Refuges and sanctuaries
Much has been written about support for the caregiver, but there were times when I never felt as though I could have enough support. Such was the enormity of living with my husband's gradual decline. I suspect many of you in caregiving roles will share my feelings. It was a thought-provoking moment when one of my meditation teachers said to me, "Know what your refuges are." Something about the word "refuges" struck a deep chord. What were they? Some of my outer refuges included working in the garden, taking a walk, arranging for respite time to visit a friend, going to my "three sisters" — three majestic white birches in my neighborhood. I could stand in the middle of them, lean back against a sturdy trunk, and just feel the embrace of nature. Something about their silent strength seemed to help my exhaustion. My birch tree sanctuary may seem like a small thing, but isn't it true that often surprising gifts come in the little things — a flower, a child's laugh, raindrops on a leaf?
As for inner refuges, I flew to my computer, sometimes only for a few minutes, to record some episode, or vent my intense feelings in words. Other times I created symbolic drawings, filling an art notebook with wildly expressive renditions of my feelings. My most important refuge, however, was going to meditate in the small room to which I retreated most mornings before Hob woke up. Although not everyone's way, meditation cultivates equanimity, acceptance and calm — as well as understanding for what creates happiness or unhappiness — all valuable for life in general.
Naturally, we also have to know what activities are refuges for our loved one. In Hob's case, he too loved the natural world, sitting outside or going for a walk, listening to music, playing his guitar (which he could still do quite late in the illness), watching golf on TV, looking at family albums — all quieter versions of the activities he'd always loved. Physical contact is always a balm. It can be as simple as sitting and holding a loved one's hand.
Finding the lightness
Although I don't want to downplay the enormous difficulties of Alzheimer's or my husband's periodical sinking spells over his losses, even difficult situations can be eased by finding a lighthearted element in them. My husband was blessed with a lively sense of humor. He often defused poignant situations, like losing things, with unexpected comments: "I get betrayed by colors," he might say, or refer to "the wily trickster of the physical plane." Or the day he declared, "I feel as though someone's taken the wheels off my roller skates." Invariably he'd break out laughing at his own creations, adding that his "word horde," as he called it, was slipping away.
When dealing with losses, humor might seem like the last possibility, but invariably it eased the situation for everyone. Finding the lightness even at hard times is a remarkable gift, another of those wisdom treasures.
Honoring the person
Given how the medical establishment focuses on pathology, I was determined not to be dominated by the weight of an Alzheimer's diagnosis. Whatever stage the person is in, do everything you can to relate to them as they are, not to their diagnosis. If you carry the label "Alzheimer's" in your head, you may end up relating more to your preconceived ideas and expectations than to the reality in front of you. That's like seeing the person through a clouded lens instead of with openness and clarity. Once while being interviewed, Hob declared, "They call it Alzheimer's, but I don't call it anything."
There is great wisdom in his words. Remember, too, that no matter how diminished the mind may be, the person is still there in some way. Perhaps only a shred of consciousness remains, but nevertheless the person still longs to be treated with compassion and love, even if he does not have the words to express it.
Finally, have faith
Mysteriously, we are given the strength we need to meet the challenges that come our way. Accept that you'll be stretched a lot, sometimes way beyond what you think you can handle. Appreciate the heroic dimensions of what you are living through. In many ways, dealing with any life-threatening illness is a form of initiation, a rite of passage. No one willingly chooses it. Whoever we are, whatever our circumstances, adversity calls forth our endurance, courage and openheartedness. Trust in that. As Rabindranath Tagore says in one of my favorite poetic fragments, "Faith is the bird that sings in the night while the dawn is still dark."
Olivia Ames Hoblitzelle is the author of the recently published Ten Thousand Joys & Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's.