More On How We Came to Recognize We Were Dealing With Dementia

It’s important to know the early signs and insist your doctors listen to you when you ask questions. Your medical team will be very important.

Fourth in a Series: This is part of an ongoing series about our family’s experience with dementia. There is no order to it, just observations, reflections and, I hope, some guidance for others on this journey or who may someday begin it. It is not intended as any sort of medical, psychiatric or financial advice. Just one family’s experience…

IN MY LAST post I started to answer the question of when I, and family members, started to think Connie – wife and mother – might be dealing with some form of dementia. I recounted how we had a major downsizing and move from our home in Texas to an apartment in West Chester, PA in 2021, smack in the middle of COVID.

In this post, I’m going to go back and look at what we noticed, but did not notice for what it actually was. I’m going to try to give those of you who might be wondering about yourself or someone close to you.

The early signs of some form of Dementia Do they seem to have memory lapses that impact daily life? – everyone forgets things, particularly as they age. Are you noticing the person does not retain information, that they ask the same question more than once, begin taking notes, writing down information where before they did not? Do they seem to struggle trying to plan things or solving problems? – This could include keeping track of chores, working with numbers, taking more time to do routine activities. Have familiar tasks become challenging? – This could be as simple as filling out a shopping list, taking more and more time to do housecleaning, make a bed, tend to yard chores, etc. They may start asking for more help to do things they used to do on their own. Do they seem to get confused about time, places? – People started down the dementia path often begin to struggle with keeping schedules, remembering where something is in the house, maybe even where a local store is.  Do they struggle with visual images, spatial relationships? – Some people begin to get tentative about walking and moving. They may have trouble reading, or recalling what they just read or what they might have seen on television. They may begin to struggle with technology. Are they having trouble communicating? – Some forms of dementia first present as speech problems. They may struggle for a word, or replace a word with an image. For example, a “crib” may become a “baby holder.” They know what it is but they can’t express it. They may pause as they search for a word or leave sentences uncompleted. Handwriting may change, getting smaller. Some who once wrote with clarity might struggle to put a sentence on paper or type on the computer. Are they losing things? – Everyone loses things. But an early sign of dementia can be putting things in unusual places. A person may always have put the car keys on the kitchen counter, now he puts them in the bathroom. They may not be able to go through normal processes to retrace steps, to think about where they might have left things. Does their judgment seem to be questionable? – Maybe they are less capable of handling money, buying things they don’t need. Is their grooming changing?  Are they withdrawing from activities? – Is a person who used to socialize, volunteer, do other activities withdrawing from those activities? Do they seem unsure of themselves socially where they used to be confident? Are they spending more time alone, or in bed? Is their personality changing? – Is a confident person suddenly not confident. Is a quiet person become loud? Is a patient person becoming impatient, a polite person seeming rude?

When it comes to brain degeneration, which is what most forms of dementia involve, it can develop slowly and early symptoms are not always pronounced. That is what happened in our case.

Connie first developed what I considered to be “phobias.” We always had been travelers. Suddenly she did not want to travel. We had purchased a small camper for retirement but after our move to West Chester, we sold it. She firmly said she did not feel comfortable with me towing it.

For Christmas of 2022 we went to Prague, where our daughter and her family love. There was a lot of anxiety prior to the trip and while in transit. Once in Prague Connie did not want to leave our daughter’s house unless our daughter was with us. At one point I suggested that I could go do some things on my own, but she was adamantly against that. She was afraid something would happen to me, even though I had traveled the world solo on business without a hitch.

When we got back I noticed she was developing a fear of crowded places. My son, daughter and I talked and we were zeroing in on anxiety. My son suggested post-traumatic stress disorder. In 1974 in Xenia, Ohio my wife lay on top of our two young children while a tornado destroyed the house around her. We moved a lot in our lives, ending with our 2021 move to West Chester. Our son posited that maybe it was all adding up and creating intense anxiety. I didn’t disagree.

But, as we moved into summer of 2023, I became concerned it might be more than depression. Connie was seeing a therapist. I suggested to the therapist that we do cognitive tests and she said she did not think Connie needed that. In fairness, she saw Connie two hours a month; I saw her 24/7.

That summer she one day asked me if I could do the grocery shopping. She said she no longer wanted to drive. At the end of 2022 she had said she no longer wanted to do our taxes, something she had done our entire marriage. So, we engaged a CPA. In Fall of 2023 she said she didn’t feel up to even preparing data for the CPA.

Over the previous two years she had lost about 40 pounds. Some of that loss was good, but we moved further into 2023 she became almost gaunt. Back in Prague that previous Christmas our daughter had said “I feel like I’m watching my mother wither away.”

By Fall Connie had become a recluse. She was spending hours each day in bed. She stopped going to the YMCA. We stopped socializing. I was taking on more and more of the work of the household.

In the Fall we did see a psychiatrist and he put her on Lexapro for depression and anxiety. We did not notice any difference, certainly not improvement.

By Fall I had started to notice she was having trouble speaking. She would search for words, stop mid-sentence. I also began to notice some memory loss and was becoming concerned this was more than depression. As I mentioned in a previous post, there was no known history of dementia in her family so we still were not ready to make that leap.

We had changed our family doctor because the one we had gone to since we moved to West Chester seemed deaf to our concerns. Our new doctor wasn’t. She spent time with us, listened, was compassionate. She referred us to a neurologist and tests were done. They concerned him enough that he referred us to a neuropsychiatrist. She put Connie through a four-hour battery of tests.

THE DIAGNOSIS CAME back as front temporal degeneration with primary progressive aphasia. That is in the same family as what the actor Bruce Willis has and also talk-show host Wendy Williams. It was a shock, though in hindsight not a surprise.

Could we have caught it earlier? Maybe in time to push Connie into drug trials to see if progression could be slowed down? Yes, we could have, had we known what we were looking for. I suspect there was a point where we all started to think it might be dementia, but we continued to whistle past the graveyard, hoping it was something else. 

In the box accompanying this post I have posted things you can look for in a loved one that might lead to early detection. Keep in mind any one of these in isolation, or any one of them happening rarely, could be seen as just “old age.” It’s critical that you become observant and note what you are seeing and how often. If you begin to see them as cumulative, then it is time to seek cognitive and other testing from a neurologist and neuropsychiatrist.

The central question you have to keep coming back to is “what can it be?” That is an expansive question, not a closed one. Let everything get on the table, even dementia.

Rich Heiland, has been a reporter, editor, publisher/general manager at daily papers in Texas, Pennsylvania, Illinois, Ohio and New Hampshire. He was part of a Pulitzer Prize-winning team at the Xenia Daily (OH) Daily Gazette, a National Newspaper Association Columnist of the Year, and a recipient of the Molly Ivins First Amendment Award from the Walker County (TX) Democrat Club. He taught journalism at Western Illinois University and leadership and community development at Woodbury College in Vermont.  Since 1995 he has operated an international consulting, public speaking and training business specializing in customer service, general management, leadership and staff development with major corporations, organizations, and government. Semi-retired, he and his wife live in West Chester, PA. He can be reached at [email protected].