Shayna describes two negative encounters with health care professionals that had an impact on her husband’s ability to deal with his illness.
So we went the path of going to the doctor, who sent us for further tests, sent us to a neurologist. And one of my horror memories is that the neurologist diagnosed my husband over the phone. My husband called him and asked him—now my husband did pressure him too for it—and he said, “Well, you come in and we’ll talk about it.” But in the end, he did tell him the diagnosis of MS over the phone. And because his personality was suggestive, I saw the deterioration within 5 minutes. He had been on the phone, he had walked, and all of a sudden he couldn’t master things that he had done just a few minutes ago. So obviously, it’s a pet peeve of mine that that should never be done to anybody. We had a wonderful family doctor who talked him through, kept him upbeat, and he actually drove to the appointment with the neurologist. We went into his office, the neurologist sat us down and said, “I concur that you have MS.” And I said, “We’re really very frightened. Could you spend some time explaining it?” And he said, “No. Get a second opinion if you want more information.” This was a top neurologist, and the awful part of that to me was my husband, who had driven down could barely make it back to the car; there was no way. I had to help him into the car, and it just showed me how, yes, you may have a disease, but your mind is still in control for positively or negatively. And it was downhill from there. And I think if it had been handled differently, the results would have been different. We saw a neurologist there who concurred with the diagnosis. But the difference was—I still remember this—he sat us down and he said, “You have waited for your turn, you will not leave this office until you have a handle on your disease. You will have my phone number; if you have any questions call.” And I think, the way my husband was handled by that neurologist enabled him to continue working and made such a difference, and it always left a huge impression with me on how a doctor handles the diagnosis has a tremendous, tremendous effect on how the person copes with what they’re coping with.
- 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."