I presented a webinar for individuals across the country on the subject of how to have a meaningful conversation with someone with dementia. When we ran out of time, attendees were asked to submit their questions so I could respond to them individually. I’d like to share a few of them with you in hopes that they add to your understanding as well.
What should I do when they ask about a spouse or child who has passed?
Encourage them to talk about their loved one.
If they’re talking about them in the past tense, ask questions around things they say, allow them to share memories. If they’re of the mindset that they’re still with you, welcome the conversation about them. Again, let them share stories.
Are they asking where they are or why they’re not here?
Do Say: “They were busy today and couldn’t be here” or “They had to work and were disappointed they couldn’t make it.”
Don’t: tell them they have passed. It will likely cause great sadness in them, partly because they don’t remember their passing anymore so each time they learn that news they have to start fresh with grief that they no longer know how to process. It’s a repeated process of living with a horrible moment.
What about false stories told to third parties (doctors, neighbors, friends). How should we handle explaining to third parties about the dementia?
I often suggest the family member join their loved one for any medical appointments so you are clear on what information is being given to their medical providers.
If they won’t allow you to go into the doctor appointment with them, I suggest you contact their medical provider in advance of their appointment and give them examples of when they’ve been forgetful and how that’s impacting their daily life. Learn more about the warning signs a loved one may need more support.
As for what the neighbors and friends think, at some point you’ll have to trust in yourself, knowing what you’re doing is the best you have to give, and your intent is honoring. It’s likely your loved one is not trying to be difficult, they simply don’t have the same cognitive skills they once did. You can’t win that battle.
How do you take the checkbook away without her feeling she has lost her control? She cannot write her check anymore without a lot of help.
I’d start by making it about you and not them. Instead of making them feel like they are inadequate or losing one more thing, it’s more about you and wanting to help.
Don’t Say: “I know you’re having difficulty writing out checks, why don’t you let me do that for you?”
Do Say: “I love you dearly, I have some extra time. How about I start writing out the checks for you? I know you’re capable, but it’s something I can do and I’d really enjoy doing it.”
Read Reality Orientation Therapy versus Validation Therapy to learn tools to help respond to confusion brought on by Alzheimer’s disease and other forms of dementia.