Thursday, September 23, 2010

On Long Distance Care of a Loved One

There are 1100 miles between my front door and my mother’s home. The home I grew up in and she has known for nearly 60 years. She raised 8 children in that house and wants to live there until she dies. At age 86, she may get her wish. I hope she gets her wish and does not need institutional care as her Alzheimer’s disease is becoming more evident each time I speak to her. Being so far away and not being able to help in her daily needs is frustrating for me. I have four siblings living near her, one a developmentally challenged brother who actually does still live with her. Unfortunately his challenges make it difficult for him to assist in her care. He does his best. My siblings do what they can but not nearly everything that is necessary. Last Sunday my mom walked a mile to church and a mile home. For the first time she said that the walk was getting a little long. Somehow I can’t understand why she has to walk at all with so many relatives that drive nearby.

I call each morning to remind mom to take her medication. The daily pill box has long since stopped being a reminder; regardless that it is placed where she eats every meal. Buying a pill dispenser with an alarm is my next purchase. My brother tries to intercept the mail to discard the many daily pleas for donations that she receives. She will send each one a check for $5 or $10 but doesn’t pay her utility bill. She asks me to send her a list of the siblings, spouses and grandchildren’s names. She has spent the day with my oldest sister and her husband but can’t remember a thing they said to share with me. She still tries to do all the laundry which requires going down stairs to the basement and carrying a basket of laundry up. The only bathroom is located on the second floor so she climbs those stairs 6 or 7 times a day. I have managed to have grab bars and additional railings placed on all the stairwells for extra support. I have tried to coordinate a care program for her with all 8 siblings working together where we plan trips to visit to relieve some responsibility of those near her, pay bills with online banking, and finalize her legal issues and estate plans. The effort is exhausting as things move so slowly or someone drops the ball and doesn’t follow through … and my mom has 8 children with 6 spouses and 12 grandchildren. I can’t imagine what an only child or smaller families do to cope with the demands of caregiving. My generation didn’t have large families and the average is 2.3 children per family. For the first time in our nation’s history the birth rate did not exceed the death rate this year. Families are more mobile. For us in Louisiana, many families experienced relocations due to Hurricanes Katrina and Rita and no longer live near each other. As we see the expected rise in those affected by Alzheimer’s disease we will also see more long distance care situations and many frustrated caregivers. I’m grateful for the knowledge I have as an employee of Alzheimer’s Services and yet I have great challenges. I have great empathy for those we serve and hope we can help with those challenges.

Barbara Auten
Executive Director
Alzheimer's Services of the Capital Area