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The Author Speaks

How My Husband and I Dealt With Alzheimer's

A personal essay

caregiving

Olivia and Hob Hoblitzelle — Courtesy of Birch Tree

Contrary to our culture's limited views of the elder years, I'm convinced that the last chapter of our lives may be the most heroic of all. We don't know in what form our final challenges will come. The question is, how will we handle what comes our way?

I speak with particular passion about this subject, because I've lived through — and written about — how my husband and I negotiated our journey with Alzheimer's. With this illness, as with many others, how do we learn to live with acceptance and equanimity when faced with the heartbreaks of loss, particularly in the case of dementia? I'd like to share with you a few of what I called our "wisdom treasures," the most valuable insights that came from this poignant time.

First of all, we needed to cultivate the quality of acceptance. Whether partner or patient, surely none of us ever forgets the moment we learned about the possible diagnosis of Alzheimer's. I remember feeling that now there were three of us in our relationship — my husband, affectionately known as "Hob," me, and the diagnosis. There's a caution here: Some people are open about their diagnosis; others never mention it or may not even be aware of it. We need to respect whatever way the person is dealing with their situation.

For us, as spouses or family members, it's helpful to acknowledge that when we resist the reality of our situation, we make life harder. We create suffering for ourselves. This is where cultivating acceptance comes in. Sometimes in particularly difficult situations, I'd remind myself to breathe slowly and calmly, and I'd silently repeat the word "acceptance" to anchor myself during unsettling moments.

An open discussion

Because of our shared background in psychology and meditation, and how both fields involve understanding the nature of the mind-heart connection, Hob and I discussed how we wanted to handle his situation. We didn't want the reality of deepening dementia to overpower us, so we made an agreement to live as "consciously and lovingly" as possible with whatever unfolded. What does "consciously" mean? It means looking with openness and curiosity at mental loss and talking about it from time to time. We actually made a deal that I'd occasionally ask him to give me "reports from the interior." What was he experiencing? For both of us, this meant leaning into the winds of difficulty, facing into the storms of unpredictability even when it seemed the hardest course. As for "lovingly," that meant that love — ours and everyone's — could embrace even the most difficult circumstances, including eventually death.

After receiving Hob's diagnosis, I knew I'd need all the support I could find. I turned to a wise friend, a Tibetan teacher, who had helped me at other critical times in my life. I knew already the benefits of meditation and cultivating mindfulness in daily life, but I had no idea he would offer me the most inspiring teaching for how to deal with what lay ahead.

Strength from a higher source

"Any situation can be a source of growth," he began by saying. "This is difficult, but it is a training, a teaching, a blessing."

He continued, explaining that our situation could also be a healing process in the deepest sense — "that taking care of Hob would become a meditation" for me, that caring for anyone involves the Buddhist practice of the "perfections" — patience, generosity, effort, compassion and wisdom.

These qualities are, of course, honored by all spiritual traditions. In short, he was offering me the highest perspective with which to approach the challenges of a major illness, another wisdom treasure. His inspiring words were like a compass to use to steer through troubled times. He told me that whether we are the person with the illness or the caregiver, we need to be compassionate toward ourselves. To deal with a long-term, ultimately terminal illness, we face Himalayan challenges. It's natural to experience a wide range of feelings — disbelief, anger, dread, sadness, despair, fear and grief. We need to accept that our strong feelings are inevitable, to name them, to experience them fully, and then do our best to move on. Here's where compassion toward oneself comes in. It means being nonjudgmental and gentle with yourself. If you're the caregiver, accept that you are going through a parallel process of your own. You're in new, ever-changing territory and learning how to respond as compassionately as you can. That's a tall order!

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