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How do I know if things are 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.
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playdough12, I'm so glad you are with your mom. You have strong sensitivity to her needs and are guided by them. It is overwhelming and heartbreaking and even while you wonder if it is getting worse, you can know that it will. It is important not to raise your voice or get angry not because she'll remember, she probably won't, but you will. When she's gone you'll forget all the million wonderful little considerations you had for her and you'll regret forever those tiny, impatient moments.
The confusion about clothing are common, though watch for UTIs if she thinks she needs the restroom and doesn't. Railing on walls can be really helpful for balance, as well as lighting to the bathroom for at night. She might like noise cancelling ear muffs, but she might hate them.
Bless you both.
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6 ReactionsIf your mom had an advance directive, it would be helpful to know what it says. If she wants to be treated for treatable diagnosis with her (I presume) late stage dementia, you should consult with her doctor, as she seems to have an acute mental status change over the past few days. UTIs and other such diagnoses are easy to treat and often associated with acute worsening of dementia symptoms. If you decided with her doctor to delve deeper, a CT scan (which may require sedation which can worsen symptoms) might find a stroke or other new condition. I mention this because of the change in speech. This would, I hope, involve a thorough discussion with her doctor regarding risks vs benefits.
I hope this is helpful. I’m sorry you’re having a difficult time
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2 Reactions@gently , my impression would be taking someone with her condition on a trip 2 hours away would have a substantial impact. Transition out of their normal environment can be disorienting. My dad and cousin didn’t do well after returning from even short trips. You might check for UTI as well. My dad had a recurring illusion that he was urinating when he wasn’t. You couldn’t convince him otherwise. The problem was that he would sit on the toilet so long his legs would go numb and he’d collapse to the floor. Then we needed to call 911 to get him off the floor.
It sounds like you might be fatigued. Have you considered hospice care? The decline in mental status and substantial weight loss might qualify her. They can offer some additional services and also free respite care so caregivers can get time off to rest and recharge.
I would encourage you to get extra help lined up and ready to step in because once my dad began to struggle with incontinence we needed help fast. They got us a hospital bed and incontinence supplies.
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6 ReactionsGreetings: I want to echo what others have mentioned about UTIs.
My 90 year old mother with Alzheimers used to get UTIs all the time. It caused her speech to be incomprehensible, as if she were speaking in tongues. She no longer had the capacity to bathroom by herself and it caused issues. You may want to get your Mom checked. Good luck. 🫂
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2 ReactionsA sudden change in mental capacity is strongly suggestive of a secondary cause, such as infection, but other medical conditions (mini stroke, heart attack, or other) could cause it. Or being taken from familiar surroundings, or a new medication (especially OTC meds).
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2 ReactionsI am so sorry you are having such a stressful time with your mother. In my experience it sometimes feels like you are being sucked dry. As dementia progresses, balance and the ability to walk declines. The suggestion to put rails on the walls and make sure that her path is well lighted is an excellent suggestion of what you can do. My husband is in the stage where his balance is poor and has had multiple falls resulting in broken vertebrae, ribs and a brain hemorrhage. He, too, refuses to use the walker at times which is right at his bedside. I put a strap with large jingle bells on it so that when he goes to move it out of the way, I can hear that he is on the move. I also have a baby monitor so I can see and hear him when I am in another room. Your Mom may prefer to be in bed because she has degenerative spinal disease that causes pain when sitting up (common at her age). My husband deals with this. If you need to feed her in bed, then having her on her side would lessen the risk of aspiration. With age and dementia the signals to the brain for swallowing effectively are damaged. I agree with the others that it is highly possible that she has a urinary tract infection which can cause changes in behavior and can become serious if not treated. There are often no symptoms other than a frequent need to urinate and behavior changes, delirium can result from a UTI. I would recommend speaking with her doctor about your concerns and then taking her to have her urine checked. If they have trouble getting a sample, ask for a plastic "pan" that goes over the toilet and under the seat and a sterile specimen cup. When she urinates it will be collected in there and then you can pour the urine in the cup and take it to the lab/doctor's office. This is a relatively simple thing to do to rule out or confirm an infection which can easily be treated. I am sure that you are doing the best you can do on any given day. This is a really challenging and sad road to be on. You are not alone. We are here for you. God bless you and give you courage and strength.
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5 ReactionsAlso, I would avoid taking her out of her familiar environment unnecessarily as I think it is too stressful for her to cope in unfamiliar surroundings. A common symptom of dementia is the desire to "go home" where things are the same and therefore reassuring.
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6 Reactions@celia16
My husband sits on the toilet for long periods of time —sometimes 45 minutes —and I know he's not doing anything. But can't tell me why. Your dad thought he was still urinating even though he wasn't? Could he tell you that he thought he was still urinating?
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1 Reaction@ocdogmom my husband has had 2 hospital visits with symptoms that indicate uti but both were negative. The first showed E. coli in blood that required 12 days of I V antibiotics. 20 days later same symptoms, frequent urination and weak and confused, negative ua once again. Possible pneumonia? No symptoms. So confusing.
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2 ReactionsAn infection in the blood- septicemia- is serious especially in someone who has other health issues and is older. It is good that it was caught and treated. I would think that a chest x-ray would rule out pneumonia. Pneumonia is common in older people especially those with dementia because again the sensory input from the body to the brain that controls the swallowing muscles is damaged. Aspiration pneumonia is common. The feeling of having to urinate frequently could be due the failure of the part of his brain that tells him when he has to go. With dementia the whole brain is failing, not just memory. He may not be getting the correct input from his body to his brain. I you haven't already done so, I would recommend learning as much as you can about how dementia affects the entire brain. I found lots of information on the Alzheimer's Association website and Teepa Snow's website. God bless you and your loved one.
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