Katherine is a creative and practical woman. Despite her dream of a roving retirement life, five years ago she moved with her husband to their own home in Washington to care for her parents. Her previously independent mother has significant dementia, and her father had begun to lose his sight.

“Although my mother Eleanor was a very outgoing, dependable young woman, she also wanted the life of a romance novel, and my Dad is just not romance-novel material. She’s often difficult, and he needs his space and time alone. As he says: ‘Perhaps God gave me blindness so I can stay home and take care of her.’ He cannot deal with it alone,” Katherine said.

“Often, it takes a lot of tricks to get Mom going.  She often has a ‘No, do it myself’ attitude, especially when she hasn’t taken her antidepressant,” Katherine said. “From my support group and the annual Alzheimer’s NC Inc. training, I have learned a lot of ways to deal with Mom ‘s resistance to help.”

Katherine has accepted her responsibility with business-like determination. Every afternoon, seven days a week, she is with her mother: feeding the dog, doing what is needed around their house and giving her father alone time by taking her mother out to lunch and a drive. Cooking and eating don’t interest Eleanor and she is thin.

“When she can’t remember that you put sugar on strawberries, she just grabs something else like vanilla wafers and, hallelujah, cookie pudding,” Katherine said. “She cannot put meals together now.”

The routine of going to lunch helps. Changes in routine require slow readjustments.

“The red tape you have to struggle through for help is incredible! I have been on the list for state respite services for several years, and just lost a part-time paid helper,” Katherine said. “The introduction of another caregiver will simply start Mom’s adjustment process from square one again, if and when she might come.  We wait.”

Katherine’s strength serves her well until either family members or others make hurtful comments, especially in front of her mother, such as “Why don’t you have her in a nursing home?”

Probably the most painful part of this life devoted to daily caregiving is the strain it has put on her marriage.

She and her husband have lost their dream of retirement or much control over their daily lives as she juggles being a good wife and a good daughter. Indeed, who comes first? Currently, neither Katherine nor her husband have much of a choice. However, Katherine has learned that she must take care of herself.

“Keeping a sense of humor and looking for the sparks of ‘old Mom’ help, too,” Katherine said.

Peggy Cohn is a retired geriatric-care manager with a background in public-health nursing and degrees in family studies and aging. The stories are drawn from local caregivers of folks with Alzheimer’s disease. All caregivers and their families are anonymous to protect their privacy and dignity.