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

[translated] There is a need to develop care services in the country, especially home (community-based) care as well as mental health, rehabilitation and recovery, and palliative care services.

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

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.

[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] 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.

[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] These studies are interesting, but [I do not know] whether the obtained results will have an impact or be used by the competent institutions, in the direction of improving the situation with provision of care to the elderly… We have low incomes and therefore we do not have the opportunity to resign or pay for caregiver or nursing home services… nor do our parents have such pensions that can cover their expenses to stay in a nursing home, where they will live comfortably and be treated with dignity …