Wednesday, 24 January 2018
Care Partner Wednesday--Understanding Dementia pt. 2
Words aren't friends for George any more. He used to give lectures, make high-level phone calls, and joke with co-workers in his job as president of a company. Now words swirl in his head, and he can seldom catch the right one. His tongue stumbles and his brow furrows as he tries to tell me what he wants for breakfast.
Language is one of the effects that Alzheimer's and other dementias can have on the brain. People who have suffered from strokes often struggle with expressing themselves as well. We've all had moments when a word escapes us, and we've asked someone to "Pass the do-dad." This isn't that.
"Aphasia is a brain or neurological disorder that affects a person's ability to communicate."1 It can affect not only speech, but comprehension and the ability to read.
Expressive aphasia is what George experiences. The words are just out of reach, and he struggles to find the right one. He knows what he wants to say, and there are times when, miraculously, the words appear, but always after a struggle. And most times, they don't.
Apraxia is the inability to understand a verbal command and follow instructions. "Could you please turn on the light?" The person may or may not know what the light is, but not be able to comprehend how to turn it on, or even what that means.
Motor aphasia is seen most often after a stroke, and is the inability to make the mouth, tongue and lips move properly in order to form words. There are times when therapy can be helpful for people with motor aphasia.
Communication is essential. How do care partners find a way?
1. Relationship comes first. My first task with George was to get to know him, and help him to realize that I was a person who could be trusted. I also got to know his family because they could tell me things George couldn't. George also warmed up to me as he saw his wife and children interacting with me. If you are a family care partner, you already have the advantage of relationship.
2. Remember that communication is more than words. Gestures, facial expression, touch where appropriate, and tone of voice all play a part. Use your whole arsenal to communicate.
3. Relax. It's frustrating for both of you, but getting tense or angry won't help. People with expressive aphasia are more subject to depression and anger because they know what they want to say but can't find the words. You can help by keeping the tone light.
4. Maintain a sense of humour. Laughter can diffuse the tension, as long as it's not perceived to be directed at your loved one.
5. Be patient. One of the most difficult issues for a care partner is knowing when to help by supplying a word. There are times when this is appropriate, times when you will get the word wrong and make it worse, and times when the right thing to do is just wait. Practice helps, but you will never be right all the time. Do your best.
Have you ever wondered what it would be like if everything you thought appeared in a little bubble above your head for all to read?
Another issue many people with dementia struggle with is the removal of the filter that most of us have to keep our thoughts in our head and not coming out of our mouths. It can cause all kinds of embarrassment for a care partner.
I remember a resident who lived her life as a minister's wife. Her husband was large and domineering, and I imagine her thought life was colourful, but as a good minister's wife, she kept it all inside. She developed dementia, and after he passed away, her filter disappeared as well. Her favourite activity was to sit in a small alcove area and make comments about those who walked by. I sometimes grinned, thinking that all the repressed thoughts over the years were finally finding expression. One day, a large family member walked by, and she exclaimed in a loud voice, "Well, that's a big man! Will you look at the belly on him?" The expression on the man's face was priceless.
This is another situation where a sense of humour is indispensable. It doesn't do any good to reprimand your loved one because with the lack of filter comes lack of comprehension. They have no idea they've said or done anything wrong and if you confront them, they will insist you are wrong. There may be times when a discreet conversation with the other person will help, but for the most part, try to see the humour and move on.
As a care partner, it can sometimes be tempting to consider all these changes and despair.
"He's not the man I married."
"She's not the wife I knew any more."
"I don't recognize my mother."
We are told over and over that dementia is a tragedy that steals the best part of our loved ones away. Don't fall for this lie. The disease will progress, and there will be changes, but they are just that--
changes. You aren't the same person in most ways as you were in your twenties, are you? If you are over fifty, you probably can't and don't want to do most of the things important to you then. You changed. People change. With dementia, some of the changes are accelerated and more challenging, but the person inside is still there. They haven't been stolen away, as one misleading poem circulating on Facebook says. https://www.alzheimers.net/2013-08-05/do-not-ask-me-to-remember-poem/
Celebrate your loved one. Celebrate who they are today, and every day you have with them.
CLICK TO TWEETCare Partner Wednesday--Understanding Dementia--pt. 2