The ASHA Leader - February 2015 - (Page 50)

holding on...and letting go F or 35 years, my father, Zeke, and his younger brother ran their own business in New York City. Fierce independence, like the city itself, ran in his blood. So, after my mother's death, I know it was tough for him to leave the city and move close to me in Philadelphia. But at age 75, he soon learned his way around his new city and was once again the way he liked to be: in charge of his own life. I was with him, but with miles between us. Then, one day near his 82nd birthday, he got bad news. The severe pain that sent him to the emergency room in the middle of the night turned out to be advanced colon cancer. And so, this story is one daughter's journey with him as his caregiver during a year of decline. Going into it, I had assumed that my educational and clinical background in speechlanguage pathology had prepared me well. But my graduate education had not included any instruction on relating to people who are terminally ill. And my clinical experience had not provided opportunities to explore my own perceptions of end-of-life care. Because we, as rehab professionals, do not always receive much formal training in treating patients with Going into it, I advanced illness, we may naturally had assumed assume that the traditional rehabilitation model, which that my emphasizes treatment for recovery educational and independent living, is the only available. My experience with and clinical onefather helped me recognize that my background rehabilitation in palliative care is a in speech- paradox. I have reframed my practice language with these patients in terms of the pathology had palliative care models described therapist Richard prepared me by physical are often used in Briggs that well. interprofessional practice by physical 50 February 2015 | THe aSHa Le aDer and occupational therapists (bit.ly/pt-for-als): Depending on the patient's needs, we choose to provide either traditional rehabilitation, a lighter version ("rehab light") or rehabilitation in reverse-services tailored to promote adjustment to deteriorating functioning. This reconceptualization allowed my dad to remain where he wanted to be most of all-in his own home-and dramatically changed the way I view and help my own patients with advanced illness and the caregivers who love them. I will share what I've learned. Rehab light After emergency life-saving surgery and a twoweek hospital stay, Zeke reluctantly agreed and was admitted to rehabilitation at a skilled nursing facility. I visited at night and listened to him describe the exercises provided by his occupational and physical therapists-familiar descriptions of traditional rehab aimed at advancing the patient from illness to wellness. Zeke worked hard to build his strength enough to return home-and did four weeks later, with a walker. Though his cancer was too advanced to be cured, Zeke underwent oral chemotherapy for a chance to prolong his life. I hired a parttime home health aide to help him daily, and he continued his rehabilitation with home-based physical and occupational therapy, though only once a week or every other week. This was the "rehab light" model of palliative care-a less intensive approach to treatment, with the emphasis on quality of life. After a month, the chemo's side effects were too much, and Zeke discontinued it. On the advice of his home care nurse, we opted for homebased hospice. As he signed the papers, he eyed me quizzically and asked, "Are you ready for this?" Zeke was extending me a rare invite into his world. I thought about my years of graduate education and clinical practice in home care and acute care, and I judged I was well-prepared for my new role as caregiver for my once-independent http://www.bit.ly/pt-for-als

The ASHA Leader - February 2015

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