My Wife’s Alzheimer's Transformed Our 40-Year Marriage

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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.

This story was told to Ben Lamm, a communication specialist and blogger at Senior Planning Services, by a close family member.

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4 Comments

My wife and I are walking a path that parallels that of Ben and Shirley. Some of the twists and turns are different, but the direction is the same and the scenery is quite similar. In our youth, we never imagined that Alzheimer's would be a part of "in sickness or in health." In fact, a half-century ago, Alzheimer's was not even in popular vocabulary. But faithfulness to a covenant has its own rewards, as we choose to love each other with the new challenges and new insights that each day provides. Like Ben, by wife's disease has opened doors of service for me, and these contacts provide additional support for the two of us as engage others with similar dementia challenges. For many, we seem to be able to offer a blessing just by referring to Alzheimer's without shame or apology. One recent blessing we have shared is the entry into a longitudinal drug study. We don't know that it will help us, but at least our participation may help our children.
This was such an enlighting story. Thank you. For many years I would visit my mom and dad. When dad passed my two sisters thought my mom needed assisted living. I began to take her shopping , taking her to the grave site, and just going and getting ice cream at Sonic. Those few months were very enjoyable. We would laugh at silly
Things I did and Sullivan things she did . One time I took the wrong exit from shopping and boy did my mom know it. I knew how to get back on the highway but my mom acted as if she knew better (and of course I let her) any way we got back on track home. I just laughed and she did too. She confided in me for some reason. Now because my sister POA thought I was trying to get mom against her I only see her once a week and I can't take her anywhere. I hope by August I will once again get to take her out. I'm am just very glad to read your story. Keep
Up the good work. We only last on earth for a time and then it's God's time to take us up to Heaven if you believe. my problem will pass and I do try to bring things for me and mom to do when I visit. She loves me to bring magazines, fruit, and ice cream. Some of the stories I read caregivers are less fortunate then me and I am thankful for this time. My mom still knows me and she is always happy to see me on Saturday. God bless you.
The author of this article is a very caring and loving person. He has great strength of character as well. Not all spouses can or will be as sensitive and giving.
I owned an Alzheimers care home for 15 years and saw a variety of caregivers bring their loved ones to me for placement. Some came religiously to visit their loved one and others never showed up no matter the occasion. Some family members and friends of the Alzheimers patient are just unable to see their friend or loved one in their altered state. That is understandable but sad when the person with the disease remembers that friend or loved one and mourns their absence.
I sold my care facility 2 years ago in order to stay at home and become the caregiver to my husband who has Alzheimers. I know how to take care of a person with this disease but it is totally different when you are LIVING with the person that has the disease. All of my training and experience have not helped me ignore the tantrums, the paranoia or the resistance to care. The relationship between my husband and I have often caused him to resist what help I have been giving and any direction I try to give. After 46 years of marriage there are patterns established that he occasionally remembers and does not want changed. This is a difficult journey for anyone to take but caregivers that have been family members or friends of long standing have a far more difficult road to travel than a newly introduced caregiver.
God Bless all care givers! They are so important!