My mother saw sparkly frogs.
She saw little kittens living under her bed. She saw children playing outside her window. All of it was entirely real to her, and I never challenged her.
My mother had Alzheimer's. She died eleven years ago, on November 14.
I'm writing this for you if you're caring for someone with dementia, whether they're at home with you or in a specialist unit.
Being wherever she was
When someone you love sees something you can't, the first instinct is to correct them. "There are no kittens under there." It comes from love. We want them back in our world.
But to my mother, the kittens were there. Telling her otherwise wouldn't have made them disappear. It might only have told her that she couldn't trust her own eyes, or me.
So I sat with her and tried my best to be wherever she was in that moment, whatever she was experiencing. If there were children playing outside her window, then there were children playing outside her window.
Dementia care guidance points the same way. Arguing can add to a person's distress, and if they aren't upset, you may not need to do anything at all.
What can help
Go to where they are. You don't have to pretend to see the frogs. You can simply ask, "What are they doing today?"
Answer the feeling. If something frightens them, comfort comes first. Try, "You're safe. I'm right here."
Play the music of their time. Music-based therapy probably eases symptoms of depression in people with dementia. Even without the research, a song they loved can give you a few minutes together.
Open the photo albums. Try not to quiz them. "I love this picture" is kinder than "Do you remember who this is?" Research on reminiscence shows small benefits, so do it for the time together, not for a result.
Bring home to them. In a specialist unit, take their own blanket, photographs and favorite music. Tell the staff who this person has always been.
Sit with them. You don't always need to talk. Your hand and your presence may be enough.
Please call their doctor if the visions are frightening or if anything changes suddenly. Infection, dehydration and some medications can cause sudden confusion and hallucinations, and these can often be helped.
What comes at the end
We don't talk enough about how this ends. What takes someone in the end is often something else. In my mother's case it was pneumonia. She had been a lifelong smoker, and her lungs were vulnerable.
Other people waste away because they forget to eat, or they won't eat. If that's happening in your family, please hear this. Eating difficulties are a natural part of advanced dementia. It doesn't mean you've failed them.
What I felt when she died
When my mother passed, I had oddly mixed feelings.
There was relief for her, because I believe she was whole again. There was also grief for all that was unsaid, even though I had anticipated losing her.
I'd thought that seeing it coming might soften it. Anticipating a loss doesn't do the grieving for you. Family researcher Dr. Pauline Boss calls the long goodbye of dementia ambiguous loss. Your loved one is here, and yet so much of them seems to be gone.
If you feel relief one day, it isn't a betrayal. If you feel grief for years before they die, and then more afterward, that isn't weakness either. Love can hold both.
And if there are things you want to say, please say them now. Say them in that room, holding their hand, wherever they happen to be that day.
You need looking after too
Caring for someone with dementia is exhausting, and it can be lonely. The Alzheimer's Association's 24/7 Helpline at 800-272-3900 is free, and it's there for families as well.
If you're carrying this and would like someone to talk it through with, I'm glad to do that. I can't treat dementia, but I can sit with you, and that's something I know a little about.
Whatever brings you here, there is a way through.
Jill Lien is a Board Certified Clinical Hypnotist and ICBCH Certified Instructor. She doesn't give medical advice, so please take any health concerns to your own doctor.