unacceptable. This kind of psychologically or emotionally based need may not be acknowledged by social services as ‘real’, but if it is a factor in your parents’ situation, you should press your case and see if you can get some support from relevant local voluntary organizations who may know of other similar cases.
If there seem to be advantages in moving to another house, either to be nearer to sources of help or because her current house has other disadvantages apart from the stairs, she can consider applying for rehousing or selling up and buying a more suitable property. Most areas now have a variety of specialized accommodation for older people offering different levels of supervision and/or support. The local housing department should be able to tell her what is available in the area and what her chances of being allocated certain kinds of accommodation would be. The number for the housing department should be in your local phone book or social services/Citizens Advice should be able to give you the number. The following questions and answers have some more information about this.
Where can I get advice about adapting my home to make it easier for me to manage?
Adaptations can sometimes make life easier and can range from small adaptations, such as grab rails, to major building work, for example to make a home suitable for someone who uses a wheelchair or to put in a downstairs shower and toilet if a person cannot get up stairs.
Before any adaptations are made, it is important to get expert advice. The first person to contact is an occupational therapist who can assess the problems you are having and suggest solutions, which may include adaptations.
Care and Repair, an organization which aims to improve the housing and living conditions of older and disabled people has a useful guide, In Good Repair, which gives information on repairs, adaptations, funding and finding a reliable builder or tradesman.
This guide will answer most of the questions that enquirers contacting the PDS have. The Disabled Living Foundation and the Centre for Accessible Environments could also advise on the sort of adaptations that might be possible and design issues. See Appendix 1 for contact details.
I own a small terraced house but am finding it difficult to manage. Can I apply to the Council for rehousing?
Yes, you can certainly approach your local authority housing department about any housing problem whether you own your present accommodation or not. The options which will be open to you will depend on the severity of the problems you are facing, local housing resources, the demand for the type of housing you need, and the financial and other conditions that are attached to any such rehousing. However, before thinking of rehousing, check whether your present house could be adapted or some support services provided to help you manage better in your present house. If you would like to do this, contact your local social services department for an assessment of your needs.
We see quite a lot in the papers about sheltered housing.
What exactly does it mean and who owns it?
Sheltered housing is accommodation which is purpose-built for people who need a certain amount of supervision because of old age or disability, but who wish to maintain a home of their own.
The amount of supervision available can vary from a warden on site who can be contacted in an emergency to high-dependency units where there is still a degree of privacy and independence, but where higher staffing levels allow assistance with meals and personal care. Sheltered housing may be owned by the local authority, by housing associations or by private companies and may be managed by various combinations of these organizations.
Your local housing department will be able to provide further information. The number should be in the local phone book.
Social services/Citizens Advice should also be able to give you the number.
Questions about residential and nursing homes are discussed in the section on Long-term care in Chapter 13.
Parkinson’s is a real, physical illness. Although it can sometimes be difficult to keep positive, your attitude and approach to managing your condition can make a big difference to how you feel about yourself and how you try to make the best of your life with Parkinson’s. This has been emphasized by two people with Parkinson’s who have written about their experiences. The first was Sidney Dorros, an American who wrote a book called Parkinson’s: a patient’s view. He liked to talk of ‘accommodation without surrender’ and would remind people of an old saying – ‘If
Attitudes and relationships
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you get a lemon, make lemonade’! The second is a Danish psychologist, Svend Anderson, who has written about his experiences of Parkinson’s and the importance of attitude in an information sheet published by the PDS, The New Role of the Patient(FS16) and in a book called Health is Between Your Ears:
living with a chronic illness. See Appendix 2 for details of these books.
This chapter is also about the relationships – family, profes-sional and public – that affect people with Parkinson’s and those who live with or look after them. As will become clear, much can depend on the attitudes established in the early weeks and months after diagnosis and on people’s willingness to talk through their difficulties and, if necessary, ask for help.