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.