Six Tips for Travelling through the Desert of Caring for Someone with Alzheimer's

By Dorian Martin, Health Guide Tuesday, November 17, 2009

Throughout my life, I always seemed to have focused on huge goals as well as a lengthy to-do list. Finish high school - check. Finish college - check. Land new job - check. Win election as officer of a state association and then a national association - check, check. Each of these events seemed like summiting a mountain. Once you reached the top, you could relax and enjoy the view.

But with caregiving, that's not the case. In fact, using a mountain as a metaphor for one's caregiving journey just doesn't make sense. That's why I found Steve Donahue's book, "Shifting Sands: A Guidebook for Crossing the Deserts of Change," so thought-provoking. "Mountain climbers can see their goals. The peak is visible. It inspires and guides them to the top. If you reach the summit, there's little doubt about your achievement - you know when you've made it," Donahue wrote. "However, if your goal is vague, is difficult to describe, or sounds more like a way of being than an end result, you are crossing a desert."

The book about Donahue's real-life trek across the Sahara Desert and the lessons learned seemed to provide some really valuable points to consider.

These include:

Follow a compass, not a map. Donahue suggests that maps are pretty useless in going across a desert. The same is true with caregiving, especially for a loved one with Alzheimer's since the disease can be so unpredictable. Instead of trying to focus on reaching Point B (such as Mom losing all verbal abilities - which she didn't), I discovered instead that I needed to follow an inner compass based on my own values and beliefs. Taking that approach helped guide me through the treacherous journey with my mom.

Stop at every oasis. In a desert, travelers look to find an oasis in which to stop and replenish. The same should be true of caregiving. Taking regular breaks to reestablish one's emotional, mental and physical well-being is critical. And if you don't take that time, you can easily feel like the proverbial person lost in the desert who is so parched that he/she has to crawl along on hands and knees looking for trees and water and who might expire at any time.  It's important to find these oases before you reach that point. My oasis often was weekend trips to major cities within a two-hour radius of the city where I lived. These trips allowed me to be with friends, which took my mind off of caregiving and Mom's condition. But I also could return quickly if Mom's health worsened (primarily because of her Chronic Obstructive Pulmonary Disease).

When you're stuck, deflate. Donahue describes that when a car's tires get stuck in the sand, the best way to free the car is to deflate the tires so that more tire tread can be used to grip the sand and pull the car free. The same is true of egos, even in a caregiving situation. I found that if I could keep my own ego under control (and thus, keep anger at bay) when there were mistakes made by the nursing home staff or by family members, I could address it more easily and get a better outcome for Mom. And I also found that by keeping my ego in check with Mom, I could find a way to communicate with her that allowed me to spend time with her but not cause her to become defensive. So I gave up the need to be right when having conversations with her (like when she would say she was at the airport when in fact she was sitting in a wheelchair by the nurse's station); instead, I focused on making each of us happy, calm and cared for during the time we spent together.

By Dorian Martin, Health Guide— Last Modified: 12/15/10, First Published: 11/17/09