It’s About More Than Memory in Dementialand

Sometimes when I do a presentation, I ask people to shout out the first word that comes to mind when I say “dementia.” Without fail, I hear “forgetful” and “memory.”

Sure, people with dementia can be forgetful. And, yes, their memory is impacted. However, the public’s impression of this disease is that it’s all about old people and forgetfulness. First of all, it’s not only old people who are diagnosed. Also, memory loss is one symptom of dementia, and many times it isn’t the symptom that is most challenging for individuals and families.

Let me tell you a few stories that illustrate how memory loss isn’t always the red flag indicating a problem.

A while back, I had the privilege of visiting the Motherhouse—the home for retired Catholics nuns. I did a presentation for employees and residents, but the best part of the day was chatting with the sisters who helped to take care of their friends with dementia. Let me tell you that I was blown away by the kindness, humor, and intelligence of the women that I met. I was also impressed with their commitment to equality….and the giant “Refugees Welcome Here” sign I saw as I drove up the hill to their home. In addition, I learned that you don’t refer to a group of retired nuns as “you guys.”

One sister told me about a friend of hers who had served the church since early adulthood. In her early 60’s, her loving and generous personality changed. She became bitter and angry. Her love for the Catholic church faded away. Her sisters knew that there was something wrong, but it wasn’t until years later that doctors settled on an Alzheimer’s diagnosis. How cruel is a disease that takes away a nun’s passion for the church? How powerful is a disease that can make a peace-loving sister bitter and angry? A major change in personality is a symptom of Alzheimer’s and other dementias. Sure, people do change as they age, but significant changes signal a problem.

I once spoke to a local family that was humiliated to find out that their father, a man in his 60’s who earned a six-figure salary, stole some items totaling about $15 from SuperTarget. A spiral notebook. Some wet cat food. A couple of packages of paper plates. His family was especially confused at his attempt to swipe some nail polish remover. When apprehended, he didn’t seem to think it was a big deal. In conversations with his family, he kept saying, “I returned the stuff. Why can’t you guys get over it?”

His wife and children were horrified when he casually mentioned that he had stolen from Hy-Vee (if you’re not an Iowan, this is a grocery store), Casey’s (if you’re not an Iowan, this is a gas station), and Home Depot in the past. He had even stolen from some friends when the family went to their house for Thanksgiving.

“My wealthy and church-going father,” one of his sons told me, “was actually a very accomplished thief.”

His judgement continued to deteriorate over the next couple of years, but he refused to visit a doctor. Finally, he ended up in the emergency room after locking himself out the house and trying to dive through a window to enter. This lead to a diagnosis of frontotemporal dementia. His family was shocked to learn that stealing can signal dementia.

At a conference this summer, I chatted with a woman whose husband has been diagnosed with chronic traumatic encephalopathy (CTE—which you may recognize as the type of dementia common in former NFL players). Her husband, who played college and semi-pro football, was thrilled to become a grandpa for the first time about ten years ago. However, his joy was short-lived.

He soon started getting so annoyed with his grandchildren that he regularly threatened to “whip them” for doing what his wife called “normal kid things” like singing silly songs and jumping around the house. At one point, he even said he’d kill them if they didn’t shut up. His wife knew something was really wrong when he got so frustrated that he went for a walk while babysitting, leaving his 4- and 5-year-old grandsons to fend for themselves. When the CTE diagnosis came, it was a relief. His wife liked the idea of her husband having CTE better than the idea of her husband hating his own grandkids.

Difficulty remembering recent events is often, but not always, an early symptom of dementia. When people around us become forgetful, we think dementia. We don’t think dementia when we see lapses in judgement and personality changes.

But let me end with a (somewhat) happier story…

A woman I met at one of my presentations married a computer engineer. She laughed when she told me that in the first 40 years of their marriage he said “I love you” once a year. The words would always come on their anniversary right after dinner. The statement would come out of his mouth in such an awkward way that she almost felt sorry for the guy.

She explained that she never doubted his love but rather appreciated that he would show it by changing her oil, taking care of the yard, and driving her to appointments. She said his lack of verbal affection didn’t bother her and that she knew it was just part of the agreement when they married. They had, as she put it, a solid marriage.

Imagine her surprise when, at the age of 70, he started saying “I love you” more often. Not only did he say it frequently, he said it publicly—in the grocery store and in line at the post office. She liked it, of course, but it made her uneasy. And sometimes the timing seemed downright inappropriate—like when they were sitting at the bank listening to a loan officer explain interest rates and he interrupted the guy to say “I love you” to his wife. He also started telling their kids that he loved them and that he was proud of them. The kids never doubted his sincerity, but they asked their mom why their dad was acting so weird.  When she told her friends she was concerned, they told her she was crazy.

One day they were working in the yard when she saw her husband and the neighbor woman conversing at the fence. He leaned over the fence to give her a hug. It was so incredibly out of character that his wife almost vomited.

“He doesn’t really hug family or friends, but he’s hugging this neighbor woman that he’s never particularly liked? Something was very wrong,” she told me.

But how do you convince someone to go to the doctor citing “too affectionate” as the primary symptom? It was a year or so later that he began to get in fender benders, and he finally ended up at the doctor to discuss lapses in judgement and confusion. They diagnosed him with Alzheimer’s, although his wife suspects he actually has frontotemporal dementia.

He’s in a nursing home now. She visits every single day, and every single day he tells her that he loves her at least twenty times. He also tells the staff, other residents, other residents’ families, and random visitors. The state surveyors visited the nursing home recently, and he even confessed his love to one of them.

His wife told me that she’s sad he has dementia, but grateful for the way the disease has manifested in her husband. She sees other residents that are aggressive, anxious, and angry. He’s loving.

“He spent most of his life being hesitant to say I love you,” she told me. “He’s making up for lost time, I guess.”

Then she shrugged and told me she’d rather have her non-expressive computer engineer who said “I love you” once a year.

Next she brilliantly sums up dementia by saying this:

“But dementia does as it pleases. I gotta be thankful for small gifts.”

6 thoughts on “It’s About More Than Memory in Dementialand

  1. Elaine, I’m glad you’re back. I particularly love the last story about the man who was making up for lost time with his “I love you’s.”

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  2. Hi Elaine. So glad to see you are back! Thanks for writing about something that is so important in understanding dementia. The stereotype of a befuddled, confused, pleasant person just isn’t the reality most of the time.

    Years before diagnosis I saw the personality changes with my husband. Ordinarily a soft-spoken, polite, kind and loving husband turned into someone I didn’t recognize. He was angry, anxious, depressed, moody, and hostile at times.The changes scared me. His lack of insight to these changes made it all the harder to get any kind of help for him.

    Thankfully he is under the care of a great gerontologist, and she has prescribed medication to help him with his anxiety and also with the psychotic components of his dementia.

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  3. I am new to this blog. My husband is diagnosed with dementia. Reading back postings has answered lots of my questions. Thank you.

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