Precious Window of Time

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Contents

Acknowledgments.............................................................................xiiiChapter 1: Then and Now.....................................................................1Chapter 2: A Positive Approach to Alzheimer's: The "Ings" Interview.........................9Chapter 3: Transitions......................................................................39Chapter 4: Facing Challenges, Adapting, and Coping with Change..............................43Chapter 5: How Our Faith Has Sustained Us...................................................47Chapter 6: Strategies.......................................................................51Chapter 7: Comments from Our Children—Rebecca, Rachel, and Joshua.....................61

Chapter One

In the years before Paul's Alzheimer's diagnosis, he was a self-employed wholesale food distributor; he was most proud of having been the first-ever distributor of Ben & Jerry's ice cream. In addition to his vocation, his passions included opera, ballet, music, and (watching) all sports, especially the Yankees. He was a lifelong learner, and after retiring, he audited courses at the local college regularly. Paul read voraciously. He was a people person. He had an even disposition and everyone loved him. He made no waves. He worked long hours at Eastern Food Supply, his food service business. He served on many boards, including the Crandall Public Library, the World Awareness Children's Museum, and Synagogue Congregation Shaaray Tefila, and he was president of the Lake George Opera Festival. Paul was a highly respected member of the community.

Several years ago, Paul and I went to the Lahey Clinic near Boston for Paul to have a complete physical exam. Paul wasn't doing well, and although I couldn't articulate what was happening, he wasn't "Paul." He had been going to a range of specialists, but an overview was needed.

We came away devastated. The doctors discovered that Paul's arteries were clogged once again, even though he had had a quadruple heart bypass operation years before. He was also told that he needed a prostate operation, that he had stenosis of the back for which he should see a surgeon, and that he should also see a neurologist. The recommendation for Paul to see a neurologist came as a complete surprise. I was so focused on the physical aspects of Paul's health that I hadn't paid enough attention to the strange behaviors he was exhibiting. For instance, I didn't catch that a significant change in how Paul was recording his business transactions had taken place. Or that his judgment was not solid—for example, he would cross a street without first checking for oncoming traffic.

Lahey Clinic made the appointment with the neurologist for that same day, and this doctor told us that Paul had Alzheimer's disease. As you can imagine, both Paul and I were shocked, and we left depressed and utterly discouraged.

We came home and tackled one problem after another. I sought the best doctors I could find in the Glens Falls-Albany and surrounding area and showed them the findings from the Lahey Clinic. The local urologist performed Paul's prostate operation. A decision was made to hold off on performing surgery on Paul's back.

Concurrently, I took Paul to a holistic doctor who put him on supplements to replace medication wherever possible and encouraged him to improve his eating habits by keeping a chart of his food intake and drinking nourishing smoothies. He motivated Paul to begin an exercise regimen and put Paul on an antidepressant. Paul responded to this new approach, and even though he was confused at times, he came back to the living.

Reaching agreement regarding the diagnosis of Alzheimer's disease, however, was not an easy process. Fortunately or unfortunately, in spite of the initial diagnosis made by the neurologist at the Lahey Clinic, Paul passed the diagnostic tests administered by local doctors with flying colors. Since Paul majored in math and English in college, these sections of the tests were very easy for him.

Finally, four neurologists later, a proper diagnosis was made and was accompanied by a plausible explanation. The doctor stated, "Paul, these tests work well for almost everyone, but you fall between the cracks." I later learned that this can happen to patients with above-average intelligence. And while this is not typical, in Paul's case, his high level of performance on the tests reflected his native intelligence, masking his condition of deterioration. Paul was put on Aricept; at a later date, Namenda was added.

Paul experienced the phases that most people go through with Alzheimer's disease—denial, frustration, anger, agitation, confusion, roaming or wandering, loss of memory, loss of reasoning, loss of judgment, and the inability to make choices. His personality changed as well. He became very argumentative.

Throughout this time, I too was frustrated, angry, confused, and often at my wits' end. Life became so difficult and stressful that I would pray each night that I would be able to make it through the next day. Paul would go off skiing by himself, and I would worry that he could ski safely and find his way home. He loved to do our grocery shopping, but he would often bring back the opposite of what I had requested. Even when I insisted he take a shopping list, he might forget to look at it or even remember he had a list with him. As he left the house, if I said, "Paul, we need sweet potatoes," he would come home with white potatoes. I bought cell phones to help, but Paul would forget to take his, or he would forget where it was or how to use it.

I couldn't figure out what was happening, and I had conflicting feelings. Was he intentionally doing this to get me upset? I wasn't sure if this was passive aggression—his way of showing anger—or if something else was going on. Eventually, I recognized that he wasn't deliberately trying to upset me, but rather, he lacked the understanding that he could no longer remember. This insight allowed me to shed my anger and deal with what was causing the problem: the Alzheimer's.

When the diagnosis was confirmed, I sought help from a therapist. I found myself crying and using up boxes of his tissues in one sitting. I was stuck in my grief. I wanted to scream! I was grieving the death of our marriage as I knew it, the slow death of the person I loved, and the sadness of knowing our lives were forever changed. However, I knew it was necessary to go through the grieving stage first before acceptance could take place, and I was grateful for help in my grieving. I realized it was essential to seek professional help. I needed this help in order to move forward.

Wisely, I came to the conclusion that whatever number of years Paul and I had left, we would live them in a positive way. I was determined to eliminate any unnecessary stress and devote my energies to our relationship. First, I made the crucial decision to move. Despite the fact that our home of over thirty-five years was important to our family, with many beautiful memories, I knew it was time to simplify our life. We sold our house and moved to The Glen at Hiland Meadows, a senior independent-living community. Not long after we moved, The Glen offered a free six-week program for caregivers of...