Caring for someone with a chronic illness meant that Shayna was making different decisions from other families.

Transcript

This is the rest of your life, as well as your spouse’s life, and that makes the decisions you make very different. It’s not, “Okay, I’m going to deal with this for a year and then it’s going to be over.” It’s never over; it only gets worse. As soon as you think you’ve got it stable, the disease goes downhill. There are some things you never get used to. I think people who don’t experience it don’t understand.

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• What is it like to be a caregiver? – Shayna
  Caring for someone with a chronic illness meant that Shayna was making different decisions from other families.
• Uncovering how and why caregivers care – Shayna
  Shayna started by trying to do everything, but realized later that it is hard to change.
• Society and caregiving – Shayna
  When you are living with someone with a chronic illness, you cannot always do things in a ’normal’ way. Shayna learned that people can respond very strongly to this.
• Social impact and lifestyle changes – Shayna (2)
  It can be challenging for children to grow up in a situation where one parent is sick and needs continuous care. Shayna tried to find the right balance with her family.
• Social impact and lifestyle changes – 2 – Shayna
  For her son’s wedding, Shayna wrote a letter in her husband’s name to ask people to enjoy the day so his absence would not be a source of distraction.
• Resources – Shayna
  Thanks to the adjustments made through a government program, Shayna and her husband maintain a higher level of independence.
• Interaction with professionals – Shayna
  Shayna describes two negative encounters with health care professionals that had an impact on her husband’s ability to deal with his illness.
• Impact on professional life and career – Shayna
  At times, Shayna’s caregiving responsibilities affected her performance at work.
• Health system issues – Shayna
  Programs that help the care recipient remain functional in society are indispensible. Shayna finds it important to see the bigger picture.
• Effects of care recipients’ behaviour – Shayna
  Shayna says: "It makes a tremendous difference for the caregiver if the care recipient recognizes the caregiver’s efforts and well-being."