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

[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….

[Translated] In Belgium, we are immensely lucky that our health care system is based on solidarity. It is important that this continues and is even strengthened to avoid inequalities.

[translated] Well, I hope that caregivers get a protected or priority status – I mean at work and as workers, everyone needs us, our attention, and to some extent it feels like we are omnipotent and can care for others, care for ourselves and sometimes, care for our parents. That is wrong.

[Translated] It would be good if the decisions were also upheld when the care allowance is raised. Often the decision ends up in court and it is possible to challenge it. It should not be made difficult for those who are dependent on this financial support.

[Translated] I would not want my future to be in the hands of politicians but in the hands of qualified experts.

[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.

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] None of the services I have used have the means to help dependent people with multiple sclerosis. It’s a horror. I have to do everything on my own because the home carers for example can’t come if I’m in hospital or on rehabilitation…the domestic helpers are no longer available, I am not entitled to a transport service … I never qualify. I am revolted. I live alone without family and it’s really hard. I’ve been able to get help at times but it doesn’t last because the budgets are so small. Even people with severe physical disabilities don’t have adequate help. The Aviq [Agence pour une Vie de Qualité] has not been functioning for years… the situation is very serious. And it has become even worse with Covid.

[Translated] I would like such surveys to be more efficient and to have more participation in them, and consequently I would like to talk and learn more about these issues in order to take action and make life easier for many individuals.