Have you ever been searching for a word and it eludes you?
You know it. It hovers at the fringes of your consciousness, but you can't bring it forward. You substitute a lesser word, and feel frustrated because it doesn't say what you want.
That night, at 2:00 a.m., you wake to go to the bathroom, and suddenly the word pops into your head. You feel the satisfaction of finally having captured it, and the frustration of having no one to share it with.
Have you ever been one letter away from building a fantastic Scrabble word? If only I had an "r", I could build a 57 point word. Then a miracle happens, and your partner puts down the letter you are looking for, in just the right space. Your fingers trembling with excitement, you put down your tiles--only to discover you had the spelling wrong.
Have you ever seen someone with dementia struggle for the right words? You think you know what they mean, and you want to supply the word, but if you haven't got it right, saying a word is going to make the situation worse. You see their anxiety increasing, and you wonder, "Should I speak the word or keep silent?"
Words are important.
I am discovering that subtle attitudes can be conveyed in words.
If my bottom line is that dementia is a progressive disease, a tragedy, and as a caregiver, I must ensure the people with this disease are safe and medically stable above all, I will use certain words to
convey this. I will talk of losses, and see behaviours as problems to be managed. I will look at interventions, usually medical, and often psychotropic drugs. I will be kind and caring, and I will make all the decisions.
I know this, because at some point in my career, I have done a lot of these things.
I am learning new words.
Dementia is a "shift in perception of the world."1 The person with dementia has their own reality, and rather than demanding they enter my reality ("You husband isn't here. He died 5 years ago.") I enter theirs ("I don't know your husband. Tell me what he is like. What do you like best about him?") I need to be open and flexible, because at times, they are right in the middle of my reality, and we are talking about politicians and teachers, and suddenly the conversation veers to the left. I am the one who needs to listen and look for ways to participate, not draw them back to "reality."
The word caregiver has begun to bother me, because it implied a care receiver. Am I always giving, and is the person with dementia always receiving? You only have to spend an afternoon with this population to know this isn't true. Many days, I receive far more than I give. So lets call us both care partners. (Did you notice the difference in the title?) We are working together to make care what it should be. Both of us is essential to the relationship, and both of us has something to give, and receive.
Then there is behaviour management. This is a big one when working with dementia. There is a whole list of behaviours (anxiety, anger, wandering, etc.) and other lists of ways to control them. What if I looked at the reason behind the behaviour. Maybe it an attempt to cope, and if I look at the source of the problem rather than the person, the "behaviour" would disappear. Is the person who is stripping in public--too warmly dressed? The woman who is weeping in her room, could it be that someone who was supposed to be helping her was brusque and demanding? Could the gentleman in the hall be wandering because he's looking for the bathroom? Instead of thinking in terms of "behaviours," we need to "conform the environment to the needs of the person." 1
Our words convey our hearts. A person with dementia is not a problem to be managed. A person with dementia is a person. A person who can still grow, be fulfilled, experience life.
My cognitive skills do not determine my value.
In Dementia Beyond Drugs, G. Allen Power uses the example of a resident who did not want to take their medication one night. Let's just say she had an upset stomach, and the thought of putting pills in her mouth made her feel ill. However, she didn't have the words to explain that, so she pursed her lips and shook her head. The nurse writes, "Mrs. P. refused her medication." If I came along and read that, not knowing Mrs. P., I would see a stubborn, perhaps angry, uncooperative person. 2
Here are the insightful words of someone with dementia.
"I suspect that not taking my drugs is my way of saying "NO" to the disease. It's my way of remaining in control of me...
The longer I live with Alzheimer's disease, the less important the pills become to me. The farther along I am in the disease, the more important the pills become to my caregivers. I want them to understand that I don't want to swallow a bitter pill twice a day--nor do I want to be the bitter pill that my caregivers must swallow each day." 3
Now that's an incredible use of words!
1. Power, G. Allen, Dementia Beyond Drugs, p. 78.
2. Power, G. Allen, Dementia Beyond Drugs, p. 84.
3. Taylor, Richard, (2007) quoted in Dementia Beyond Drugs, Power, G. Allen, p. 84.