By all accounts, Gretchen Josephson is a very accomplished woman in her late fifties. She was a dedicated worker for thirty-seven years, is certified in scuba diving, authored multiple books of poetry, was a keynote speaker at a conference in Milan, Italy, and had dinner at the base of the Eiffel Tower. She’s also had her share of heartbreaks: she watched her father deal with dementia, was disappointed by a failed marriage, and lost her mother suddenly due to a fall. Luckily for her she had a very close-knit and supportive family who “included her in everything.”
Why wouldn’t they include her, that’s a given right? Well, not necessarily. Gretchen was also born with an extra chromosome at a time when conventional wisdom was to exclude people who have Down syndrome to the point of institutionalization.
Why wouldn’t they include her, that’s a given right? Well, not necessarily. Gretchen was also born with an extra chromosome at a time when conventional wisdom was to exclude people who have Down syndrome to the point of institutionalization.
Patty McFeeley, the oldest of the four Josephson girls, talks about life with her family in a very easy, upbeat way that made me wish I had been a part of it. Both parents were physicians and together they made the decision to keep Gretchen at home with their three other girls. Gretchen went to special education classes in a regular school in Denver, but not always the closest school to her home. She learned to read and write well, and with a little speech therapy, she became an extremely effective communicator. She grew up with chores just like her sisters. She has always been aware of the fact that she has Down syndrome and in her later years became an active self-advocate. Hers is a story of inclusion and success in a time when supports and services that we all try so hard to get were non-existent or only emerging.
In 2007 things started to change for Gretchen. Tasks that she had been used to completing independently became more difficult. She need more help remembering and making good, safe choices. Within a few short years, the diminishing affects of Alzheimer’s disease have changed her, physically and mentally. Gretchen’s family is now faced with difficult decisions regarding their sister’s medical care and quality of life, in ways that they have not had to before.
During this remarkable interview, I sat in awe as I listened to Gretchen’s story as told by her sister. There was no hint of “burden” that people (outside our community) insist on inserting into our narrative. I didn’t get the feeling that Gretchen’s sisters resented the extra time or attention she may have needed. I didn’t hear a long list of things that Gretchen could not do. Instead, I heard a story of love and understanding, acceptance and support.
We spent so much time talking about Gretchen’s accomplishments and successes that we ran out of time to talk about the recent developments in her health and ended up continuing the conversation way past the scheduled two-hours.
There is no doubt that Alzheimer’s disease is devastating, not only for the person who is diagnosed, but also those who love them. Hearing Patty talk about the changes she and her sisters have seen Gretchen go through is painful, and scary. But I’m extremely grateful for the opportunity to listen and connect a personal experience to the scientific information being presented this week. Gail and Patty did a wonderful job giving a voice to the power of narrative.
In 2007 things started to change for Gretchen. Tasks that she had been used to completing independently became more difficult. She need more help remembering and making good, safe choices. Within a few short years, the diminishing affects of Alzheimer’s disease have changed her, physically and mentally. Gretchen’s family is now faced with difficult decisions regarding their sister’s medical care and quality of life, in ways that they have not had to before.
During this remarkable interview, I sat in awe as I listened to Gretchen’s story as told by her sister. There was no hint of “burden” that people (outside our community) insist on inserting into our narrative. I didn’t get the feeling that Gretchen’s sisters resented the extra time or attention she may have needed. I didn’t hear a long list of things that Gretchen could not do. Instead, I heard a story of love and understanding, acceptance and support.
We spent so much time talking about Gretchen’s accomplishments and successes that we ran out of time to talk about the recent developments in her health and ended up continuing the conversation way past the scheduled two-hours.
There is no doubt that Alzheimer’s disease is devastating, not only for the person who is diagnosed, but also those who love them. Hearing Patty talk about the changes she and her sisters have seen Gretchen go through is painful, and scary. But I’m extremely grateful for the opportunity to listen and connect a personal experience to the scientific information being presented this week. Gail and Patty did a wonderful job giving a voice to the power of narrative.
My PerspectiveAs a parent of an adult who happens to have Down syndrome, there were a few points that Patty made that struck deep chords in my own life with Josh. One was how Gretchen’s family used “natural” supports to help her rather than “government approved and controlled” ones that I think are so important. For example, to combat the weight issues sometimes associated with Down syndrome, Gretchen and her mother attended Weight Watchers together where she learned about eating healthy and portion control. As a result, Gretchen has never had a weight problem, or the sleep apnea or other issues that can go along with it. |
Also, only when the conversation turned to the recent past did the subject of competency and the issue that is front and center to all parents of adults who have Down syndrome even come up. Gretchen was consulted and agreed to give her sisters power of attorney when it comes to medical issues. She has never been declared “incompetent” or been assigned a guardian. For me, this is remarkable perhaps because of the countless conversations, classes, and conference sessions that I’ve been included in over the years since Josh turned eighteen. Maybe it’s because I’ve heard so many parents talk or write about how they have been “forced” to take control of their child’s legal rights or be denied services. It might even be based on what seems to me as an overwhelming “conventional wisdom” that people who have intellectual disabilities “need to be protected” from themselves. Hearing Patty talk about Gretchen’s story in such a ‘matter of fact’ way, making it obvious that there was never any doubt regarding the ‘right’ decision, made me feel more confident about my own decision not to become Josh’s guardian.
| Where Do We Go From Here?Gretchen and her family have a difficult road facing them like so many others who are dealing with Alzheimer’s disease. We can all do what we can to support them and other families with research, better health care options, and increased understanding and support. There may even be ways to get Gretchen’s incredible story the attention and audience it deserves. I plan on working with Gail and Patty in the future towards that end. The Josephson’s story needs to be told, and heard not only by those of us in the Down syndrome community, but by everyone who doubts that people who have disabilities are ‘more alike than different.” |
Thank you so much Gail Zahtz for hosting this conversation and Patty McFeeley for sharing a piece of your sister's story with us! It has changed me, and I’m sure anyone who listens will learn and appreciate your time.
To listen to the recorded show, visit Gail’s BlogTalkRadio site.
This exciting week continues tomorrow as Gail interviews documentary film maker BANKER WHITE about his films in general and specifically "The Genius of Marian" about his mother's journey with Alzheimer's. For more about this upcoming interview, see Gail's article on Demand Design.
To listen to the recorded show, visit Gail’s BlogTalkRadio site.
This exciting week continues tomorrow as Gail interviews documentary film maker BANKER WHITE about his films in general and specifically "The Genius of Marian" about his mother's journey with Alzheimer's. For more about this upcoming interview, see Gail's article on Demand Design.