Sunday, October 17, 2010

Language and its impact

I've been reading a book about a couple's journey through alzheimer's disease called 10 Thousand Joys, 10 Thousand Sorrows. It is an unusual book as the person, the husband, with Alzheimer's has always been a lover of language. Poetry and prose had been his life along with his wife's as well. They taught, wrote and enjoyed the nuiances of language. As his disease progresses in the story he is able to express his feelings about his confusion, his aphasia, his disorientation and his angst about losing language.
This is unusual because most who get Alzheimer's are not linguists or poets . They can't express these feelings easily if at all. Do they suffer alone? What can we as caregivers do to help? Reading the book gave me insight into what it might be like to know you are losing your cognitive abilities. It gave me more empathy towards those who cannot express their feelings. As caregivers we need to be sensitive to the struggles to understand that the person with the disease must have. One patient said, "I go to talk and words run away and hide." As I read this book I became anxious and sometimes felt jealous anger about his being able to express his confusion,fear and frustration. I remembered all the spouses who try to understand but can't what their partner is experiencing.Oh that all could do that; caregiving might take on a more shared experience. As it is, most caregivers complain of missing conversation, companionship of their loved one. Caregiving is a lonely existence. We need to slow our pace to match theirs, try to 'read' expressions on the face, and perhaps guess what the person is feeling. This is hard work. We need to reach out to the person, not get stuck in the label Alzheimer's. Maybe we'd have more of a chance to have that shared journey and not be so lonely.

1 comment:

  1. You seem to be talking about a most profound aspect of the difficulty of AD- the gradual loss of the ability to communicate and connect to another human being. As a care partner, I am keenly aware of that desire for connection. I'm happy to see you giving language to this area so we can all talk about it and share our techniques. Naming the struggles we witness is important. Thank you,
    Penny Peterson, LCSW

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