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.
So I don’t think my experience as a caregiver is unique. I think a spousal caregiver has a very unique experience as compared to a child caregiver. I think the children, young children, go through hell and don’t realize it and don’t know how to cope with the nice things that people say that are all wrong; that are terribly guilt-ridden, riding, imposing, guilt imposing on these children. I had to teach my children that it’s okay to say “no” to their father, who would call them every 2 minutes to pick up a pen that dropped or get something. It’s just, you can’t do that to a child; they’re not your caregiver. That’s a whole different piece. And you as a mother watching this—seeing how it affects your children, seeing how your children are so ambivalent between wanting to help and hating to help, and how it affects them—and trying to deal with that, that’s a whole different volume.
- 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 – ShaynaShayna started by trying to do everything, but realized later that it is hard to change.
- Society and caregiving – ShaynaWhen 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 – ShaynaFor 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 – ShaynaThanks to the adjustments made through a government program, Shayna and her husband maintain a higher level of independence.
- Interaction with professionals – ShaynaShayna 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 – ShaynaAt times, Shayna’s caregiving responsibilities affected her performance at work.
- Health system issues – ShaynaPrograms 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 – ShaynaShayna says: "It makes a tremendous difference for the caregiver if the care recipient recognizes the caregiver’s efforts and well-being."