Outside the family
My 80-year-old mother is now very frail and requires constant supervision. I am single and have no brothers
or sisters, so I feel trapped in the house and more and more stressed. Can you suggest any solution?
All carers need some time for themselves if they are to continue being able to care, and you have obviously tried to manage without such help for too long. Approach your social services
department and ask them to assess your needs as a carer (as well as your mother’s) and say that you need regular respite care for your mother. See the question on carers’ assessment that appears earlier on in this chapter for more details.
There are a number of ways that respite care can be provided.
These include someone coming in to stay with your mother once or twice a week, day centres, or care provided away from home to allow the carer to have a short or long break. Some social services departments now have contracts with Crossroads – Caring for Carers, an organization whose objective is to give people like you a break. If you have a local Crossroads scheme, you could also approach them direct (see your phone book for a local number, or see Appendix 1 for contact details for the national organizations). The local PDS Branch might also be able advise on what is available in your area.
My wife is now very immobile and I often have to ask our teenage daughter to help me lift her or to stay in while I am working late. She is devoted to her mother but I don’t want to take away her youth. How can I balance all our needs?
This is a difficult and sensitive problem. If you are convinced that everything possible has been done to maximize your wife’s mobility, then you need to sit down together and discuss what options you have for rearranging your daily and weekly routines.
Much will depend on what kind and quantity of help, from family and friends or from statutory and voluntary services, is available to you.
It sounds as though a thorough, multidisciplinary assessment (involving medical, nursing, therapy and social services personnel) would help, and you can request this through your GP or social services department. There is now much more awareness of the needs of carers, including young carers, than there was. If your wife’s needs are being assessed, you and your daughter as carers have the right to have your needs assessed too.
Also under the Carers and Disabled Children Act 2000, carers have the right to an assessment regardless of whether the person they
care for is having their needs assessed. This includes children and teenagers who help with care tasks. As a result, the carer can have services provided just for them. See the PDS booklet Meeting Your Health and Social Care Needs (B70) and information sheet Carers Assessments (FS46) for more information
It is certainly wise to ensure that your daughter is able to spend time with her friends and to have leisure activities suited to her age, but she may also enjoy, and benefit from, the time she spends with her mother and feel good about being able to help. You don’t say whether you also have a son. If you do, you should try to share the caring tasks between them rather than assume that these are girls’ jobs. Most people find some caring tasks easier to cope with than others. It would be worth trying to discover if there are tasks such as toileting or bathing which your daughter or your wife find particularly distressing. You could then feed this information into the assessment process.
You do not say if your daughter is still at school. It might be a good idea to discuss her caring role with her school, as it may have an effect on her ability to cope with her studies.
Several organizations, including Carers UK, the Princess Royal Trust for Carers, the Children’s Society and some Crossroads – Caring for Carers schemes provide information and support to young carers. See Appendix 1 for contact details.
My wife has had Parkinson’s for over 20 years and I have no problems coping with the physical tasks of caring.
However, she has recently become quite confused and sometimes does not recognize me. I find this very distressing and would appreciate some practical and emotional support.
Support for the carers of people suffering from confusion and dementia (the general name for an illness in which the brain cells die faster than they do in normal ageing) is absolutely essential because, as you say, it is so distressing. However, first you must ensure that your wife’s new symptoms are not due to some other temporary cause like infection, medicines or some other illness, so ask your doctor about this as soon as possible.
If the doctor decides that the cause of your wife’s deteriorating mental abilities is dementia, organizations like the Alzheimer’s Society and Alzheimer’s Scotland – Action on Dementia, can provide you with information, practical advice and emotional support. They support people with all kinds of dementia and their families.
You might get support from other people coping with similar problems through a local Alzheimer’s group, PDS branch or carers group. You can also apply to the social services department (see your local phone book for their number) for an assessment of your wife’s needs and your needs as carer. They will then be able to propose a package of services to meet your needs (see Chapter 4 for more information about these community care assessments).
There are also some very helpful booklets for carers of people suffering from confusion and dementia. These include Coping with Dementia: a handbook for carers available from Alzheimer’s Scotland and Caring for Someone with Dementia published by Age Concern (see Appendix 2 for details). The PDS also has an information sheet on Dementia (FS58), which includes information on communicating with someone with dementia.
My husband has had Parkinson’s for the last six years but he has also developed some serious mental and
behavioural problems and is not recognizable as the man I married. He keeps exposing himself and trying to touch any female who comes to the house. The result is that my friends are embarrassed to call and I am losing my friends as well as my husband. Please help!
This is an extremely difficult problem. Inappropriate behaviour such as this can be a side effect of the Parkinson’s drugs, general mental deterioration which may or may not be due to Parkinson’s, or frustration – or a combination of all three. If you have not already sought any help, it is important that you discuss this with your GP and Parkinson’s specialist. Depending on his or her overall view of your husband’s condition, a referral can be made to another specialist such as a psychiatrist. The PDS
booklet Sex and Intimate Relationships (B34) contains a section on drug-side effects such as these.
You could try to screw up the courage to confide in your closest friends and see if they feel able to share the problem with you rather than hide away from it. It will help if you can reassure them that he really means no harm and is not fully responsible for his actions.
The other thing that will help is for you to have some days when you are not responsible for his care. You could try to arrange some day care through the social services department or hospital and, while he is away, try to get out and do something which you enjoy.
I am the ‘carer’ for my husband at present, but he would like very much to be more in control of what he does. I have heard of the Expert Patient Programme run by the NHS, but what exactly is it?
The Expert Patient Programme (EPP) is an NHS-based training programme that provides opportunities for people who live with long-term chronic conditions to develop new skills to manage their condition better on a day-to-day basis. Set up in April 2002, it is based on research from the US and UK over the last two decades, which shows that people living with chronic illnesses are often in the best position to know what they need in managing their own condition. Provided with the necessary ‘self-management’ skills, they can make a considerable impact on the management of their condition and their quality of life.
‘Expert Patients’ are defined by the NHS as ‘people living with a long-term health condition, who are able to take more control over their health by understanding and managing their conditions, leading to an improved quality of life.’ Expert patients:
• feel confident and in control of their lives
• aim to manage their condition and its treatment in partnership with healthcare professionals
• communicate effectively with professionals and are willing to share responsibility on treatment
• are realistic about the impact of their disease on themselves and their family
• use their skills and knowledge to lead full lives.
Becoming an expert patient involves taking a 6-week course lasting 21⁄2hours per week led by people who live with a long-term health condition.
For more information about courses in your area, you can contact their enquiry line on 0845 606 6040 or website – www.expertpatients.nhs.uk.
The questions in this chapter are about communication. People with Parkinson’s often find all kinds of communication are limited by the Parkinson’s symptoms. Not just about speech, which is only one of the many ways we send and receive messages. Handwriting and non-verbal aspects of communication, such as facial expression, body language and body posture, can also be affected.
In dealing with communication problems that arise, it can be helpful to think about how the different aspects of communication relate to each other as well as focusing on individual parts.
Communication is about much more than speech, and the loss of communication skills in people with Parkinson’s can create a misleading impression to those who come in contact with them.
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Communication
We cannot stress too strongly the major contribution of effective communication to a good quality of life, and the importance, if you are experiencing difficulties, of obtaining early help and advice from a speech and language therapist You should either be able to refer yourself via your local hospital, or your doctor or Parkinson’s Disease Nurse Specialist should be able to refer you.