Mom’s personality changed, and not in a good way.

Dear Grassflower: Mom used to be a private person. But after her dementia diagnosis, she took to loudly badmouthing other races or nationalities, talking about her bowel movements, or something else equally unwelcome. Now, she’s cussing at the dog, telling the great-grands they’re “ugly little trolls” (one cried), and more. I don’t know how to explain to little kids that Mom’s off the reservation, and it breaks my heart that she probably can’t be trusted around anyone. Right now she’s living with my husband and me, but that won’t last, and it’s going to be a s***show when we have to move her to a home. Please help.

People do change.

My own mom’s case was exactly the opposite of what you describe. She used to be angry, opinionated, and very certain about exactly what was wrong with the country. She wouldn’t let an opportunity go by to tell people what she really thought of the President. Then after her dementia diagnosis, something shut off in her brain. She was gentle and sweet as Spring rain, and I got to see a glimpse of the little girl she had once been and hear some of the crazy stories, however poorly remembered, about her youth.

What can I do about Mom’s outbursts?

First of all, let’s get this clear: Mom’s not mean or crazy; she’s ill and needs medical attention. If you have to tell the kids something, tell them that Mom’s not well and that you’re taking care of that, because it’s true and you are.

According to the Alzheimer’s Association, people with dementia commonly experience anger, irritation, agitation, anxiety, depression, distress, fidgeting and perseveration, sleep disturbances, emotional outbursts, and even full-on psychosis.

Medications

Clearly in your mom’s case, right now, she’s Hell on Wheels. You are right about having to keep little kids and unsuspecting strangers clear of her clearly off-the-rails behavior. The good news is that there are medications that can control Mom’s anger, rudeness, and lack of inhibition.

The medications Mom’s doctor (ideally a geriatric psychiatrist) might prescribe depend on the biochemistry underlying Mom’s behavior. Different drugs treat things like anxiety, depression, agitation, or psychosis. For instance, if Mom’s not sleeping regularly or at all, her doctor might prescribe Belsomra to improve the quality of her sleep; or if she’s agitated, (s)he may prescribe a medication like Rexulti or Ativavn to minimize agitation, or Seroquel, Haldol, or Risperdal or other antipsychotics for hallucinations. Her doctor might prescribe antidepressants—which can sometimes have a side benefit of helping restore her appetite if she’s not eating.

Environment

Also, different things in Mom’s environment can be changed to make the best of her situation. For instance, she may be less agitated when around food, or when her room’s dark and quiet. If you notice that Mom’s less likely to “go off” in certain situations or environments, try to keep her in her “happy” place as long as you can. The upside to making environmental changes is that Mom’s less medicated and more able to feel content about her surroundings.

Moving Mom

Two things I learned when it was clear my own mother could no longer live at home were:

• Don’t want too long to move Mom

• Make sure she’s “out of it” when you do

I almost waited too long to move Mama. A lot of dementia homes require patients to be able to walk in or wheel in on their own. My mom was too frail to operate a wheelchair and couldn’t balance on her feet. Fortunately, one of the aides from her first dementia home bent the rules a little and helped her walk in on her own and get her settled.

The second thing was that in order to manage the 10+ hour car ride to Mom’s new residence, I had to make sure she was calm enough to make it all the way without a crisis and not afraid or unaware of her surroundings. Fortunately she was already a bit confused about where she was (that started in her own home, by the way!), which made it a little easier to relocate her.

What if she doesn’t want to go?

Ah, this is where it gets dicey. If you’re already Mom’s guardian, technically it’s your decision, so all you have to do is get her to accept what’s going to happen anyway. If you’re NOT her guardian, then she’s probably in some kind of legal limbo where you’ve got medical paperwork in your hand that says she can’t make decisions for herself but no legal authority to act on her behalf. BEFORE you try to move Mom, make sure you show the dementia diagnosis to Mom’s attorney and get a court to appoint you or someone else as her legal guardian. Do that FIRST. If you don’t, it’s just going to make things more difficult to sort out if Mom tries to exit the facility.

But let’s talk about the likelier situation: you ARE Mom’s legal guardian and she just doesn’t want to leave the house. Here’s where you can “invent” reasons she can’t stay there:

• Tell her the house has a roach problem and has to be fumigated (it probably does), and she can’t be in the house when the pest control people are treating it. Tell Mom it’s going to be at least a week and that you’ve made alternative arrangements for that time.

• Tell her you’d like her to come and visit with you for a little while (which is true), but since you don’t have room in the house, you’ll be putting her up in a hotel, or a friend’s home, or a bed-and-breakfast or something else. It’s not hard to get the staff at the dementia home to play along and make Mom feel welcome.

• Tell Mom you’re going for a long drive together (which is true) and might have to stay in hotels along the way (i.e., the dementia home).

I know it feels awful and you’ve probably been told it’s a sin to bear false witness. But I am telling you now that if you lay the unvarnished truth at Mom’s feet, you are causing her pain and ultimately, being unkind and unsupportive. This is the ONE situation where the most responsible and helpful thing you can do for Mom is to tell as little truth as you have to and bend the rest into whatever shape it needs to be to fit the situation.

If it makes you feel better, DO call the pest control guy. You’ll probably need to do that before you sell the house to pay for Mom’s care.

And DO have a little “vacation” with Mom after she gets settled into the dementia home. It’ll make you both feel better.

But what do I tell the great-grandkids?

If they’re old enough (teens), it’s probably time to have the difficult conversation about what happens to some people when they get old. It doesn’t happen to everyone and they shouldn’t be afraid it’ll happen to them when THEY get old, but it does happen to some people, and it’s happened to Mom. Tell them that no matter what Great-Grandma says, no matter how crazy or mean it sounds, she’s not well. When they ask if and when she’s going to get better, say as calmly and quietly that it’s probably going to be a long, drawn-out process and that she’s probably not going to get better, so if they can bring themselves to see her for the wonderful woman she once was, try to remember that when they visit, and talk with them after the visit so they can get a chance to express their concerns and feelings about Mom. Acknowledge those feelings, and try to provide comfort with out lying to the kids. That said, you’ll have to be the judge of how much truth they can take before it’s too much. You don’t have to dump it on them all at once.

If the kids are younger than teenagers, it’s a toss-up between telling them a simplified version (e.g., “Mom’s sick”, leaving out the part about not getting better) and not telling them at all. It depends on how attached they are to Great-Grandma. You can also wait until Mom’s better medicated and stagger the great-grandkids’ visits with her, even by just a few minutes, so that Mom’s not overwhelmed. If the kids are loud and hyperactive (e.g., chasing each other around the dementia home squealing), it’s probably not appropriate to have them there for very long, or if possible, have them visit Mom outside on the porch, where they can have a little more room to just be kids. What you do is going to depend on Mom’s situation and the kids’ typical behavior. If they “get” the “be quiet in church” concept, tell them this is similar. If they’re uncontrollable, though, maybe it’s better to for them to see Mom on an outing, such as a family trip to a burger joint with an outdoor patio, where they can be kids, it’s still quiet enough for Mom to enjoy, Mom’s outbursts (if she’s still having any) won’t be heard by as many people, and the kids can see her.

It’s probably going to suck, but remember that everyone’s trying to do their best, and do your best to roll with the punches, let people be who they are, and forgive everyone as much as you can.