For Sheni, it was impossible to work and find care for her husband.
Transcript
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. How am I going to have him looked after while I’m gone for work?” Well, it turns out that they could provide 14 hours of care a week on different days. I’m like, “Well, I need 12 hours at least on like 5 days.” “Oh well,” like they just didn’t have an answer for me. They had no answer for me. They basically insinuated that I should be the one to come up with a solution. They did not help me at all, and I’m really miffed about that because they should understand. I don’t understand how they can’t understand this. Like, was I supposed to just not work and use the 14 hours a week a couple hours a day each day and then just look after him myself and not work? I mean, that’s not sustainable. It’s not realistic. So, what I found with the so-called healthcare profession was that they had no answers; they had no answers at all for the financial aspect, which is a big aspect. Because if you have your financial base covered, your life is not nearly as stressful as if you don’t. So, if a person that has an acquired—that becomes disabled—worked for a company as a full-time employee and has long-term disability, then it’s not an issue. They can… at least they have a decent income coming in. So, you can manage on… if your income’s a bit lower than it was when you were working, well that’s not too bad. But when you have no income, you just cannot look after a person in that situation; you can’t. So, I found that they tried to make me think that it was possible, but didn’t offer me any ways of making it possible. There was no financial help, there was no help from—there wasn’t enough help from these agencies to enable somebody to work full-time and look after a person in that condition.
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- Trying to find the right balance – SheniWhen her husband was in the hospital, Sheni did all she could to help her children through this period.
- Support from family and friends – SheniSheni’s family-in-law did not offer any help. In fact, they made it harder for her.
- Social impact and lifestyle changes – SheniSheni notices that she has a lot less tolerance for other people’s minor problems and this has affected her friendships.
- Legal issues – SheniSheni’s power of attorney was revoked after her sister-in-law contacted the Public Guardian. Sheni thinks it is important to read up on the rules of power of attorney to avoid any issues.
- Interaction with professionals – SheniSheni describes two occasions where she had a disagreement with the doctors.
- Financial impact – SheniSheni and her husband had always been self-employed. In just a few weeks, they lost all their income.
- Impact on professional life and career 2 – SheniWhen her son started radiation therapy for his brain tumour, Sheni had to take time off work. Unfortunately, her manager was not very understanding.
- Impact on professional life and career – SheniIt is difficult to work while caring for someone at home. Sheni dealt with situations that she felt most people never have to deal with.
- Home care and live-in caregivers – SheniSheni found the live-in caregiver very helpful, especially since she could check-in with him at home during the day.
- Health system issues – SheniFor Sheni, it was impossible to work and find care for her husband.