Caregiver Profiles - The ALS Association

Ann Lew

Greater Los Angeles Chapter

Ann Lew of Los Angeles and husband Scott

Ann has provided care for her husband, Scott, since June 2003. Scott was thirty-three years-old at the time of his diagnosis. Ann reported, “We had only been married three years to the week. Scott was a joy to be with and he made me a better person. I probably wouldn't be married to anyone if I hadn't met him.”

About her relationship with Scott, Ann commented, “I doubt many couples get to know their spouse on the intimate level that we have come to know each other. Even though he is debilitated and I am exhausted mentally and physically, we still do whatever we can to support one another with kind words and affection. I respect my husband deeply and enjoy spending time with him. He is still so funny and intelligent. I am thankful for that because it has really helped us to endure the challenges that ALS presents.”

Scott’s parents assist Ann in caring for Scott, providing both emotional and financial support. Obtaining day to day assistance, however, is more difficult. “They live in Chicago; we live in Los Angeles. My brother and his family live nearby, but they are very busy with young children. They are not able to help us on a daily basis.”

“My biggest challenge is to pay for the caregivers who help me with my husband. He is ventilator dependent, feeding-tube dependent and quadriplegic. He requires suctioning frequently. He cannot be left alone because he could choke or aspirate on his saliva. Most nights, I get up three to four times to suction him and move his limbs or body. During the day, I am pretty tired. He needs more care than one person can give. Like many families, we have spent our savings on caregivers. He is still progressing in the illness and we will need more help in the future.”

When Ann does find rare time for self-care, she enjoys reading the newspaper on the internet or taking a ceramics class.

Ann’s best advice for other caregivers: “After Scott and I had been living with ALS for about a year, one of his neurologists told me to go back to work. I didn't want to because I didn't know how much time we would have together. Since then, more perspective has shown me that caregiving for Scott can't be the only important thing in my life. A caregiver has a responsibility to look out for themselves too. That means getting a job, hobby or activity - something completely apart from ALS. I see now that Scott's neurologist was trying to help me survive ALS too.”