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“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.”

[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!

I have Parkinson’s Disease and I dread what the future holds for me physically and mentally.

[Translated] In the next few years, Germany will need more good care facilities, if possible connected with other living facilities in which partners can also live. With high quality standards, but also with empathetic nursing and care staff and good living standards. With medical care, physiotherapy and a good activation program. Care should be affordable for all and not be passed on to family members who risk their health, private life and income for it. Nursing home care should not be stigmatized, as it relieves relatives of a great deal of work and ensures care free interaction with the persons to be cared for. Financial reasons should not be the reason why people do not go to a nursing home, because the psychological burden is too high.

[translated] This issue [of long-term care] needs to be discussed and prioritised by the state, because the population is ageing, children are going abroad and local structures for [supporting older people] need to be improved and a concrete annual budget established. We will all reach an age when we need help.

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

[translated] Centers for socializing of the elderly should be provided, for playing chess, knitting, and so on; because after they retire they are at home all day and have no communication with other 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] 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….

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