HELP LINE: If behavior changes happen, always call the doctor

THE FACT IS that it’s pretty easy for me to sit in front of a keyboard and pontificate on the vagaries of this or that program, service, resource, diagnosis, state of affairs or my general (albeit, evolving) view of the human condition.

But every now and then, one of you cares enough to jump in with a report from the real world.

For instance:

“Dear Matt [sic],

“I am writing out of great concern for elderly who may get urinary tract infections. UTIs in the elderly usually cause unusual behaviors, including hallucinations and delusions, not the symptoms exhibited by younger people (pain and itching). Sadly, we found out the hard way.

“I have never seen anything written to warn elderly and their families and caregivers of this very serious and terrifying issue. Doctors, nurses and pharmacists know this is a common problem, but for some reason there has been very little information provided to us common folk about this. Therefore, I think it is crucial the word gets out quickly and often.

“I just returned from an anything but relaxing vacation with my husband, my sister and my 101-year-old mother.

“We took my mom down to the beach in North Carolina and on the way down when we stopped to have lunch, she started seeing children around us. We thought it was interesting and she said they were friendly, so we didn’t worry about it, given that she has some dementia.

“But later that night, she began to have serious delusions in addition to hallucinations. She was terrified, as were we. They continued the next day and she became manic and continued to talk with the imaginary (to us) people and about the scary events. She would not stop and was totally engulfed by the imaginary events.

“In desperation, I called a friend whose mother had had Lewy body eementia and concomitant hallucinations, thinking that might be the problem.

“She said that LBD does not come on quickly and that she thought my mom might have a UTI. I was flabbergasted, but we took our mother to the emergency room.

“We were stunned that they confirmed that she had a UTI. They started her on antibiotics. But, unfortunately, we dealt with quite a few more very stressful days and nights of her hallucinating and having delusions before things started to settle down.

“I want to make people aware of this problem so that others do not have to go through what we did. I am so grateful to have had a friend who could help us. Not everyone will be as lucky. We talked with our mother’s caregivers and they were unaware of the issue also. Unfortunately, I feel that people think these unusual behaviors can just be attributed to dementia in the elderly. My sister (who lives with my mom) said that mom had started exhibiting unusual symptoms the week before my husband and I arrived, but that she had just thought it was part of mom’s dementia.

“I am now on a campaign to change this and hope that your article will be one of the important platforms to get the word out.

“Thank you for your help.

“Sincerely, Sheila Kee”

No, I don’t care that Sheila called me “Matt,” given the fact that I’ve been called much worse, but I do care that she cared enough to take the time to write and was willing to allow me to use her name.

Sheila is right: Urinary tract infections (“UTIs”) are notorious in my world for causing exactly the kind of horrible symptoms that Sheila describes.

And it’s made all the worse when we see them in a person who has any degree of Alzheimer’s/dementia, because they can be so easily “written off” to the disease. Again, exactly what Sheila describes.

The other side of that coin, which I’ve also seen in way too many instances, is that a perfectly normal elder (“normal” here means non-dementia) starts acting like they are demented, or what we imagine dementia to look like, only to discover that it’s a UTI.

When the UTI is resolved, boom — back to normal.

Now, we sure as heck don’t want me diagnosing anybody for anything — and, I suspect, that applies to most of you — but here’s what we do need to do: When someone’s behavior suddenly changes dramatically, whether there is dementia present or not, there is a reason for those changes.

So, unless there is some other obvious answer, my first suggestion is always, “Call the doctor.”

Then, go from there.

Thank you, Sheila, for taking the time, for having the courage and for caring.


Mark Harvey is director of Clallam/Jefferson Senior Information & Assistance, which operates through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elders partnership. He can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by emailing [email protected].

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