I was talking to a friend yesterday when we both went into one of those “I can’t remember” moments. Sadly, I don’t even remember what we didn’t remember. But she laughed and said she felt like “Aunt Clara.”
AUNT CLARA!! You know…that adorable, forgetful, bumbling aunt of Samantha’s on Bewitched. I laughed about that all day, then it hit me: Aunt Clara had dementia.
Think about it: she forgot her spells or used the wrong ones; she had trouble finding words; she lacked good social judgement; and she wasn’t always dressed appropriately. Oh, and sometimes pink elephants materialized.
Yep, sounds like dementia to me.
How do we exercise good dementia manners in the face of all these odd and challenging behaviors? Look at what Aunt Clara and Samantha teach us:
Aunt Clara was constantly forgetting her spells. Incantations she apparently knew at one time, but for the life of her, couldn’t recall anymore. Or couldn’t recall just right. So, she’d appear in the fireplace, or instead of transporting herself to Samanatha’s, she’d send a buffalo. That kind of thing. Happens to the best of us.
What did Samantha do? Not once do I remember her yelling at her aunt (Endora? That was a different matter entirely). She never humiliated her. Did she correct her? I think she lovingly attempted to steer her in the right direction. She helped correct her mistakes, but without degrading her or talking to her like a child.
She respected her, and it showed. That respect seemed to trump the frustration and agitation of dealing with someone whose memory was less than perfect.
It’s hard to have a conversation with our loved ones. They forget names, places, relationships, and locations. They may substitute a town they lived in decades ago for where they live now. Or, they may have forgotten all about a place they lived for a large part of their life.
Recently, Mom was trying to tell me something. Based on the story, I knew she was talking about Ft. Worth. But she said, “No, it couldn’t be Ft. Worth. We never lived there.” We lived there almost 10 years. I was shocked, but tried not to make a big deal out of it. I casually mentioned we’d lived there for a while, but had been in Dallas a long time. That seemed to satisfy her, and she moved on with her story. I really couldn’t tell you what she was talking about. It made sense to her, I suppose. All I cared about, really, was that we were having a conversation, however convoluted.
Like Samantha, we can remain patient, and actively listen. If we have a clue what they’re referring to, we can gently guide them in the right direction. If not, we can make our best guess, or change subjects. The best thing to remember is that we’re engaging them in conversation. If they’re not frustrated and seem to be enjoying talking, then just go with it. If the anger flares, or they get too agitated, change the subject.
2. Trouble completing sentences
Aunt Clara was always starting a sentence she couldn’t finish. Or she’d stutter in the middle and get annoyed with herself. Samantha got good at guessing what she was trying to say.
This is a game I play with Mom alot. I try my best to anticipate the words she’s searching for. It’s like a fill-in-the-blanks game. Mom: “I need to get my…my…ummmmm…” Me: “Comb? Shoes? Toothbrush? Glass?” Every guess is followed by a “No.” If she gets angry at herself, I try and throw something crazy in there, like “Puppy?” or “Chainsaw?” That usually makes her laugh, and forget about whatever it was she was trying to say.
Sometimes it’s like charades. If she’s feeling good and has the energy, she may gesture to her hair or teeth. That’s easy. But when it starts being less direct, when she points to the TV or her to closet, then we’re back to the fill-in-the-blanks game.
To date, helping her complete sentences has worked out well. Usually, she seems very relieved to have completed her thoughts through this tag-team method. There have been times, however, when she’s gotten very angry with me for even trying. At those times, I try to empathize with her: “It’s ok, Mom, I forget stuff all the time.” Then I change the subject. So far, so good.
3. Lack of good social judgement
Aunt Clara was always, quite literally, dropping in unexpectedly. But Samantha always welcomed her. She made her feel at home, and adjusted her plans if necessary.
Dropping in on folks isn’t a polite thing to do, at least not according to Emily Post. You should be invited. Bringing others who also aren’t invited? Not nice either.
My mom called this good manners. We had to say “yes, ma’am” and “no, sir.” We did not eat with our fingers. We did not tell people to “shut up” or “get out.” We did not call people names.
There were certain things you never did; it just wasn’t proper. Break these unwritten rules, and you’d be accused of being born in a barn.
Mom was raised with certain standards, and demanded them of us and everyone else. Social etiquette was high on her list of positive attributes.
Until dementia. Exit Emily Post; enter Roseanne Barr.
This has been really hard to get used to. But, it’s part of the disease. The first sign, years ago, was when Mom invited someone to her stepdaughter’s wedding. Now, that just isn’t done. I mean, it was Mom’s foreign language student. A Korean girl who’d never been to an American wedding. OK, exceptions were made.
But then, Mom asked the limo driver (who was whisking away the bride and groom) to give this girl a ride home. Awkward. Everyone was standing around waving already…what were they to do?
She rode up front with the driver. Julie and Bub graciously allowed it, but everyone was alarmed.
When I heard this story, I was aghast. Mom did WHAT? Looking back, we now know this complete lack of social judgement was one of the early signs of dementia.
In the years since, there’ve been many more. Within our family, we simply say to each other “Wow…Mom sure wouldn’t have done that (called someone fat; thrown things; told someone to shut up) before dementia.
With Mom, we try and redirect her if we’re present during the inappropriate behavior. For instance, we might say: “Mom, she’s nice to you, don’t yell at her.” Or if it’s after the fact, we apologize for the behavior. Like recently, when I had to apologize to three care partners who’d had lukewarm coffee, iced tea, and/or water thrown at them.
Then we look for reasons behind the behavior, so we can fix it if possible. Was she angry? Frustrated? Could she have a urinary tract infection (UTI). Those infections wreak havoc. Is there anything anyone could’ve done to prevent that outburst?
But most of all, we just let it go. It’s not Mom. The real Mom would be horrified at this behavior, but fortunately, she’s past the point of knowing or caring that her behavior is inappropriate. She just is what she is. It’s her disease, not her. The memory care staff know this, and we know it. We all love her anyway.
4. Inappropriate Dressing
Look at this picture of Aunt Clara in her bonnet and fur stole. Forget that she popped up in some sort of barrel at the zoo, my guess is this is NOT appropriate attire.
Dressing for summer when it’s winter, and vice versa, is a common issue with dementia patients. They simply don’t know. Or maybe they go for a walk in their pajamas, or worse…they don’t wear clothes at all.
Yes, Mom has wandered into the halls in pajamas, or even naked on occasion. For the most part, however, when she could still dress herself, this simply manifested itself in mismatched clothes. Not a big deal, but again, so not Mom. She was a Talbot’s gal in her previous life. She took great pride in looking good.
Now, she has people that help her get dressed. Our job is to provide clothes that Mom can still take pride in. No, we don’t shop for her at Talbot’s anymore, but we do make sure she has fun outfits. Outfits that are appropriate, comfortable, and bright.
Mentally, our loved ones may have regressed to a two or three year old’s level. This comparison was one of the most helpful tools we got from the memory care director.
Think about it. If they can’t dress themselves, feed themselves (get food, prepare food, keep food fresh, etc.), take care of their hygiene, take medication, keep themselves safe, etc. — what age are they really? That question helps when you’re looking at your parent, or your friend, and struggling with making decisions for them. You wouldn’t leave a two year old to fend for themselves, would you? When I ask myself that question, it becomes easier to step in and make decisions.
That comparison also helps when your loved one walks out in checked pants, striped shirts and a plaid vest. How do you react when a child does this? You chuckle, and let it go.
Ask yourself: does it really matter? If it does, for whatever reason (they’re having their picture taken with the President, for example), then grab another shirt and tell them you’d love to see them wear that instead. If they refuse, forget it. They don’t care, and no one else does either. Love them the way they are, and count it as another dementia moment.
OK, in Aunt Clara’s case, the pink elephant really was in the room. My mom has never seen pink elephants, but she did have an entire conversation with me once about the tigers in the hall, and how she was getting tiger’s milk, and how expensive and rare that was. Her line? “You can’t just get that anywhere.” So true.
That was a tough conversation to roll with. There have been other hallucinations, or confusion (not sure) as well: the little kids playing in the hall; the boy banging on the pipes (that was a plumbing issue); the two craters mashed together that formed their room.
Sometimes I know that Mom is confusing her dreams (or television) with reality. She will tell me elaborate tales that obviously aren’t true. But I don’t tell her that. I just listen, and comment as if it were true. I play the game.
If she’s upset, if she really thinks the man down the hall is a serial killer coming for her next, I address it. I tell her she had a bad dream, and that he’s a nice man and she’s safe. I tell the director so she can alert the staff that Mom is afraid of him. Then they know what Mom is talking about when she goes into that story, and they can help reassure her she’s in good hands, and nothing will happen to her.
And always, I ask if any of her medications have been changed. Maybe she has a UTI. Maybe there’s a medication adjustment the doctor can make if the issue persists.
I’ve come to accept that these sort of delusions are part of the disease. It’s upsetting, and unsettling to hear your loved one ramble on about things that don’t exist. It’s pointless to correct them, or tell them it’s all in their head. It’ll just confuse and frustrate them. I think of it as story-telling time, and play along.
There are so many behaviors we have to accept as our loved ones progress in their dementia. Education has been my best coping mechanism. Lately, I’ve been reading Confidence to Care, by Molly Carpenter. She gives numerous examples of how various behaviors manifest, and actually gives you phrases to use when you encounter them. It’s one of the simplest and most useful books I’ve found to date.
I know this is a hard and painful journey. Hang in there. Your OBC community is here to help you in any way we can. Let us know in the comments how you cope with behavioral issues. Maybe we can find new solutions together.
Most of all, remember this: you’re not alone.