A few minutes later when it seemed to be done, he said, “Ooh, I gotta pee. Oh it’s too late I wet my pants.”
With a sigh of resignation, I turned off the stove and took Bill into the bathroom. It took another fifteen minutes to remove his soiled jeans and underwear and replace them with clean ones. After I settled him back at the kitchen table and returned to the stove, I discovered that the oatmeal had congealed to the consistency of hardened cement.
I added more milk, turned on the heat, stirred vigorously, and served it up a few minutes later. It didn’t taste very good, even with added sugar, but we were too hungry to care. We ate in silence. Finally, I said, “Honey, maybe you should have married a woman who can cook.”
“Come here, woman.” This was what he said when he wanted to hold me, and I wasn’t within reach. I got up and walked around to his right side, and after we embraced, he said, “You’ll learn, sweetie.”
After breakfast, Bill said he needed to pee again. “Why don’t you just give me the urinal, and I’ll unzip my fly and do it that way.” Unfortunately, he couldn’t do it that way without soiling his jeans so it was another trip to the bathroom for more clean clothes.
That afternoon, I planned to attend a local writers’ group meeting but was unsure about leaving Bill alone. Knowing I needed a break, he told me he would be fine for a couple of hours and not to worry. When I was ready to leave, he was sitting in his recliner, listening to a talking book. I gave him the urinal in case he had to go while I was gone. I figured this would be better for him than trying to hold it until I got back, even if it meant another wet pair of jeans.
At the meeting, we talked about our annual Christmas party which was usually held at the home of one of our members. I remembered how much Bill had enjoyed the party the previous year. Since it was usually held in the evening or on a Saturday afternoon when our paratransit service wasn’t running, there would be no way to get him to the party so I said, “Why don’t we have the party at our house this year?” After I explained the situation with Bill, everyone agreed.
As the meeting wore on, my thoughts drifted back to Bill. I knew there was nothing to worry me. He was comfortably ensconced in his recliner with a talking book to keep him occupied. The phone was right there so if he felt lonely, he could call one of his friends scattered across the country. Thank goodness we had unlimited long distance. In case of a real emergency, he wore a lifeline necklace with a button he could push to get help quickly. Still, I couldn’t help feeling guilty for leaving him alone and defenseless. I finally left the meeting early, saying I had to get ready for a party we were having, and this was partly true.
It was only about a ten or fifteen minute walk home from the senior center where the meeting was held. When I got home, I rushed in the door and was relieved to find Bill still sitting in his recliner and glad to see me. After we embraced, he asked, “How was the meeting?”
“Great,” I answered. “We’ll be having our Christmas party here.”
“Good,” he said.
“I knew that would make you happy,” I said, as I kissed him.
“Yeah, now I wet my pants again. I don’t think I can use the urinal like this.”
This time, I took him in the bedroom since it was closer to the recliner. I laid him on the bed and changed his pants a third time. Because I put on his last clean pair of pants, I tossed a load of his clothes in the washer and hoped he wouldn’t wet his pants again.
An hour later, guests started arriving, and I found myself relaxing and enjoying myself, despite the stress of being a caregiver. One friend brought us each an anniversary gift, a soft, red lap robe. “A perfect gift for a day like today,” I said, as I huddled under mine while John got the furnace going.
It had quit raining, but the yard was cold and wet so we would have to eat inside after all. Fortunately, only half the people we invited showed up so we didn’t have as many people to cram around the kitchen table. Bill had a folding card table we could have used if necessary.
When the market manager and his wife arrived to cater our meal, they said it would be no problem. They could barbecue the beef outside and serve everything indoors. An hour later, dinner was ready.
We all sat at the kitchen table, laughing, chatting, and enjoying our meal. Someone brought a cake, and we had that for dessert with some left over for Bill and me to devour in coming days. I invited the manager and his wife to eat with us, but they declined. After serving us all we could eat, they packed up the leftovers and put them in the refrigerator before leaving.
A couple of hours later, the party finally broke up, to my relief. I could tell Bill was getting tired, and so was I. It had been a long, harrowing day. After the last guest departed, we embraced, and I asked, “Did you have a good time?”
“Yeah,” he answered. “It was a good party. Thank you, honey.” With that, he kissed me and said, “Let’s go to bed.”
On Sunday, September 10th, 2006, Bill, Dad, and I celebrated our first wedding anniversary at the nursing home. We had a large piece of cake left over from the previous year which had been in the freezer until this occasion. I thawed it and took it to the nursing home, and the kitchen staff agreed to slice and serve it to us after we ate lunch. There was just enough for the three of us.
At one in the afternoon on September 11th, others were remembering loved ones who perished during the tragic events of 9/11, but this was far from my mind, as I paced the kitchen floor, casting anxious glances out the storm door, anticipating, yet dreading, the arrival of the nursing home’s van for the last time. Bill was coming home, not just for a few hours, but for good. Laura would not come with him this time. She would give us a day to settle in and come the next day to work with us. She had more confidence in me than I had in myself, but this was no comfort.
While I waited, I went over and over in my mind the details of the three major transfers I would perform: between the wheelchair and the recliner, between the wheelchair and the commode, and between the wheelchair and the bed. Laura would not be there to watch, applaud, and whistle when we performed the transfers correctly. I would be flying solo. Would I make it, or would I crash and burn?
My heart lurched, as I spotted the white van from the nursing home pulling into our driveway. It came to a stop inches from the ramp. With trepidation, I opened the door and waited while Suzanne, the driver, lowered Bill on the lift from the back of the vehicle and wheeled him up the ramp and into the house. “I’ll get his stuff,” she said after parking him at the kitchen table.
I said nothing when I approached him on his right side, but it was as if he could see me. His right arm encircled my waist, and all my doubts melted away. I put my left arm around his left shoulder, buried my face in his hair for a moment, then kissed him on the cheek and positioned my cheek in front of his lips so he could kiss me. We would perform this routine many times over the next six years.
“Here’s his luggage and his medication,” said Suzanne a minute later, depositing the items on the kitchen table.
“His medication?” I said, alarmed. I hadn’t given that any thought.
“Oh yes,” she answered. “The instructions are here in his discharge folder. If you want, I can read them to you.”
“That won’t be necessary. I can use my desktop magnifier. Thanks, anyway.”
After lunch, while Bill was at his computer, I unpacked his suitcase and then sat down at my desk to study his discharge information. Bill was prescribed a multitude of pills for pain and to control his blood pressure. A chart indicated when and how often he was to take which pill. Unfortunately, the information was handwritten which was more difficult to read, even with the magnifier. I wished I’d taken Suzanne up on her offer to read it to me, but since she had other nursing home residents to pick up and deliver, I would have hated to take up her time.
I figured out a schedule, mainly by asking Bill when the nurse gave him which medications. I then sorted the medications into three of the drawers below the sink in Bill’s bathroom so I would know which bottles contained which pills. When in doubt, I would always carry the bottle in question into my office and place it under my desktop magnifier to read the label.
The rest of the day went smoothly. When Bill got tired, I successfully transferred him to the recliner where he spent the rest of the afternoon listening to talking books and calling his friends and relatives to tell them he was home. He had to make one or two trips to the bathroom, and we performed these transfers without any problem. I worked in my office and did laundry and other chores.
At supper time, I put him back in his wheelchair, and we ate together at the kitchen table. It was as if our lives were back to normal, as we chatted and enjoyed chicken drumsticks and macaroni and cheese from Schwann. Afterward, it was back to the recliner for another couple of hours of reading and relaxation. I sat across from him in my easy chair with my own talking book but found it hard to concentrate because I was dreading the transfer from the wheelchair to the bed. Finally, Bill said, “Let’s do it.”
“Great idea,” I said, jumping to my feet.
Heart pounding, I wheeled him into the bedroom and positioned him between the bed and the pole. This transfer was more difficult because the bed was higher than the wheelchair. I locked the chair’s breaks, positioned myself between the chair and the bed with my legs apart, knees bent, grabbed his gait belt with one hand and his pant waist with the other, said, “One, two, three,” and we swung. As I feared, Bill’s rear end tottered on the edge of the bed before slipping to the floor.
Apparently, I hadn’t positioned the wheelchair close enough to the bed. I tried using my knee to lift him, but that didn’t work. All I could do was hold on to him, as he slid to the floor, lessening the impact. When he was down, I said, “I’m sorry, honey. Are you okay?”
“Yeah,” he answered, but you’d better get help.”
It was after ten at night. Although Laura had given me her home phone number and assured me I could call her anytime, she lived about twenty miles away in the small town of Big Horn. We would have had to wait a while for her to come, and I would have hated for her to make the long drive. As I stood pondering what to do, Bill said, “Why don’t you call John?”
Our friend and next door neighbor had offered to help whenever he could. I also hated to call him this late but figured it would be the lesser of two evils. I punched in his number and waited with baited breath while the phone rang several times. Were John and Diane so sound asleep that they couldn’t hear the phone? Were they even home? Just as I was wondering what to do next, John’s sleepy voice came on the line.
“I’m so sorry to wake you, but Bill’s on the floor, and I can’t lift him.”
“That’s all right. I’ll be right there.”
A few minutes later, John arrived, and between the two of us, we got Bill on the bed. After John left, I undressed him and tucked him in. I soon climbed in beside him, and again, his good arm went out and around me. As I would do many times for the next six years, I snuggled against him, burying my face in his hair, drinking in the scent of his shampoo, encircling his shoulder with my right arm. “This feels right,” he said. At the moment, it did feel right, but I was already worrying about the transfer from the bed to the wheelchair we would need to make the next morning.
Needless to say, I didn’t sleep well. I wasn’t used to sharing the bed with Bill since we had been apart for nine months. I didn’t have nearly as much room to stretch out, and I wondered how in the world I had managed before he had the stroke. I kept tossing and turning, trying to find a comfortable position, and eventually fell into a fitful slumber.
Every couple of hours, Bill needed to pee. He was eventually able to do it lying down without wetting himself, but at first, it was easier for him to sit up and do it. When he woke me, I got up, hoisted him to a sitting position on the side of the bed, and handed him the urinal. I then waited at a discrete distance while he did his business. Sometimes, it took him a while, and I ended up dosing in an armchair in the corner. The patter of urine flowing into the little jug was the sweetest sound I would hear over the next six years because it meant we could go back to bed or resume whatever else we were doing before he had to pee.
The next morning, the floor hit us again. Our original plan for dressing Bill was to put his underwear and pants on while he lay on the bed and then roll him over and pull everything up. This morning, however, Bill had another idea. “I bet I could stand up to the pole while you pull my pants up like I do in the bathroom.”
Eager to try anything that might have made the process easier, I put on his underwear and pants while he was still lying down and then hoisted him to the side of the bed, but as I put on the gait belt, I wondered if this was such a good idea. With the pants still down, I wouldn’t have the waist to grab for extra leverage. When I voiced my concern, Bill said, “Let’s try it, anyway. If worse comes to worse, I’ll just fall back on the bed.”
“Okay,” I said with a sigh. “but I have a bad feeling about this.”
I grasped the gait belt with both hands, positioned myself as before, said, “one, two, three,” and up we went. At first, he balanced against the pole, but to my horror, when I reached down to grab his underwear, his legs buckled, and he toppled sideways. I held on to him, as he slid in slow motion to the floor. “I’ll call John again,” I said, reaching for the phone. It was after eight so I figured he would be up.
“No, call Laura. We need more training.”
Bill was probably right. With a heavy heart, I punched in the nursing home’s number. When I explained the situation to Laura, she said, “Oh dear, I’ll be right there.”
“Maybe I need to go back to Sheridan Manor,” said Bill when I hung up.
I knelt beside him on the floor and took him in my arms. “Let’s see what Laura has to say,” I said. I secretly hoped this would be the case so I would get at least one more decent night’s sleep, but it wasn’t.
When Laura arrived, she explained the reason why standing up to the pole didn’t work this time. There wasn’t enough room between the bed and the pole for Bill to gain enough leverage. In the bathroom, there was more space between the pole and the toilet. We worked more on dressing and transferring, and she helped us figure out the best way to determine if the wheelchair was close enough to the bed for safe transfers. She even showed me how to move Bill over in the bed so I would have more room on my side, much to Bill’s chagrin since he loved being close to me. For the next six years, I would often accuse him of taking up his third in the middle of the bed, and he would laugh and accuse me of doing the same thing.
The rest of the day was uneventful. We ate, and while Bill either worked on his computer or listened to talking books in his recliner, I worked in my office and napped. Of course there were the occasional bathroom breaks which were accomplished without incident. When it was time for bed, I said to Bill, “Okay, we’re going to do it this time.”
“Yeah,” said Bill. Believe it or not, we did. The transfer went without a hitch.
When I later crawled in beside him, and he embraced me, I was relieved to know that in the morning, the aide from the senior center’s home health care program would be there to give Bill his shower and dress him, and that would mean less work for me. I snuggled against Bill and said, “I’ve got a man.”
“I’ve got a woman.”
By May of 2006, it was evident that Bill wouldn’t be walking anytime soon. His physical and speech therapists had given up, saying he had reached a plateau, and there was nothing more they could do. Only Laura, his occupational therapist, stuck with us. She told us we needed to think about modifying our home for a wheelchair.
Our landlord had not been the most agreeable person. The previous summer when we moved in, he complained when one of the men we hired to help us move tossed a cigarette butt on the ground. He didn’t like Bill’s picnic table sitting on the grass in the front yard so we had to move it to the garage since there was no other place to keep it. I was reluctant to approach him about modifying our home. Bill said, “I know you’re scared of him, but you have to do this, honey. Just tell him we’ll pay for the modifications. There shouldn’t be a problem.”
Since Bill had been a landlord, I figured he was right, although I didn’t know how we would pay for such modifications. I still didn’t want to approach the landlord in person so I wrote him a letter, explaining the situation, and dropped it off at his office with the next rent check. One day as I was walking home after doing errands downtown, I passed his house, and he was standing inside his yard. “Hi Abbie, can you come here? I need to talk to you for a minute.”
He sounded friendly, but As I approached the gate, my heart was pounding, and I clutched the handle of my cane as if it were a lifeline. “I’m sorry to hear about your husband’ stroke,” he said.
“Thanks,” I said, breathing a little easier.
“I understand you need some modifications to the house for a wheelchair.”
“Yes, I don’t think Bill will be walking anytime soon.”
“I’m sorry to hear that. Well, you could put in a ramp at the front door as long as it looks good.”
This was preposterous. Here I was with a husband confined to a wheelchair, and all he could think about was whether the ramp would look good. I thanked him and continued on my way.
The main problem in the house was the bathroom. It consisted of two rooms: one containing a sink and a tall claw-foot tub with shower, and a smaller room containing a toilet. Someone told me once that in the good old days, this was called a water closet. Before his stroke, Bill had trouble getting in and out of the tub, and I had to use a foot stool. Now, there was no way Bill would be able to get in and out of the tub, and the water closet was too small for a wheelchair. We would have to remove the wall between the tub and the toilet, making the two rooms into one big room, and take out the tub and put in a roll-in shower. Miraculously, another solution came to me out of the blue one night while talking on the phone with friends.
I had known John and Dianne for years. I first met Dianne when I was in high school, and we were in a puppet show of Winnie the Pooh stories my mother produced for a disability advocacy group. We performed for small children in nursery schools and other venues. Dianne was about my age, and as a result of cerebral palsy, she had difficulty walking and speaking.
She lived in Buffalo, about thirty miles away, but after the puppet show, we kept in touch. She often invited me to sing at her church, and I sang at her mother’s funeral.. When she married John who was about twenty years older, I performed at their wedding
John and Dianne bought a house that used to be a church and made it into a home. They often invited me to their house and other events. When Bill came on the scene, we both got together with them. Dianne worked with Easter Seals and other organizations for the disabled, and I was often asked to play my guitar and sing for their clients.
That night on the phone when I expressed my concerns about the house, John said, “You know, we own the house next to us. It used to be the parsonage. It has two bathrooms, one with a walk-in shower and one with a tub, and no water closet. It would be easier to modify for Bill. We’d like to sell it. Would you be interested?
Would I, but how in the world would I pay for it? Ass if reading my mind, John said, “You could get a loan through the Department of Agriculture’s rural development program.” As he explained how this would work, it felt like a weight was being lifted from my shoulders. “Why don’t you come and take a look at the house?” he finally said.
I did that the following Sunday after visiting Bill at the nursing home and immediately fell in love with it. Besides the two bathrooms, it had a large kitchen and living room and three bedrooms. The master bedroom was huge compared to the room Bill and I used to share, and the other bedrooms were a little smaller. There was also a small nook off the kitchen John said used to be the pastor’s study. Since Bill liked to be in the middle of things, I figured we could set up his computer and stereo there and my home office in one of the two smaller bedrooms. The other would be a spare room guests could use. The house also had a good-sized back yard with a cement patio, lawn, and tree house, a perfect place for Bill’s picnic table and easily accessible to a wheelchair through a gate opening off the concrete driveway. A family was currently living in the house, but John promised they would be out by the end of July, and we could move in then.
I asked Laura to come and take a look, and she, Bill, and I rode over one afternoon in Sheridan Manor’s wheelchair accessible van. Although the doorways were narrow, Laura agreed the house would do. The bathroom with the walk-in shower, next to the master bedroom, was too small for the wheelchair, it being a little bigger than the water closet. It was determined that this would be my bathroom. Laura said, “Since Bill can’t get in here, this is where you can go to be alone.”
Bill said, “I’ll park myself outside this bathroom door and wait for you.” We all laughed.
The other bathroom with the tub and shower, next to the kitchen, would be Bill’s. Laura pointed out that a shower bench could be placed in the tub, and Bill could be transferred to it from a commode on wheels used to take him from the bedroom to the bathroom. Since the doorway was next to the kitchen sink, some of the counter, cabinets, and shelves would have to be removed in order to widen it to accommodate the wheelchair. I wasn’t happy about the loss of space but knew it was necessary.
I told John I would buy the house if I could get a loan. To my shock however, when I filed an application with the Department of Rural Development, they discovered a multitude of debts on Bill’s credit cards, and I was told they couldn’t give me a loan. Devastated, I told my troubles to John, and like a true friend, he agreed to rent me the house until I could buy it, although he was anxious to sell it because it was becoming a financial burden. To make a long story short, years later, Bill filed for bankruptcy. After that was settled, I was able to get a loan from a local bank which not only paid for the purchase of the house but also for a new roof. After my grandmother in Denver passed away, I received a sizeable inheritance and used most of it to pay off the mortgage.
One of the residents at the nursing home Bill befriended was a woman who’s husband was a carpenter. When Bill told Jim, a jovial man, about our situation, he agreed to take a look. We again drove over in the facility’s van with Laura, and she showed Jim what needed to be done. Jim said he could widen Bill’s bathroom doorway and install vertical poles for Bill to hold onto in the bathroom and bedroom while I transferred him. Since Laura suggested we buy Bill a recliner, Jim agreed to install another pole in the living room next to it. The kitchen entrance, the best way for Bill to get into the house, had a big step so Jim said he could install a ramp. He quoted a reasonable price and said he could start in August after I moved in. He hoped to have the project completed by September so we planned for Bill to come home at that time.
In the meantime, Laura helped me file an application with a state agency we hoped could fund part if not all of the project. As the summer months progressed however, we never heard back from them. In August after I moved into the house, Jim finally told me if he couldn’t start the project right away, he couldn’t guarantee he could finish it by Bill’s homecoming date, and he had other projects waiting. I gave him the go ahead, and since the agency never responded, I paid him with funds from my savings account.
Meanwhile, I was learning to be a caregiver. Laura started by having the nursing home’s maintenance department install a vertical pole in Bill’s room next to his bed. Since this was apparently a new concept, she first showed the nurses’ aides how to transfer him, using the pole, and then showed me. Bill was stoical through it all, enduring the multitude of transfers from the bed to the wheelchair and vise versa without complaint. Despite the exhausting work, he always had a hug and a smile for me at the end of the day.
Then came the task of learning how to dress him. This would probably have come easier to me if I had children, but Laura was patient and optimistic. She never said, “I don’t think you can do this because you can’t see.” When one technique didn’t work, we tried another and another until we finally found a way to get him dressed that was easy for both of us.
Laura advised me on toileting. She suggested using wet wipes to clean him up after a bowel movement. “You’ll probably have to use about ten,” she said.
One day after Laura left, Bill said he had to go to the bathroom. Exhausted, I flopped onto his bed next to where he was sitting in his wheelchair. Reaching for the call light, I said, “Okay, I’ll get an aide to help you.”
“”No, you need to practice.”
At home, I would be able to wheel him into the bathroom and transfer him from the wheelchair to the commode. At Sheridan Manor, the commode was taller than the one we would eventually purchase, making it difficult to transfer him to it from the wheelchair. I would have to wheel the commode out into the room, help Bill stand, and while he held onto the pole, pull his pants down, whisk the wheelchair out from under him and replace it with the commode as quickly as I could, and hope his legs didn’t give out while I was doing this. When I pointed this out to him though, he said in one of his rare moments of anger, “They take forever to come when I call, God damn it. I can’t wait.”
I wanted to tell him I couldn’t do it because I was too tired, God damn it, but I realized that once Bill came home, calling for help wouldn’t be an option unless he was on the floor. With a sigh, I got up and went to the bathroom to retrieve the commode.
I would probably regret this, I thought, as I wheeled the commode out and placed it near the wheelchair. To my relief, the transfer from the wheelchair to the commode went smoothly. I wheeled him into the bathroom, positioned the commode over the toilet, stepped out, closed the door, and flopped back onto the bed to wait.
I hoped he would only pee, but after he flushed the toilet, and the stench of fecal matter assailed my nostrils as I went into the bathroom again, that hope was dashed. With another sigh, I reached into the box of wet wipes on top of the toilet tank and set to work. To my annoyance, as I removed feces from his bung and tossed the soiled wipes into a nearby wastebasket, he started laughing. I wanted to strangle him but remembered something I’d learned years ago during my music therapy internship while doing research for a case study on a resident who suffered a stroke. Victims of strokes often can’t control their emotions and sometimes exhibit inappropriate ones. Bill was embarrassed because he couldn’t wipe himself. If the tables were turned, I would have been, too.
“I’m sorry, honey. I know this is embarrassing. It isn’t fun for me, either.”
“No, it’s funny,” he said, still laughing.
I couldn’t believe it. Was he really that sadistic? No, it was the stroke. I finished wiping him and got him back into his wheelchair without incident. He rewarded me with a smile and a hug.
In July, I reluctantly took a well-deserved vacation. Dad and I made another trip to New Mexico to visit Andy and his family. My aunt and uncle who lived in Sheridan took care of Grandma while we were gone. We stopped in Fowler again where we spent the night with Shirley and saw a couple of Bill’s friends and his mother in the nursing home. It was the last time I saw Bill’s mother. She passed away in August. Although I was worried about Bill and the myriad of details associated with moving, I tried to have a good time. Shirley reassured me I was doing the right thing by taking some time away and pointed out that once Bill came home, it would be harder to take a vacation. I knew she was right.
When I returned from New Mexico, I again had two weeks to pack before moving. This time, I not only had my stuff to pack but Bill’s as well. Fortunately, I was only spending two hours a day at the nursing home instead of eight, and that was a big help. I also had some help from Dad and other friends, especially on the day I moved.
As Bill did when we moved into the house, I hired a couple of guys from the homeless shelter to help us move. The new house was only a block away from the old, and with the help of Dad’s trusty pick-up, we were able to get everything moved in one day. It took weeks to unpack, though.
During the months Bill spent at the nursing home, I kept in touch by phone and e-mail with Bill’s family and friends scattered across the country. Since I still didn’t have a cell phone, I got a calling card, and Bill and I often used it to call his family and friends from the nursing home. His mother often called me at home to chat, and this was comforting for both of us.
In August, Bill’s mother was hospitalized due to complications from surgery to replace a pump that delivered pain medication to her back, and we didn’t think she would survive. Late one Sunday afternoon, I received a call from one of my former co-workers in the activities department at Sheridan Manor. Bill had started sobbing during a church service and said his mother died. I was afraid Shirley or someone else had called him at the nursing home and given him the bad news. Fortunately, friends were visiting me at the time, and I was able to get a ride to the nursing home right away. I found Bill in the activity office. My co-worker, who was getting ready to leave for the day, said we could stay there as long as we needed. Since it was close to suppertime, she promised to have trays brought in for us. After holding Bill and letting him cry on my shoulder, I finally deduced that he started crying in church because they were singing a hymn that was one of his mother’s favorites. No one had called him to tell him his mother passed away. This was a relief, but I knew eventually, it would come.
It did two days later. I received the phone call early Tuesday morning, but when I told Bill, to my relief, he seemed to be at peace with it. He didn’t cry, and life went on.
I would have liked to attend the service in Fowler but didn’t want to leave Bill. The service was recorded, and a couple of months later, Shirley sent us the CD. This provided the closure Bill needed.
Two weeks after I moved into the new house, Jim arrived with his partner to start the renovations. It only took them two weeks to complete the project. Meanwhile, Laura helped me order the equipment we needed, most of which was paid for by Medicare. Besides the commode, we got a wheelchair, shower bench, recliner, and a gait belt that I would fasten around his waist when I dressed him to make transferring him easier. We arranged for home health care aides to give Bill a shower three days a week since that was one thing Laura thought would be tricky for me because of my low vision. Although Bill and I would have loved taking showers together, I agreed with her.
After the renovations were complete, Laura brought Bill to the house regularly so we could work with the new equipment. She sometimes left us alone at the house for a couple of hours. Although I thought I could handle most of the transfers and toileting, I was still uncomfortable with dressing him. Laura assured me that after he was discharged from Sheridan Manor, she would continue to come to our home and work with us for at least another month. This made me feel better.
Having read horror stories about visually impaired parents who’s children were taken from them at birth because hospital staff and children’s services workers thought they couldn’t care for them, I couldn’t help wondering if this would happen to us. To my relief, when Bill and I met with Sheridan Manor’s social worker, our case worker from the senior center, Bunni, and a social worker from the Department of Family Services, nobody questioned my ability to care for him. The fact that Laura and other nursing home staff knew and admired me when I worked there may have born some weight. In any case, the transition from Sheridan Manor to home went smoothly, and all too soon, the big day came. Despite Laura’s reassurances that I would do fine, I wondered again if I was getting in over my head.