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“I couldn’t do it anymore” - Reaching your limit as a caregiver

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February 13, 2017, by Pat Morden, Caregiver Exchange

Elaine and Jim have a fairy tale story. They met in high school more than 60 years ago, and have been deeply in love ever since. Jim was a policeman, well respected in his community of Thunder Bay. “He was the most selfless man I ever knew,” says Elaine. “He was my best friend. All our married life he was the one who could make things better.” He liked to spend time at home and at the family camp, usually busy with chores. Elaine loved to cook and look after her grandchildren.

Three years after Jim retired, he was diagnosed with Parkinson’s Disease. Active and able for a dozen years after diagnosis, he led a Parkinson’s support group with Elaine’s help. But gradually he began to fail. “He hated it,” says Elaine. “He kept insisting he could do everything he had always done. And it was up to me to facilitate that.”

Eventually she realized that, despite her abiding love for Jim, it was time for a change. “When I started to resent him, I knew I couldn’t do it anymore,” she says. I was crying all the time and utterly exhausted.” She also had serious back problems that resulted in a hospital stay. “You’re only human- your body gives out and your mind gives out.”

It took 11 months to get Jim placed in a long-term care home and then another 18 months to have him moved to one closer to her apartment. She remembers the day she took him to the first home. “I was panicky, I was hyper-ventilating. I was walking behind him – he has an electric wheelchair – and I thought, if he turns around and looks at me, I’m going to say ‘no, we’re going home.’”

Elaine is pleased with the care Jim is receiving, but says things are still difficult. She has had to learn to set boundaries. “When he starts pressuring me to do his personal care, I just say ‘I’m going to get a coffee and go sit in the lobby. When the PSW is finished with you, come out there.’ I had to get pretty hard-hearted because he was just wearing me out.”

Although much of his care is done by others now, Elaine is still a full-time caregiver. “I’m his facilitator,” she says. “I check in with his doctor, let them know if he has a sore or rash. I get calls when he falls, and he’s fallen a number of times.” Weather and health permitting, she visits him every day, eating the evening meal with him before returning to her apartment. “He needs me – he needs to see me and touch me and be close to me.”

Elaine continues to lead the Parkinson’s support group she and Jim led more than 20 years ago, and believes strongly in the power of peer support. “I couldn’t survive without those people!”

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