When Did We See Signs Connie Might Be Dealing With More Than Anxiety? It’s Hard to Say

Truth is, we were not looking for signs of dementia. We had gone through a major move, in the middle of Covid, and so we thought Connie was just dealing with the stress of it all….

Third 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…

“WHEN DID IT START?”

That’s one of the first questions I get when someone learns Connie, my wife, has dementia.

Sometimes it’s just curiosity. Sometimes, I sense, it’s because the person is wondering about someone close to them. And, sometimes, I sense, they are wondering about themselves.

It’s an understandable question and usually I sense their disappointment when my first answer is “I don’t know.”

It’s a question I still seek an answer to. Hidden in it is really two questions. “Do you mean when I really knew it was dementia, or do you mean when did I quit denying it was dementia?” My children, even Connie, probably felt the duality of the question.

I’ve mentioned in earlier posts that while we always have known dementia existed, it never was something we planned on experiencing. No family history, not that many people we knew who had it or even had it in their families. That last one, I suspect, was not a reality but rather more because a lot of people dealing with dementia in a loved one didn’t talk about it. That, of course, is changing.

So, for us, when did it start. Again, I don’t know. That’s because the signs of dementia also are signs of other things. In the boxes accompanying this post I list the signs of what Connie has – front/temporal degeneration (FTD), Alzheimer’s and depression. Look at them and you will see some mixing of symptoms. Add to that the general category of “that’s just age.”

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

In mild Alzheimer’s, a person may seem healthy but has more and more trouble making sense of the world around them. The realization that something is wrong often comes gradually to the person and their family. Problems can include:

• Memory loss that disrupts daily life
• Poor judgment, leading to bad decisions
• Loss of spontaneity and sense of initiative
• Losing track of dates or knowing current location
• Taking longer to complete normal daily tasks
• Repeating questions or forgetting recently learned information
• Challenges in planning or solving problems
• Wandering and getting lost
• Losing things or misplacing them in odd places
• Difficulty completing tasks such as bathing
• Mood and personality changes
• Increased anxiety and/or aggression

With Connie, we all saw things going back two or three years, maybe further. At first I know we all just laughed and said it was age. I was forgetting where I put car keys. Sometimes I’d reach for a name out of the past and couldn’t find it. Connie was doing the same. We would joke friends about it. Back in Texas we had a couple of friends who were going into dementia and we certainly were not like them.

I won’t to the entire answer to “when did you know?” in this post because first, I need to give you some background. In 2020 we began thinking about leaving Texas. There were a lot of reasons, including a radically changing political climate where a couple of Quakers were finding it a much more tense place to live. But that wasn’t the driver. We knew at some point we’d have to decide on down-sizing. 

At first, we thought we’d go back to my hometown, but it’s changed and we wouldn’t know many people. At some point our son suggested we move to West Chester, PA where he and his family live. After all, it’s a Quaker stronghold, a neat historic small town in a beautiful county with lots to do, close to Philadelphia, closer by air to our daughter and family in Europe and of course, closer to him if we needed help.

We went to spend Thanksgiving with him and his family in 2020. We had decided that buying a home in a pricey market was not the best strategy. When we got to West Chester our son had scoped out a couple of apartment complexes in downtown. We toured them and really liked one of them. It was downtown, we could walk a lot of places, get rid of one car – almost European living! We made the decision right then and there to move as soon as possible. 

When we got back to Texas we finalized our decision, but then went to spent three weeks over Christmas with our daughter and her family, plus our two oldest grandsons, in Lusaka, Zambia, where she lived at the time. It was our second trip to Zambia and it was wonderful.

When we got back we began downsizing. Over January and February I got the attic cleared out. We got on the wait list for the apartment in West Chester. We listed our house in February and it sold before it was even advertised. The movers came and got what we needed for West Chester. We hired an estate sale company to get rid of the rest. They held two days of an open-house sale. What they didn’t sell they kept or took to the dump. They sent us a check.

By the second week in March we were in West Chester, staying with our son and getting ready to move into our apartment. Two weeks later we were all moved into our new home.

So, we got rid of a house, 16 years of living in it and moved, three months from decision to relocation and all in the middle of Covid. There was a lot of stress even though we felt good about what we were doing.

Did I notice anything going on with Connie? No. We were both busy. Did I notice anything when we first moved into our apartment in March 2021? No. But, keep in mind, I was looking for it. But, over time…

Next Time – Noticing changes

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].