A mother of a friend of mine was in mid-later stages of dementia. My friend, Pat is a very logical, black & white, math-minded person. You want her by your side when planning a battle or cross-checking intense math work. When she would visit her mother, her mother asked if her parents were coming later that day. Her mother was 96 years old. And Pat would calmly tell her that no, she was 96 and her parents had been dead for a long time. And Pat’s mom would start to cry. We were discussing this over a cup of tea and I told her she had to stop telling her mom her parents were dead. She told me that she just didn’t feel right lying to her mom. I said, “I get that BUT every time you tell her that, they die again for her and she is experiencing fresh grief”. Pat is bull-headed and insisted she could not lie. We came up with the phrase,’ no, unfortunately they can’t make it today, but I am here’ and follow up with a conversation change (that is a nice sweater, look how pretty you look today, etc.). Not a lie, but it let Pat start to see she needed to be where her mom was.

Be where they are, is such an important concept for being with people with dementia, hospice care or honestly, life in general. We are looking for connection over correction. No one likes to be corrected on small things (you tell me you had fish for dinner and I jump and say I believe it was salmon, how does that help anyone?). Much less if you know you are struggling with certain things mentally and physically, fearful or maybe confused, it doesn’t help if I remind you of all the things you are struggling with. We need to make the environment more I am there and you are safe. Silence is so much better than correcting the accuracy of the person’s statement.

Dementia is a collection of symptoms, an umbrella term. It includes Alzheimer’s, vascular, frontal lobe, Lewy Body and others. I consider all of these diseases. And that is an important distinction and sometimes so hard to remember in the moment. It is the disease, not the person. Alzheimer’s is known to make people suspicious and can mess with their visuospatial skills. Nothing personal, just the disease.

Few things to remember (if you can) from a handout I received in training:

• Conversing vs Interrogation
  • Don’t start with, do you remember me? What did you have for lunch?
  • Instead lead with, It is good to see you, may I sit with you? Or that color looks so nice on you.
• Tone and Speed of Speech
  • Clear, calm voice
  • Try to limit rushed speech or harsh tones
• One idea at a time
  • I used this when my son was small, the idea of giving just two choices, both of which are fine. When you say things like, what do you want to do? It is too overwhelming. Choice of two, would you like to stay here and chat or go out on the patio and chat? (visual prompts might also help)
• Rephrase
  • The whole world needs this one. If you ask a question and there is no response or you can see it is not understood, do NOT repeat the question but rephrase the question. And for the love of a chicken, do not repeat the same question, but louder.
• Active Listening
  • Whole world needs this one also. Listening is more than hearing. You do not need to be thinking of your response while that person is still talking. Really listen to them. Silence is fine while you think of a response. That is interesting is a fine response to say as a placeholder while you really think about what to say.
• Give Time
  • It takes people with dementia longer to process what you say and process what they want to say. I try and use a ten rule with my Uncle. I mentally count to ten when he is looking for a thought or a word in his response. Paying attention his body language to see if he is getting overly frustrated or can’t find it. After that and especially if he is getting agitated, I might supply something a bit off. Say he is looking for the word combine, I might say, oh like a tractor? For now (where he is in the disease) that is sometimes enough to trigger the correct word. And he will say, no the combine.

As the disease progresses, you may hit the point where you loved one does not recognize you. And that is devastating. I wish I had a magic way or advice to make it less so. I can remind you it is the disease and not your loved one, but it is still going to break your heart.

As hard it is, this is where they really need you to be where they are. They may not be able to put a name to your face but they WILL feel your love, your calm and your support. And maybe, just maybe, if the stars align you might get one tiny breeze that makes the curtain part and they recognize you. There was one point when I was sitting with my mom and she looked up right at me and called me by my first and middle name (you know the way moms do when they are trying to get your attention or you are in big trouble). I replied, yes mom, I’m here. She nodded and said, good girl. And that was it, the curtain fell back.

The lecture ended with a reminder that every person needs the following every day (care receiver and care giver):

• To be able to be helpful and appreciated
• Leisure time
• Self care
• Rest and restoration