Diane Ackerman: "One Hundred Names for Love"
http://thedianerehmshow.org/shows/2011-04-13/diane-ackerman-one-hundred-names-love
Author Diane Ackerman
Toshi Otsuki
When writer Diane Ackerman's husband of 35 years suffered a massive stroke, he lost his command of language. In the beginning, he could only utter one syllable, "mem." And for Paul West, a writer, poet, and professor, that was a devastating blow. Over the next six years, his wife refused to give up hope. She saturated him with language and never left his side. Now Diane Ackerman has written about the experience in a new memoir titled "One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing." In it, she shares the touching story of their marriage and explores the role of becoming a caregiver.
Guests
Diane Ackerman
author of "One Hundred Names for Love;" "A Natural History of the Senses;" and "The Zookeeper's Wife"
Related Video
Diane Ackerman talks about her husband's stroke and her new book on their life together afterward:
Read an Excerpt
From One Hundred Names for Love. Copyright 2011 by Diane Ackerman. Excerpted by kind permission of W.W. Norton & Company.
Comments
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This was a wonderful segment and as a speech-language pathologist I was especially interested in this dialogue. I will likely ask our local stroke group if they'd like to listen to the podcast at one of our upcoming meetings.
I would like to add a small caveat to Ms. Ackerman's advice and perspective. In the spirit of what she said about each patient being unique and needing their rehabilitation to be tailored to their individual needs, I'd like to suggest that not all patients would respond well to an intensive "language bath" or intensive bombardment with language. Some aphasic stroke survivors have difficulty tolerating language, become very distressed by trying to watch and follow movies, get extremely stressed in restaurants or places where there is too much conversation going on around them, and on and on. One person related to me that she did not like her former students visiting because they didn't know how long to stay and she became stressed with trying to sustain conversation.
More points (split due to length)
Some caregivers simply can't get the knack of how to facilitate language with a loved one and due to personality characteristics end up upsetting rather than helping the loved one as they try to help them talk. Sometimes they can learn to do better with a therapist guiding them, but sometimes it's best to leave the therapy to the therapy situation and stay with very simple limited activities at home by the caregivers. I can recall one family member with a very negative attitude that kept complaining that the stroke survivor spoke "so good" for me the therapist but just wouldn't do it for them, as if it were the survivor's fault. It was really their negative nonfacilitative style that I was unable to change that was causing the problem.
I do urge survivors and their families to seek out quality services and if the therapy services seem canned and routine, look further. Often home health is more personalized. Try to find therapists that individualize and tailor to each patient--that really should not be as unusual as Ackerman found, it's what therapists are trained to do. I was trained in the mid 70's and functional, individualized therapy was promoted then and still is--it's just that it is often easier to do canned therapy routines because it fits in what payor sources look for in reports when they authorize payment, and sometimes it seems easier in terms of planning. Personally, I can't stand to do therapy that way and think it is easier to let the patient take the lead and let me know what they want to do in therapy and how they want to interact. Some love technology and some hate it. Some want to do worksheets and some want to converse about big ideas. Often I am eclectic and blend some structured activities with functional activities. But then I also unschooled my own children K-12 (now young adults) and I let them guide their own educations too.
last point---I would also like to add that there is technology available, specifically Lingraphica that I am familiar with, that allows patients with aphasia to communicate with a speech-generating device. It allows them to practice language at their own pace and as much or as little as they want. I have recently experienced it with a patient where the caregiver had been very frustrated trying to help the patient talk at home, and within a week he was imitating and initiating using words from the Lingraphical laptop at a very high rate. This is a very expensive device but is covered by Medicare and some Medicaid (depends on state) and may be covered by some private insurance plans.
I would also recommend families find a local stroke/brain injury support group because that is a great place to share ideas and resources
I realized I had one more thing to say--I have The Zookeeper's Wife on my Kindle but I think I'll have to get this book in hardcover so I can share it with patients and a copy for me to read on my Kindle. Thanks again for this great segment, I'm so glad I was not working at the time it came on.
It has been two and half years since my mother's (85) stroke, and only yesterday we were saying that Mommy is depressed! My father (age 90) says no... she has no reason to be depressed... He fights us at every suggestion!!! Your words were so very timely and helpful! What I prayed for last night ... please give us directions... and then I turn on Diane Rehm and the direction was there in the soft and loving words of Ms. Ackerman. Thank you! I sent the transcript and pod cast to my siblings and father... Finally agreement in our family and an appointment with her doctor tomorrow!
Thanks a lot for the article,
Enjoyed reading it including all the comments!
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