My Journey with Alzheimers: A Caregiver's Notebook

Collin Tong is the former senior director of communications at Washington State University. He is currently pursuing graduate studies in theology and ethics at Seattle University.

(Courtesy Collin Tong)

It was more than ten years ago, in 1999, when I first discovered that my wife was having serious problems with short-term memory.  We were on a walking tour of Provence in southern France when I noticed that Linda had forgotten to bring several items for our vacation.

After we arrived in Paris, we spent a half a day wandering around the city looking for stores to buy contact lens solution, sunscreen, toothpaste, and a face cloth.

I didn’t think anything was amiss until we returned to Seattle that October.  Unanticipated events had dealt us a major blow when her younger sister, who had recently had a kidney transplant, died from complications during a routine dialysis.  Linda’s memory lapses only increased during her protracted grieving process.

Coworkers noticed that Linda was having more difficulty at Seattle City Light where she had worked for 20 years as an energy conservation analyst.  A normally well-organized person, she forgot her appointments and drove colleagues to distraction by endlessly repeating questions.

This was the same Linda who had been so meticulous about gardening, cooking, taking care of the family finances, and just about every aspect of our 38 years together as a married couple.  She was always upbeat, vivacious, with an effervescent gleam in her eyes, and the smile that won my heart when we first met in 1971. 

advertisement

Linda took an extended leave-of-absence so that I could take her to see a neurologist, clinical psychologist, and other dementia specialists.  All had reached the same conclusion, namely that her short-term memory loss stemmed from clinical depression, a diagnosis that later proved to be incorrect. 

I continued my communications director job at Washington State University and put Linda’s memory problems in the back of my mind.  I didn’t realize it at the time but I was in denial and slow to face the dreaded possibility that she might be suffering from something more consequential than depression.  Indeed I was only living through the stages of grieving itself: denial, despair, frustration, and increasing isolation from family, friends, and even the person I was caring for. 

My normal way of dealing with terminal illness was to not deal with it. Like many people who care for a loved one with dementia, I knew little about Alzheimer’s and was hesitant to learn more.  I went to bookstores to scan medical books about the disease, but the more I read the less hopeful I became for any improvement in Linda’s condition. 

The daily press of work left me little time to focus on her disability.  Instead, I took on additional responsibilities, which was a way of coping with the demands of her slow but irreversible deterioration.  My mother in San Francisco had died two years earlier of pancreatic cancer, and I was still in the throes of mourning her death. 

As time went on, Linda’s behavior grew more erratic.  Our lives became more challenging as her grief over the passing of her sister continued unabated. Overburdened by the demands of work and caregiving, I took early retirement from my university job.  

My growing acceptance of Linda’s memory problems notwithstanding, I could not ignore the signs of her cognitive decline.  By then, our familiar world was slowly dissolving.  She was 57 years old in 2005 when she was diagnosed with early-onset Alzheimer’s disease.  The news devastated our families and friends.  Our lives were about to change profoundly. 

Shortly after her diagnosis, I called the Alzheimer’s Association 24/7 Helpline in Seattle and spoke with a very helpful staff employee, Karl Thuneman.  Karl and I soon realized that we had been colleagues at the Eastside Journal-American newspaper in Bellevue many years ago.  But his dedication to assisting me and Linda through our unexpected life crisis was obvious long before either of us realized we had a connection.

The physical and emotional toll of being a full-time caregiver are daunting.  However much one tries to prepare for being a caregiver, nothing adequately prepares one for the challenges of caring for a loved one.  I felt overwhelmed with the daily chores of cooking, cleaning, shopping, paying bills, mowing the lawn, doing the laundry, or just attending to the daily necessities of keeping our lives afloat.

We went to church less frequently and began skipping social activities, and even the unthinkable, missing my nephew’s wedding in California.  Our absence was felt all the more keenly by our friends because we had been so active in the community before her debilitating illness. 

Fortunately, our families in the San Francisco Bay Area and southern California helped us tackle the financial, legal, and related issues such as helping Linda to secure her Social Security disability and retirement pension, my health insurance, our living trust and power of attorney, and health care directive.  Linda’s brother and family spent a week with her when I attended my Peace Corps reunion in New York.

Friends brought over hot meals and cared for Linda whenever I ran errands, visited friends, or needed a break.  One retired couple helped mend a broken fence, fix a leaky faucet, and organize our disheveled home.  Another bought a new carpet.  Our church organized a weekend work party to mow the lawn, and beautify our weed-strewn garden.  Still another even helped with more mundane tasks like doing our laundry.

Through trial and error, I learned that while being a caregiver is challenging, help is always available if one is intentional about seeking it.  One only has to reach out to others.

Self-care is of utmost importance.  Going out to lunch with friends, seeing a Mariners game, or just taking walks were replenishing.  Equally important is developing a strong network of supportive friends.  Fortunately, the Alzheimer’s Association became our lifeline, along with our faith community at University Temple United Methodist Church.  The Alzheimer’s Association put together a comprehensive care plan for Linda. 

Most important of all for me was accepting the inevitable feelings of grief and loss as Linda changed, and acknowledging the things that were beyond my control while making decisions about things I could control.

At the encouragement of a social worker friend, I joined an early-onset Alzheimer’s support group in Seattle.  Additionally, the Alzheimer’s Association’s Connections program helped put us in touch with a placement specialist to find Langland House, an adult family home located less than ten minutes away from our home in the Sunset Hill neighborhood of Ballard.

That year, I volunteered with the Alzheimer’s Association’s 2008 Champions advocacy campaign, began getting involved in advocacy work and staffed an information booth at the Memory Walk, the association’s annual fall fundraising campaign.  Through the Association, I have met some wonderful, dedicated people.  The Association has become an integral part of our support system.  In a very literal sense, it became a part of our extended family.

Sadly, ours is not a unique experience.  More and more people under 65, that is, baby boomers, are getting early-onset Alzheimer’s disease.  At last count, Washington state has more than 110,000 people with Alzheimer’s. About 70 percent of those individuals live at home, and 70 percent are cared for by unpaid caregivers, mostly family and friends. 

Worldwide, an estimated 35.6 million will be living with dementia in 2010, a number that is estimated to nearly double every 20 years, according to the 2009 World Alzheimer’s Report.

Because of the unrelenting demands of 24/7 caregiving, taking good care of one’s physical and emotional well-being is all too often given short shrift.  Stress and anxiety inevitably lead to social isolation and the downward spiral of frustration, despair and hopelessness.

Fortunately, many organizations exist that provide respite care.  I helped enroll Linda at ElderHealth Northwest, an adult day health program located at the Ravenna neighborhood, one of several sites in Seattle, where skilled and dedicated care professionals engage her in daily social interaction that helps maintain her health.  Some 36 adult day health centers offer services throughout Washington state.  In King County alone, ElderHealth NW serves about 1,400 elderly and disabled citizens. 

Organizations such as Volunteers in America also provide invaluable respite care services.  In many instances, I turned to friends and family for assistance with taking care of Linda when I needed to take time out from caregiving. 

Navigating the formidable challenges of caring for a loved one with dementia or Alzheimer’s disease need not be a private, solitary journey.  Indeed, as I learned, it is next to impossible to attempt to surmount those hurdles without reaching out to others.  Because of our extended network of family and friends who went the extra mile to be our lifelines and safety net, ours has been a life-transforming and life-affirming journey.