My Sister and I Have Become the Parents

by Susan Thornton

More than seven years ago, my mother was diagnosed with Alzheimer's disease. We've dealt with the "normal" issues a patient goes through as they start fading away, including frequent "wandering trips" in the middle of the night. It is a disease where you have to adjust to the next phase and plateau the patient goes through. And just when the family is getting used to dealing with this plateau, then the decline phase hits and it starts all over again.

We made a point of spending as much quality time as possible with her knowing that eventually she would be reduced to a "shell" who would no longer recognize any of us.

She is now in the latter stages of the disease, not recognizing us for many years. She can't walk, she doesn't speak a word and the saddest part of all is the disease has affected her muscles so she can't even raise her arms to feed herself or wipe her nose.  Even as the latter stages are upon us, we know this disease can go on for many more years.

Both my sister and I have, to a certain degree, become the parents. First to my mother as she rapidly declined, but also to my father.

My father is a perfectionist. Everything has to be in order, and with the disease, there is no controlling what will happen next. He has made great strides in accepting what cannot be changed and making the best of it. He has taken wonderful care of her, still keeping her home with minor assistance.

Since both my sister and I live an hour away from our parents, we call him daily to make sure he thinks through what needs to be done that day. This might include noting which home health aide is coming (there has been so much turnover), ensuring prescriptions are filled before there's only one pill left, planning ahead to have food in the house, (especially before a major snowstorm) and making sure sure doctor appointments are marked down on a central calendar kept in the kitchen.

As he gets older, it's hard for him to concentrate on more than one thing at a time, so we have to logically prioritize for him. The stress and strain of caregiving has affected him. We try to take him on a nice respite vacation once a year and plan some day trips during the year.

Although there have been turbulent times, we are committed as a family to help. My sister and I take turns visiting my parents every week, feeding my mother and keeping my father company. Many "friends" of his were scared off when my mother started getting sick, so he has very few that offer support.

Getting my father to go to an Alzheimer's support group was one of the best things we ever did. Despite initial arguments as to "why do I want to hear about other people's problems", he now goes to a support group twice a month and looks forward to it. He has made friends there who understand more than others what it's like to live with someone with the disease.

All our lives are not what we planned they would be, but that's what Alzheimer's does to us. We don't take things for granted anymore and appreciate all the special moments.

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