wings and things

Dementia and deception

on August 31, 2014

For several weeks now, I have been leaving the nursing home at around 5.30pm after helping Ants with his dinner. I turn the television to the ABC news, draw the curtains, make sure the air conditioner is on to the heat setting, rearrange the blankets on his legs, and give him a hug and a kiss and say,

“I just have to do some grocery shopping, but I’ll be back later, Ants, okay? Do you want me to get some chocolate? Yes? See you soon then. I love you.”

And then I go home with my heart thudding LIAR!

So why am I lying? Because, now that Anthony is in the throes of PDD (Parkinson’s disease dementia), the lie that I am coming back soon, when I am actually going home, is much kinder than wrestling verbally, and emotionally, with him about why I can no longer bring him home.

If I say, “I’ll be back soon”, I don’t have to say, “You are too heavy for me to manage at home.” And I don’t have to see his eyes go sad. Instead, he smiles and hugs me and says “Don’t be long, Jules”.

Tonight I told the evening nurse-in-charge about my new method of leaving Ants and she gave me the thumbs up and said, “Sometimes, in cases of dementia, a white lie is kinder.”

“Yes, but when I say to him that I’ll be back and I don’t actually come back, does he get distressed and ask for me?”

“No”, she said, “we just put him to bed and he is fine.”

34 responses to “Dementia and deception

  1. Terry says:

    I know about the lies. I used to tell Al he could take everything in his room when he went to heaven. He fought dying. He would rather have remained here suffering so that he didn’t have to leave his personal items behind. I always felt guilt and a heavy heart, but I had to help him pass to the other side so he could be healed

  2. susanpoozan says:

    That sounds like a very commonsense way to behave, less stressful for everyone.

  3. Anonymous says:

    hugs Julie at least you know Ants is happy when you leave don’t feel guilty you are doing a great job all my love to you Ants xx

  4. Rhonda says:

    There are no lies in your love for Anthony. Only truths. Hard ones that you are facing the best way you know how and the only way to ease his mind. No guilt, just love.

  5. I remember when I was in hospital when I was five years old my mother said that to me (that she would be back) and I waited and waited and waited and eventually I fell asleep. Then I woke up and after a while she was back again (the next day). So she kept her word.

  6. Its_like leaving a child at preschool. They cryuntil you are out of sight and then happy to play. You are doing your best. You deserve a medal as big as a frying pan. Don’t be hard on yourself.

  7. Colline says:

    I think you are doing the right thing Julie – not only for yourself but for Anthony too. This way he does not get upset and experience anxiety.

  8. The truth of love is complicated. The truth is, you’ve discovered that love sometimes demands that we resist our compulsion toward full disclosure.

  9. Judy says:

    Dementia is another language and requires different customs. Of course, you know this. You are visiting Anthony in his “country” and you continue to devote all your time and energy to keep him safe and comfortable. That is such selfless love. The language that you deem “lies” is not. Anthony has no sense of time. You tell him you are coming back and mean that with all your heart. The language that you choose to explain it is the only one that he can understand and does not agitate him. You could try to pull him into your world with honesty, but for what purpose? Being in this position where you feel like you are lying is not about you being a flawed person. It is about this horrible disease that you and Anthony are afflicted with. Turn your hatred toward the disease and not upon yourself. Julie, light shines from you and you have no idea how you glow with wisdom and love. Don’t let the disease put out your light.

  10. I love your kind heart Julie! ❤
    Diana xo

  11. I know exactly what you mean. I learned in the decade of my mom’s dementia that the “white lie” could avoid conflict and soothe situations, but sometimes it was so difficult. As I describe in the blog essays, I assured my mom that she could go home, even when her beloved home had been sold years before. Similarly, when she expressed worry that she hadn’t heard from her sister (who was long deceased), I offered that Marge was just probably really busy. It often felt wrong, but I began to think that when I entered the nursing home, I was walking into an alternate universe where different rules applied. Dementia offers so many excruciating challenges, I agree with the comments that we have to go easy on ourselves…Best to you, Hallie

  12. jensine says:

    so hard for you but it seems we sometimes make things hard for ourselves. I think he just knows you will be back and that is enough

  13. Trisha says:

    You are back soon, just the next day. So, not a big lie, just a little white lie of kindness.

  14. bluebee says:

    You are doing everything you can and one day, hopefully, you will find some peace in that.

  15. I too think ‘lying’ in order to help alleviate stress and anxiety for Anthony and yourself is an okay white lie. There are some who believe that any lying is bad but I think there are other times when a ‘white lie’ is appropriate… to not hurt someone’s feelings for example…. Diane

  16. janeslog says:

    I wonder if time passed as quickly as it does for people not afflicted with illnesses affecting the mind.

    When you tell Ant you will be back is he aware it will be tomorrow or the following day or does he think only a few hours have passed?

  17. You have to do that … it’s the best way. He’s happy knowing you’ll be back soon. You are special, Julie. Love, Gloria

  18. Heather Hugo says:

    Keep writing these heart warming and also sometimes heart breaking posts.When I read them I am in some way walking alongside you and saying “go Jules ,go Jules,”Love you lots!.Heather

    Sent from Molto for iPad

  19. Yes we would say to nanna see you soon or we will be back later as she wouldn’t get upset now of course it makes no difference what we say as she just doesn’t know what we are saying anyway

  20. Vicki says:

    Since when are you lying Julie?

    You actually do go out grocery shopping (some days). You will be back later (well, tomorrow is later isn’t it). And most importantly, your love remains ever present in his life.

    What you are saying is the truth that is understandable to a PD and Dementia patient. Because its missing the exact time you’ll return, is irrelevant to Anthony now.

    I think many cultures may have trouble with our standard Australian expression we use when saying goodbye to someone.

    “See you later” is used more often than “Goodbye”.

    You are saying and doing exactly what Anthony needs at this time, and for that, I’m sure he is very grateful and receptive. Vicki xo

  21. Beautiful! I have been told that it is much better to agree with the patient in their delusions. That it is better for them and they are less agitated. I think a little lie like “I’ll be back soon.” is kinder, easier, and more loving than all the anguish of trying to explain reality to someone whose reality is not ours. I’ve watched family members with dementia patients. I see them trying desperately to explain why they must do something, when in their mind, the patient is clearly elsewhere. I believe it is far kinder and more loving to leave on a good relaxed note.

    Good for you! Don’t worry that you are ‘lying’ to Ants. It’s not as though you are leaving him to go to dinner with another man. LOL I’m so happy you have found this new way to say good bye. 🙂

  22. I think that Anthony doesn’t need to know the specifics; he is happy knowing that you will be back. I am sure that time means something different to him now then it does to you. Hugs Jules 🙂

  23. FlaHam says:

    Julie, It is amazing how we learn to cope, how we learn what is good and acceptable compared to what isn’t. You have made this situation into the very best you can for you and Ants. He gets a smile, a kiss , a hug, and the comment that you will be back in a bit. Even the little while lie is a very good thing,. Sweet lady stay the course. Your courage astounds me. Take care, Bill

  24. I don’t think your heart should be thudding. It should be comforted that you have found a way to make Ants life less stressful and sad. You aren’t lying anyway. You will be back. “Soon” is what he needs to hear, and “soon” is your time frame. I admire you Julie. I think I understand the distaste of “lying”. But PDD altered your time frames and your points of reference.

  25. Ann Koplow says:

    Wonderful post, Julie. The shining truth here is your love for Ants.

  26. tersiaburger says:

    As always I am inspired by your love for your Ants. The truth is too cruel and serves absolutely no purpose. You are amazing. Much love

  27. Krystal says:

    Having worked as a facility manager for years I know this all too well. I would always do my “round” before leaving for the night- more than not saying “see you soon” rather than goodnight…

    There has been much research into this area but the jury is out… meanwhile (in the often raw but real world) therapeutic lying continues to have benefits for both parties.

    You are doing good Julie xx

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