Hélène would like more information about how to deal with the final stage of her husband’s disease.
That’s always a bit tough, and that’s another thing we don’t learn anymore. I know that my mom took care of her mom—my grandmother died at home. And in those days—and she’s seen a lot of people dying in those days—and it was something that was part of life. Now it’s not, we don’t want to talk about it; we hide it. If you go to a funeral parlour you don’t see, you don’t know anything anymore. I think, just maybe knowing that perhaps I will be there…until there, so that I don’t panic, I would like to have more [of] what to look for. How do I know? It’s okay, but how do I know? How do I not panic [about] the person that I’m looking after? How do I make it easier? And I know you know. It’s like when my mom got sick, I went to see her at the hospital and she was supposed to come out, and I said, “No, she’s not coming out.” But, I worry about that sometimes. Be prepared too. Like, you have to talk; you have to know your finances. You have to know what the person wants, without just living in the future. You still have to have your basics, so that when you’re in that state, that’s taken care of. You don’t have to waste energy on that. You can focus on something else. That has changed my perception, and yeah, I do wish it wasn’t such a big mystery, because it is part of life. And maybe it was more part of life we wouldn’t be freaking out as much as we are now. And I don’t know.
More from: Hélène
- Interaction with professionals – HélèneHélène’s husband asked the doctor to treat him not as a number but as a person, and since then they get along really well.
- Health system issues – HélèneHélène was eventually reimbursed for travelling for medical care after writing to her members of parliament.
- Caring for yourself – HélèneTaking care of yourself doesn’t have to cost much. To Hélène, little things can be a big help.
- Impact on professional life and career – HélèneHélène used up all her vacation days to care for her husband; she ended up taking 5 years worth in advance.
- Financial impact – HélèneHélène discovered that drug companies sometimes help patients pay for medication.
- The future and caregiving – HélèneHélène wishes that dying was easier to talk about. She worries about being ready for the future.
- When care changes over time – HélèneHélène would like more information about how to deal with the final stage of her husband’s disease.
- Advice for other caregivers – Hélène“The squeaky wheel gets the grease. And you don’t have to squeak annoyingly but you can squeak nicely.” It took Hélène a long time to figure that out.