Recounting events that didn't happen

atl86

My mom was diagnosed with mild dementia a little over a year ago. Up until this point the main issue is her not remembering appointments, paying bills, eating meals, etc. She has also forgotten how to use the computer, find programs on the TV, do her taxes, etc. Yesterday my mom told me that she had a long phone conversation with her grandson last week. She recounted some of what he told her and I was having a hard time believing any of it. I didn't correct her, but I checked with the grandson and he told me he hadn't talked on the phone with her in over a month and hadn't told her any of the stuff she told me. Is this a new symptom of the dementia or something else I need to be concerned about?

Marta

Yes. It is called confabulation and is common with the dementias. You can no longer take her at her word.

Have you read The 36 Hour Day, and/or Understanding the Dementia Experience? Both are highly recommended for learning about the behaviors of PWD and how to deal with them.

harshedbuzz

@atl86

Yes and yes.

It is likely a conflated memory/confabulation. Often these do have some germ of truth, but the PWD's memory is like Swiss cheese around the details, so they backfill with a who-what-where-when in some manner that makes sense to them in the moment. This means she is not an accurate reporter going forward and you will need to verify important information personally and go along with the unimportant stuff.

That said, there are many scams targeting the elderly using the phone in which a person impersonates a "grandson" in a bid to get the victim to wire money, gift cards or give a credit card number over the phone. Typically, the "grandson" says he's been unfairly arrested and needs money for a lawyer or bail and asks the victim not to alert and upset his parents. AI can clone voices, so this scam is becoming harder to suss out in the moment.

Her days of living alone may be ending.

HB

MN Chickadee

Yep, that is common with dementia. My mother made up all kinds of weird stuff. We'd pass a random building and she would say she lived in it as a kid. Made zero sense. You learn to go with the flow. Correcting her won't help, just agree and move on. Protect her from scams and people who won't be understanding. Anyone who doesn't understand dementia and will take things to heart won't be helpful.

atl86

Thanks for confirming what I suspected. I have put in some barriers to her answering random phone calls and texts, which I hope will reduce the possibility of her being scammed. I hear you about her continuing to live alone, but she is absolutely refusing to move. And, I'm trying to hold off as long as possible before moving her to assisted living or memory care because of the expense. I plan to bring in some part time help as a first step.

SDianeL

As others have said, yes, it's confabulation. My husband told my daughter that I gave my 89 year old step-dad $9000 for his birthday! Please have your Mom evaluated to see if she is able to stay by herself. My DH was diagnosed 2 years ago and one year ago was evaluated by a VA nurse. They asked him what he would do if a fire broke out in our apartment and he thought for a long time and then said "I would try to put out the fire" -- The nurse talked to him a few more minutes and came back to that question and asked him what else he would do. He said "I don't know" -- It shocked me. He didn't know to get out of the apartment or to call 911. The nurse said under no circumstances should he be left alone. We do have an alert button now to call for help in case something happens to me but he can't use it and he can no longer use the cell phone.

harshedbuzz

https://alzconnected.org/discussion/comment/183230#Comment_183230

It's great that you have put some barriers in place for her phone. Are you using Tele-Calm or some other robust protection? This is an area where you want to be certain it's an effective deterrent and not a hope-for-the-best situation. Once money is gone in these scams, it's gone for good and will impact your choices for hiring aides and choosing a MCF.

And you'll want to lock down her mail as well. Elders are often targeted for real and shady charities as well as sketchy sweepstakes using the USPS-- if you have her POA, and you need it now-- you might want to divert her accounts to your address or a PO box. TV can be a problem. My mom got roped into a Crepe Erase subscription which I only found out about when I was putting away some towels and found a dozen boxes of the stuff. I mean it's not a bad product, but if Crepe Erase worked she'd be gone by now. Even door-to-door solicitors can be a problem; I know a woman whose mom agreed to have her house power washed for $2000 (a job for which neighbors pay $250).

You'll want to freeze her credit with the 3 major bureaus so no one can open credit using her SSN if she does somehow get scammed. If she has a computer or smartphone, you may want to restrict those as well. My dad lost $360K day-trading with my mom as his caregiver in the home.

I can appreciate wanting to conserve assets given that one never knows how long the disease progression will be and it's so hard to plan around the "what ifs". Bring in day help is useful when there's a live-in caregiver/spouse but when a PWD lives alone, it's not going to buy you much time. For many, their LO needs the most oversight in the late evenings and overnights which can be hard to fill. Agency caregivers are expensive-- around $35-40/hour where I live, so most folks can't afford to hire as many hours as their LO really needs.

@SDianeL Back when mom was sure dad was still OK at home for a couple hours during the day, she had her HVAC system replaced. She had an appointment and asked me to stay with dad to keep him from interfering with the install (he had some very interesting ideas informed by his abysmal spatial reasoning). The techs called down from the utility closet and told us they'd be soldering and that it would trigger the smoke detector. About a minute later, the smoke detectors went off. Dad sat there for about 30 seconds and asked me what the awful noise was. I said "smoke detectors". He sat for another 20 seconds, announced that he was going to tell my mother and toddled off down the hall away from the 3 egress points in the house. At no point did he attempt to call 911 (he dropped his phone when he stood up) or ask me to. In a real fire, he'd have died. Mom never left him home alone again.

HB

psg712

Yes, the mail can be a real problem. When I was first coming to grips with the fact that my mom likely had actual dementia and not normal aging challenges, I got into her bank accounts and found that she had written 80 checks in one month! Some were legit bills but most were to charities I never heard of, political action groups, etc. Fortunately they were all small contributions but they sure added up.

When I asked, she said they were her bills and she had to pay them. She had saved hundreds of these solicitations in piles around the house. Meanwhile, I found a cutoff notice from the power company because she hadn't paid them. I sat down with a bank manager to work through some issues, and the manager told me how fortunate I am that mom had named me as POA years ago, when she was still competent.

I ended up forwarding her mail to my house, where (3 years later) I still receive 8 -10 solicitations in her name every day. She was VERY angry when an uninformed postal worker asked if she was moving, because he saw the forwarding notice! One of the sad advantages of her dementia progression is that this stuff no longer matters to her. Now if I can only get her to use the toothpaste rather than a lipstick on her brush... :(

psg712

@harshedbuzz we had some close calls with fire too when my mom was still in her home. The most notable was when a friend stopped by and found her frying bacon on a broiler pan top (no tray underneath) over open gas flame on the stove top. The grease was dripping into the flame and the kitchen was filled with smoke. The friend said, it's really smoky in here! To which mom replied, " he's in the living room." Her cat's name is Smokey. I think that was the point at which I started planning her move out of the house.

atl86

It's sort of reassuring to know that my experience with my Mom is not unique. Thanks for all the warnings and advice. Last year I was having similar issues with Mom buying lots of miracle products, writing checks every month for dubious charities and PACs, accidentally signing up for recurring charges for supplements, etc. I put most of the recommended measures in place. That behavior has stopped because of my actions and because of Mom's progressive decline in function. I've changed most of her bills from physical mail to online only and created a new email address that she doesn't know about for that purpose. I haven't changed her physical address with the postal service yet, but that probably needs to happen soon. I know that the USPS sends a letter to the old address with the change info and she will blow a gasket when she gets that, so my procrastination is about wanting to avoid her wrath. I told her yesterday that she and I would be meeting with the owner of a home care agency this morning to discuss having someone come in to help with laundry, shopping, meal prep, med reminders, etc. She absolutely refused and said she wouldn't let us in the door. I know she probably needs to go to assisted living sooner rather than later, but I was trying to honor her wish to stay where she is (as long as possible). The fact is I can't keep up with caring for her on top of all my other responsibilities. She is running me ragged and I am beyond stressed out. Something has to change.

LicketyGlitz

I sort of enjoyed this stage of my mom's dementia. She became non-verbal fairly early, so the days of her telling me wild tales, and me asking for more details in awe of her new found creativity were sorely missed later on.