59: Joy Through Tears

59: Joy Through Tears

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Joy Through Tears

Act as if what you do makes a difference. It does.

~William James

“Hi my name is Ken. I am living with Alzheimer’s disease.” This is what my husband says when telling the story of his journey with Alzheimer’s. It took more than a year for him to become so forthcoming, but as he immediately adds, “It is such a relief to be able to say that.”

For quite some time, I had noticed changes in Ken’s personality and behavior, as well as difficulty with problem solving, reasoning, and judgment, particularly involving our finances. One day, Ken announced we had to file for bankruptcy. How was this possible? We went to an attorney, who confirmed Ken’s fears. Shortly after, it became apparent that we would have to give up our home. It took the attorney months to unravel our files and financial records.

One day, I saw Ken sitting at the computer, staring at it for what seemed a very long time. He said he couldn’t remember how to turn it on. It was then that I realized this wasn’t just forgetfulness.

We went to a doctor who specialized in geriatrics. I brought my page-long, typewritten concerns and observations to the appointment. At the bottom of the page I wrote, “Please help us!” The doctor administered tests, and then quietly and calmly stated that my husband had early-stage Alzheimer’s disease. An MRI and neuropsycho-logical testing confirmed the diagnosis.

I was relieved, but devastated. Ken was angry and devastated. We had no money, we were going to be homeless, and now we were facing Alzheimer’s disease. After speaking with other families living with Alzheimer’s, we now know how common financial difficulty, including bankruptcy, can be before a diagnosis.

Within a month we had moved from California to Minnesota to live with our daughter. We stayed with her for six months while we reorganized our lives, but we both continued to be devastated and depressed. Ken was in denial.

A friend called to see how we were doing. I said, “Not well.” She suggested I call the Alzheimer’s Association on their toll-free 24/7 Helpline (800-272-3900). It provides services to families and professionals, including information, referrals, and care consultation, and it has become what I call my “Lifeline.”

When I called the number I was immediately put at ease by a wonderful, warm care consultant, who has continued beside us throughout our journey. Her help, in addition to the support services and educational classes at the Alzheimer’s Association, made us realize we had a choice: We could accept what we were facing; or we could remain devastated, fighting the reality of Alzheimer’s, which would most assuredly result in more anger, fear, anxiety, and negative energy.

We chose to accept our new now, not to give up, and to have love and compassion for ourselves as well as for others. I started a gratitude journal to celebrate the time Ken and I have together and to recognize his strengths, rather than lament what he is unable to do.

We have learned to live well with Alzheimer’s through nutritional eating habits, engaging in social activities, exercising daily and embracing cognitive challenges. We have made music an important part of our lives.

As champions for the fight against Alzheimer’s, our lives are purposeful, encouraging, and full of hope. We advocate in our state capital and in Washington, D.C., asking legislators to support research and the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act. We speak at Alzheimer’s educational events for professionals and families.

Ken is on the Early-Stage Advisory Board for the National Alzheimer’s Association and the Minnesota/North Dakota Chapter. He is also a mentor to those who have recently been diagnosed with Alzheimer’s through the Peer-to-Peer Outreach Program at our chapter.

Anyone experiencing significant memory problems should see a doctor as soon as possible. Early diagnosis and intervention methods are improving dramatically. Treatment options and sources of support can improve quality of life for the person with the disease, as well as the caregiver and family.

Alzheimer’s is not a blessing; but from it many blessings have come to us. I know. I am my love’s wife and caregiver. There is life after a diagnosis of Alzheimer’s. There is joy through tears.

~Mary Margaret Lehmann

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