Shayna started by trying to do everything, but realized later that it is hard to change.
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. When we were, when my children married they moved east. We were in the mid-west and they had always asked us to move closer to them, and I didn’t want to burden them with the illness. I’m a protective mother and I really didn’t want to do that. So my kids sat me down and tried to explain to me how it’s more difficult for them to be so far away every time he winds up in the hospital. The push between leaving their own families and coming and so on was difficult. And after my husband, as I said, wound up in intensive care before my son’s wedding, it was the first time my kids were there, and it was the first time I didn’t have to make decisions on my own that I had someone to talk to. And I said “Okay we’re going to make the move.” And that’s when we decided to move which was an experience in and of itself.
When you’re caregiving, most of us are at that bottom of the totem pole, and it’s in cement. And it’s in cement to everybody around you, and that’s impossible to change. You start out in the beginning of the illness because this is your natural thing to do. It’s like a…You’re going to take care, you’re going to do it, the kids are not going to be affected, everything’s going to be great and I’m in charge. Twenty years later you’re down there and you’re still in charge whether you like it or not, and nobody is going to let you change it. The dynamic is set and it’s set very early on and a caregiver, certainly the caregivers I’ve spoke to, nobody has time for themselves unless they steal it. And then somebody’s there to criticize them for it.
- 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."