Just when you think Covid-19 couldn’t get any more heartbreaking, recently I received this note from a reader. I’ve changed details to preserve privacy.

"My aunt was just moved to a memory care facility 10 days ago. Her younger sister died in December of Covid-19, possibly because of exposure to my aunt. My question is: How do we answer her when she asks where her younger sister is? Should we lie about the death of her sister? It seems that my aunt has some understanding that she may have been the cause of the infection."

How I responded to this letter

Dear Reader: Your question is such a good one, and I deeply appreciate your desire to be both loving and truthful for your aunt in this horrible situation. I am not a healthcare professional, but from what I’ve learned about dementia, my answer would be something like this.

Your approach to your aunt’s questions partly depends on how far down the dementia road she is. But no matter what, the key for people with dementia is, what is the feeling or need that they are expressing with their question, and what can you truthfully say that will bring peace?

I’m not a fan of outright lying. (If you said, for example, “Oh, she’s fine!” your aunt’s next question might be, “When can I see her?” and soon you’re stuck piling lie upon lie.) In this area, I’ve learned a lot from dementia expert Rachael Wonderlin at Dementia By Day, who advocates the approach that I use: entering their reality. (I recommend checking out Rachael’s blog posts on communicating with someone with dementia.)

How to enter their reality

In this case, for example, if your aunt asks where her sister is — let’s call the deceased sister Annette — Rachael suggests asking in return, “Where do you think she is?” It could be that your aunt thinks Annette is in the hospital, or at home but sick, or at home and fully recovered … or at home and 25 years old … or out shopping … or anywhere else. Finding out where she thinks Annette is can guide your answer, because with dementia, it’s all about entering their reality, not making them conform to your reality. Her reality is absolutely real — to her. As you enter their reality, as Rachael says, “If it’s true for them, it’s true for you.”

So if your aunt says, for example, “I think Annette is at home,” that is real to her, and you can affirm that without lying: “You’re probably right,” and leave it at that. (You don’t have to define what “home” is.) If she knows and says that Annette is dead, that is also real to her, and you can affirm that as gently and simply as you can: “Yes, she passed away and is at peace now. She knew how much you loved her, and how special your relationship always was.”

If she expresses fear or regret about being the cause of her sister getting Covid … and oh, how my heart breaks for her if she believes that … then you could say something else that’s true, such as “We don’t know for sure how people get this sickness; it can happen in so many different ways. But we’re glad you’re here and we are all sticking together through this, no matter what.” 

If, in answer to “where do you think Annette is,” your aunt says, “I don’t know … I’m not sure,” you can truthfully answer, “You know, I’m not exactly sure either, but I can find out. I’ll make sure she’s not alone.” This could give her the peace and reassurance she’s really asking for, knowing that someone is taking care of it, that Annette isn’t alone or lost.

Likewise, it’s OK to affirm that someone is sick, if that’s what the person with dementia knows and says. You don’t need to add upsetting details about how sick (on a ventilator, undergoing surgery, etc.) — instead adding that the person is getting excellent care, that they’re not alone, that you’ll keep her posted as the person continues to improve — everything that will be truthful in this moment and again, bring comfort to the person with dementia.

These are just ideas, and you can and should make the language your own. I would also enlist the help of the memory care staff so you’re all on the same page. The key, as with everything related to dealing with people, is love.

Care for yourself

One more thing: In your own grief, please be gentle with yourself as well. If you’re feeling anger or guilt or exhaustion, take care of yourself before attempting to care for your aunt. All of those feelings are completely normal and understandable, and you will only be able to love her well if you’re first caring for yourself. Far from being selfish, that’s the best thing you can do for both of you. I’m also a huge fan of reaching out to a professional counselor if you’re having trouble coping. 

I hope this helps. Please know that you are in my prayers

What do you think?

Whether or not to lie to someone with dementia is a common and difficult situation. Do you agree or disagree with my answers? Do you have experience to share? I welcome your thoughts in the comments below.

Elisa

P.S. As noted in one of the comments below, I often ask people if they would like prayer for themselves or the loved one they’re concerned about — to this day I’ve never had anyone say “no thanks.” For anyone who may not feel confident sharing hope and comfort from the Bible, I’ve created a couple of “cheat sheets” here: https://spiritualeldercare.com/portfolio/common-prayers-bible-verses-and-more/