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.
And in this province there isn’t a lot of… you can’t go to a book and say, “Okay, here’s a group of caregivers, and here’s a group of medical people who specialize; here’s this and here’s that.” It’s kind of a—maybe because I haven’t been looking—but it seems to be kind of slipshod and there’s really no area that you can go into and say, “Okay, I need help on caregiving.
I mean, in my view that’s a big stress off. And again, the social worker would sit me down and say, “Well this is what you,” to me, “this is what you have to do; you have to move over here, you have to find a place to live, you have to figure out how to pay for it, you have to look after him 24 hours a day. You can’t bring your dogs. You’ve got to figure out somehow to look after your property while you’re gone.” Yeah right. So who’s going to help me with this? And the bottom line is, if you don’t have someone who will do all that stuff, you don’t get a transplant. So, that pissed me off. The social worker did not like me because, I mean, I challenged her on that. I said, “You want all this done, and how am I supposed to do it? Who is going to care for the caregiver?” I said, “What happens if I crash and burn in the middle of this?” Oh no, no. You can’t do that. Yeah. Just like this whole caregiving scenario. I mean, you can’t crash and burn; there’s no way to pick up the pieces. There is no support for caregivers.
When we went to visit the gerontologist, they gave us a lot of information about dementia, arthritis, supports, but I just found that all of those supports that they mentioned were supports that were sort of almost too late. They were almost too late. My mother was already almost out of that stage.
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 driver’s 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.
Inez lives 30 miles away from local healthcare services and noticed many structural changes in the services offered in the last years.
Well the doctor situation in town here now is really bad. A few years ago they had ten doctors and now they’re down to three. And it’s practically impossible to get an appointment. And a lot of people, they take advantage of a situation by going into emergency when it’s not an emergency, and I won’t do that.
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.
Well, the only thing is don’t tie everybody with the same rope. Everybody deals with different way, and, I mean, we have excellent doctors, we have excellent care, but [from a] culture point of view, sometimes they don’t understand. I mean, I’m vegetarian.
Because if you travel to get medical care not available in the area, it has to be 150 k—or whatever for example—and we’re 10 km below. And I remember I wrote—like, you know how the CSSS for the region?
You can’t live on… you can’t raise a family on Canada Pension benefits that were something like $800 or $900 a month—whole family, okay? To live in a house, even if we lived in an apartment, you can’t live on that little money. So, I obviously, I had to work and I said, “Well, okay. So, you want… you’re suggesting that he lives here.
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.”
But, what I tell you. This is the best unpaid work the federal government gets, I’ll tell you. They are saving billions with all these caregivers. And, I mean, there’s no income tax relief for caregivers. I mean, we’ve got the disability tax credit. I mean every disability thing, because I work with people with disability, we’ve got every disability thing possible that my husband qualifies for, but there’s nothing for caregivers. And I think they are going to put in a caregiver tax credit. Well, that means you have to pay taxes. I mean, if your income is low enough that you’re not paying taxes, a tax credit is not going to help you. So, I mean, this is my new thing, bandwagon I’m getting on when I have time, this whole caregiver thing. Because it’s just there’s a total expectation that you’re going to do this job 24/7, but there’s absolutely no help to do it.