Disease claims seven members of one family
This is the story of Jay Briggs, a 47-year-old resident of Rose Lane Health Center in Massillon. Jay is living with a serious progressive illness called Idiopathic Pulmonary Fibrosis (IPF). In medical parlance, the term, "idiopathic" means the cause is undetermined. Although there is no known cure, treatments help manage the symptoms of the disease. Jay's story is also an account of personal strength and integrity, compassion and living life to the fullest extent possible in the face of an incredibly difficult diagnosis. Hospice supports Jay and makes that possible.
IPF is a condition that causes scar tissue (fibrosis) to build up in the lungs, which makes them unable to transport oxygen into the bloodstream effectively. The damage that occurs is irreversible. So, the plan of care developed by Jay's Hospice of the Western Reserve care team helps manage breathing difficulties and other symptoms, provides emotional and spiritual support and improves his quality of life.
Usually, IPF occurs once in a family. A small percentage of people have at least one other affected family member. It's very rare for IPF to occur in multiple members of the same family. Almost inconceivably, Jay has lost at least seven family members to the disease, including his brother, father, grandfather and several cousins. Jay carries the genetic marker for the condition.
Stress, Laughter and a "Big Bang" Party
Jay is both highly intellectual and pragmatic. He speaks with trademark honesty and directness about living with his conditions and the misperceptions many people have about hospice: "Google it. Look it up. Talk to me! It's not scary. It's not 'hurrying you up into the ground.' I truly believe when I met the four individuals on my hospice team, they were heaven sent and carefully chosen for this situation.
"I took a big step and acquiesced getting a hospice program in to assist and keep a knowing eye on me. Hospice members know it's a stressful time, but it doesn't have to be dreadful 24/7. Laughter, stories, even spiritual discussions are encouraged," he says.
Although Jay's situation can be incredibly stressful, he likes to laugh. Those who know him best can attest to his quick wit and offbeat brand of humor, which often catch visitors by surprise. "Under different circumstances, I would have loved to have been a standup comic," he admits.
One of Jay’s favorite TV programs is “The Big Bang Theory,” so when he expressed his desire to throw a big party to celebrate his life, the CBS sitcom was chosen as the theme. Volunteer service manager Gail Kraimer, volunteer Pat McMahon and life enrichment volunteer service manager Lori Scotese stepped in to organize a special day.
Arrangements were made for Warner Bros. Studios to donate a collection of Big Bang Theory gift items as a special surprise. Party decorations were ordered and hospice team members arrived at the nursing center early to transform an empty room into “party central.”
Hospice of the Western Reserve partnered with the Dream Foundation, a national dream-granting organization based in Santa Barbara, California, which provided a full party buffet of Jay's favorite foods. On the big day, close to 100 people attended, and Jay and his life partner, Allen, had an opportunity to reconnect with many friends and family members.
Donating His Body to Help Others
Typical of Jay's pragmatism and intellect, he has made a choice that will ensure his legacy will live on. Since so little is known about the genetic component of his disease, he will donate his body to Case Western Reserve University Medical School for study. It is his hope that through this act, he may be able to advance research and make a contribution that will one day help others.
Pictured top photo: Top (L-R) Jay’s Hospice of the Western Reserve care team includes Jackie Kustic-Markowski, social worker; Krysten Cottrell, hospice nursing assistant, and Sally Albrigo, RN. Bottom: Jay Briggs’ life partner Allen Garrett (left) and Jay. Middle: Jay at his party. Below: A custom "Bazinga" cake was made to acknowledge Big Bang Theory, one of Jay's favorite shows.