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LJM1962 Asked June 2016

What's the best way to answer certain questions from a dementia patient?

My mother is 83 and has dementia. She has good and bad days. Last week she awoke in the morning and was very confused about where she was and was asking where my father was. He has been gone for 26 years now. When I told her that Dad was gone, she cried and screamed for almost an hour until I could calm her down. Should I have told her that Dad was gone? What's the best way to answer questions like this? Is it best to start telling little white lies to keep them calm?

EXPERT Carol Bradley Bursack, CDSGF Jun 2016
Going with the person is far kinder than "telling the truth." It's not lying, it's compassion. If a spouse has been gone for decades and that is the time frame where the person is in his or her mind, then the grief is new and fresh and real every time they are told about the death.

In my opinion, it's far kinder to say "you'll see him soon" or "he's out for now but you'll see him soon" and then move on with some kind of distraction. Yes, you'll revisit this again and again no matter what you say, so rehearse an answer that is compassionate and not too detailed. Their reality isn't ours - we need to get into their heads and understand where they are. Their brains are broken - we work with that. Then we try to answer in a way that isn't going to bring on fresh grief.
Carol

geewiz Jun 2016
Gentle story telling, little white lies or whatever you want to call it is the way to go, in my opinion. Why make someone relive their partner's death? I don't see anything to gain from that. When my Mom asked me where my dad was -- I reminded her he was on the new committee for his fraternal organization and had a big planning meeting. Oh yeah she said. That was it. (he had been gone 30 years) . When she asked where the boys were (the term for her brothers growing up), I reminded her they had a soccer game and we should hope they won.
When a friend's father passed away, they had the Mom at the viewing and services. Seems logical right -- despite the woman's dementia. The wife would walk up to the casket, scream and cry uncontrollably. They would walk her out into the sitting area in another room and calm her down. When she had relaxed, they would bring her back in and the scene would replay itself. It was like the definition of insanity -- repeating the same steps and expecting a different result.

Dementia is an illness. The patient can't remember nor can they logic things. We have to help them by giving them answers they can live with. And that are BEST for them.

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CarolC75 Jun 2016
Geewiz said it well. You need to get past the idea that you are lying to her. You are simply making her comfortable and peaceful. It doesn't matter one iota what you say. Any story will do as long as it calms the fears and co fusion that Alzheimer's people suffer.
I started out the same way since my husband and I had a wonderful marriage and never lied to each other. At first, when his dementia was getting worse I'd always try to explain the "truth" to him. Every day I was telling him that his mother was dead, his brother died in surgery or that his dad has also passed. This did nothing to help him even though it was the truth.
When I got smarter, I would tell him his mother was shopping, or his brother would be back soon, etc. Why torture people who won't remember anyway?
With Alzheimer's people, you must learn to live in the moment. That's all they have and its up to caregivers to make those moments as peaceful and calming as possible.
Good luck to you!

JJGood19 Jun 2016
My Mom has had dementia for about 7 years, originally it progressed slowly, but she has really declined rapidly lately. I used to think the truth was the best policy, but now I think keeping her calm and untroubled should be my goal....so if that includes little white lies, then so be it.

LJM1962 Jun 2016
Thank you all for your helpful answers and advice. Sometimes I feel so alone because none of my friends are dealing with anything like this and while they listen to me, its hard for them to give advice. Its comforting to be able to read all these posts and realize I'm not alone. Thanks again!

Dad_Was_Robbed Jun 2016
I strongly agree with you on the truth being the best policy because you couldn't live with yourself if you knew deep down inside you were lying. The only alternative is just not saying anything

Sunnygirl1 Jun 2016
I agree with those above. I was just curious as to how long in the dementia did your loved one forget about the death of their loved one? My cousin has had Vascular Dementia for almost 3 years. It's very severe, but she still can talk some. She still recalls that her parent are dead, though, she forgets that her aunts are dead. I think that is interesting. I am prepared for the day that she forgets and asks me about them. I need to have an answer prepared.

CarolC75 Jun 2016
Sunnygirl1,
Of course everyone is different but my husband started asking about family members who had died in just the last 3 years. He was diagnosed with Alzheimer's in 2007.
It's common for them to have several things that they focus on all the time. With my husband, it was his mother and brother, getting out of our house because we didn't own it, thinking people were trying to get in and kill us, talking about his alcoholic father... In my support group there are numerous stories about how Alzheimer's will get a focus that keeps coming up again and again.
They just need to constantly be redirected even if it means telling an untruth.
Whatever it takes to satisfy them for the moment.

Sunnygirl1 Jun 2016
I see. I'm relieved that my cousin hasn't had any real negative or scary delusions. She doesn't recall many people, but she still says she remembers her parents and her maternal grandparents. (My parents too.) She says she misses them and hates that they have passed away. She thinks it happened recently though, like a few years ago. (Her dad died over 20 years ago.)

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