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

[translated] This issue [of long-term care] needs to be discussed and prioritised by the state, because the population is ageing, children are going abroad and local structures for [supporting older people] need to be improved and a concrete annual budget established. We will all reach an age when we need help.

“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] I am not happy with the current nursing home system and it is a system that is focused on services and not on people. It is desirable that this changes with everyone’s help.

[Translated] In Belgium, we are immensely lucky that our health care system is based on solidarity. It is important that this continues and is even strengthened to avoid inequalities.

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!!

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

I visit my stepmother who is in a wheelchair after a severe stroke 14 years ago. She can cope with the costs of care so I can see the restrictions she faces even when there is sufficient money. She is physically but not mentally disabled. She is unable to use a smart phone or an I-pad and needs 24 [hour] help. She cannot use even disabled toilets. Access into taxis is difficult and impossible in a private car.