Meaningful Exchanges With Someone Who Has Dementia: Honesty is Not Always Honoring
Recently I presented a webinar for individuals across the country on the subject of how to have a more meaningful exchange 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.
Q: What should I do when they ask about a spouse or child who has passed?
Encourage them to talk about their loved one. Clearly this person is on their mind, so allow them to share what they’re thinking. 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.
If they’re asking where they are or why they’re not here, respond with something like “they were busy today and couldn’t be here” or “they had to work and were disappointed they couldn’t make it.”
Telling them they have passed 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.
Allowing them to bypass that with a fib is definitely an honoring thing to do.
Q: What about false stories told to third parties (doctors, neighbors, friends). How should we handle explaining to third parties about the dementia?
I often find this is particularly difficult because not only do you have to process your loved one misrepresenting what’s happening, but you have to wonder what they think of you being the child who never visits (but you really do) or you won’t take them somewhere (but you do all the time). And then there’s the doctor visit, where your loved one tells the doctor everything is just fine, when of course it’s not.
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. The medical professional can only react to the information they have, and someone with early stages of memory loss can gather their strength to present alert and well for a short medical visit.
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 share with them what you see, give them examples of when they’ve been forgetful and how that’s impacting their daily life. Are you finding spoiled food in the refrigerator? Have they gotten lost while driving? Giving specific examples can go a long way to helping their medical provider give a better diagnosis.
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.
Q: 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 saying “I know you’re having difficulty writing out checks, why don’t you let me do that for you”, I’d say “I love you dearly, I have some extra time. I’d like to find something I can do that would make me feel more helpful in your life. 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.” Instead of making her feel like she’s inadequate or losing one more thing, it’s more about you and wanting to help.
How can we leave them with as much dignity as possible while still doing for them things that are getting more difficult and making their life challenging.
Our www.laureategroup.com/blog has a number of blogs that address this and related subjects you might find helpful.