When someone with Dementia Dies

Everyone dies.  Everyone you know will lose someone before they die.  If you are their friend, you’ll have to find something to say.  Usually, our parents die before us. How hard can it be to respond appropriately when something so common occurs?  It’s a delicate moment.  It could just be a social formality, or it could be a profound expression of empathy and support. 

A very safe thing to say is, “I’m sorry for your loss.”  It’s not elegant, but it fills the gap.  A person who doesn’t know you very well can say this if awareness of your bereavement comes up by accident.  You’re cancelling the milk delivery.  You’re taking a complete wardrobe of clothes to the charity shop.  You’re putting the “For Sale” sign up in your mum’s front garden.  Any passing stranger can say, “I’m sorry for your loss.”

“There are lots of lovely things you might do or say, but can I beg you not to tell anyone, “It must be a relief.”? Don’t even think it.  Just don’t.  Let me explain why if that’s not already obvious to you.”

Offering condolences

Offering condolences isn’t just about saying something.  If you are a close friend, sending a handwritten note, or another act of kindness like cutting the grass in the front garden around the “For Sale” sign…any of these things can make a difference.  You can try to remember words that might have the capacity to provide comfort and support.  It’s not just a social nicety.  You want to be sincere.  If you are stuck, you’d be amazed at the good ideas you can get if you google it off the internet. It’s not hard.

But here’s a special message if you are talking to someone whose loved one died of dementia.  There are lots of lovely things you might do or say, but can I beg you not to tell anyone, “It must be a relief.”? Don’t even think it.  Just don’t.  Let me explain why if that’s not already obvious to you.

If there is ever a time when you actually think that your friend’s mum or dad or anyone who is ill, would be better off dead, you probably should keep that thought to yourself. If you think that the way people are treated is worse than the way we’d treat a dog and the patient should be “put down”, just keep quiet.  I probably don’t need to say this because, to be honest, I don’t often hear anyone telling a family member, “Why don’t they/you/the NHS just kill your loved one?”  No, the problem starts after the bereavement.  People feel free then to say, “It must be a relief.”

Stop and think what you are saying.  You are suggesting that it is better that their mother or father is dead, as if that’s a comfort to the person you are trying to comfort.  I’d like to reposition your response if you’d allow me. You think that what the person went through might have been unbearable for them or their family.  (You are only entitled to have an opinion on that if you did everything you could yourself to help them, but that’s another blog.)  You are making this about how you, yourself, imagine you would feel in similar circumstances.  But you are forgetting that this person has just lost their parent.  They lost them after a long illness and they might have been in a bad way, but they were alive.  Now the family have got a huge change in their life, far greater than someone whose parent was self-caring up to the last moment.  A role built up over months and years has now collapsed. What are they going to do now when they wake up again and again in the night worrying and caring and then remember each time that the person is now dead? It’s not as if they are going to celebrate.

It's not a relief.  People who cheerfully say they’d rather die than suffer the difficulties that go along with dementia sometimes translate that into the idea that anyone else would rather die, or wish their parent dead.  You can think what you like.  Just please don’t say it.   Stick to, “I’m sorry for your loss,” and do what you can to help the person get a new normal way of life with their almost unbearable burden of grief which could not be lightened by telling themselves that life is easier now.  It could be a long time, if ever, before that is true.