Home

[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] Let’s not abandon the elderly, they do not deserve that.

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.

Thank you for dealing with this study as it will help many people.

[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] Additional taxation for end-of-life care is not equitable, considering that people already pay for health insurance. It would be necessary to eliminate corruption in the national health system, increase the quality of services and put a stop to the capture of the national health system by private entities who misappropriate funds that should be invested in our health, turning them into personal profit.

“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] I have placed my mother in a nursing home due to advanced dementia. What is missing there are people who occupy themselves with the old people. […] Due to Corona and very limited visitation opportunities, loneliness is increasing. Thus all voluntary visiting services fall flat. […] As much as one pushes the models to accommodate old and young in shared apartments together, I found that my mother with advancing age – who loves her great-grandchildren very much – is simply more stressed when she is visited, it is too loud, too wild, etc.. So she doesn’t want to attend family gatherings anymore either. For a while she was very enthusiastic about the day care center in [redacted] – there she was offered everything she needed. Someone talked to her, they played and made music together, they prepared the snack together, etc. This combination between home and day care center would be IDEAL in my opinion.

[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.

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.