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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] I care for my husband after a stroke and brain hemorrhage, which means he needs me around the clock. I would like to have a paid time off of one week once a year and my husband is well taken care of and does not feel “deported”. After all, by taking care of him, I save the state a lot of money!

[translated] Well, I hope that caregivers get a protected or priority status – I mean at work and as workers, everyone needs us, our attention, and to some extent it feels like we are omnipotent and can care for others, care for ourselves and sometimes, care for our parents. That is wrong.

[Translated] There are now already too few caregivers and nothing is done about it! How will that be in 10 years ?!

[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.

For the past ten years, I have been providing care to my mother with dementia and complex care needs whilst at the same time raising two children alone following the break-up of my marriage due to domestic abuse, and trying to combine this with work. I am exhausted and feel completely burnt out. Caring has negatively impacted on my work and career and affected my family life. My mother has recently moved to a small scale nursing home where she is so happy and so well looked after. There is huge pressure on families to continue to look after people with highly complex care needs and I question that. There are too few small scale nursing homes in Ireland.

Start to talk openly [about] discrimination of elderly in Sweden which has been going on AT least 20 years by now [emphasis in original].

[Translated] I would urgently need support as far as my parents are concerned. They live alone, my father doesn’t speak at all anymore, can’t be reached by phone either, and my mother now and then. I think they both need urgent support, but I can’t talk to them anymore. My mother had a serious brain operation, I was never informed by any doctor, by any nurse, by any social worker…….what can be done, what is available, nothing at all….

[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.