Admission to inpatient rehabilitation involves meeting strict criteria. A person must have certain diagnoses (such as stroke, spinal injury, traumatic brain injury, Multiple Sclerosis, etc.) which have a good prognosis for functional improvement. A person must medically stable and able able to tolerate at least 3 hours of therapy every day from an interdisciplinary team (PT, OT, Speech). Dementia is a common health problem among the aging, but generally is not a qualifying diagnosis for acute inpatient rehabilitation.... unless it is a co-morbid condition occuring along with one of the aforementioned primary diagnoses. Mae is an example of one such patient.
Last fall, Mae was admitted to inpatient rehabilitation following a laminectomy and posterior spinal fusion for lumbar stenosis. She had a 5 year history of progressive dementia and lived with her husband (of 55 years) in a nearby town. Over the course of the past year, Mae had experienced progressive weakness in her legs that eventually required her husband to perform dependent lifts in order to transfer her into bed, onto the toilet, or into the car. She was eventually referred to a neurosurgeon and then became a patient of mine following her surgery.
Mae sticks out in my mind as an especially challenging patient to work with. As a consequence of her dementia, she had frequent "ups" and "downs" in her ability to communicate with me, her ability/desire to participate in therapy, and her tolerance of therapy. Every day, I would walk into her room not knowing if it was a "good day" (where she would be happily smiling in bed eating her breakfast), or a "bad day" (in which she was crying, unsure of where she was, confused of what day it was, and demanding to see her husband or her dog).
My rehab goals for Mae's program significantly differed from other patients on the service. The goal for most patients is to improve their ability to complete daily functional and mobility-related tasks to the level of independence. For Mae, this was not a realistic goal given her cognitive status. My hope was to:
1) Improve her overall function (including lower extremity strength and overall aerobic endurance) for the "good days"
2) Complete family training for her husband and primary caregiver, Jim, who was 80 years old (dependent lifts were not a safe strategy for either of them!!) to determine safe strategies to assist her
3) Prescribe equipment including bath chair, transfer board, and permanent wheelchair to assist her husband during the "bad days"
4) Develop a home exercise program to help maintain her current level of function and prevent secondary impairments (muscle tightness, deconditioning, etc.)
On a day-to-day basis, I asked myself many questions regarding her therapy. She was very different from my other patients. Did I expect Mae to be independent with her exercises like my other patients? Did I expect Mae to remember new techniques for transfers without cueing? Did I expect Mae to independently arrive to the gym at a given time for therapy? Did I expect Mae to demonstrate the ability to walk around and transfer herself no matter what time of day by discharge? The answer to all of these questions was NO.
I had to develop many compensatory techniques to help Mae benefit from rehab. Every day, we worked on therapy in the same environment to establish familiarity. The room was quiet and distraction-free in order to help her to focus. Giving Mae choices in what she wanted to work on was important in engaging her in therapy. Sessions focused on "automatic" tasks to improve her leg strength and overall endurance, such as walking and standing transfers, instead of teaching leg lifts or other exercises requiring multi-step commands. Standardized tests for balance or endurance were not appropriate because the instructions were too complex. One hour sessions were too long for Mae to concentrate and participate in, as she fatigued very quickly and became irritable. Instead, we adjusted her schedule to multiple 30 minute sessions over the course of the rehab day. We continued to work on standing transfers instead of introducing new equipment (such as a transfer board) which was unfamiliar and confusing to her. Repetition was very important to the structure of her therapy-- we had to give her many many opportunities to practice. We provided her with simple, explicit, written instructions (and pictures of her performing them!) for the exercises of her home program.
Finally, it was crucial to address how her husband, Jim, was managing with the changes in his wife and the demands of her care. He was an older man who was deeply concerned about her well-being. More than anything, he wanted to care for the woman he had shared the last 5 decades of his life with, and their bond was inspiring. But, he had to consider if the level of care she required was too much for him. Would it better for her to be in a nursing home? Despite many days of discussing the options with him, performing training, and even doing a home evaluation and home training, Jim decided that he wanted to take Mae home. "We always said that we would love each other and take care of each other for our entire lives," he said.