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JOAN’S BLOG – WEDNESDAY, AUGUST 12, 2009 – LAURA AND JAY JONES – A STORY OF EARLY ONSET ALZHEIMER’S DISEASE

As we all know, Alzheimer’s Disease is a terror that steals our spouses piece by piece, year by year, and can destroy our own spirit if we allow it. It is devastating for anyone at any age, but as more and more of our members will attest, it is not just a disease of the elderly. It can and does strike those in the prime of their lives. Our message boards are filled with stories of young spouses (40’s and 50’s) trying to cope with Alzheimer’s Disease and raising children at the same time.
One such couple is Jay and Laura Jones. I had the privilege of meeting them at the Alzheimer’s Public Policy Forum in Washington DC in March. Here is their inspiring story courtesy of the Miami Herald.

ALZHEIMER'S DISEASE

Alzheimer's diagnosis at 49 a call to courage

Jay Jones, who was diagnosed with early-onset Alzheimer's, with his wife Laura, her son Tomer and their daughter Natalie. The pup's name is Bella.
JONES FAMILY PHOTO

BY MARY THURWACHTER

Special to The Miami Herald

Jay and Laura Jones spent their wedding anniversary in Chicago a couple weeks ago. But the Lighthouse Point couple didn't jet to the Windy City to celebrate their eight-year marriage. They went to share their story at a Social Security Administration hearing on early-onset Alzheimer's. They also talked to ABC's Charlie Gibson about how their lives have changed.

You wouldn't know it to meet him, but Jay, a fit 52-year-old surfer who looks a decade younger, is one of five million Americans with varying stages of the progressive and fatal disease. By 2050, the National Aging Institute estimates, Alzheimer's may affect 13.2 million people. It's estimated that 400,000 Americans between the ages of 30 and 65 have the degenerative, memory-robbing form of dementia.
A warmhearted family man who was president of a $20 million-a-year yacht dealership, Jay has made it his mission to help others live with the diagnosis, especially those who, like him, have early stage and young-onset Alzheimer's.

This summer, Jay, who grew up in Palm Beach, was selected to serve on the National Early Stage Advisory Group.

Jay was 49 when he finally got the diagnosis.
``I struggled with him and doctors to find out what was wrong,'' Laura said. ``Everybody was telling me I was crazy. One doctor suggested he should take yoga classes.''

Laura had observed worrisome behavioral changes. Jay got lost driving home from a restaurant one night. He was nervous. He was combative and defensive.
``I would ask him to take out the garbage and he would say `I'm not stupid,' '' she said. ``He would leave his shoes on the kitchen counter and when I asked him about it he would get upset and drive around for hours. I thought he was a jerk. We were headed toward divorce.''
Jay was perplexed, too.
``I was losing things, and at work I would go to the bathroom, get back to my desk and ask myself if I had gone to the bathroom,'' Jay said.
Doctors suggested Jay's difficulties were the result of stress from his job or maybe some bug he picked up on a business trip to the Far East. The couple worried it might be cancer.

NEW CHALLENGES
It took 3 ½ years to finally get the diagnosis, and then there were a host of new challenges.
``We lost most of our old friends,'' Laura said. People just didn't know what to say.
Jay lost his job, Laura quit hers to take care of him, and then she had to get another one so they would have health insurance that didn't cost $2,000 a month. (They weren't eligible for Medicare for two years from diagnosis.) They hired a home health aide for Jay and a nanny for their daughter, Natalie, now 6. They got in touch with lawyers and doctors and the Alzheimer's Association for advice and support.
So many adjustments needed to be made. Jay stopped driving a car. Laura juggled work, doctors' visits and school meetings.

``Life's too short to be angry,'' Jay said. ``I've got a great family and we have a great house. I can ride my bike. I can go work out at LA Fitness.'' Sometimes his home health aide even takes him surfing.
A couple of days each week, Jay takes a bus to the Count and Countess deHoernle Alzheimer's Pavilion in Deerfield Beach. At first, he found himself surrounded with patients much older, but now he has friends closer to his age.

It's been 2 ½ years since Jay was diagnosed and things have gotten better. Along the way, the couple developed their spiritual life.
``We go to church every Saturday night,'' Laura said. ``We have new friends now.'' One friend, a nurse, comes over once a week to give Jay his shots and to make sure his medications are in order.
``It's been an opportunity to change our way of thinking and look at the excesses of our lives,'' Laura said. ``We're ecologically informed. We buy local food. We don't waste water. We have an awesome home. Jay got closer to Natalie, and I have a job I love.''
The couple is closer, too. ``We have a level of love most people never get,'' Laura said. ``Life is really a lot better.''

They believe, too, that there is a reason for the diagnosis, and they are determined to prove that people with Alzheimer's can still contribute.

And they are determined to keep their cherished sense of humor.
After all, says Laura, ``You don't have to know what day it is to be happy.''

WARNING SIGNS OF ALZHEIMER'S DISEASE
1. Memory changes that disrupt daily life.
2. Challenges in planning and solving problems.
3. Difficulty completing familiar tasks.
4. Confusion with time or place.
5. Trouble understanding visual images and spatial relationships.
6. New problems with words in speaking or writing.
7. Misplacing things and losing the ability to retrace steps.
8. Decreased or poor judgment.
9. Withdrawal from work or social activities.
10. Changes in mood and personality.

ABOUT EARLY-ONSET ALZHEIMER'S
Alzheimer's is not just a disease of old age. Many with early-onset are in their 40s and 50s. Up to 10 percent of people with Alzheimer's have early-onset. In the United States, that's about 400,000 people. It's important to know that:
• The disease affects each person differently and symptoms will vary.
• You will have good days and bad days.
• You are not alone.
• People who understand what you are going through can help you and your family.
For information and support, contact the Alzheimer's Association, 800-272-3900

Feedback to joan@thealzheimerspouse.com

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