When the conversation takes a turn…
When you’re spending time with someone living with the symptoms of dementia, there are likely to be moments in a conversation when you think “Yikes! How did we get here?”
The secret is to not panic.
Stay calm and relaxed (and be sure that your body language and tone remain calm and relaxed, too).
Take a moment and breathe.
One of my colleagues walks around with a cup of water; when she encounters a difficult situation, she takes a sip. That brief moment often enough of a break to let her figure out what to do next.
You know your loved one; for the most part, just trust your instincts on how to react. But I’m including a list of suggestions for various situations that may arise anyway. I hope that these help you and, if you’ve had this experience and have anything to add (or dispute!), please share with us in the comments section.
Some potential obstacles and how to overcome them
Thinks she’s in a different place or time
This one’s pretty easy: just roll with it. Don’t correct; she likely won’t suddenly realize where she is (or whatever the confusion is). Instead, she’ll be upset that you’re questioning her reality.
And there’s no reason to do so.
Communication is about so much more than dotting your “i”s and crossing your “t”s; getting caught up in the details of your loved one’s background assumptions is usually counterproductive.
Your dad thinks you’re spending time with him at his home in Michigan, circa 1974, when in actuality you’re in North Carolina in 2012? Fine. Just go from there. Oftentimes the things that people want to share aren’t tied to the time or place anyway.
To summarize: don’t correct most mistakes; in particular, you should almost always let go of the ones regarding time or place.
Mistakes you for someone else
This is sometimes an extension of the above example, “Thinks she’s in a different place or time.”
So your maybe your mom thinks that you’re her mother. Okay. This can be uncomfortable (even more so if, say, your father thinks you’re his wife). But it’s usually not a huge problem, because it’s usually not a big impediment to communication.
By the way, this tends to happen in mid-stage dementia and later.
Sometimes it’s not important: much like when someone thinks she’s in a different time of place than she actually is, who precisely she’s talking to may not matter as much as the communication itself. And if she mistakes you for someone she loves and who loves her then you can take comfort in the knowledge that she recognizes something essential about you; she’s just not able to fully make the connection.
Other times, such as when revisiting painful memories (perhaps apologizing or asking forgiveness from a specific individual), it can seem to matter very much whether you are who she thinks you are.
This is something that is intensely personal, and people handle in different ways. I, myself, have not been faced with this and can only speculate on how I’d react, but the advice that I’ve heard most often is to allow your loved one to think you are whomever she believes you to be…then listen.
Often, towards the end of life, people have a lot of unresolved emotions that they want to work through. If you can do anything to help your loved one find comfort and peace, try to see it as an opportunity and just encourage the expression. Hopefully it will help bring her some resolution.
Forgets who you are
There are other times when your loved one might be entirely unable to recognize you, forgetting who you are or even that she knows you at all.
If this is a recurring problem, try to begin each visit by approaching her from the front, putting yourself on her eye level and meeting her eyes, perhaps touching her shoulder, hand, or arm, and explaining, calmly and clearly, who you are. “Hi, Momma! I’m Jennie Lynn, your daughter. I came to visit you, Mom.”
The hardest part of this is usually keeping yourself from expressing hurt feelings while you’re there. If you can remain calm and relaxed, your loved one will often mirror your mood. This can enable conversations and communication even if your loved one doesn’t know who you are.
I’m familiar with 2 types of repeated questions: the ones that have to do with schedule (“When are we having dinner?” 4 minutes later: “Is it getting close to dinner time?” 12 minutes: “I’m sure hungry; is it time for dinner yet?”) and the ones to do with conversation.
A lot of schedule-related questions stem from the desire to not miss something that your loved one’s looking forward to doing. This can manifest as preparing for an event very early (for example, putting on a coat and waiting in the hallway for a shopping trip you’ve planned in 2 hours), as general restlessness or agitation, and as repeated questions.
How to handle repeated questions
One way to handle repeated questions is to repeatedly answer them. This, however, can drive you a little crazy. So here are some alternatives:
- First, determine if the repeated question is a hint that something’s wrong. Asking about dinner may mean that your loved one is hungry or thirsty; asking about shopping could mean that she’s cold. Perhaps she needs to use the restroom. Go through a mental checklist of wellness items and make sure that her basic needs are met and that she’s comfortable.
- Write down a schedule (for the day or for the morning, depending on cognitive ability) and place it by a (preferably analog) clock. If necessary, illustrate what the clock will look like when it’s time for each activity.
- Write a schedule on a sheet of paper that your loved one can keep with him or her
- If there are certain events that seem to be triggers (example: dinner) write a post-it note somewhere that your loved one can see it that says something like “dinner time is at 6:15 PM!”
- Redirect her. This is especially effective if it’s a recurring question (example: asking about dinner every single day). When “questions time” approaches, engage her in an activity
- If you can, anticipate the question and answer/explain it in advance. “Oooh, dinner’s going to be in an hour, I can’t wait!”
- Above all, try not to lose your patience
When I visit with my grandfather, he’ll ask me about my work. It’s something we’ve long talked about, as he’s always taken an interest in my schooling and then professional development. It’s a way that we connect, and I love that he’s interested in it.
But sometimes, now, even while I’m answering his earlier question about my job he’ll politely interject to ask me about my job. He might ask me 6 or 8 times in a single visit. Every time, I answer him.
Things I don’t do:
- say “You’ve asked me a million times already!” and get upset
- grow increasingly frustrated each time I answer
- “dumb-down” my answers
What I do instead:
- answer each time as though it’s the first time he’s asked me
- if I’m tired of talking about the same thing, I’ll take the question in a different direction each time he asks. For example, I might initially talk about projects, then colleagues, then professional goals, then a specific meeting…
- continue to engage conversationally, pausing to allow for questions and, when relevant, asking for his advice
- appreciate that this shows how deeply he cares about me, that he’s so interested in what I’m up to
- remain calm and cheerful
Non-responsive/doesn’t attend to you
First, check to be sure that she’s comfortable (not cold, not thirsty, etc); she may be distracted by something she’s unable to express.
You can attempt to engage your loved one using different senses. For example, if talking to her isn’t working and she’s ignoring you, try: showing your mom photos she’d find interesting (from her past, perhaps, or of things that she likes); listening to music; walking together (perhaps outside to smell the flowers. “Walking” can, of course, involve wheelchairs or walkers); encouraging her to play an instrument (if that’s something that she used to do) or do something else familiar with her hands; singing; sharing a snack.
Remember that communication needn’t involve words, and that sometimes just spending time together can be beneficial to you both.
Sometimes your loved one will initially be engaged with you, but then begins to drift. Assuming that she’s not uncomfortable or in pain (check first), it could be for any number of reasons. Perhaps she lost track of the conversation because it was moving too fast for her to keep up. If this is the case, briefly (but not hurriedly) summarize what you’re talking about in basic terms; attempt to bring her back in.
Overall, you can try to simplify the conversation a bit. Don’t talk down to her, but present one concept at a time. Openly ask for her opinion so she doesn’t feel excluded. Alternately, maybe she’s distracted. Asking what she’s thinking about can help. Often, you can shift the conversation to the thing that interests her. Perhaps it’s birds playing outside the window: you can sit together and talk about them, enjoying one-another’s company.
Agitation or irritability
Step one: check to be sure that your loved one is safe and comfortable. You should have a mental checklist, something like “In pain? Dehydrated? Hungry? Cold or hot? Resting in an awkward position? Tired? Needs to use the restroom? Sore? Overstimulated…?” A lot of the time, agitation is the result of attempting to communicate that something’s wrong but being unable to enunciate the problem.
Ask what’s wrong or if she’s upset.
Assuming that everything is alright, immediately attempt to redirect your loved one. Shift your attention to another topic, move to another (perhaps quieter) location, play soothing music…do whatever you can think of to calm her down.
Take note of the time of day and what was happening (including the topic(s) you were discussing) at the time she became agitated. If it consistently happens at the same time of day, it could be “Sundowning” (also known as “late-day confusion”). This is something to discuss with her doctor. If it happens when certain subjects come up in conversation, make a point of avoiding them. In general, you want to attempt to pinpoint the cause of the agitation and then reduce or eliminate it.
Forgets major life events
If the life event is a painful one, it’s okay to lie (or at least to avoid the truth). For example, if your father asks about your deceased mother, it could be cruel to force him into grieving all over again by telling him the truth…just to have him forget it again tomorrow and go through the same cycle. That kind of honesty does more harm than good. If possible, redirect your loved one to a different activity or topic. An answer like “she’s out for a bit” may be much kinder than explaining the truth.
This is part 4 of our 5-part guide, Talking to Someone with Dementia
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