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[translate] I hope your study can contribute to helping older people in need of care.

[…] 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 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.

“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.”

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.

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] 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.

[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!

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] You’ve made me think … I will have to come up with a plan for the future.