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.
Weddings. Ho ho! Married off both my children. For my younger children, for a number of reasons, the wedding was far from home we had to travel yet again. In retrospect, I don’t know how I did that—how we got this multi-handicapped person to this place—but it was great and we did it. For my son’s wedding, he wound up in intensive care the week before the wedding. And my son came to me and said, “It’s my wedding. Everybody’s going to ask me about dad. I don’t know what I’m going to—how am I going to cope?” So, I decided since I had my husbands’ Power of Attorney, I wrote a letter from him basically—people don’t know how to act, so you need to tell them. By then, I was older and a little bit more experienced, so I wrote a letter that I asked the father of the bride to read to everybody who was there, saying that this was my son’s celebration, to please not discuss me with anybody, but make this day a joyous day with joy. And I had hoped by giving people that direction and having her father read it, that people would then know what to do. And for the most part they did. There were a few people who—I had one gentleman who came from out of town—he was even a doctor—who came up to me and said, “This is what you have to do. Dah, dah, dah, dah, dah.” And I said, “Please this is not the time.” “But I have to tell you.” And I said, “But this is not the time.” “But I’m leaving town tomorrow!” and I said, “This is not the time,” and I just walked away. But I couldn’t have done that 20 years before, 15 years, 10 years before. You grow into this role and you learn to realize that nobody’s going to get it anyway, so you’ve got to do what you’ve got to do. And for me, that was making my husband as independent as I could, functioning as a family as best as we could, as normally as we could although normal is a relative term.
- 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."