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[translated] You’ve made me think … I will have to come up with a plan for the future.

Both my parents died in a nursing home. I believe that had there been appropriate in-home care available outside of the hours of 9am to 5pm that my mother might have been able to live at home. As it was she suffered a severe fall at night and was admitted to hospital and declined there to the point that she required full-time care. The cost of overnight carers was exorbitantly expensive. The government should put more resources into providing high quality home care which doesn’t end at 5pm when patients are most vulnerable

[Translated – excerpt] Long-term care is an obligation of society. The administration has to participate and set criteria for equality, but it has to get involved in management, if it wants to do so under the same conditions as everyone else. Give a choice to the citizen who chooses what he/she wants, not what the administration thinks (free choice). Care should be directed by the people, not only centred on them. Empowerment of the citizen. Promote professional training and above all competences and skills. Increase staff ratios and salaries, and above all work/family/leisure balance. There is a lot of work to be done.

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

[translated] Let’s not abandon the elderly, they do not deserve that.

[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!

[Translated] I would like such surveys to be more efficient and to have more participation in them, and consequently I would like to talk and learn more about these issues in order to take action and make life easier for many individuals.

“It’s very difficult to take care of elderly. It causes a lot of stress with effects on health. Wished for some more support structures. Needs have to be assessed often as they can change frequently.”

[Translated] Do not forget to correlate loss of functional independence with disease. Do not forget that 30% of dementias can be prevented and that frailty is preventable and reversible: prevention must also be funded.

[translated -excerpt] I would like to see society organise a systemic way of funding care for older people in their own homes for as long as possible, and then in institutions when they need it. Funding should be provided through long-term contributions to an individual’s fund, as for a pension, or through insurance. The problem of paying for care for the elderly is a major problem, and the hardship and burden on the person being cared for and on those close to them is great.