When my wife, Shirley, was diagnosed with Alzheimer's back in January 2013, we thought that our life, as we knew it, was basically over. And, you know what? We were right, because the gradual decline in Shirley's memory and executive functioning was anything but the life we had known for the nearly 40 years of our marriage. But, in many ways, the diagnosis has brought it's own unique blessings with it, as well.
In the beginning
Shirley and I were married back in 1975, in Cherry Hill, New Jersey, a 24-square-mile town with a population of roughly 70,000. We raised our two children in Cherry Hill and have lived there ever since. Shirley has always been the somewhat strong and assertive partner in our marriage, with me being the kindly gentleman that she admired.
I'm jumping ahead a bit, but now that Shirley requires assistance with such basics as eating and bathing, it has required me to take a stronger leadership role in our home, and I actually enjoy the new experience quite a lot! Shirley does, too. I can see her eyes sparkle as I hold her hand and help her about the house or tactfully discourage and distract her when she wants to take her shopping wagon and go off by herself at the local grocery store.
Actually, our journey with Alzheimer's started with that old shopping wagon…
One autumn evening, I arrived home earlier than usual and spotted Shirley walking up the block with her shopping wagon, seemingly on her way to the grocer, two blocks away. The weather was very agreeable and she was wearing a light, mint green blouse that she knew I liked. She did like to please—usually, at least. Anyhow, the problem was that she was heading in the wrong direction, since all the stores were located going down the block, not up the block!
I quickly caught up with her and asked where she was going with the shopping wagon.
"To Subzi Mandi's, of course!" she replied.
"To Subzi Mandi's? Shirley, that's on Haddonfield-Berlin road. You're going in the wrong direction."
I didn't like the blank look on her face as she hesitated, and then said, "… I suppose you're right… Uh, how about if we go together? By the way, I see that you are home early today. What's the occasion?"
So we went to the local grocery store together. My mind was racing and I began to worry. We hadn't just moved. Shirley had been living here far longer than any other city she had lived in. Besides, she had such a good sense of direction, and this was very out of character, especially with her assertive nature.
An unwelcome, unsurprising diagnosis
To make a long story short, when Shirley was diagnosed several weeks later with mild Alzheimer's, we were devastated but not shocked.
Living with Alzheimer's was absolutely frightening for Shirley. Waking up every morning was terrifying, not knowing what the future would throw at us. It was a horribly lonely journey at first. Alzheimer's victims tend to each chart their own murky course, and statistics on what we were to expect, and when, were vague at best.
Our two daughters each responded to the news differently. Dorothy, our eldest at 37, who takes after her mom, took the news in stride, not unlike the way she reacted to my brother Bob's untimely death, several years earlier. Dorothy wanted to know the prognosis first and then focus on what needed to be done.
Elaine, is softer, more conscientious, and tends to take life's vicissitudes a bit harder. At 33, she was still somewhat dependent on Shirley and I, and phoned at least once (if not several times) a day for our opinion on this or that. She was hard hit when hearing this bit of news.
Elaine has since gotten over her initial shock and, together with Dorothy, comes over often to visit and sometimes goes out with Shirley for lunch or for a stroll in the park.
I sometimes need to cajole Shirley into bathing; she's just not in the mood many times and would go for days without taking a bath or shower. I know that's she's not to blame and that people with Alzheimer's tend to suffer from this phenomenon often. I convinced her last week that we are going out to dinner and the restaurant will not let us in if we don't smell nice. Luckily she bought that!
Finding support
I have started attending a local support group and that has been extremely helpful in helping me deal with my new reality. My feelings were validated, I got to share some of my unfulfilled dreams with other men and woman who were caring for their spouse, like I was.
I am now involved in educating others on Alzheimer's and how to cope. I sometimes lecture locally and I especially enjoy helping newbie's who are lightning-struck with the terrifying news of a loved one with Alzheimer's. Channeling my thoughts and feelings into something for the greater good has brought a measure of closure to my life.
It is important for families to realize that in 2013, according to the Alzheimer's Association, approximately 15.5 million Americans spent more than 17 billion hours caring for a loved one with Alzheimer's or some kind of related dementia disease—free of charge. That accumulates to roughly $220 billion of unpaid care!
It is also imperative for families to recognize when the time has come for them to transfer their loved one to a skilled nursing facility. The cost may be prohibitive, but with sufficient Medicaid planning information, one can get the professional guidance needed for these difficult life decisions.
To put our life's sudden turn of events in a nutshell in a positive light, I would say that there have been many blessings in disguise, including, learning how to be a more giving husband, father and community member, deepening my religious commitment, and taking on a greater leadership role at home and in the community.
Shirley's Alzheimer's has given me a new perspective on life and taught me the real meaning of love and giving.