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
if there are any new meds that she’s prescribed, or supplements, or anything she can reach in her room, those could also have an effect.
+1 vote for dr, or urgent care or maybe er; but she needs to be seen by a medical professional about these new symptoms.
I'm sure the noisy work is bothering her as well, but she may not be able to recognize what is troubling her, or how to express it.
I'm worried about you helping her walk to the bathroom. It is dangerous for both of you - what if she loses her balance, and you both go down? Will she use a wheelchair if you get one? You would probably have to push her.
You can also try a commode chair closer to the bed, so she doesn't have to go far. Eventually, you will probably need incontinence products, as she will get too weak to get out of bed at all. Adult briefs, and please, buy some absorbent bed pads. That will ease your worry about urine running off the mattress.
If she's already having accidents, try using pull-up disposable underwear, or briefs (adult diapers) now. It may be a relief to her she won't have to be cold, changing her clothes and washing up. You can buy disposable wipes and a wipe warmer. Also, you can help her with bathing, whether in the shower, or a sponge-bath in bed, keeping most of her body covered with a large towel, or some soft, warm covering, to keep her more comfortable. Keep her space well-heated when changing or bathing.
It is so common for people with any form of dementia to have moments of lucidity. I experience this with my husband, 10 years after a massive stroke caused traumatic brain injury. He mostly communicates with hand gestures, or grunts single word commands for what he wants. Every once in a while, he will speak a full, clear sentence that just blows me away!
It is frustrating! We are so accustomed to using reason when communicating with others, and when they are confused, there simply is no reasoning. When you feel yourself losing patience or becoming overwhelmed, it is best to walk away. Take a break. One thing that helps me is to Google information about the condition I am dealing with and gaining a better understanding, which helps me to have more patience.
It could be anything from Nothing to a UTI to a mini stroke.
It is always best to get those ruled out.
Lots of people, unusual activity, noises can cause a decline.
Do not be afraid of electrocution in a motorized bed after bedwetting! It has a waterproof cover on it and besides, that's what the beds are made for! Sick, elderly and handicapped adults.
Most elders do not like loud noise, but having a dementia patient standing outside in the midst of work machine racket for 45 minutes would seriously rattle her! It can take time to recover from such a thing.
Her startle reflex is heightened if she jumps at the sound of a door closing. This is a symptom of anxiety and should be brought to her doctors attention and treated. An antidepressant should take that startle reflex back down to a manageable level. I've suffered from this on and off for years and it's a terrible thing to live with. At its worst and untreated, I'd have to use earplugs in the house.
When an elder with advanced dementia is taken out of her normal environment and exposed to stressful circumstances, she can definitely take a step down cognitively. Whether that step down is temporary or permanent only time will tell. These downward turns can happen swiftly or it may appear that way to you. Whenever my mother had a step down with her dementia, I'd notice something odd or new in her behavior, speech or posture. When she began leaning to the right in her wheelchair, I knew she'd had TIAs or a stroke. She was 94 at the time, however, and on hospice care so she was not tested at the hospital. What could be done for her anyway? Nothing. Dementia continues to progress in a downward fashion until death, one way or another, unfortunately.
Wishing you the best of luck with a difficult situation.
However, certain things you have said about rapidity of changes now, the extreme chaos and noise, and the symptoms of slurring make me believe that you could be dealing with more here than dementia. There could be signs here of a stroke. Signs of UTI.
You have written a lot here but what isn't clear to me is where mom lives? Does mom live with you, or do you live with her, or are other family members involved.
What is clear in all this now is that mom cannot be left alone. EVER.
Mom needs a full physical workup ASAP.
You may be looking at placement at the least, Hospice at the worst. And it is time now to stress end of life care, with safety foremost.
Sure do wish you good luck. Mom needs to see her doctor and you need to read him/her what you have written here. I hope you'll update us.
Rather than guessing I would take her in and have her checked. Either Urgent Care of the ER.
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.