alzheimer’s: a day in the life of a daughter

by Amy L. Hay

For me, it has become a way of life. The morning starts early – 4:30 am with some solace, the day’s scheduling changes, and household chores. I get mom up at 7:30 – she is in what is categorized as “Late Stage.” I wake her with kisses and assurance that I love her. Does she know who I am?? She never calls me by name anymore, but in my heart, I know she knows me as someone who loves and cares for her. A shower every day due to the incontinence. Mom can still stand, but she needs constant coaching and spotting. I think she has forgotten how to balance, just as a toddler needs to steady herself, so is the way with my mother.

A powdered instant breakfast mixed with a dietary supplement drink gives her most of the protein and nutrients she needs for the day. I do give her a daily vitamin, something that she did for herself for as long as I can remember. Her daily food intake has diminished and she eats very little at a time, but we feed her often. Mom’s caregiver comes in to relieve me and I’m off to work. I help families and seniors deal with aging issues – most often, dementia is involved.

Personally and professionally I rely on the Alzheimer’s Association for guidance. When mom was first diagnosed, I turned to this organization that provides a plethora of information and resources- people, books, videos, and support groups. There are support groups for just about everyone involved with dementia. Early Stage Support Groups help people with Alzheimer’s and their care partners cope with the diagnosis, learn about the disease, and plan for the future. Some support groups are just for the individuals with dementia and some are just for caregivers. There are also professional networks for people involved at different levels. I attend all different kinds…as a caregiver, a facilitator, and sometimes as the owner of a business that cares for seniors.

Back home in time for dinner – spoon feeding, soft foods, and always ice cream. On good days we roll the cork from a bottle of wine back and forth and surprisingly her hand-eye coordination is still very good. Her reflexes still amaze me sometimes. Music, not TV, supplies the background. Although I tell her about my day, there are no signs of comprehension – but maybe I’m just boring! I help her up and often have to help her start to walk by urging her feet with mine until her body can take over. It is time for bed, and I’m not far behind.

I am one of the fortunate ones. I could never do this alone and my family shares the care now that I let them. It is not easy admitting you need help. Through a family network, professional caregivers, and resources such as the Alzheimer’s Association, mom and I will awake to try it another day.

ROCHESTER RESOURCE For more information on Alzheimer’s, support groups, and other dementias, call the Alzheimer’s Association at 585-760-5400 or the 24- hour helpline at 800-272-3900.

ABOUT THE AUTHOR Amy L. Hay, winner of the Alzheimer’s Association 2005 Quality of Life Award, owns and operates Comfort Keepers, a non-medical, in-home care agency.