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My mother could afford to pay for care but we couldn’t get consistent reliable care due to the pandemic. We chose a residence but even they are limited to what they can provide and in Canada if a higher level of care is required then the person needs to go to LTC which wasn’t available at the time and she ended up staying in hospital until she passed. The government offers home supports with a cookie cutter approach; not tailored to what would make staying in her home possible. PSWs [personal support workers] to help shower and dress but no service to wash dishes. She could shower, [but] she needed help with dinner and dishes or laundry. The maximum hours [funded by the] Government is 4 hours/week not enough to sustainably stay home.

[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 -excerpt, emphasis in original text] Home-based assistance offered by the Romanian state to older people DOES NOT EXIST. This is unacceptable. […] for sick people and the elderly the situation is extremely BAD. There is no help. No state funded services to help them at home or in an institution, facilities for the elderly are so bad they are more like prisons or labour camps. I also strongly advise you to do a study and personal visits to psychiatric hospitals, and how mental health is treated in Romania.

[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.

[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 – 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 gladly take care of my family members if there were not serious issues that put a big barrier between me and them. It’s easy to place the responsibility on the shoulders of family members when one needs support, but no one considers that the one who is supposed to be the caregiver may be rejected from this role. It is a particular situation, but unfortunately not unique.

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 lost my father last year (cancer). We kept him at home, with my brothers and sister, almost until the end; we are now looking after our mother. She has been in a nursing home for several months. We take turns every day to get her up, wash her, dress her, feed her and take her out. The staff at the care home is always on leave, there is a high turnover of staff. Not only does my mother pay, we each pay a small part of the accommodation, but we are the ones who take care of her from morning to night. That’s why we are part-time.

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!!