Good question. Most people do not go directly to dementia. You go almost anywhere else looking for what’s going on, often with good reason, but it’s hard to pinpoint that “aha” moment when you start testing.
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 |
| 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 |
| 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? |
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…
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].