Christiane had to make many phone calls to arrange for things like a wheelchair and home care support.
Transcript
I learned this, not through the CLSC, by the [city’s Association des personnes aidantes]. They told me, “How come he doesn’t have two partial baths. He should have two showers and two partial baths, at least in—between showers.” Then I called them, “Oh well, yeah, maybe! We will look up his case and… ” You are always, always, always… It is annoying, it is exhausting! He was in the hospital for five weeks, every morning I was making phones calls to try to find solutions for this, and for that. The CLSC, you saw how it works? Do you think this is a man who is interested in going shopping? To go for a stroll outside, to go out? To see other things? No. Once he was in the hospital and I brought him in his wheelchair to the exit. He tells me, “Go by the news stand, I want to see the colors.” Then I thought, “So he might be interested if he didn’t have to make the effort of walking because of his breathing and his Parkinson’s.” He couldn’t have a wheelchair. I had to fight to get one.
I demanded that he be seen by an occupational therapist, a physiotherapist, and a neurologist. Then they signed the papers and he had a wheelchair through the rehabilitation hospital, otherwise he wouldn’t have had one. So, I was always fighting because they were telling me, “He doesn’t need it in the house.” But look at the furniture in the house! He hangs on to the furniture, and when he doesn’t hang on to the furniture, he hangs on to me. And thus, I was finally able to have a wheelchair.
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- Legal issues -ChristianeGetting a mandate in case of incapacity costs a lot of money, which Christiane is unable to pay at this moment.
- The future and caregiving – ChristianeChristiane knows she needs a break; she worries about what will happen to her husband if she gets sick.
- Support from family and friends – ChristianeChristiane finds it difficult to ask friends for help, especially since she is not able to pay them.
- Social impact and lifestyle changes – ChristianeChristiane feels isolated because it seems that her friends don’t want to visit anymore.
- Resources – ChristianeThanks to arrangements made possible by her support group, Christiane is able to attend conferences and other activities organized by the caregivers group.
- Providing support – ChristianeOne weekend, Christiane had to move her husband in bed. And with her back problem, she wonders what might happen if she had to do it again.
- Navigating the system – ChristianeChristiane had to make many phone calls to arrange for things like a wheelchair and home care support.
- Interaction with professionals – ChristianeChristiane told her social worker about a solution she found herself.
- Hospitals and facilities (2) – ChristianeChristiane has to check-up regularly on how the facility is caring for her husband.
- Hospitals and facilities – ChristianeChristiane struggled with the decision to move her husband to a facility; her parents helped her make the decision.