My husband’s aorta dissected in 2013 and he was rapidly bleeding to death. The health care team gave him transfusion after transfusion, to no avail. Surgeons operated on him three times in an attempt to stop the bleeding. During the third operation he had a spinal stroke that paralyzed his legs. At this moment a new and challenging chapter of our lives began and I became his family caregiver.
The health care team kept my husband anesthetized for three weeks to promote healing. It took another week for him to fully regain consciousness. A few weeks later the feeling in his right leg returned, but his left leg remained stiff and unresponsive. “I don’t think your husband will ever walk again,” a nurse manager conceded. I had to make plans and act on them quickly.
Since my husband couldn’t return to our three-level home, I put it up for sale and built a wheelchair friendly townhome. While I was doing these things I was frightened to the marrow of my bones. My husband’s medical bills were about two million dollars. I hoped we would sell our former home for enough money to pay for the townhome. (We didn’t.) After being hospitalized for eight months my husband was dismissed to my care, and he was determined to help himself.
Each day, he exercised with stretchy plastic bands and a peddler, a device that can be used with the hands or feet. More than a year later my husband received an appointment for physical therapy. With the help of dedicated therapists, he learned to stand, stand and pivot, and get out of bed with the aid of a walker. Most hopeful, he could walk 40-60 steps with a walker and a therapist “nudging” his left leg.
My husband seemed to be a miracle in the making.
Medicare regulations require a patient evaluation every 10 visits and his evaluations showed steady progress. Then, one day, he failed to make progress. More days without progress followed, a time therapists refer to as “plateauing.” The therapists began to talk about my husband joining a health club, coming to the rehabilitation floor, and using equipment on his own. Yesterday the physical therapist gave us the gentle let down.
He would have two more days of therapy this week. Next week he would be evaluated again. If he failed to show progress his physical therapy would cease. Although I knew this time was coming, the therapist’s comments hit me with the force of a boulder. I grieved for my husband and grieved for myself. What would our lives be like? What could we do? These questions kept waking me up in the night.
At four in the morning I got up and made some important decisions. Decision one: We would use the paid caregiver’s time differently. Every morning, holidays included, a paid caregiver comes for two hours and helps get my husband up. The caregiver also does light housework. From now on, there would be no housework. Instead, the paid caregiver would help me help my husband. Together, we would help him use the walker, one of us at his side, the other nudging his left leg. Decision two: We would not give up and continue to hope. My husband is now able to stand for seven minutes on his own and his upper body is stronger. Maybe, just maybe, he could achieve his goal of using a walker. It was worth a try.
All the while, we would be together, loving each other more each day.
I read an editorial page column years ago. It was written by an MD. He accurately observed: “We are not prolonging life; we are prolonging the death process.”
Wow, when I saw the title, I had flashbacks. My son was in a rehab hospital in 2012 and discharged when it was decided he hit a “plateau”. Strange since a few weeks later my husband and I advanced him from a wheelchair to a walker, then after a couple months of us taking him to an inside walking track, he was walking with almost no assistance. We were fortunate that we were able to devote so much time to him. I feel sorry for others who are not given the same opportunity. “Plateau” is just a way for insurance to get around paying for more treatment. My son only had Medicaid.