You cannot expect to be a hero … you have to recognize you are human.”

— Patricia “Pat” Angel

Patricia Angel has had many roles—teacher, wife, mother to a daughter and son-in-law, grandmother to a grandchild, and caregiver. Out of all of these, it was the last that she needed to truly design: How to be a caregiver to a loving husband of 51 years with Parkinson’s disease while balancing a life for both and carving out some independence for herself.

PatAngel crop e1609783274638
PatAngel crop e1609783274638

None of us have a glass ball, and certainly years ago when Pat and Jim Angel met in the seventh and eighth grade respectively, neither would know that many years later their union would have this curve. No one expects to navigate from a good, healthy, productive life, to the challenge of an everyday existence that requires extensive care. Certainly, Jim, who had a long career as an engineer, would never have expected that a disease would change the way he thought and moved. But this happens with Parkinson’s, and Jim, the ever-present, linear-minded man, now experiences Parkinson’s-related hallucinations and delusions that are as real to him as the sun and sky.

The first change

Pat’s love and compassion for her husband is clear. The sadness she feels seeing Jim’s cognition and physical ability change so progressively is also clear. The first change she noticed was in Jim’s movements—his arm shook even when it wasn’t moving.

One day in 2010, after playing a round of golf, Jim came home with an aching shoulder. He struggled with his shoulder pain, and the tremors he was also experiencing. Soon after, they traveled to New York to visit their daughter Laura, who noticed that the tremor was moving up his neck. That was when they realized Jim had something more than fleeting injuries, and needed a diagnosis.

They made an appointment at the Cleveland Clinic, and a neurologist diagnosed him with Parkinson’s disease. In 2011, at age 64, Jim retired from his full-time job as an engineer.

Inevitable progress

Now, 10 years since his diagnosis, Pat and Jim are challenged with the inevitable progress of this disease. Over the years, Pat has learned ways to navigate Jim’s day- to-day needs. She enrolled him in Rock Steady Boxing, she has encouraged him to spend time at the senior center in Columbus, Indiana, where they live, and they continue to have a deep connection to their community. Still, it is an uphill climb for both, and with COVID-19, activities have been stopped or limited.

Pat said close friends and family have shared: This is a disease that is affecting her life as much as his.

Pat’s personal time is limited to when Jim is engaged with an activity, which is less these days. The demands and physical requirements of people with complex diseases are many, and ongoing. The caregiver is on the “frontline” making decisions, navigating health systems, providing day-to-day care, and remaining always at the ready. As Pat put it: “Caregivers are hard on themselves.”

In her experience, Pat has seen the loss of who her husband was before Parkinson’s, and now who he has become. It is an emotional loss, one that is difficult to harness.

Comfort and encouragement

Caregiving resources and support are so critical to Pat. Pat participated in an eight-week caregiver support class that she found so helpful. She met others who also were able to give her insights, including a minister’s wife who was available to Pat to listen and give counsel. Pat has appreciated comfort and encouragement and thinks both she and her husband benefit from it. Supporters have taught her it is OK to cry and feel loss. They’ve helped her understand this is a circumstance you never wanted to experience, yet it is one you are going through. They said it helps to find ways to relieve the tension through laughter and moments of remembering the days prior to illness and provides an outlet.

Pat’s experience shows how as a caregiver, the trials, and tribulations of the one you are caring for is shared. For her, the difficult path has been easier to approach with the support of community, good memories, and helpful resources.

Patricia and Jim Angel live in Columbus, Indiana, and continue to make everyday count.