Agnes and Bill's Story

Agnes met Bill in 1980. She was divorced with four children and he had three. Bill worked for the city government in a Spartanburg, South Carolina and Agnes was in the Insurance business and a homemaker. In 1984, Bill got a new job in city management in Greensboro, North Carolina, and Agnes continued part-time in insurance. Life was good in the new city until 1992, when Agnes was diagnosed with Parkinson disease. It started with her left hand and her right leg shaking. Her doctors at Emory University in Atlanta, Georgia prescribed a regiment of rehab and medication. Things were under control and Agnes had resumed her life/routine, but suddenly things took a turn. In October of 1996, Agnes was diagnosed with ALS – Lou Gehrig’s disease. The doctors at Emory said that they had seen similar cases before. Her capabilities decreased quite rapidly and it was apparent that help was needed.

Bill was a government employee in North Carolina and had good health benefits, but no specific long-term care policy. His plan allowed for an in-home helper who came every day to get Agnes up and be a personal assistant and to assist Agnes in performing her activities of daily living – grooming, toileting, dressing, eating, walking and whatever else was needed. However, the insurance coverage only allowed 7 hours a day of assistance, and the helper would normally leave at 3:00 PM. Every day before the attendant left she would put Agnes in a large “wing back” chair, turn on the television and leave. Agnes could not stand without assistance let alone walk and she had no use of her arms what so ever. Her arms were like two appendages that just hung there. Agnes couldn’t go to the bathroom, get something to eat, answer the door or get out in case of an emergency or even change the channel on the TV if something she didn’t want to watch came on.  Bill didn’t get home from work till 6:30 PM and sometimes as late as 8:00 PM. This left Agnes alone for 3 to 5 hours and for someone with ALS, this was life-threatening.

The solution could have been the CLASS Act, or a program like it. This would have provided a benefit that Agnes could have paid into when she worked that would have offered some form of a cash benefit to allow a functionally disabled person to stay in the home. In Agnes’s case, just $50 could have been used to hire another attendant to come and be with her in the afternoon when she was alone. This would have provided the help she needed, but also the security in the event of an accident, but most of all peace of mind for Bill and the rest of the family.

Unfortunately a program like this was not around in 1998 and so eventually Agnes’s daughter had to stop college to move home and be a caregiver along with the attendant who came in. Eventually Agnes received Hospice services until she passed away in July 1998 due to the complications of the disease.