Is it getting worse?

How do I know if things are getting worse?

My mom’s dementia seems to have gotten noticeably worse over the past few days. We’ve had street repair work going on nearby, with heavy machinery and loud noise, and I think it might have affected her.

A few days ago, while the workers were out with their equipment, two of her sons came to take her out for a few hours to a place about two hours away, where there were a lot of people around. That day, before they arrived, Mom was already acting a little confused. We waited downstairs for about 45 minutes in the midst of all the noise and vibration from the machines.

When they brought her back later, I noticed a big change — her dementia, aphasia, memory, and general cognitive function all seemed to decline further. I had trouble understanding her speech, and she repeated herself even more than usual. I thought it might pass and she’d return to her “new normal,” but she hasn’t.

I’m not sure if the change was triggered by the dementia alone, the pacemaker being near heavy equipment, or a combination of both.

Tonight, about half an hour ago, she went into the bathroom by herself and stayed there longer than usual. After about 15 minutes, I checked on her and found her sitting on the toilet, trying to take off her shirt while her pants were still pulled up.

When I asked if she still needed to use the bathroom, she said yes — that’s what she was trying to do.

She became irritated and told me she’d try my way tomorrow, called me a pest, and said I was getting on her nerves. When I left briefly to get my phone to document her behavior, I returned to find her standing up, reaching into her pants, and wiping with toilet paper — though she had never actually urinated or pulled her pants down.

I checked afterward, and she was completely dry. I’m worried that since she didn’t go, she might wet the bed later. She sleeps in an adjustable bed with a waterproof mattress protector, but I worry about the risk of electrical damage or malfunction if it gets wet.

She’s 93 and likely in the late stages of dementia. She’s still somewhat independent but has poor balance and stumbles frequently. She refuses to use mobility aids like a walker or rollator indoors, using only a cane for doctor visits. Because of this, I escort her to the bathroom, as she often bumps into walls and has trouble standing upright.

Recently, she’s also begun refusing to sit up fully in bed during meals or meditation, preferring to stay reclined with two pillows behind her head. She says it’s more comfortable that way and that once she’s settled, it’s too hard to readjust. I worry about the risk of choking or aspiration pneumonia when she eats in this position.

Part of why I stayed with her so long in the bathroom was to prevent an accident. She’s extremely sensitive to noise now and dislikes the sounds of cleaning machines, vacuums, or even opening and closing doors. She also can’t tolerate cleaning product scents, even mild or unscented ones. She’s lost a lot of weight over the past three years — from 160 pounds to 121 — and is often cold. Because of this, she resists changing clothes or bathing after accidents, since she hates being cold.

When I reminded her she’d need to bathe and change if she had an accident, she said that was fine, she’d just do that.

Mom also has epilepsy and experiences “talking seizures,” where she rambles incoherently and repeats certain Bible verses over and over as the seizure progresses. While I was trying to reason with her in the bathroom, she started reciting her usual passage repeatedly, so I backed off and left the room — and the episode stopped shortly afterward.

I can’t tell whether tonight’s behavior means her dementia is worsening or if she was just disoriented from waking up, as she often is at night.

I feel awful. I lose my patience sometimes — I raise my voice, get frustrated, and don’t always know how to talk to her. When she has brief moments of clarity and speaks rationally,
I talk to her normally again, and then when her confusion returns, it’s hard to switch back to the right way of communicating.

I feel sad, stressed, and angry — not at her, but at the disease. I just hope she somehow knows that. I worry she might think I’m angry with her, when really, I’m just overwhelmed and heartbroken.