Neuro Note 4
Jan's Story - CBS news reporter diagnosed with early-onset Alzheimer's.
Early-onset Alzheimer's was be diagnosed in people as young as thirty years old. Jan was 55 when she first got her diagnosis but when her husband Barry and she thought back, they could remember symptoms starting 15 years prior, when Jan was only 40. Prior to her meeting Barry and being diagnosed with Alzheimer's, Jan was a very successful news reporter. She worked for CNN, ABC, and CBS. She traveled all over the globe reporting, even reporting on CBS Sunday Morning. Jan was spunky, adventurous and full of life. At the age of 40, subtle changes were taking place like lapses in memory and her ambition was slowly fading. As a caregiver, her husband Barry didn't quite notice them but says looking back on them now, he should have spoken up. Jan and her husband Barry were living in London at the time and she would always be at home when he would call. She no longer wanted to go out as much, she didn't visit museums even though they lived somewhere flooded with history. She also wasn't going out and making friends like she normally would after they moved somewhere new. Barry said there was a 3-day span where Jan basically "walked into Alzheimer's". He went to work one morning and by the time he came home, she was gone. She was having hallucinations and hearing voices, she would turn the stove on but then go and take a nap, putting on the wrong clothes before climbing in bed and the aphasia - her husband mentioned that she would say a sentence with all of the correct words but in the complete wrong order. All of these symptoms align with that we have learned in class but since Jan had such an early on-set, the symptoms progressed quickly.
Barry said Jan would eventually snap out of the Alzheimer's fog but she was never the same which led to him hiring a live-in caregiver and eventually, Jan was put into an assisted living facility in Denver, where they were living. Barry still goes and visits her but with a guest - his girlfriend. Jan no longer remembers who she is and even thinks that the person in the mirror looking back at her is a different person other than herself. Barry made the very hard decision to continue on with his life aside from taking care of Jan and find a partner. The decision did not happen overnight but instead, he got a nudge from Jan's own mother, in an email, that stated that it may be time for him to find his own joy and peace in this very dark and lonely situation he is living through. He refers to his new girlfriend, as a "co-caregiver" and when they go a visit Jan, she is thrilled to see them because she does not think of Barry as her husband, she instead talks about her husband in the third person, like he is not there. This encounter, made Barry cry and myself as well. Mary Nell, Barry's girlfriend, is a widow herself and understood from the very beginning of her and Barry's relationship that it was unique and a relationship of three. Mary Nell and Barry look over Jan together.
Barry's book 'Jan's Story' delves into couples who are in it for the long haul and having important conversations while both parties are healthy and stable. He said having the conversation about what each person would do in the situation of someone completely forgetting who they are and what the other person wants out of the marriage in that situation. Barry had a very heartfelt plea for people to have the talk sooner rather than later so you aren't left thinking "Is this what they would have wanted?" which can be in a gut-wrenching situation to be in. Alzheimer's is expected to triple by 2050 because of the aging baby boomer generation.
I first watched the Sunday Morning broadcast of Jan's Story in undergrad and chose the story of Jan for my last neuro note because it was so unique and so hard at the same time for Barry because they were in the public eye. Barry received so many mean letters and people would even stop him in the street and tell him that he was going to hell for "giving up on his wife". I do not think of this story as Barry giving up on his wife but instead not giving up on himself. Human's have the need and want to love and be loved, Barry still loves Jan but Jan loves someone who cannot be Barry anymore. The anger and confusion that was going into having to remind her of who he was were too much to bear and she was slipping away more each day. The decision he made for them will be one only he could make and Jan was still being cared for, she was kept as safe as she possibly could with a disease that was going to take away everything that made her who she was.
Until next time,
Sam The Student
References:
Jan's Story (2019). Retrieved from https://vimeo.com/19797852
"It is like grieving, like saying goodbye at the same funeral, over and over again".
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| Retrieved from: https://www.cbsnews.com/news/ jans-story-love-and-early-onset-alzheimers-20-06-2010/ |
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| Retrieved from: https://www.cbsnews.com/news/ jans-story-love-and-early-onset-alzheimers-20-06-2010/ |
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| Retrieved from: https://www.cbsnews.com/news/ jans-story-love-and-early-onset-alzheimers-20-06-2010/ |
I first watched the Sunday Morning broadcast of Jan's Story in undergrad and chose the story of Jan for my last neuro note because it was so unique and so hard at the same time for Barry because they were in the public eye. Barry received so many mean letters and people would even stop him in the street and tell him that he was going to hell for "giving up on his wife". I do not think of this story as Barry giving up on his wife but instead not giving up on himself. Human's have the need and want to love and be loved, Barry still loves Jan but Jan loves someone who cannot be Barry anymore. The anger and confusion that was going into having to remind her of who he was were too much to bear and she was slipping away more each day. The decision he made for them will be one only he could make and Jan was still being cared for, she was kept as safe as she possibly could with a disease that was going to take away everything that made her who she was.
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| Retrieved from: https://www.cbsnews.com/news/ jans-story-love-and-early-onset-alzheimers-20-06-2010/ |
Jan died at the age of 63 on May 11, 2013, eight years after her diagnosis.
"Jan loved communicating with people on TV. It is a sad irony that this story about her reached and touched so many at a time when the disease meant Jan could no longer know what amazing good her life's journey has done." - Barry Peterson
Until next time,
Sam The Student
References:
CBS (2010). "Jan's story" tells of love and early-onset alzheimer's. Retrieved fromhttps://www.youtube.com/watch?v=NR55AeLx4BI
Jan's Story (2019). Retrieved from https://vimeo.com/19797852
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