One of the biggest struggles of communicating with a person living with Alzheimer’s or dementia is repetitive questions or comments. I struggled with this with my Mom and it took me a while to understand why she asks a particular question over and over. That allowed me to figure out how to deal with the underlying cause.
It took a while to realize that the questions weren’t actual questions. This is one of the many challenges of Alzheimer’s or dementia. Her question came up organically although it wasn’t natural to Moms’ core personality. I assumed that was part of the changes caused by her Alzheimer’s and it may have been, but not the way I thought.
Mom was always an independent person, almost to a fault. Her habit of repeatedly asking if “her husband” knew where she was (was going) was odd. Honestly, she was the type of person who may or may not have left a note when her schedule deviated from the norm. She also rarely cared if not leaving a note bothered you.
It’s this background that made this particular question, her insistence on making sure he knew where she was was, troubling. I would answer every time and try to help her move on. Sometimes, the question came even when we didn’t leave her care residence. Sometimes the questioning escalated into her accusing him of dumping her on me, a statement that I found troubling.
Did she really think her daughter, wouldn’t visit unless Dad insisted? That’s was a painful thought to consider especially because it’s untrue. Hearing this accusation caused me anxiety which didn’t make communicating with her easier or more effective.
Lacking an understanding of why she was more insistent with this question had been causing me mental anguish. I like to know the “why” of something, how to fix something, how to help. Most of those things are impossible to accomplish with someone with Alzheimer’s.
Deciphering her question wasn’t just for me, it’s also for my listeners. I started a caregivers’ support podcast to help people like me. Not being able to help myself makes me doubt my effectiveness in helping others. This is why I seek out people who have “been there, done that”. I think that’s what finally led me to a breakthrough.
Possible Reason for Moms Question
Mom doesn’t remember that Dad (her husband) died which sometimes seems to be a blessing and other times a curse. I’m a lot like my Dad but never considered that to be a factor in any of my interactions with Mom. That may still not play a role but it got me thinking.
Mom hasn’t seen Dad since the day he died. I’m not sure how she processed his being in a hospital bed because you couldn’t talk to her about that. She simply didn’t understand (or seem to understand) what was going on with him. She didn’t understand what was happening when he was on Hospice, which was his wish.
Reflecting on my own loss is how I got to my A-Ha! moment. I don’t think Mom is concerned that he know where SHE is, I think she misses him. She’s concerned she doesn’t know where he is and THAT is the reason for the insistent questioning I get from her.
What to Do With This Info?
Frequent, repeated questions or comments are how a person living with Alzheimer’s or dementia tries to communicate with us. It’s up to us to be detectives and determine what is at the base of the question. That isn’t easy. Thinking about what could be the underlying “reality” behind a question will help. Moving past our frustration and finding ways to help them articulate their needs will help them communicate better. It will certainly help us.
On my next visit with Mom when the question came up I asked her if she misses him. This could have been dangerous. I didn’t want to upset her by opening her up to grief. I had a couple of days to plan out how my end of that conversation can go.
Dad had traveled to Africa twice so I pretended he was there and not “gone”. This plan did make me nervous but it allowed me to keep the conversation going. Keeping the question light helped Mom answer without reliving the loss of her husband. We were able to move on from her negative concerns to a reassurance that she hadn’t been abandoned by him or her family.
It helps to know that people living with dementia start losing language skills fairly early on. It’s not always obvious in the earliest stages. At some point, it’s obvious only when you spend a considerable amount of consecutive time with them.
In the earliest stage, they retain most of their language skills they’re just slower at processing them. They can keep up with conversations better if you slow down, articulate, and give their brains time to process. It feels funny at first but you get used to it and it’s much better than engaging in a way that frustrates both of you.
As time moves on and they start to enter stage two they are generally more comfortable with routines that don’t change. They repeat themselves much more frequently. At this point, it’s best to remind yourself that they wouldn’t be doing this if they didn’t have Alzheimer’s. As fair as it is to feel, showing frustration when you hear a question for the 5th, 6th and 7th time usually makes matters worse.
Your best bet is to take a breath, mentally remind yourself that they wouldn’t ask if they could remember the answer, and then answer as if it’s the first time. This takes great patience which not all of us are capable of maintaining but it’s worth trying. If we save ourselves frustration in one area we might have a little more patience in others.
It’s also beneficial to know that as the brain deteriorates, people living with dementia lose about 1 in 4 words. You may explain something very clearly and simply but if they miss 25% of what you’re saying and aren’t aware that is happening, you could be looking at anger issues.
Many caregivers are very good at a nice rhythmic tone of voice, visual cues, and then are shocked when they are met with resistance. I didn’t get to “practice” the skills associated with this phenomenon because my Mom seemed to retain a lot of her language skills all the way to the end. At least it seemed like she did.
Mom would talk with the “social chit chat” skills that most people living with Alzheimer’s retain for many years. It did, in the last few months, become much harder because her sentences sounded logical but they were made up of many fragments of memories. I learned the hard way that scrunching up my face trying to decipher what she was saying was a recipe for inducing anger on her part. I thought I was being kind by trying to honestly communicate with her.
What I finally learned was to just “go with it”. It was hard at first and I think this may be common for adult children taking care of a parent. It seemed phony, dishonest, uncaring – you can fill in the adjective that describes your feelings.
Once I learned that we were both much happier if I just went with her flow, agreeing, giving answers that seemed to make sense, or making up a conversation that aligned with what she was saying. It actually became almost fun using some creative skills to maintain a pleasant visit.
Once she started telling me that her “brothers were normal people now…”. Ok. I went along with that. They’re normal now, that seems good. Then she went down a different path where she started talking about how some woman was doing *something*. Instead of scrunching up my face trying to figure out what she was talking about I just answered with what I thought was a logical answer. The afternoon was pleasant the entire time.
Part of the reason this is successful is because the right side of the brain retains things longer than the left. The left houses our language, the right is rhythm and “special words”. The right is where social chit chat lives. It’s the reason many people think our loved one is fine. They carry on conversations just fine because they’re not required to “go deep” into a topic. It’s all social niceties.
What also remains of language on the right side of the brain are forbidden words like swear words and sex talk. There are also ugly words/talk and racial slurs. Fun times! The challenge is not to give them reasons to draw on these remaining language skills.
The best way to keep from triggering some of these unpleasant language skills is to also understand their limited visual field. Here’s a trick. Put your hands up to your eyes as if they’re binoculars. Now, approach them with the mindset to get the large chunk of food off their shirt.
Remember, they don’t hear/process about 25% of what you said. If you’re nodding and smiling and the rhythm of your speech is pleasant they’re likely to be agreeable despite not truly grasping what you’ve said. Now, reach out and touch them. They can’t see it coming and it’s startling.
The best way to handle a situation like this is to demonstrate on yourself, what you want to do, or want them to do.
As you get further down the path with Alzheimer’s you will have to learn more and more ways to communicate as their language skills deteriorate.
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