https://mcdn.podbean.com/mf/web/rutcdn/amybloomfinal_-_7_12_22_238_PM96w25.mp3
EPISODE SUMMARY:
A critically acclaimed writer, Amy Bloom’s stories have left their mark in bookstores, magazines, and classrooms nationwide. In today’s episode, we sat down with Amy to discuss her husband, Brian’s, Alzheimer’s, how she and Brian met, the Death with Dignity Act, and working with Dignitas.
First, we asked Amy to discuss the first signs of Alzheimer’s she noticed in Brian. She told us that initially, when writing her memoir about her and Brian’s story, she didn’t want to include his beginning symptoms. To her, Alzheimer’s is such a different journey for everyone, and to recall how he began getting sick was difficult for her. She also mentioned how for a lot of people, you tend not to notice symptoms until after you receive a diagnosis, for things start to come into perspective more. For Brian, his symptoms first appeared after he started working as a university architect. Within months of working the job, Brian could not manage to master the printer and started working at a slower pace than usual. He also became less balanced, injured himself, became more irritable and withdrawn, and would talk about the past a lot. When asked how she and Brian met and fell in love, Amy said at first, they were only friends. They met one another in a small town in Connecticut and seemed to hit it off right away. What drew Amy to Brian the most was that he was not only fearless but game for anything. Eventually, after years of being close friends, they became more. Amy and Brian fell in love, got married, and built a beautiful family together.
After Brian received his Alzheimer’s diagnosis, a decision needed to be made: what would he do now? Doctors advised him to go on vacations and sign up for clinical trials, but Brian didn’t want to. To him, he would rather leave this world while people still missed him and did not want to endure the inevitable progression Alzheimer’s. He wanted to end his life is own way, and after speaking to Amy about it, the two decided to do research to help Brian end his life. Amy said that at first, they assumed that the Death with Dignity Act would make the process easier. However, after reading the requirements in multiple states, Amy realized just how difficult it truly is. For most states, a person must be terminally ill and completely functioning cognitively. They must also have two doctors attest to the fact that they have no more than six months to live, two in person interviews, a written essay, and a two-week waiting period while they are approved. Once a person is approved, they pick up their lethal dose from the pharmacy and have a doctor assist them in taking it.
Since Brian did not qualify for the Death with Dignity Act, Amy had to look to other organizations. She ended up finding Dignitas, an organization in Sweden that assists terminally ill people in ending their lives on their own terms. After speaking to Brian about it, he agreed that Dignitas was the best option for him and wanted to work with them. They flew to Sweden when everything was settled upon, and when asked about the flight there, Amy explained how it was a surreal experience. But through it all, even though he was sad and still a little mad about his diagnosis, Brian was not afraid.
The kind of choice Brian had to make is not an easy one, and for those closest to him and Amy, their responses were mostly supportive. Amy commended her children, who she said stepped up during the time and supported their father’s choice to work with Dignitas. Amy’s mother-in-law was also supportive of her son’s decision. In seeing their various family members’ responses, Amy said she learned a valuable lesson: you can either hold people’s behaviors against them or forgive them. Some relationships were damaged as a result of Brian’s choice, and Amy emphasized the importance of supporting someone in a health crisis instead of judging or condemning them. Rather than try to persuade them to change their mind, you need to respect their decision and find ways to be helpful. For what it was like to work with Dignitas, Amy spoke on how throughout the entire process, they were kind, thoughtful, and constantly reassuring Amy and Brian that they could change their minds at any time. All the people working there were volunteers who had experienced various health crises in their own family, so they could offer empathy and understanding to Brian and Amy’s situation. The experience really showed Amy the differences in U.S. and European healthcare and shed a light on how in America, it’s difficult to find healthcare that pays attention to the individual’s family in any way.
Finally, we asked Amy what it was like for her after the procedure was done. She told us that when it was over, she simply sat with Brian for a while before leaving and returning to America. When coming home, all she wanted to do was curl up in bed and escape the world. However, when she got back, every appliance in her home broke, forcing her to focus on fixing her house. Her daughter, daughter-in-law, and granddaughter also moved in with her for five months and helping take care of her grandchild helped her through the mourning process. Writing her book also helped her, and funnily enough, she told us it was Brian that told her to share their story.
Amy Bloom
Amy Bloom is the author of four novels: White Houses, Lucky Us, Away, and Love Invents Us; and three collections of short stories: Where the God Of Love Hangs Out, Come to Me (finalist for the National Book Award), and A Blind Man Can See How Much I Love You (finalist for the National Book Critics Circle Award). Her first book of nonfiction, Normal: Transsexual CEOs, Crossdressing Cops and Hermaphrodites with Attitudes, is a staple of university sociology and biology courses. Her most recent book is the widely acclaimed NY Times bestselling memoir, In Love. She has written for magazines such as The New Yorker, The New York Times Magazine, Vogue, Elle, The Atlantic Monthly, Slate, and Salon, and her work has been translated into fifteen languages. She is the Shapiro-Silverberg Professor of Creating Writing at Wesleyan University.
In this episode, we discuss…
- [0:01] Bossa Bars
- [0:48] Guest Introduction
- [4:20] Start of Interview
- [4:56] First Signs in Amy’s Husband of Alzheimer’s
- [10:14] How Amy Met Brian
- [12:28] Brian’s Choice
- [16:22] Death with Dignity Act
- [19:21] Dignitas
- [24:26] The Process of Flying to Dignitas
- [28:05] The Family’s Response to Brian’s Choice
- [31:20] Working with Dignitas
- [34:29] After the Procedure
- [38:32] Closing Thoughts
- [39:24] Outro
Useful Resources:
Amy’s Website I [http://www.amybloom.com/]
Amy’s Facebook I [https://www.facebook.com/AmyBloomBooks]
Amy’s Twitter I [https://twitter.com/AmyBloomBooks]
Amy’s Books
In Love I [ https://www.amazon.com/gp/product/B096XGDWSX/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i0]
White Houses I [https://www.amazon.com/gp/product/B074656PYS/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i1]
Away I [https://www.amazon.com/gp/product/B000SEOOYQ/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i2]
Lucky Us I [https://www.amazon.com/gp/product/B00IBZ5ZRY/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i3]
Love Invents Us I [https://www.amazon.com/gp/product/B004BXA3EU/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i4]
Where the God of Love Hangs Out I [https://www.amazon.com/gp/product/B002ZFXUC8/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i6]
A Blind Man Can See How Much I Love You I [https://www.amazon.com/gp/product/B002GKGBJG/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i5]
Normal I [https://www.amazon.com/gp/product/B003E8AIY8/ref=dbs_a_def_rwt_hsch_vapi_tkin_p1_i9]
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