We were determined not to buy into Western medicine's pathology approach to this illness. I resolved that we would greet this experience as creatively and lovingly as possible. When we talk only about a diagnosis, we relate more to the illness than to the patient. Wisely, my husband said, "They call it Alzheimer's, but I don't call it anything." Yet he openly told people that he was having "memory problems" -- a compassionate way to refer to the process.
From my training in meditation, I knew that some traditions regard the last chapter of life -- including death -- as the most important, so I pledged to care for him as thoughtfully and lovingly as possible.
Don't let the illness isolate you and your family. Find a support group, consult an Alzheimer's specialist, take a habilitation therapy course and find a good caregiver's guide. Ask family and friends for support and set up regular schedules for visiting.
This attitude presupposes that we hold a larger perspective toward illness. Yes, it's heartbreaking, but mental decline is also in "the natural order of things," a phrase I found comforting.
To prevent burnout, I made a list of activities that replenished me (meeting with friends, being in nature, an occasional massage) and arranged to get respite from caregiving whenever I could.
For me, I relied on the practice of mindfulness. Why? Because moment-to-moment mindfulness keeps one's awareness focused in the present as opposed to worrying about the future or lamenting the past. When we embrace the spiritual dimension of caregiving, difficult situations become an opportunity for growth. Amazingly, we may even find blessings or grace in adversity.
One of my spiritual teachers pointed out that caregiving gave me the chance to practice "the perfections" -- transcendent qualities like patience, generosity, effort, loving kindness, and compassion. Even giving a spoonful of food, he said, involves these qualities. This transformed the way I looked at caregiving.
It helps to develop rituals that provide a repeated, familiar structure for the patient. Everyone will have different ones, and they may be very simple things. Here were some of ours: tea in the late afternoon ("sun-downing" time), preferably outside in good weather; a daily walk in two familiar places; singing before meals; meditating together for 20 minutes; and for him, the comfort of watching golf on TV, listening to music and a warm bath before bed.
If we bring our best effort to the spirit of caregiving, it helps to transform even the most challenging aspects of Alzheimer's.
Visit www.tenthousandjoysandsorrows.com for more information on Alzheimer's, caregiving, and resources.
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