Carrying on the caregiver role for Parkinson’s

Jim Long

When Jim Long’s sister Pat was diagnosed with early onset Parkinson’s disease in 1972, he wasn’t overly involved in her care. Pat was only 45 years old at the time and she managed her Parkinson’s symptoms and personal affairs with no assistance. As time went on, however, Jim took on more responsibility to help his sister maintain her level of care and quality of life.

“As she got older and more ill, I felt I needed to help her when I could, and became more involved with her,” Jim says. “I never felt I was being taken advantage of, because it was natural for me to want to help her cope.”

Jim, a lifelong housing developer in the Toronto area and father of four, wasn’t involved in Pat’s physical care, but he managed most of her financial planning and administrative tasks. He also took her to and from medical appointments and would work with medical personnel to make sure she adhered to her new program and medications. In addition he hired care staff to enable her to continue living semi-independently at home and at the
family Balsam Lake cottage where she spent her summers.

“I still have fond memories of the projects she had to keep busy,” he smiles. “She grew herbs which she used for the gourmet meals she enjoyed. She also made beautiful collages of animals, flowers, and scenes which she clipped from magazines and framed. There were times when she had files and papers all over the place. Sometimes her dyskinesia (involuntary movement) was very bad, but other times she could cut flowers out of a magazine very precisely. Some days were better than others, but gradually she lost all of these abilities.”

In 1997 Pat had a small stroke and was admitted to the Toronto East General Hospital and lost her independence forever. Jim was responsible for finding a palliative care home for her and hired extra staff to help her with her daily care.

Continuing Great Work for Great Causes

In February 2005, Pat passed away, but Jim carried on his charity work with Parkinson Society Canada in her memory. Throughout their journey together they both felt Parkinson Society Canada was behind them 100 per cent. Jim collected print material and information from Parkinson staff to improve his knowledge about the organization. He wanted to be able to give this information to anyone he came in contact with in the greater Parkinson community – his own brand of health advocacy.

Jim continues to help the greater Parkinson’s community by maintaining a leadership role with the annual “Hope in Bloom” campaign where tulips are sold with the proceeds going to Parkinson Society Canada.

Jim was recognized with a Queen Elizabeth II Diamond Jubilee Medal for his outstanding volunteerism and contributions over more than two decades to Parkinson Society Central and Northern Ontario.

Advice from Experience

“Learn what you can, be more patient with those with Parkinson’s and have more compassion for them. The more organized and knowledgeable you are, the better off you’ll be helping a family member or friend,” he adds.

Following these helpful pieces of advice could assist any caregiver lead a healthier relationship with the person with Parkinson’s in their life. For additional information, support and printable resources please visit www.Parkinson.ca and connect with offices across the country to find educational workshops, conferences and seminars.

Editor’s note: The newly published Canadian Guidelines on Parkinson’s Disease recommends that families and caregivers should be given information about the condition, entitlements to care assessment and available support services. To download a copy of the Guidelines, visit the website at  www.parkinsonclinicalguidelines.ca.

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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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