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[…] My elderly grandmother lived with my family for 25 years and she needed substantial care for the last 15 years of that. My mother was a full time carer for her and could not work. There was definitely family expectation that this would be the case. Eventually she was too frail to be at home and she lived in a nursing home for the the last 10 or so years of her life. Both of my parents mental and physical health improved substantially after that. They were still involved in visiting frequently, bringing food, doing laundry but they were also able to live their own lives. I feel very strongly that care should be provided for older people

[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] It is not easy to gain the trust of a stranger and let them take care of you. Trust and safety are also very important factors in receiving /providing long-term care.

[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.

[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.

“Given the current state of care facilities, I would prefer to take care of my parents/loved ones at home and if I should require services I would prefer to be taken care of at home. The way I view care facilities in their present state is that these facilities provide everything needed to keep a person alive but greatly reduce their quality of life (e.g., loss of dignity, reduced access to meaningful activities and social interaction, loss of agency etc.). I believe it is practical, feasible and in governing bodies best interest in the long term to improve quality of care in these facilities. We now have good evidence for activities/programs that can improve wellbeing and physical health in older adults. We should be utilizing this evidence to improve the lives of older adults. If the quality of care provided in these facilities drastically improves, I would view this as the preferred option. But we are not there yet.”

[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 don’t understand why people with high income and property don’t have to pay for their own place in [residential] care homes!

[translated] The development of home care services in Romania would contribute to increasing the quality of life of Romanians and would be of great help to family doctors [general practitioners] who are overburdened with time-consuming bureaucratic tasks.

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