The people we interviewed were sometimes confronted with issues or problems at the level of government or the provincial healthcare system. These included problems in the organization of care, coordination between services and settings, and access to care. Here you will be able to read about these general issues with healthcare services and the healthcare system. Specific issues related to hospitalization, facilities, and navigating the system are discussed in separate topic pages.
Issues with healthcare services
Caregivers mentioned the lack of a single or central information point where caregivers can call to find information or resources that would be helpful to them. You can read more about this in Navigating the system.
Another major issue was to have enough services in a timely manner. Sheni, for example, said, “You don’t get the help that you need from anybody and it’s just a really, really difficult position to be in. And most people don’t know until they’re in this situation because everybody says, ‘Well, you must be able to get help from the government; you must be able to get help from this organization or that organization.’”
Caregivers also noticed that the lack of smooth transitions between facilities, for example, from the hospital to a facility or back home. Mrs. Smith’s mother, for example, left her apartment vacant for five months during a lengthy and complicated evaluation in hospital. From day one it had been clear to the Smiths that she would not be able to return after her hospitalization.
Several caregivers indicated that there were not enough services for them to keep their care recipient at home. Anne, for example, said, “I don’t feel that there’s enough out there for caregivers right now.” This was also discussed in the topic page Society and caregiving.
At the same time, Anne noticed that there were no programs for her daughter as soon as she became 25 years old: “When she was younger it was much easier. They had lots of programs for young people up until they hit 24, right. That’s, once they hit 25, that seems to be it.”
Inez lives 30 miles away from local healthcare services and noticed many structural changes in the services offered in the last years.
Living in a rural area also brought challenges for other caregivers. Rowdyneko and Kai both had to travel far to the nearest healthcare services, and in Kai’s case, his father had to be treated in another hospital because the local hospital did not have the right services.
Coping with the system issues
The people we interviewed highlighted many different issues with the government and the healthcare system. Several caregivers advocated for their own rights in an attempt to receive what they felt they deserved. Here are some examples of how people responded to these challenges.
Madhu, for example, became involved in a local cultural organization to support local immigrants in their integration and to promote improved services for immigrants.
Val realized that she needed more help and advocated successfully for more support services to help her care for her husband at home. You can read more about this in Home care and live-in caregivers.
Financially, several caregivers felt that they had to make difficult changes in order to care for the care recipient.
Snoopey and Christiane have a minimal income and struggle with the payment of certain medical supplies that are not reimbursed to them. Christiane said “For example, I am not entitled to government assistance for caregivers because I do not pay taxes. It is tax deductible, but when you don’t pay any, you do not get any. I still have to pay for the diapers. Medications are not included, I still have to pay for them!”
In the end, most caregivers like to be able to care for their care recipient at home as long as possible. But to be able to do this, most caregivers realize that they need support to be able to do that. Rowdyneko said, “If there’s a policy, I mean, I could get on my grandstand. I mean apparently there’s a policy that we want to keep people in their homes as long as possible and there has to be more offered to be able to do that.”