Sunday, August 5, 2012

Changing the Caregiver Perspective

The Story of a Typical Couple Facing Alzheimer's Continues...

Susan* was not born with the ability to handle difficult situations, such as troublesome dementia behaviors. At one time, she could only concentrate on her WOE—she felt chronically worn-out, overwhelmed and enraged. She was too proud and ashamed to confide in outsiders. Her focus was on the negative. She recounted  the disappearance of old friends, whose discomfort around Peter* kept them away. She mourned the loss of his former companionship and their sexual relationship. She guiltily admitted to bouts of irrepressible anger in the face of Peter’s intransigence and aggression, which is typical of some dementias. She acknowledged her deep resentment over Peter’s three siblings, who have been less than attentive. Their primary involvement has been interfering and critical.

Once she confronted her feelings of anger and shame, she decided to seek help. As a result of attending a local Alzheimer support group, she has undergone a major shift in her thinking and behavior. She no longer feels so powerless and voiceless. Workshops on dementia care, as well as reading medical newsletters and inspirational books, have provided countless ways in which she can develop skills and strategies.

What she has learned are six very basic principles that have transformed the way she provides care. Empathy comes first for Susan because it allows her to see the world through Peter’s eyes. From this vantage point, his world often appears confusing, lost and disconnected. Compassion allows Susan to stay centered with Peter by offering kindness and sympathy, even when his life appears upside down. Connection for Susan involved a wide array of visual, verbal, physical, emotional and spiritual cues. For instance, Susan and Peter hold hands as they begin every meal with a familiar blessing of the food, and after eating, they finish with a simple statement of gratitude. Mealtimes, once tumultous, have become calmer and far more enjoyable.

Supportive Communication requires not only acknowledging what Peter says, but Susan validates his statements by repeating them or asking for clarification. She also has a detective’s intuition for exploring what he really means, what his needs are and what may lie behind the words. She doesn’t stop there. She offers new words, a shift in location and a new activity or focus. Above all, making real changes involves Self-Acceptance—of limitations, foibles, past errors of judgment, fatigue, lack of patience and other shortcomings.

Susan feels she’s a “work in progress” as she struggles to eliminate negative thinking in her relationship with Peter. She understands all too well that Peter does not have control over many of his functions and behaviors, and does not blame herself for Peter’s frequent setbacks. If what she is trying is not working, professional advice is: she STOPS, backs off, thinks it through, and then re-approaches the situation by trying something  different. For instance, if the scrapbook idea simply caused Peter to be agitated, she would put it away, and consider an alternative plan. It might look like this. “How about some delicious hot chocolate, Peter? I even have some leftover marshmallows from last week when the grandkids were over.” Who could resist such an offer—surely, not Peter?

Undoubtedly, the most radical idea proposed for successful caregiving is the notion of being a Care Partner. For Susan, this took a leap of faith. She quickly rejected the “no-relief-in-sight” formula, because it undermined both her efforts to give care and Peter’s attempts to adjust to his illness. Instead, she cast about for an alternative approach. Gratefully, she found that caregiving can be regarded as a special, perhaps unique lifestyle, one that focuses on the benefits and rewards of being in partnership, even while living with a serious disease.

Susan also knows that their Partnership is time-bound. As Peter increasingly loses mental functions, and can no longer participate in a mutual way, she must shift into being a Coach. She remembers her son’s football coach, and how his leadership style inspired and encouraged the boys to do their best. He was a hands-on guy who knew the strengths and weaknesses of his players, and always focused on what a player can do, rather than push what he can’t. 

In fact, she spent yesterday with their new computer showing Peter how to access his photos, check his email and gain access to the Web. Peter’s enthusiasm was infectious, but when Susan left on an errand, he became easily discouraged. Susan will need to be by his side for this activity to be successful. Focusing on the Positive Aspects of caregiving allows Susan to pursue her interests, while at the same time assisting her partner’s efforts to live a quality life. 

The challenges of caregiving have reshaped Susan’s idea of giving as she recognizes what her care partner is still able to do. Through sharing dishes, folding laundry, sorting out or writing bills and other tasks, she has become more open to a deeper level of awareness in her day-to-day life. She continues to marvel at how animated and happy Peter can be when they work as a team or enjoy a film at home together. He remains his own person, despite changes, and she finds joy and satisfaction in acknowledging their ongoing relationship.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

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