My Treacherous Lie: Dementia, Death and Deception

Is it OK to deceive someone who has dementia? The general view seems to be yes, if it helps avoid unnecessary distress, and is in their best interests to do so. But how do you assess when that is? One major deception has been troubling me…

Concern for family members

On a Sunday afternoon recently, my mother was agitated when I arrived at the care home. She was worried about my siblings, Christine and Tudor; the former lives locally and the latter died aged 31. Mum hadn’t mentioned Tudor in a long while.

I reassured her that Christine was on holiday and she would visit in the coming week. I said I wasn’t sure about Tudor, I hadn’t seen him. Mum was worried that maybe something awful had happened to him. I reassured her that he was fine, but was never great at staying in touch. I said we would know if something had happened, as Christine was in touch with him. She was satisfied with that explanation. Then she moved on to her parents, wondering if I knew where they were.

Normally, I go quiet when she mentions her parents. After a while, she usually remembers for herself that they passed away, and although upset, she can move past this. That Sunday she was waiting for an answer. I mumbled I wasn’t sure where they were (which is technically true!). After deriding me for not knowing much, and me concurring, we moved onto other topics. No great trauma. Phew!

The truth hurts

I learned the hard way that it is kinder sometimes not to confront my mother with the harsh truth. In 2015, shortly after her sudden descent into dementia and following Christmas together in a country cottage, I told mum we would be going back to the care home the following day. I now realise she had no memory of the care home she had lived in for the previous three months, so this was unimaginably confusing and needlessly upsetting. Panicking she asked for Haydn, her husband of 50 years. I didn’t know better than to gently tell her that he passed away in 2012. Although she was with my dad when he died, she received this information as if for the first time. Intense emotions of shock, grief and pain, were followed by anger and recriminations. All understandable in the face of such devastating news, and sheer bewilderment at the situation she found herself in.

Meeting people in their reality

Later I learned that it is important to meet people in their reality. Following the Christmas episode, this advice made complete sense to me.

So instead of saying we were going back to the care home, I could have just said we were going ‘home’. That would have averted a very difficult twenty-four hours, during which time she was extremely anxious about going to a place she thought was completely unknown. She was terrified she wouldn’t be able to cope. In reality, when we arrived at the care home, Mum immediately relaxed as she recognised familiar faces. We were greeted enthusiastically by staff and other residents, all of whom made a huge fuss of her. Mum felt instantly at ease.

Nowadays, I don’t have a problem with deception if it reduces mum’s anguish. In fact, I have taken to it like a duck to water, dropping in white lies all over the place, even when it’s possibly unnecessary. For example, I often tell her, “You don’t have to eat that if you don’t want to. It won’t be wasted”. The latter part of the statement is untrue because it all goes straight in the bin. Mum hates waste and the care staff give her more food than she wants, so this white lie enables her to eat what she wants, and no more.

Sometimes I tell her the truth and regret it. I recently shared some news about one of her friends who was diagnosed with a progressive disease. Mum was instantly very concerned and upset at the news. However much I improved the friend’s prognosis, and invented new medications that ensured he suffered no ill effects, she continued to dwell on his plight for the next hour. I don’t know what I was thinking!

It seems obvious that I should not have shared this news. But it is not always straightforward to know when to deceive and what to withhold.

Truth and lying in dementia care

Because caregivers, both professional and family members, are frequently faced with difficult decisions about when it is necessary to tell a white lie, this topic is fraught with ethical dilemmas. These moral issues were explored in an Inquiry into Truth and Lying in Dementia Care by the Mental Health Foundation, funded by Joseph Rowntree Foundation. According to this report almost all (98%) professional carers have admitted to telling untruths to people with dementia in their care.

The inquiry, which took evidence from people living with dementia, their carers and academics, concluded that the starting point should always be to tell the truth, unless it is known that this will cause unnecessary distress. “One should always start from a point as close to whole truth-telling as possible – always underpinned by respect and kindness towards the person with dementia – and if this is causing unnecessary distress, move on to a response that might include an untruth.”

Ming Ho, a contributor to the inquiry as a daughter and carer of a mother with dementia, concludes in a response to me on her blog post, “What I have learned is there is no one “right answer” …. Everyone’s experience changes through stages of the dementia journey and from moment to moment. We all have to negotiate each moment and phase as it comes. So whatever works for you and your loved one, is the “right thing”.”

Withholding news about death of sister

When mum’s beloved only sister Joyce died last December, my sister and I decided not to tell her. We thought she wouldn’t remember anyway, given that she forgets that her own parents have passed away. Why cause unnecessary distress?

And yet….we denied mum the opportunity to attend her own sister’s funeral, to grieve, to say goodbye, and to reconnect with nieces and nephews, and their families. Was that wrong?

From left: Joyce, Bill (baby brother) and June in 1947

When mum was a child, Joyce was the older sister that always looked out for her. Now, whenever she is feeling vulnerable, mum wants to see her. To cover up the initial betrayal we have to tell more lies, “We’ll go visit her this weekend,” and “Yes, we’ll ask Joyce when we see her”. We might have decided to use these smaller untruths anyway, but now when I do so, I am haunted by the thought that my mother never had the opportunity to say goodbye.

Not easy judging unnecessary distress

The ‘Inquiry into Truth and Lying” concluded that: “Judging what is ‘unnecessary distress’ is no easy task. It will depend on the person and their history, the carer(s) or practitioner(s), and the exact circumstances of the situation.”

How can we ever really know what is ‘unnecessary distress’? If I could roll back the clock, we probably would have told mum about her sister’s death. We could have planned it sensitively so that she learned about it just moments before the funeral, and then stayed with her the whole day until she went to sleep.

After all, loss of loved ones and the inevitable anguish and grief that follows, are part of life. Strong emotions around such significant events is what makes us human. In hindsight, I realise I shouldn’t have denied my mother the right to mourn her own sister’s death, just because she has dementia.