The other day, I had a conversation that is unfortunately common when people find out what I do for a profession.
It went something like this. “So Caregiver Cards, what’s that?”
I respond, “Caregiver Cards is a picture-based, visual-support product that I created which helps caregivers to communicate easier with persons living with Alzheimer’s, dementia, or memory or speech disorders.”
“Oh.” he responds “My mother has Alzheimer’s disease. She lives in a care home.” Small talk about his mother continues, and then the statement that I hear so often is delivered.
“Mom, don’t you remember you have a disease that makes it hard for you to remember who I am?” (In response to when the son visits mom and she is unsure of who he is.)
This is shortly followed by… “Mom, don’t you remember you sold your car to your granddaughter.” (In response to Mom constantly looking out the window asking where her car is because she has to get home.)
I listen, non-judgmentally, and then ask, “What is your Mom’s response to when you remind her that she has a disease that affects her memory, or when she doesn’t have a car any longer?” He takes a moment and then states, “Most of the time she doesn’t say much, but sometimes you can see that she does remember she has Alzheimer’s.”
I was able to share a little advice about better communication techniques during his visits with Mom, like not reminding Mom that she forgets, and addressing the underlying feelings of anxiety and fear. However, advice was not what this individual was looking for. He simply wanted to share that we both had a connection to Alzheimer’s disease. He wanted someone to listen to him.
Hmm. I have to ask myself, What is the point,of these conversations that he is having with Mom? For whose benefit is it? While having the best intentions, this family member is more focused on gaining moments when there is clarity, not acceptance of the disease and it’s impact on Mom.
His focus is seeing when Mom is “Mom” and not “Mom with Alzheimer’s.” I sympathize with this “coping skill.” Alzheimer’s Disease is tough for everyone involved. It’s okay to say “This is hard.” It is difficult! What’s interesting is that what he wants and what his Mother wants are not that far removed. They both want someone to listen!
The most commonly recognized symptom (and one of the earliest to manifest) of Alzheimer’s Disease is an inability to acquire new memories and difficulty recalling recently observed facts.
Alzheimer’s does not affect all memory capacities equally. Episodic memory (memory of autobiographical events) is the first to be affected. Short-term memory, or working memory, (the ability to store information in the mind in an active, readily available state for short periods of time) follows next. Semantic memory (memory of the meaning of words or facts in the world) and procedural memory (how to perform tasks and skills) are lastly affected. Sourced from John Hopkins Medicine.
Do they remember that they already told you, or what you told them? Can they remember what was already said? The answer is NO to both.
Allowing for reminiscing is important when we communicate with persons living with Alzheimer’s and dementia.
However, I want to address what we can learn from this; what words we can start saying that promote connections, conversations, and understanding, not what points out the shortcomings related to dementia which can lead to embarrassment, frustration or anger.
The phrase, “Tell me about it” or “Tell me about the time…” should be found in every caregiver’s survival kit. It should be waiting at the tip of our tongue, whenever we visit our loved one. It should feel natural and automatic.
Why? Quite simply, because it encourages communication! The person with Alzheimer’s wants to talk. They want to feel comforted, safe, and assure. Mostly, the want someone to listen.
How many of us, when we are going through a stressful time in life, or are faced with a dilemma/decision, just need someone to listen? We don’t necessarily need the answer. We really just need a moment of someone’s time so that we don’t feel so lost or alone in our choices or in this world. The same is said for someone living with Alzheimer’s.
Mom wants someone to listen to her.
If you can remember this. If you can share empathy and compassion, treating the person living with dementia, as a “person first, who happens to have dementia,” then asking them to “tell me more” will come more naturally. You will be a friend in their eyes. Even if they may not remember who you are most days, I can assure you that they will remember the feelings they get when you are around, and that is one of care, of friendship.
Another example of ways to improve communication, that I noticed from speaking with this person, is to not argue with his Mom’s reality. Support her reality. Validate her feelings. It lets them know that they are not alone and then you can redirect them into another thought.
For example “It sounds like you really want to go somewhere.” “Where do you want to go?” Once they tell you where it is, than they’ve given you a great opportunity to engage in the “tell me about” approach. “Tell me about home.” “Tell me about Mom and Dad.” Then ask for one of their favorite stories about that person or location.
You are allowing them to reminisce.You are connecting. These moments are important for you to listen and remember their story for them. Because at some point in the disease they will forget how to share these stories, and it will be your privileged honor to remember for them.
Barbara Worthington is the founder of memory cue card site caregivercards.biz