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[Translated] It is complicated to get help when the parent who needs it is living abroad (France) and it is impossible for him/her to live alone. Because no retirement home can be found for him/her, the only solution is to take him/her at home (in another country of the European Union)

[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 – 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.

[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….

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] I have long cared for my sister and my mother, and now my husband who has cancer and is bedridden! I wish someone [could support me] for a few hours or once a few days so that I could go away once with my daughter and granddaughter or make a trip!

[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 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] I would not want my future to be in the hands of politicians but in the hands of qualified experts.

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.