LESSONS FROM HOSPICE: Liar, Liar…

There’s a big difference between the “lies” that heal, and the truths that hurt.

I have a friend who took care of her husband, who had Alzheimer’s, until he died a year ago. It was very hard for her, especially since both of them worked closely with families who experience loss, death, and devastation.

You can gain a lot of insight working with others on this hard, sometimes lonely, journey at the end of life. But you don’t get a free pass just because you’ve witnessed this journey with others. In fact, it seems like it’s even harder, if you’re ‘in the field’, when it happens to you. Maybe we feel like we should know how to ‘do it perfectly’. But when it happens to us, there’s no such thing as ‘doing it perfectly’. There is just ‘getting through’.

Caring for a person with Alzheimers, and other cognitive issues, is especially difficult. Their view of the world, their resources for dealing with it, are changed drastically. The old method was to constantly fight for reality–yours! Maybe, with enough reinforcement, we could ‘force’ them back into our world. Tell them the same thing over and over and over, and eventually, they’ll get it.

Sadly, this approach does not work. In fact, it creates more stress, more anxiety, in the person.  People often still have an emotional/social self–they sense they are ‘doing it wrong’. When they are constantly reminded of this, things go downhill pretty fast. Anxiety leads to agitation, anger, and even agression.

Current strategy is to ‘go along’ with the client. “I’m supposed to be at work!” they exclaim. “I have to get ready!” You may choose to ‘go along’–“Sure! But we have to have breakfast first.” “Or, “Sure, we could do that! What would you like to wear to work today? Let’s get dressed. OH…you might want to take a shower first!” “Or you gently ‘remind’ them that today is a work holiday. So maybe they’d like to go for a drive in the country instead?”

This can be difficult, though, because it doesn’t feel ‘honest’. The hardest part of caring for clients with cognitive issues? “The lies!” my friend exclaimed. “Our relationship was based on trust, and respect, and honesty. And then, to keep him calm and at ease, I had to lie to him, over and over and over, every single day!” She felt she had worn away the last thing that connected them, by lying to him.

The best advice I can share with you today is to point you to a person who embraced this situation himself, and wrote about it.  For insight into these strategies, I highly recommend the website Alzheimer’s Reading Room. Bob DeMarco went there and back again, into the world of Alzheimer’s while caring for his mother.

His insights are filled with integrity, insight, and simplicity. He stresses that to create a new, rich relationship with your loved one living with cognitive issues, you need to go to their world. We need to look at their point of view, and understand where they’re coming from. The person we used to know is changed, due to major changes in their brain and cognition. We cannot hold them to who they once were, to what they could have been. We have to work with who they are, and what they’re doing now.

We tend to think in terms of absolutes: Good and evil. Right and wrong. Truth and lies. Even the grey areas of white lies and fibs can feel overwhelming when you have to practice it over and over, day after day after day.

Alzheimer’s is not a world of absolutes. For a person in this world, it is a place of ever-changing reality, as memories fade, as dreams flood into waking time, as it gets harder and harder to understand what’s what.

DeMarco says, over and over: You have to go to their world. You have to see through their eyes, understand through their experience, work with their fears and anxiety.

I was going to go into a big long spiel about lying vs. going to Alzheimer’s world, and kids and Santa Claus/Easter Bunny/Flying Spaghetti Monster, but there’s just this: When we talk to kids about death and dying, sickness, bad accidents, we frame it so it meets them where they are. A four-year-old grieving for a dead pet needs something different than a 12-year-old, etc. The same when we are caring for/living with/working with people with cognitive issues.

A friend told me how she struggled what to tell her dad, who had dementia, about her mom/his wife, who had just died. “When he asks where she is, do I tell him the truth”, she agonized. “Then he reels with the shock and weeps. Two hours later, he asks me again. I don’t want to lie, but telling him the truth is like torturing him with harsh sorrow, over and over, and over again. It’s new to him every time.”

Eventually, when he asked, she told him she (her mom, his wife) was ‘away’. No, no one was sure just when she’d be back, but she was okay, and sent her love, and they would see her again ‘in awhile’. This reassured him, until the next time he asked.

This went on for months, until one day, he asked her hesitantly, “I have a feeling Mom isn’t coming back. Am I right?” She then told him yes, but again, gently, simply agreeing. And reassuring him that she (the mom) was okay, they would be okay, and that she (the daughter) was there for him. He wept, but was not devastated. The question faded gradually away.

Understand they can no longer be in our world, but we can visit them in theirs. Have compassion. Understand there is a difference between lying to manipulate, to gain something you don’t deserve, or to avoid consequences of your actions–and meeting them where they are, with love, with patience, with respect and kindness, in their world.

If your religion believes that God would never give someone more hardship than they can handle, then understand a person with dementia cannot handle hardship like they used to. Accommodate them.

It’s not easy–it never is.  The role of the caregiver can be lonely, and already so very, very hard. So please don’t agonize over having to ‘lie’. What you are really doing is not hurting someone  who cannot understand, or process, the hurt. The ‘lie’ you tell to create peace in someone’s heart who has no way to heal–to avoid giving them pain they cannot protect themselves from–that ‘lie’ is actually kind, compassionate, and healing.

So be kind to yourself, too. The only people who would judge you, just don’t know. (Yet.) The ones who know? Believe me, they understand. And they are supporting you in spirit, every step of the way.

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6 thoughts on “LESSONS FROM HOSPICE: Liar, Liar…

  1. Well said Luann! I have a son with Schizophrenia and I have had to re-phrase and re-think my exchange with him. Everyone thinks I am the caregiver (which I am)… But when I realized how much he Teaches me… I quickly changed my perspective and now I consider him a caretaker for my Spirit. He is not the little boy I once knew. My personal growth now demands even more love and compassion than I ever thought possible. These diseases force a creative outlook and practice. When we embrace that… We find a separate Peace. Thank you for your insight and guidance.

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  2. I have not yet been in a situation where I am the primary caregiver to a parent, but I think about it often. Your words are full of grace, beauty, and insight, Luann. Thank you for offering us a way to gently ease the suffering of loved ones. I am saving this article in case I or someone I know need it one day.

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  3. Luann, your thoughts are so true and kind and authentic.I lost my precious mother to Alzheimers. She was terrified, aware that nothing was as it should be and that she had no control. It is agonizing for the family, overwhelmingly sad and unfair and painful. Thank you for sharing these compassionate thoughts.

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  4. So true Luann! I worked with Alzheimer folks in another job. In the hospital sometimes the elderly would behave the same way on pain meds. If a lady was getting agitated with the spiders on the wall as I was changing her bed, I would assure her that I would sweep them off the wall with a broom as soon I was was done taking care her. She was fine after that. End of subject. It’s not lying. It’s an act of love where their world is what’s most important at the time. It makes them feel better. They sometimes mirror our behavior, so being quiet and gentle goes way further than yelling, getting angry or trying to tell them they are wrong. And all this can make it a lot easier on the caregiver. This is not to say it’ll all be smooth sailing, but it will help.

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  5. Very well said. As someone who’s BTDT, we used to make it a game of “how many different ways can we respond to the same question asked 10 times in the space of 30 minutes”. We would never be cruel, preferring to make Mom laugh with our answers. Right up to almost the end, we had a very loving relationship going on, just totally different than the one we’d had for 50 years before. As for anyone who wanted to judge our care of Mom, we also just said “come back and tell me that after you have to care for someone with dementia”.

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