Six Tips for Travelling through the Desert of Caring for Someone with Alzheimer's
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.
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.
Travel alone together. Donahue explained, "...the most effective convoy technique for crossing open desert is to leapfrog: vehicles travel independently within the group. You're not exactly alone but not really together." This can be true for caregiving. In our family, my brother and I had a leapfrog arrangement, although it was difficult since Steve lives in another state. I'd keep him apprised about what was happening on a regular basis as Mom's memory slipped. We would arrive at our parents' house for the holidays with a game plan that we'd devised to try to help my parents with their situation (which, unfortunately, didn't work). When Mom was placed in the nursing home, Steve would come down for holidays and give me breaks from taking caregiving. And when the nursing home decided to move Mom to another room, Steve came for a visit in order to handle the transition since I was already committed to being out of town for that week. Thus, although we were rarely together, my brother and I were on the same page as far as caregiving was concerned.
Step away from your campfire. Donahue suggests that it is very easy to get used to the habits and judgments - "the world we know and the way we look at the world" - which he equates with being around a campfire. "When life changes and we realize that we are in a desert, we often look for more wood to make our campfire bigger....We want certainty and routine - not ambiguity and risk," he wrote. "But our campfire illuminates only a small part of the real world. Sometimes we have to leave that comfort and safety, because what we need is found in the darkness of our desert night." Donahue suggests that to leave a campfire, you may want to choose one (or more) of three types of nomads who know how to live in the desert - a mentor, a generalist, and/or a professional who has been trained to guide others across the desert. In my case, I definitely had mentors who had been in caregiving roles before. Also, any of the experts on this website fall into this category. Generalists are those who may not have directly experienced what you are experiencing, but they have faced challenges and know how to find support. These could be friends who have gone through difficult times and who know how to help you with your coping skills and stamina. The third type of nomad - the professional - could be the leader of a caregiving support group, a therapist, or a religious leader who has been trained in helping people explore their inner space. I opted to find this type of guide when Mom was in the early stages of memory loss, causing my parents to hit heads and attempt to lure me into the conflict. A psychologist helped me think about my role in the situation and how to plot my actions and reactions to my parents' dilemma. That way, I charted my own course, which I don't think I would have felt comfortable with if I hadn't sought out a professional's help.
Don't stop at false borders. "As we cross a desert of change, we sometimes find ourselves at a false border. We arrive at a psychic line of barbed wire where a seemingly omnipotent guard prevents us from continuing. Borders in life are significant turning points, moments of truth, opportunities for quantum inner growth and healing," Donahue wrote. False borders in caregiving can include making the assumption that you're the only one who can provide the level of care that your loved one needs and, thus, not asking for help. It also can be that you feel like you have to follow your loved one's wishes. In my case, while in her 50s and 60s Mom repeatedly told me she would rather be left to walk away in the desert if she had dementia than be placed in a nursing home. Furthermore, she didn't want to be "a burden to her children." Those comments created a false border in my head. When Mom had to go into a nursing home due to both her Alzheimer's and COPD, I suffered a lot of angst as those tapes of her voice played in my ear as I believed I had mistakenly crossed the predetermined border. However, during the two years that Mom was in the nursing home, I experienced tremendous personal growth and moments of truth. I learned how to reach out to people for help and I learned how to be present at one of the most difficult times in a person's life. I also learned how to accept death and help a loved one through those final difficult days.
Crossing a desert isn't easy. It takes tenacity, skill and a belief in one's self. The desert created by caregiving for a loved one with Alzheimer's can be especially brutal. But by following Donahue's five points, caregivers can help themselves eventually come out of the desert not only in one piece, but also stronger because of the amazing journey that they've taken.