My mom’s best friend’s husband died recently. My mom had known him for more than 60 years, but I debated whether to tell her. She’s had dementia since the fall of 2012 and retains almost no new information.
We call her friend often and my mom asks after her husband—an old memory the disease hasn’t stolen from her. I decided she should know.
I sat down next to my mom in the memory care unit where she lives and said, “We need to call your friend. You know her husband was not well for some time. He died yesterday.” My mom was shocked and readily accepted my offer to call her friend on my phone.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, “Did you talk to her? How did she sound?”
The experience made me wonder if I made the right choice to tell her.
When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, “Did you talk to her? How did she sound?” She had forgotten that she spoke with her friend, but she remembered that her husband had died.
The experience made me wonder if I made the right choice to tell her and what I should do if she forgets in the future. For guidance, I turned to Stephanie Rohlfs-Young, director of volunteer programs at the Alzheimer’s Association. The following is an excerpt of our conversation, edited for clarity and length.
MemoryWell: Should you tell someone with dementia or Alzheimer’s that someone they know has died?
Rohlfs-Young: As a general guideline, every human deserves the respect of knowing that something has happened that would impact their life. You want to be sure that they know that information. Beyond that, look for their reaction to guide you in how you continually present them with that information. When my husband’s grandfather passed away, his grandmother was living in more advanced stages of dementia. When we shared the news, she didn’t visibly react much at all because she just wasn’t able to process that grief. But we certainly wanted to respect her right to know.
MemoryWell: How should you approach it and what should you say?
Rohlfs-Young: As the disease progresses, we have to realize that they live in a more literal world, so using euphemisms like “he passed away” may not make as much sense to that person as being honest, direct and clear and saying, “Ed has died.” Then you can go on to explain whatever circumstances that you think the person might be able to grasp. But what I always prefer to do, because we know memory tends to live longer in the very distant past than in the recent past, is turn to reminiscence: “Hey, I remember you and Ed used to go fishing all the time. Tell me about how you and Ed used to go fishing.” Those kinds of conversations help to refresh happy memories rather than lingering on the trauma.
MemoryWell: How can you prepare to deliver bad news?
Rohlfs-Young: Give yourself time—time to put your own self together and time to prepare your thoughts. Choose the best time of day for them to receive that information. As you would with any conversation, make sure it’s a quiet and private place. Then share with them in the most honest and authentic way that you can.
MemoryWell: What do you do if or when your loved one forgets about the death?
Rohlfs-Young: That comes down to a really individualized choice about how you want to confront the person with bad news. Caregivers sometimes feel uncomfortable doing what I call the “therapeutic fib,” which means, for the benefit of that individual, maybe don’t give all the information. If Ed is the person who passed away and you’ve already shared that news, it may be okay to say the next time they ask, “Ed can’t visit today,” rather than: “Ed died, Mom. Don’t you remember that?”
We’re not suggesting that you outright lie to your loved ones. It’s really important that they be told that information at least once, but beyond that, there’s an ethical fine line that you walk. How many times do you want to present that bad information and make them feel bad about it? We always say caregivers know their loved ones best, so reading those cues and meeting them where they are is the general best guidance.
Stephanie Kanowitz is a Fairfax, Va.-based freelance writer, fitness instructor, mother and caregiver to her mother, who was diagnosed with dementia in 2012. Stephanie earned journalism degrees from the University of Florida (bachelor’s) and American University (master’s), and her work has appeared in The Washington Post, Washington Post Express, Red Tricycle, the Washington Diplomat and the Kveller blog.