Thanks to the adjustments made through a government program, Shayna and her husband maintain a higher level of independence.
Transcript
Again, we were very fortunate. Where we lived had a phenomenal government program, called [an engineering company], where if you could not buy a support, and if they agreed, they would invent it for you. So one of the things that they invented—there was a woman there [and] we took advantage of it as grandparents—but one of the things they did is they made handicap accessible cribs and strollers. You cannot buy that.
So, we asked them to build us one because my daughter and her oldest son came to live with us for a while, and I didn’t want to have to get a babysitter if I was going out with my daughter if I didn’t have to. […] I mean to get a babysitter when there’s an adult in the house has its effect on everybody. So they created this crib for us. We bought the crib, they put it on stilts, the wheelchair went underneath and it opened with Plexiglas sideways. So, from the wheelchair you could pick up the baby, and there was no reason that my husband couldn’t care for this baby once he got him out of the crib. So that was one of the phenomenal things, the phenomenal experiences. I wish every province and every state had a government organization that did this.
As my husband deteriorated, we had had our first—his first car was a Grand Caravan and it was accessible but he drove; he could transfer. As he could no longer transfer, the car became obsolete. We couldn’t afford—these are very expensive vehicles—we couldn’t afford to get another one and nobody could figure out how to do it. [The engineering company] in the end cut his wheelchair in half with 40 ball bearings. Put ball bearings on the drivers seat, it was just the base, so that he could pull up next to it and just move over and drive from it. It made such a difference in our life that he could still drive and I didn’t have to do all the driving. It made such a difference to him, and it made such a difference to the government in that he was employed.
What would we have done? Gone on disability? It is so short-sighted not to have these programs. You wind up needing mental health professionals, needing or going on disability or welfare. There is no reason if the only problem is getting where you’re going in order to work, on time. So, all these things are my pet peeves, all the things that I’m mentioning. It’s so important to see the bigger picture, the ripples. Again illness doesn’t just affect the person, it doesn’t just affect the family; it affects everybody.
More content
- 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."