Mom used to be a “talker.” Not any more.

Mom’s had dementia for going on three years. She was always a conversationalist. We’d have long talks at night, and she could discuss ANYTHING until we were both too tired to keep going. Even after her diagnosis, she could talk, though less and less of it made sense. I know she has dementia, but it still felt like she was “there” in a way.

Now when I visit, she just stares out the window, like she’s a million miles away. I know it’s just the disease, but it feels like a big BAD change. What should I expect and how do I deal with it?

When Mom stops talking, she’s saying something

Depending on your mom’s age and the type of dementia, life expectancy after a diagnosis can be anywhere from 5-10 years. It’s hard to tell if that’s because people are typically diagnosed in their late 70s or 80s, or if it’s the disease taking its toll. Often the only way a caregiver can tell is by gauging Mom’s behavior against the old “normal.” But of course nothing about dementia is normal, so we wonder if what’s happening with Mom is typical, unique to Mom, or a sign of something worse.

Language is usually one of the last things to go. That doesn’t mean your mom’s going to die tomorrow, but you’re right: it’s not good news.

My own mother was well into her decline before she stopped talking. Her conversations had gotten simpler, more feelings than thoughts, but there was a certain charming whimsy about her when we’d go for walks and she’d talk to the rocks. She stopped talking about a week before she passed, and I knew then that enough was wrong that it was time to call relatives so they could say goodbye.

But it’s different for everyone. YOUR mom might live for quite a while before she takes another mental stumble.

Is there an obvious reason Mom’s not talking?

There may be several reasons Mom’s no longer talking, and not all of them are dire.

• Doctors at the dementia care facility have upped her meds without telling you, and now Mom’s “knocked out” when you visit. Check the paperwork you signed when Mom was admitted. There was probably a clause in there saying you gave permission to the staff to change her meds as they saw fit. You don’t HAVE to sign that. For my mom, I didn’t want them “doping her up” just to keep her quiet, so I X’d out that section and wrote in my refusal. The doctors had to call me every time they wanted to change her meds, but at least I knew what was going on.

• Mom might not be able to hear you. Have her hearing aids been checked? Does she still have them or did she somehow lose them?

• She’s depressed, withdrawn, or disengaged. Mom may be able to talk, but feels like there’s nothing to be gained from it. This happens a lot in old people, not just ones with dementia. Set up an appointment with a geriatric psychiatrist to see if Mom’s depression is something that can be treated independent of her dementia. It’s actually quite common for folks in dementia homes to be on antidepressants. And that’s not necessarily a bad thing, since in a lot of cases it increases appetite, something that tends to fail as people get older.

• Mom may be frustrated at her inability to understand. Keep sentences simple, and go for statements, not questions. Instead of asking Mom if she wants ice cream, bring some to her and talk about how much you like it. If Mom wants to say it’s delicious and knows how, she’ll do so. Otherwise why remind her how much she’s forgotten?

• She’s fumbling for words. Both Mom’s understanding ANd her ability to find words may be failing. Be patient and let her try to come up with them on her own. Give her plenty of time to finish her thought, and only if it’s clear that she’s lost what she was trying to say should you offer to finish her thought for her.

• She’s had a mini-stroke. Especially with vascular dementia, mini-strokes can “shut out the lights” in different parts of the brain “one room at a time.” Depending on where the stroke occurred, she may lose language skills, memory, reasoning, or the ability to move about on her own. Talk with Mom’s doctor to see if there’s anything that can be prescribed that will lessen the symptoms. These might include ACE inhibitors, diuretics, statins, anticoagulants, aspirin, or blood pressure medications.

• She may have a UTI. Urinary tract infections can often worsen the delirium associated with dementia, and delirium may affect Mom’s ability to make what little sense she can. The solution MAY be as simple as antibiotics.

• She has Parkinson’s Disease. About 5 percent of patients with dementia also have Parkinson’s. The combination is sometimes called PD-D (Parkinson’s Disease with Dementia). This is ten times the incidence of Parkinson’s in the general population, so while the numbers are small, they’re also significant. People with Parkinson’s often experience tardive dyskinesia, or an inability to start and stop physical motion. There are medical tests that can determine if Mom’s got Parkinson’s, and they’re worth running if only to eliminate the possibility. Mom may have a lot to say but physically can’t start the conversation without some sort of cue. Strangely, music can sometimes provide the cue for folks with PD to start speaking or moving. Anyway, it doesn’t hurt to find some pleasant tunes and play them on your phone while you “talk” with Mom.

What if it isn’t any of those?

Once you’ve checked these out, it may be the case that Mom’s dementia has begun its inexorable descent. If so, it makes her remaining moments of lucid conversation all the more precious.

Keep in mind that whether or not Mom understands conversation, she may still be able to understand voice tone, feelings, and actions. Before YOU learned to talk, you were probably already an expert at expressing feelings, and this may now be the level at which you need to communicate with Mom.

Talk calmly to her, hug her, and show her you’re happy to be with her.

Sometimes, that’s all that matters.