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Every person in need of care must be cared for so that he or she has all the dignity required. Taking into account their limitations, they must be provided with the highest possible quality of life. This care must be provided by family members and professional staff so that their affective and assistance needs are covered.

[Translated] Support and training for family caregivers is needed in many ways.

Thanks for keeping this in the public eye. No easy answers, I’m not sure I agree with all of mine today, but we must keep trying!!

[translated] In general, the state should take care of the financing of care services and introduce a system for quick access to emergency medical care.

[Translated] None of the services I have used have the means to help dependent people with multiple sclerosis. It’s a horror. I have to do everything on my own because the home carers for example can’t come if I’m in hospital or on rehabilitation…the domestic helpers are no longer available, I am not entitled to a transport service … I never qualify. I am revolted. I live alone without family and it’s really hard. I’ve been able to get help at times but it doesn’t last because the budgets are so small. Even people with severe physical disabilities don’t have adequate help. The Aviq [Agence pour une Vie de Qualité] has not been functioning for years… the situation is very serious. And it has become even worse with Covid.

[translated] Long-term care should be almost exclusively the prerogative of state institutions that should have the necessary infrastructure and resources to respond to the needs of older people and their families.

[Translated] Children and partners should never be forced to take care of their relatives. Everyone wants to be able to live their life the way they want. It’s great that a survey like this is being done. Thank you!

[Translated] I don’t understand why people with high income and property don’t have to pay for their own place in [residential] care homes!

[Translated] I was my husband’s caregiver for 7 years. He passed away from a rare and orphaned neurodegenerative disease (PSP). When the diagnosis was announced, we felt abandoned. Then it was very difficult to find quality help even if we paid. I retired 2 years before the legal age to continue to help him. Our last and most terrible test was to have his advance directives respected. He could no longer swallow, so he could not eat or drink. He refused the gastrostomy and wanted deep sedation. I had to fight again and again to have his wishes respected. So abandoned from beginning to end!

I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.