Patience Is a Requirement for Good Caregiving

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by Carlos Briceño |

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My wife, Jill, who is gene-positive with Huntington’s disease (HD), is a born caregiver. It’s one of the reasons I fell in love with her. I watched her take care of her father, who also was diagnosed with HD, as he started to decline physically and mentally. It was an important lesson in patience and caregiving.

She was so patient with him. When he had trouble eating, she made food he could eat. When he had trouble walking, she pushed him in a wheelchair. And when he had trouble with anxiety and started having hallucinations, she remained calm. It was an impressive display of love, mercy, and patience. And it is when I began to learn about patience and caregiving.

The thing is, she doesn’t really see herself as a patient person.

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Jill has sensory issues and sometimes is bothered by sound and chaos. She can usually ignore it, but when the noise or chaos is caused by someone she views as socially rude — such as parents who take a crying baby to a midnight movie —  she tends to lose her patience quickly. But it’s not the crying baby that bothers Jill — it’s the impoliteness of the adults.

Over the last few years, I’ve noticed that she is more aware of what annoys her and has a hard time adjusting and finding peace. I assume some of that is because of HD. But recently, she learned a valuable lesson she hopes will help her cope in healthier ways.

Over the summer, Jill visited her mother, who was recovering from a recent surgery in Pennsylvania. When Jill arrived, her mother’s ceiling had been leaking for days, and the landlord hadn’t fixed it. Jill couldn’t turn the water off, because people lived upstairs. So, she put a small garbage can under the leak.

The dripping sound was maddening, she told me later. As the evening went on, she tried, unsuccessfully, to find a plumber. She told the landlord the leak was worsening, and it was now flowing out of the ceiling.

The next day, Jill bought a large plastic tote and put it under the leak. At that point, she realized she had a choice to make: She could either become further annoyed, or she could reframe the situation. She chose the latter, telling her mom, “Now you have a relaxing water feature. People spend a lot of money to have those installed in their homes. You get to enjoy yours for free.”

Later, after taking a nap, Jill told me she was tired because the “water feature” was so relaxing that it put her to sleep.

Eventually, the landlord showed up to fix the leak.

When she arrived home several days later, Jill told me the leaking episode had reminded her that because life is short, and because she has a terminal illness, she needs to focus on the positives rather than the negatives in her world.

The lesson I took away from this is that being an excellent caregiver like Jill requires a lot of patience. She was patient with her dad, and she learned to be patient with that leaky ceiling while taking care of her mom. Her patience and caregiving inspire me.

Whatever happens in the years ahead, I will remember that lesson, because Jill deserves to be treated with the same kind of patience that she shows to those she loves.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

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