One Family's Story
Wayne and Judy Paul's life together was suddenly and dramatically changed when Wayne sustained a severe head injury in an automobile accident. While still in a state of disbelief, Judy was forced to learn about head injury and participate in the selection of a post-acute rehabilitation provider. Judy has selflessly decided to share with you the process she went through and the insights she gained in the hope that it will somehow make the path a little easier for those who may follow . . .
"My husband was injured! . . .
My husband was ready to be moved from an acute hospital to a rehabilitation facility. He was in a wheelchair and could only walk with the assistance of a therapist and a walker. He had little cognition, lacked total bladder control, ate only pureed food and experienced a great deal of aspirating and choking. Wayne's moods included moments of agitation, frustration, mild aggression, lethargy and fear. In order to take care of his personal hygiene, he needed constant physical and verbal cuing. He was on medication which did not help his moods or his cognition.
It was my job to locate a rehabilitation facility while Wayne was still hospitalized. All facilities have varying eligibility requirements, and I was frustrated by this fact when dealing with facilities relying solely on the telephone evaluation of patients. For example, one facility I visited went over everything with me. I talked to the doctors and they stated that Wayne was accepted. Then I got a call later saying he would not be accepted. It was then that I learned that the person I spoke with did not have the authority to determine Wayne's eligibility. This was contrary to what I was told initially. It could have been worse . . . I could have had Wayne transferred and then been rejected at the door!
From that point on, I only interviewed facilities that would come to the hospital, meet with Wayne and me, do an evaluation, then give us a recommendation and decision. Whenever possible, I visited each facility I was considering. I asked to see everything -- living quarters, therapy rooms and staff and patient interaction when possible. I asked about what types of programming were available, how community services were utilized, and how individual programs were structured. There were facilities I could not visit, so I would request written information and pictures.
I was not impressed by heavy sales pitches, pie-in-the-sky promises, or being treated like royalty. An expensive lunch was not what I was looking for. I needed the best place where my husband would receive the best care; thus, I asked how long each facility had been in business and how it got started. I believe a facility should exist because it understands the real need for good rehabilitation. In my case, one of the founders of Wayne's program had a brother who had suffered a stroke, so he had experienced the need for a quality head-injury program. I think this influences a staff to care more about their patients. A facility which opens strictly because its founders recognize the shortage of facilities and think it is a big money business compels me to dig a little deeper to insure their commitment to patients.
I also needed to know how different facilities handled behavior. Did the facility have defined programs and guidelines? I was not willing to accept a facility that insisted on drug therapy to modify behavior. Valid cases where drugs cannot be avoided do exist, but these should be the exception, not the norm. I wanted an individual program designed just for Wayne, one that was structured but flexible. I wanted to know the staff member who would be responsible for setting up the program, following-up the program, and answering any of my questions. I wanted to know how Wayne's progress would be charted and how often the facility would contact the insurance company and me about his progress. I wanted personal contact, not just written reports. I wanted to know what experience the facility had in working with insurance carriers. Was that facility respected by the carriers? It means a great deal to have your carrier respect and trust the facility. Your loved one will receive better care because the recommendations made by the facility will usually be accepted by your carrier.
I did not want a facility that housed patients in the same building where therapy was done. I did not want a facility that had different therapies going on in the same room. I pictured myself trying to concentrate on a task in a room where other activities were taking place. I concluded that I could do it, but I'm not head-injured. One place I looked at was a ranch house converted to a rehabilitation facility. The living room contained a sofa, television, tables, etc. In one corner was speech therapy while another area of the room was used for educational therapy. The kitchen could be seen from the living room and was also used for therapy. The bedrooms were living quarters for some patients while other patients stayed in apartments elsewhere. That arrangement did not separate the environments of "home" and "therapy". Wayne was quite distractable as are most head-injured individuals, and I realized this situation created another barrier that Wayne would have to break through. I believed that a combined environment could interfere with his progress and possibly trigger some agitation.
Wayne's facility was unique in that it had private rooms for certain therapies. The staff took the time to explain why this is important. They felt that beginning therapy would be difficult at best, and did not want to create another source of problems. They further explained their purpose in eventually exposing Wayne to distraction to teach him how to stay on task. However, this would come later in the rehabilitation process under controlled conditions.
I was also interested in what a facility would do for my husband and me once he was discharged from the program. What follow-up program would they provide? Once you get back home things change. It doesn't matter if the changes are bad or good because all changes bring a need for adjustment. If the facility says goodbye as you leave and never checks with you at home, you will have problems.
I believe a facility should be able to provide for almost any need. The staff should be able to set up work programs in the community and locate resources in your home area. These services require a great deal of work and an expert staff. The length of time between discharge and the introduction of a work program will vary from months to years. Home follow-up provides you with the assurance that help is as near as the telephone, and this relieves a great deal of stress.
Centre for Neuro Skills® (CNS) came to the hospital and spent 2-3 days evaluating Wayne. I was impressed with the entire process. They were very clear about what they were doing and always encouraged me to participate in everything, including all meetings with doctors and staff. I was fully informed as to the significance of each test administered to Wayne.
After the evaluation, CNS provided me with projections for his recovery and an estimate on the length of treatment. I was assured that he would be accepted. They wasted little time in arranging for our transfer to CNS. All necessary arrangements were made and we moved.
Once at CNS, the staff gave Wayne a full two-week diagnostic evaluation which involved each therapeutic discipline. This in-depth process provided the key elements necessary for setting up a personal program tailored to meet Wayne's needs.
I wanted Wayne to experience as close to a "normal home life" as possible. I knew that could not be done if I was not allowed to live with him, or if I had to stay in separate quarters while visiting. I decided I needed a facility that could accommodate overnight stays so I could be with Wayne whenever possible.
Most facilities do not provide housing for family members and often discouraged use of facilities that did. They felt the family presence was of little or no value, and could hinder the patient's progress. Many of these facilities never addressed the needs of the spouse, and often skirted around my questions in this area. I knew I would have needs and was very concerned because I also knew I wasn't able to fully identify all of them. I wanted help in adjusting to living with a head-injured spouse. I needed time to learn and adapt to the many changed roles I'd be taking on. I needed guidance and assistance in dealing with emotional issues surrounding living with Wayne.
Our life before the injury was wonderful. We were able to express our needs and wants to each other, and more importantly, we were able to meet each other's wants and needs. This was no longer the case. We could no longer communicate like before and we didn't know what to expect.
CNS provided transportation for Wayne to attend his own church, get hair cuts where he wanted and shop for groceries. Most facilities offered group transportation, or were very evasive about providing any type of transportation. I felt group transportation was fine for some things, but I wanted Wayne to have the opportunity to make personal choices. I felt that going to places of his choosing would help in building his self-esteem, confidence and independence. Most areas of rehabilitation are very structured, leaving little opportunity for independent choices. I wanted Wayne to have every chance to make these choices. As Wayne progressed, he began taking public transportation which gave him a feeling of independence and some control over his life.
Wayne moved from sharing an apartment to living alone as he improved. Our need for privacy was respected whenever I visited overnight. Living with Wayne during his rehabilitation at CNS was both rewarding and heartbreaking. I could better understand how hard it was for Wayne to relearn and struggle through tasks that were simple prior to his injury. I could also celebrate his progress and achievements. It was heartbreaking to see him struggle to do a simple task, pleading for help, yet knowing he had to keep trying on his own. This is where I was so grateful to the CNS Rehabilitation Assistants also known as RA's. I could leave the room and regroup my feelings - sometimes I'd just cry. I believe my daily involvement with Wayne's rehab was very helpful in his progress and in my ability to love him as a head-injured husband. I can't imagine not having been there, and one day getting a call saying Wayne is ready for discharge. I would have been overwhelmed, not having any idea what to expect, how to act or react to him. My time there gave me courage, understanding and confidence that going home would be just fine.
So, what benefit did I receive for the time, energy and effort I invested in locating a facility that provided all the things I have mentioned? Wayne has made a greater recovery than ever thought possible by anyone. Our needs are still being met, changes are occurring, new programs are being implemented. We are establishing a life-long support system. We have formed friendships at CNS we believe will endure the test of time. Our life has its ups and downs, but with the continuing help of CNS, Wayne and I are creating a functional home environment, and a rewarding husband-and-wife relationship."
- Judy Paul