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.