Chapter Twenty: Home
It was a very hot late June day when I gathered our belongings, packed our car, and headed home. After saying our good byes at breakfast, the therapists and Steve’s nurse of the day lined up at the front door of the hospital and each one hugged him and told him good bye one last time. They presented him with a quilt that was handmade by a group of women who love to donate their services to the rehab center. Then, they helped me get him into the car and we said good bye to the last hospital on our long and very incredible journey.
I realized while driving the hour and twenty minute drive to Sedona that I was very, very tired. I had packed up our things in the 112 degree heat that morning. We had a lot to pack. Steve had been requesting things from home that he had missed, so when family came to visit they brought whatever he had wanted. I had also been buying much needed clothes for him during his rehab stay. He was finally out of a hospital gown and dressed in comfortable clothes each morning for his workouts, so he needed several changes of clean clothes always ready for the day. With all of these new items added to what I already had for me, and now the addition of a wheelchair, our car was packed to the roof.
Steve was in a hurry to get home and out of the car. It wasn’t that comfortable for him and he needed to lay down. I drove in the melting heat with a tired husband, my back aching from all the heavy lifting I had done packing the car, ready to finally relax when I arrived at our cool and peaceful home.
The kids were there when we arrived. Our son had moved in to help me with Steve, so his things were still all over the place. Our daughter, son in law, and two grandsons were also there to greet us. They had brought over all the medical equipment we were going to need for Steve’s temporarily disabled life. All of these things had been piled in our living room waiting for me to find a place for them. The exhaustion I was already feeling, the extreme heat, a tired husband who was now completely dependent on me, a living room and kitchen full of newly added things, and children excited to see us, totally overwhelmed me.
I am a person who does not like clutter. Clutter creates overwhelm for me. I want things neat and put away. This was not what I found. I sat on my couch nearly in tears trying to decide how I was going to cope with my new circumstances. My daughter saw my overwhelm and told me they would be back later when I had had a chance to rest some. I thanked her for her consideration, got Steve situated in his lounge chair, and then laid down on my bed and cried.
The enormity of my new job as Steve’s full time care-giver began to sink in. There were no more nurses, doctors, or therapists to assist him. I was it. He was fully dependent on me for all of his needs now and I was still so very tired from everything I had been through with him. The last two months had caught up with me. I needed some sleep, some very deep sleep that wouldn’t be interrupted. Unfortunately, deep, peaceful sleep wasn’t going to happen anytime soon.
Steve was still on high doses of prednisone, so he wasn’t able to sleep for long periods of time. Not being able to move his body was also very uncomfortable for him, so he needed to be moved often during the night. He would wake me up to have me move him or get him a snack. He was always hungry because of the prednisone. We bought a hospital table to put by the bed and I began to put snacks for him on the table so he could eat at night without waking me up, but he still needed to be moved, so I was awake often anyway.
Our mornings began early with getting Steve out of bed so he could sit in his lounge chair. He was more comfortable moving from bed to chair instead of staying in bed all the time. Even though I had been trained to transport him from bed to wheelchair to lounge chair, it was still difficult for me. Steve still had a lot of water weight and weighed more than he usually did. Under these conditions, he was difficult to lift, even with his help. My son would help me as often as he could, but he had to work and wasn’t always around. Most of the lifting fell on me. Steve felt awful that he was such a burden to me.
One night, as usual, he woke me up to move his legs for him. It was about the third time I had been up and I desperately needed sleep. I woke up from a very deep sleep, startled and struggling to clear my head. He had been lying there a while, not wanting to bother me again, but really needing his aching legs moved to a new position. I was irritable as I tried to find the right position for him. He apologized for being a burden and I told him he wasn’t a burden that I was just extremely tired and really needed some sleep. We both began to cry. He hated having to ask for help. He knew I needed sleep and he felt so bad that he was the cause of my pain. I rubbed his feet while we talked about our situation. I kept assuring him he wasn’t a burden. He kept apologizing. There was no resolution, only some much needed emotional release. We dried our tears, I gave him a kiss, and fell back into bed for another hour of sleep before he needed me again. This is the way life would be for a while. We both had to accept it.
Our friend, MIchael, the same sweet friend who baked homemade cookies for us when we were in Flagstaff, came over one day not long after our middle of the night cry, wanting to help. He had done home health care for years and he could help me get Steve into his bath chair in the bathtub. He could also come over at bedtime, if our son wasn’t available, to help me put Steve in bed for the night. It was a huge relief to have Michael’s help. I still had the brunt of the middle of the night and daytime transporting him from wheelchair to bed or chair, but having Michael’s help with the bath and bedtime relieved a lot of pressure and back pain for me.
Getting in and out of the car was also a major production for Steve. It took two strong men to help him slide across the slide board and onto the car seat. Because of this we didn’t go many places, except to a doctor’s visit or physical therapy session. The one exception to this was one beautiful summer afternoon when we were craving some time in the forest. We planned a picnic with our children. We needed the strength of our son in law and son to get Steve in and out of the car, and everyone needed some time outside having fun, so it was a win/win plan.
We gathered up our food and headed up to the forest near Flagstaff. It was a perfect day to be out in the fresh air and doing what we had always loved to do. Life felt normal again. Steve was put in his wheelchair and wheeled to our picnic spot where he sat in his outdoor lounge chair. The ponderosa pines cradled us as wispy clouds floated by and rays of sun peaked through occasional branches to touch our untanned faces. It was pure peace. We stayed several hours before loading up to go home. We had desperately needed this time in nature. Nature has always been a connecting place for us, and once again it delivered. We came home happy and a little more healed.
Steve’s new physical therapist scheduled him for two days a week. Therapy began the week after we got home. Our friend, Nancy Jo, also a therapist, contacted us and asked if she could also do therapy with Steve as a gift to us. She also scheduled two days with Steve. Now he was working out four days a week. His strength improved rapidly with his new therapy schedule. The more he worked out, the more he could do for himself. Within a month, he was lifting himself onto the slide board while I stood by to safely guide him. Mastering the slide board by himself gave us both more freedom. He could now get himself in and out of the passenger’s seat of our car once I got his wheelchair into the right position. After he was in the car, I would fold the wheelchair and put it in the back of the car. It was a lot of heavy lifting for me, but it was so worth the new found freedom that I was willing to do it as often as possible. Strength brought freedom, so this encouraged Steve to workout even harder with the hope that his legs would also gain the same strength as his arms.
Things were progressing. Steve was gradually getting stronger. He was seeing Dr. Epstein, the rheumatologist that had seen him in the hospital, twice a month and his lab work was looking great. There was still a lot of strength to regain, but his health issues were no longer a threat. We both started relaxing more and having more fun. It was summertime, our favorite time of year and we vowed to make the most of it, wheelchair and all. Life was beginning to feel happy again, and I was finally getting more sleep.