Learning from a Teenager
You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~Kahlil Gibran, The Prophet
Instead of hanging out at the mall with her friends, fifteen-year-old Carly spent most of her spare time taking care of her dad.
Andy had been a strong,healthy,physically fit man who excelled at sports and loved outdoor activities. But one day he noticed his right hand was numb, and he dropped his cup of coffee. Over the next few months, several similar incidents happened to the point he could no longer ignore the strange and alarming symptoms. After months ofexhaustive tests, a neurologist confirmed the terrible news that thirty-eight-year-old Andy had ALS, or Lou Gehrig’s disease. When he learned this incurable illness would result in progressive neurological deterioration of his body. Andy tried to conceal it from his family as long as possible. He was separated from his wife, and his threeteenage children lived with him. Despite his efforts, it soon became impossible to hide his illness, and the effect on his youngest child,Carly, was the most profound.
He soon lost the ability to use a knife and fork. Carly would quietly lean over to cut his meat. She couldn't wait to come home from school to see him. At first, her friend were intrigued by the close relationship she enjoyed with her father. They patiently waited while she attended to him before she went with them to the mall or the movies.Little by little, though,Carly started declining invitations from friends. Doing homework, helping out with the household chores, and helping her dad button his shirts and tie his shoes took most of her spare time.
Andy was acutely aware that Carly needed to live a normal teenager's life and not be his private duty nurse. Her older brother and sister were more typical teenagers, and although they loved their father, they were less involved in his care. An old childhood friend of Andy's worked for the local Visiting Nurses Association as a home health aide. She made the referral to initiate home-care services. I became Andy's visiting nurse. Over the next several months, I arranged for a physical therapist, an occupational therapist, a speech therapist and daily home health-aide services. In spite of our best efforts, including a course of experimental drug therapy, Andy’s disease progressed. He became weaker and weaker each passing month.
Home-care services only provided help six or eight hours per day and none at night, so Carly continued to devote all of her spare time to her father’s care. As professionalcaregivers, we were expected to teach the family members all aspects of care, but Carly had already learned how to dress her father, assist him in the bathroom, prepare his easy-to-chew foods and feed him. We frequently deferred to her to show us an easier method of dressing him.
When I advised that it was time to get a hospital bed for ease of transfers in and out, Andy insisted on having a double bed so that his children could sleep next to him after they had helped turn and reposition him every two hours at night. The professional caregivers conferenced and decided it was inappropriate to have his teenage children sleeping in his bed with him. Carly taught us by her admirable behavior that closeness and warmth with her dad were more important than our stuffy rules. My persistent recommendations to hire private caregivers for nighttime duty also fell on Carly’s deaf ears. She was only a freshman in high school. Lack of sleep and leisure time was taking its toll on her physically and academically, but her perceptive guidance counselor informed all of her teachers of the extraordinary conditions Carly faced at home.
All of us professionals worked diligently to keep Andy at maximum safety and function. However, nobody was perceptive to Andy's subtle changes and deteriorationsas Carly. When his speech became slurred, Carly understood him best. When he started to choke and have difficulty swallowing, a feeding tube was surgically implanted in his stomach. We taught Carly to prepare and install the feedings into the tube. She taught us how to do it in the way he tolerated it best. When his lungs became weak andcongested, we taught her to use the complicated portable suction machine. She taught us that she could learn anything needed to care for her father.
I had a lump in my throat watching this fragile,98-pound girl hoist her 155-pound father out of his wheelchair and into bed day after day after day. I wondered where she got her strength. “From my dad”she answered.
Finally, the day came when it was impossible for Andy to remain at home. Carly had spent most of the night suctioning the mucus and giving him his oxygen treatments. He could no longer breathe unassisted, so he was hospitalized and agreed to go on aventilator for a short time, just until his family could accept the fact that he was dying. Carly had to be forced to go school, but as soon as her last class ended, she hustled to her father’s hospital bedside to sit with him, along with her brother and sister.
Andy went into a coma on the last day of his life, and his devoted daughter told him one last time how much she loved him. But she did not need to say the words; her love and dedication had been proven countless times. As experienced professionals, we had taught her the techniques needed to care for her dad, yet a fifteen-year-old taught all of us a poignant lesson in love, caregiving and devotion.
1. hang out 英 [hæŋ aut] 美 [hæŋ aʊt]
2. spare time英 [spɛə taim] 美 [spɛr taɪm]
3. physically英 [ˈfɪzɪkli] 美 [ˈfɪzɪkəlɪ]
Andy had been a strong,healthy,physically fit man who excelled at sports and loved outdoor activities.
3. numb英 [nʌm] 美 [nʌm]
4. symptoms英 ['sɪmptəmz] 美 ['sɪmptəmz]
n.征兆;症状( symptom的名词复数 )
5. exhaustive英 [ɪgˈzɔ:stɪv] 美 [ɪɡˈzɔstɪv]
6. neurologist英 [njʊəˈrɒlədʒɪst] 美 [nʊˈrɑ:lədʒɪst]
7. ALS [医]amyotrophic lateral sclerosis 肌萎缩性脊髓侧索硬化症
8. incurable英 [ɪnˈkjʊərəbl] 美 [ɪnˈkjʊrəbl]
9. deterioration英 [dɪˌtɪərɪə'reɪʃn] 美 [dɪˌtɪrɪəˈreʃən]
10. conceal英 [kənˈsi:l] 美 [kənˈsil]
11. teenage 英 [ˈti:neɪdʒ] 美 [ˈtinˌedʒ]
12. profound英 [prəˈfaʊnd] 美 [prəˈfaʊnd, pro-]
12. intrigued英 [ɪnˈtri:gd] 美 [ɪnˈtriɡd]
13. attend to sb照顾
14. little by little adv.渐渐
15. decline 英 [dɪˈklaɪn]
16. acutely英 [əˈkju:tli] 美 [əˈkjuːtli]
17. Visiting Nurses Association
18. aid 英 [eɪd] 美 [ed]
19. referral英 [rɪˈfɜ:rəl] 美 [rɪ'fɜ:rəl]
make the referral
19. initiate英 [ɪˈnɪʃieɪt] 美 [ɪˈnɪʃieɪt]
20. visiting nurse
21. physical therapist英 [ˈθerəpɪst] 美 [ˈθɛrəpɪst]
22. occupational therapist 职业治疗师
23. speech therapist 言语矫治专家
24. therapy 英 [ˈθerəpi] 美 [ˈθɛrəpi]
25. devote英 [dɪˈvəʊt] 美 [dɪˈvoʊt]
26. caregiver英 [ˈkeəgɪvə(r)] 美 [ˈkergɪvə(r)]
27. chew英 [tʃu:] 美 [tʃu:]
27. defer to遵从;尊重，顺从
28. reposition英 [ˌri:pə'zɪʃən] 美 [ˌripəˈzɪʃən, ˌrɛpə-]
29. stuffy英 [ˈstʌfi] 美 [ˈstʌfi]
30. take a toll on影响到
31. perceptive英 [pəˈseptɪv] 美 [pərˈseptɪv]
32. guidance counselor辅导员
33. diligently英 ['dɪlɪdʒəntlɪ] 美 [ˈdɪlədʒəntlɪ]
34. extraordinary conditions特殊情况
35. slur英 [slɜ:(r)] 美 [slɚ] 含混不清
36. choke英 [tʃəʊk] 美 [tʃoʊk]
37. instill英 [ɪn'stɪl] 美 [ɪnˈstɪl]
38. surgically英 ['sɜ:dʒɪklɪ] 美 ['sɜ:dʒɪklɪ]
39. congested 英 [kənˈdʒestɪd]
(medical 医) (of a part of the body 身体部位) 充血的；黏液阻塞的
40. suction machine吸痰器
41. hoist英 [hɔɪst] 美 [hɔɪst] vt.升起，提起
42. mucus英 [ˈmju:kəs] 美 [ˈmjukəs]
43. ventilator英 [ˈventɪleɪtə(r)] 美 [ˈvɛntl:ˌetɚ] 通气机；呼吸器
44. hustle英 [ˈhʌsl] 美 [ˈhʌsəl]
45. coma英 [ˈkəʊmə] 美 [ˈkoʊmə]
46. poignant英 [ˈpɔɪnjənt] 美 [ˈpɔɪnjənt]