Thursday, May 12, 2016

Living with Alzheimer’s: One Woman Finds New Purpose

End-of-life planning isn’t just about the legal documents we help our clients prepare. In our offices, there are many discussions that surface about related topics—disability insurance and the limits of Medicare. There’s a lot of confusion about hospice, and thanks to modern medicine, we are living longer lives, yet that quality of life may be threatened by dementia and Alzheimer’s disease.


One woman’s heroic journey with Alzheimer’s

The New York Times recently devoted a special section to Alzheimer’s. It’s a beautifully written story, Fraying at the Edges, by N.R. Kleinfield, that focuses on one woman’s heroic journey with this disease. New Yorkers Geri Taylor, 69, and her husband, 67, were recently retired, busy and active. Like many of us, Ms. Taylor had become forgetful; mundane tasks often confused her. One day she got off the subway and had no idea why she was there. She tried to pass off these increasingly frequent memory problems as inevitable infirmities of old age. But the day when she looked in the mirror and didn’t recognize the face that was staring back at her was her come-to-Jesus moment. She knew she could no longer ignore what was happening to her mind. She confided her fears to her husband and made an appointment with a neurologist.
She was diagnosed with mild cognitive impairment, a common precursor to Alzheimer’s disease. Her doctor put her on Aricept, a drug designed to improve cognitive performance, and it seemed to sharpen her thinking. But as her doctor told her, she wasn’t just losing her memory, she was losing “executive function”—she was forgetting the sequence of steps in the processes of all the little things we do, the things we take for granted.

The disease became her new invisible companion

Alzheimer’s became the new lens through which she viewed and lived her life. Ms. Taylor had spent her career as a healthcare executive, so she had witnessed Alzheimer’s in action. Now she was living it. Yet Ms. Taylor was wired to absorb adversity, and she pictured Alzheimer’s differently, with gumption and defiance. And so begins her journey.

She began making lists to keep her on track

There were many things to address—whether they could stay in their NY apartment, should they sell their Connecticut home. When to tell their children and grandchildren. The economics—they were financially comfortable, but this disease can devour resources. They needed to think about updating their Living Trusts—while they still could. Her therapist advised against telling anyone—“friends will desert you”—so she dumped her therapist, shared the news with her friends and was rewarded with a range of responses.

A proactive approach to living with Alzheimer’s

She had always been interested in photography, and now she took a photography workshop and spent hours taking pictures of birds and other natural scenes. She was grateful for her large, supportive network of family and friends. Her husband overcame his initial reserve and their relationship became stronger than it had ever been, yet there was a bittersweet quality to their time together because they knew it could not last. Her iPhone became her best friend—endless notes to herself; calendar appointments were her salvation. Pictures with word associations to help her remember. With low expectations, she joined a support group and was delighted to find that these were the people with whom she could share her frustrations, victories and challenges. 

She noticed changes in her personality

She had to give up driving. She’d put on her makeup but forget an ingredient—foundation, blusher, lipstick—it was a sequence thing, and these were now often beyond her grasp. A new element of her personality emerged—she became friendlier, striking up conversations with strangers—she’d lost some of her former reserve.
Ms. Taylor was accepted into a clinical drug trial, though she didn’t know whether she’d be receiving the new drug or a placebo. She had her genes tested and learned that she’d inherited two copies of the ApoE4 Alzheimer’s gene—one from each of her parents. Her father had died of Alzheimer’s, and sadly, her son carried the gene as well.

Ms. Taylor embraces Alzheimer’s as her purpose, helps others live with the disease

Finally, Ms. Taylor and her husband prepared a presentation that they began delivering to audiences—with a very positive response. One person asked her how she dealt with the sadness. “We all face the same destiny,” she said. She had looked forward to a very different kind of retirement, having the time and resources to enjoy her family and friends, but now the time remaining to her had become very precious, and Ms. Taylor realized that helping others deal with the darkness of Alzheimer’s, helping them understand how to live with their disease—rather than simply preparing to die with it--had become her new purpose.
Have you been procrastinating about creating a Living TrustContact California Document Preparersat one of our three Bay Area locations and schedule an appointment today! 

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