The signs of dementia are similar to the signs of a lot of conditions but sooner or later, it starts to look like what it is.
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 or psychiatric 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.
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.
And, maybe most important – do not be afraid to face up to dementia. If you are wrong and it’s depression or just aging, so be it.
| Symptoms of Depression | Symptoms of Front Temporal Degeneration | Symptoms of Mild Alzheimer’s Disease |
| Feelings of sadness, tearfulness, emptiness or hopelessness | Increasingly inappropriate social behavior | Having hesitant speech |
| Angry outbursts, frustration over small matters | Loss of empathy, other interpersonal skills | Losing track of dates |
| Loss of interest or pleasure in normal activities | Lack of interest, apathy | Loss of spontaneity, initiative |
| Sleep disturbances | Lack of judgment | Poor judgment |
| Tiredness, lack of energy | Compulsive behaviors | Taking longer to complete normal tasks |
| Reduce appetite, weight loss or the opposite | Changes in eating habits | Repeating questions, forgetting recently learned information |
| Anxiety, agitation, restlessness | Trouble naming things. | Trouble handling money, paying bills |
| Slowed thinking, speaking, body movements | Increasing trouble using and understanding written and spoken language. | Challenges in planning, problem-solving |
| Trouble thinking, concentrating, making decisions, remembering things | No longer knowing word meanings, Having hesitant speech | Wandering, getting lost |
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. 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].