Delivering Bad News in Dementialand (Or Do I Tell Mom Her Sister Died?)

As promised, I am starting my series of Q & A today. Wading through your emails and comments has made me realize how many important topics I have not yet written about in my blog.

Today I address one of these issues. I can tell you exactly why I haven’t discussed it before–because it’s a hard topic. And my response on this one tends to make some people uncomfortable. I’m gonna tell you that it’s not always best to tell the truth.

Dear Elaine,

I love your posts! So many of them have been so helpful for me. My mom is 85 and has moderate dementia. She is in an assisted living and has adapted pretty well. Her biggest issue is short term memory. She will literally reboot every 10 to 15 minutes and ask the same question. We have struggled with the question of “Where is all my stuff” and have simply told her it’s all in storage.

A few months ago her last remaining sibling passed away and I was given the job of telling her. So I took the 2 hour drive to go see her and let her know.  And as expected, 15 minutes after I got there and told her about her sister, she forgot. I told her one more time and then she forgot.

I talked with my brothers and said that I didn’t think she should go to the service for her sister. My feelings were that there was no point in having her grieve over and over again. She was not close with her sister anyway. Did I screw up? Should I have taken her? 

Thanks again for the great blog!

Karen

 

Dear Karen,

Well, I’m actually a bit embarrassed here. This is my 136th blog post, and I’ve never discussed this before. So here goes…

I want you to take a moment to think about what it felt like when you were told a loved one had passed away. I remember being in high school when I was at a friend’s house. I got a call from my mom who told me that my grandfather had died of a heart attack. He wasn’t a young man, but it was a surprise.

Everyone has a unique response to devastating news. You might feel like you were punched in the stomach. You may become sick to your stomach or start sweating. Maybe you get short of breath or begin trembling. My go-to response when I get bad news is a sensation that a racquetball is lodged in my throat.

I want you to remember that when you give someone bad news, you are inflicting on them this type of response. And, sometimes, it is necessary to do this. In life, we are sometimes charged with the task of delivering terrible news to people we love. It’s not easy, and it’s not fun.

I know pain is a part of life, and pain is unfortunately often present in Dementialand. Giving someone news that a loved one has passed causes them pain. (I should add that it causes no less pain when someone is told that their loved one died ten years ago than when you tell them they died yesterday. If you work in a nursing home, please keep this in mind when a widow asks where her husband went.)

What we want to avoid is inflicting pain unnecessarily. If a person will not be able to process and remember that a loved one has died, giving them this information causes them unnecessary pain. If you must tell them repeatedly because they are not able to store the information, you are causing pain with no purpose. It’s like poking someone with a needle but not giving a shot.

I am not a big fan of the stages of Elizabeth Kubler-Ross’s stages  of grief (denial, anger, bargaining, depression, and finally acceptance) because they are a far too simplistic conceptualization of the grief process, but most of us do work through a variety of difficult emotions and eventually–or hopefully–come to something that resembles acceptance or peace.

However, that’s not a possibility for someone who has short-term memory issues. When we tell someone who cannot store information that loved one is dead, they experience those negative emotions that all of us experience upon hearing this type of news. Yet they cannot remember the information long enough to come out on the other side and find peace. Their peace comes from forgetting what we have told them…and unfortunately that is the point at which we tell them again.

The trick, of course, is figuring out when someone moves from a place where they have the ability to process the information of a loved one’s death to where they cannot. People in the early stages of dementia must suffer through bad news just like the rest of us. As the disease progresses, we must ask ourselves whether or not they are capable of holding on to this information. If they aren’t, we shouldn’t dole it out repeatedly.

A friend once told me how she went to the nursing home to tell her grandpa that her grandma had passed away. Her grandpa had Alzheimer’s, and she wasn’t sure how he would respond to the news. She told him how his wife had passed away peacefully at the hospital surrounded by family.

He teared up, but soon got distracted. About five minutes later, he asked where his wife was. My friend told him again that his wife had passed away. He once again got teary, but in a few minutes he was talking about the weather. Then he circled around and asked where his wife was. My friend took a different approach this time.

“She’s at Hobby Lobby,” she told her grandpa.

“That woman could spend the whole damn day at Hobby Lobby. I’m gonna need another job if I can’t win the Powerball,” he responded with an eye roll.

From that moment forward, Hobby Lobby became the stock response when he would ask where his wife was. Not only was he spared the repeated (and purposeless) pain of being told his wife had passed away, he was given an opportunity to make snide remarks about her shopping.

The short answer, Karen, is that you did not screw up.

Elaine

 

 

 

 

 

 

 

 

8 thoughts on “Delivering Bad News in Dementialand (Or Do I Tell Mom Her Sister Died?)

  1. I agree with this Elaine. Maureen has moderate to severe dementia I ‘try’ to only give her good news. What is the point of giving her bad news she will only dwell on it? She has enough to cope with on a daily basis without tempting her to grieve about things she can no longer do anything about.

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  2. It’s really helpful to read this, Elaine. I’m teetering on the edge of this situation with my spouse, realizing that when the next relative dies,I will need to decide whether or how much to tell her. This helps me think it through.

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  3. Dr. Elaine, thank you so much for this post. It’s so incredibly timely for me. I’m the primary caregiver for my mother, who is about halfway through stage six of dementia from Alzheimer’s. In February, her older sister (who is one of just two people from her past that she consistently remembers) was diagnosed with very extensive stage four cancer. A good friend who has lots of experience with dementia patients explained to me that it was not in my mom’s best interest to learn about her sister. However, until I read your post (which showed up in my FB support group soon after), I still considered telling my mom and taking her on the 12 hour trip to visit my aunt, because being honest FELT like the right thing to do. My sweet aunt ended up passing away early Saturday morning. Thank you for explaining so thoroughly why putting my mom through the trauma of her sister’s death (likely over and over again) is not helpful, loving or fair to her. I will likely use your article as a reference when defending my decision to anyone who might question it.

    Your blog is such a blessing to those of us burdened by this terrible disease. Thank you.

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    1. Hi Kim– There are times when it’s a bit borderline as to when to tell someone about a death… But if your mom is in stage 6, my thought is that you are ABSOLUTELY doing the right thing. Her dementia has progressed too far for her to process this information, although she may still feel the pain when you tell her. And please use my article to defend your decision as you choose—but know that you do NOT have to justify your decision to anyone.

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