I vividly remember beginning my journey through Alzheimer’s, at 5PM, April 10, 2001. Standing in a boisterous Manhattan hotel lobby, I hear via public phone the most personally devastating news of my life. Like a scene from a surreal movie, Mother’s neurologist utters the dreaded words…dementia…rapid onset, progressive, permanent…as good as she will ever be.
Completely numb, I hear voices and street noises…dreamlike, distant, disconnected from reality yet real, just like dementia. Drowning in a torrent of shock, rage, and grief, I want to vomit, scream, run away or collapse. My flooded mind thinks: No, this can’t be true! That doctor must be wrong. What will happen to Mother, to Daddy, to all of us? Will Mom forget me? And deep within a silent, sorrowful seed is sprouting: No more family as it has been, as we have known it. This is the beginning of the end.
Almost a decade has passed since that fateful phone call. It took years for Alzheimer’s disease to ravage and finally devour my sweet mother. When she died in September 2007, I was depleted, depressed and praying for release. Since then, I have recovered my energy and health, and have emerged from grief wiser, deeper, stronger.
Accompanying Mother through Alzheimer’s was the journey of a lifetime, uniquely mine, but so like others’ experiences in many ways. One aspect of caregiving is universal—all who give care also need to take care. This is particularly important for the nearly 11 million who care for a loved one with Alzheimer’s; 40% of these caregivers report the highest level of stress which takes a toll on physical and mental health, on work-life and family relations.
But good news: awareness of Alzheimer’s and caregiving is growing and more helpful resources appear nearly every day. Some noteworthy links:
Caring for a Person with Alzheimer’s Disease. 140 pages, free and downloadable at: http://bit.ly/aUpUsm For a hard copy, call: 1-800-438-4380, or visit: www.nia.nih.gov/Alzheimers
An ABC News interview with Maria Shriver discussing ways to help Alzheimer’s caregivers: http://bit.ly/ablenC
Another interview showing the experiences of Alzheimer’s caregivers: http://bit.ly/a56qLw http://abcnews.go.com/GMA/OnCall/video/living-alzheimers-role-caregiver-11915791
The Shriver Report: A Woman’s Nation Take on Alzheimer’s, just published in conjunction with the Alzheimer’s Association, online at: http://bit.ly/bfiPD4
The Elder Care Study: Everyday Realities and Wishes for Change, newly released by the Family and Work Institute describes working caregivers of the elderly: http://bit.ly/cgX3xJ
If someone you love has Alzheimer’s connect with others and with the many resources that can help. Be sure to take good care of yourself, too. You can’t help if you can’t function.