Ship to shore: how palliative care is improving a craftsman’s quality of life

Jack with his model of the sailing vessel Denis Sullivan

The sailing vessel Denis Sullivan at Discovery World in Milwaukee is a recreation of a 19th century three-masted Great Lakes schooner. It took several professional shipwrights and over a thousand volunteers many years to build it. Taking inspiration from this, Jack decided to recreate the tall ship in his own home. Jack spent 500 hours building the model, then donated it to the North Point Lighthouse where everyone can enjoy it.

Jack has always done things with his hands, from his career fighting forest fires, to volunteering with Habitat for Humanity, to helping out at his local library. However, a few years ago things started to change. He would wake up with a sore neck that did not improve with Tylenol, heat or ice. Turning side to side or even bending became very difficult. This affected his balance and his walk became unsteady. The hands that had built and carved and created all his life started to get stiff. Simple tasks like holding onto his coffee cup or shaving became a challenge.

A whirlwind of change

Jack went through several procedures, plus trips to his primary care physician, orthopedic physician, neurologist, rheumatologist and hematologist. He was given multiple medications and was eventually diagnosed with ankylosing spondylitis, an autoimmune disease where the body’s immune system starts attacking the body.

Jack’s new world revolved around basic care, like bathing and eating, with little time left for hobbies. He was frustrated, running from one doctor to another for care that was organ-specific rather than patient-centered. He then met with a palliative care physician at Aurora Medical Center in Grafton, who could help across various domains of medicine.

How palliative care is improving Jack’s quality of life

Dealing with medical issues, reviewing a patient’s history and medications, and developing a care plan is just part of what palliative care involves. It also addresses psychosocial and spiritual symptoms, with support from chaplains and social workers. It promotes patient well-being by focusing on symptoms of diseases which can’t be cured. Patients’ values and wishes are involved in decision-making about their care. The goal is to allow independence as long as it’s feasible and to have a plan in place for when it is no longer possible.

The palliative care team continues to work with Jack and his family to support his needs and help guide them when it comes to decisions about his care.

You can help

Join us for the 4th annual Live Well Ozaukee on Friday, August 25. Your support will help strengthen palliative care services and programs in Ozaukee County.

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