“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.
Transcript
Ask questions. Ask. The worst is you’ll be told no. But if you don’t ask, you don’t get. That took me a long time to figure out, but the squeaky wheel gets the oil. It does. And you don’t have to squeak annoyingly; you can squeak nicely and it still works. Ask the nurses questions, ask… go to your library if you can. Go to, depending on the type—I mean, if it’s dementia or if it’s multiple sclerosis there’s always associations that will help you to a point, but they can’t do…, but they might steer you to the right place. I just recently, in fact yesterday, found out about an organization called “We Care” and I that was on the net. I don’t know how I ended up there, but some link that came through something else and they had a booklet for caregivers.
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- 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.