When I am visiting at the long-term care facility where my mother resided, I am often privy to conversations between family members who are visiting their loved ones.
I am sometimes saddened to hear how families communicate with their loved ones who have a dementia. As I have journeyed down this road, not once, but twice, with both parents who had dementia, I recognize the underlying tone in their voices and in their words: Fear!
When we speak with compassion, our voices and our words are filled with care, kindness, and understanding. We may carry on a conversation with someone with dementia and the conversation is lost; the words are not resonating with the person with dementia. Once we understand this (that often the person struggles to follow your words) we can make changes in how we talk to someone with a dementia.
I call it learning the new Alzheimer speak.
People with Alzheimer’s or a dementia-related disease lose their ability to speak and understand language because their brains are damaged. One Alzheimer expert once coined the irreversible damage to the brain as “their brains are broken.”
If one visited a person with cancer and the cancer had travelled to their spine and into their bones, would one ask them to lift a heavy object, knowing that the person would not be able to do that? And knowing that the person would be in great pain? Obviously, not.
But in ignorance of the disease, many people ask people with Alzheimer’s or another dementia to perform insurmountable tasks. When people with Alzheimer’s have damaged areas of the brain… memory, attention, alertness, communication, judgment, initiative…all are affected (and many times, severely lost).
In understanding the disease and its symptoms, we can let go of our expectations and adjust to their new reality.
When we recognize that our loved one cannot understand nor follow our conversation (too many words to understand; person has lost his train of thought; cannot organize the words properly), then we can learn to adapt and adjust how we converse.
Here are a few tips for the family member:
- remind the person who you are
- state his name (Hello, Dad; its me, Marilyn.)
- when people walk into the room, help your loved one to remember them – say, “Oh, Dad, here’s Uncle Jack visiting you.”
- speak slowing
- use fewer words
- smile while you are talking (our loved ones recognize and sense loving energy)
- get his attention: look into the eyes of your loved one (make contact; you might have to lean in or stoop or kneel if person is in a wheel-chair)
- if you are asking the person to do something, break the instructions into small pieces
- be very clear and precise: state the steps of the task – one step at a time
- allow the person to hear you and understand you
- ensure the person is looking at you, and is not distracted
- do not talk over him (when speaking to others in the room, do not ignore your loved one)
- avoid answering for your loved one (it’s easier and quicker to answer for them, but avoid that. Instead, turn to your loved one, and repeat the question slowly and clearly. Wait for a response before you chime in.)
- avoid using vague words or sentences (be precise); when my husband instructed my mom to jump into the car…she would look puzzled. We realized that she assumed that he truly wanted her to literally “jump in.”
- repeat important information
- ensure your loved one understands the words that you have used (my mother did not use the word “hallway,” instead, she referred to the hall as “the street”)
- become familiar with the person’s new language (they often substitute words and make up new words for everyday objects)
- stop and listen (allow the person to respond)
- don’t take things personally
- ignore wild stories, or fabrications (your loved one might suffer from delusions or hallucinations or depth perception – it’s real to them) or, as my sister used to say, “Go with the flow. If Mom sees a dog, say hello to it.”
- offer plenty of reassurance
- stay calm (try not to be emotional…our loved ones pick up on all of our energies, especially emotions)
- above all, be patient and LISTEN (stop talking)
Learn to use their new language so that you can communicate more effectively. When I wanted to visit the sitting room with my mother, I substituted her words for that room which was “the place at the end of the street.” She understood that.
When I wanted her to enjoy the entertainment in the main activity hall, I would invite her to “the big mall where people sing.” Those were her words. She understood that.
She called the coffee or social room, “the bar over the river.” In her mind, she was correct – the coffee-room was a bar for an hour each day in the afternoon. She didn’t go to the bar, but she understood that drinks were served. She also referred to that area as “over the river” because the area was down the hallway and around the corner…for her, far away down the street (the hallway). Ha! Are you confused yet? Well, imagine how persons with dementia feel? They are confused and bewildered because everyone around them doesn’t understand what they are saying. They think they are making sense, but when they watch our faces…they realize (and later, sense) that we are not understanding.
That must lead to deep pain and fear. No one understands me. Worse, people now ignore me. They act as if I am not here.
When we become informed (and information is key!), we become more compassionate. We become kinder. We act with more love and understanding and that can make a difference in the world (and reality) of the person with a dementia and in your own world. This leads to acceptance.
When we can open our hearts and minds to accepting that our loved one has Alzheimer’s or another dementia-related disease, we make space for love, understanding and compassion; more importantly, we can slowly let go of the fear. (Remember, we do not have to like that our loved one has a dementia. Just accept it.)
Fear! It is behind every sharp and hurtful word that I hear at the long-term care facility where I volunteer. Fear is behind the unspoken, but dismissive acts and shrugs I witness every day. Fear is behind the family member’s voice rising, getting louder and louder with frustration. “Mother, stop that. You are making a fool of yourself.” Oh, how those words hurt. It is so painful to listen to, and more painful for the resident who doesn’t understand. (And just so you know – the staff, volunteers, and many family members at a long-term care facility understand the symptoms of a person with a dementia – so when someone speaks abruptly to a resident, that reflects poorly on them, not the resident!)
What’s truly sad is that we miss out on a thoughtful and loving visit with our loved one when we allow fear to sit down in our conversation.
When we can let go of our fears, and change our energy to loving energy when we visit our loved ones, everyone wins.
Our loved one recognizes the loving energy. That alone can transform a visit from ordinary to extraordinary. Just loving energy. Remember: The person cannot understand your words or your language, but he does recognize your energy.
Let us all try to understand this disease and transform our expectations and our energy…to compassion and kindness. Because we are not here to heal our loved ones, nor are we here to take away their pain and frustration. We are here to do our best – and we do our best when we visit (and communicate) in love and in understanding. That is what our loved one wants from us…just love.