This information sheet is for anyone caring for someone with final stage Parkinson’s.
The palliative phase of caring for someone with the disease can be physically, emotionally and spiritually demanding and looking after someone at home can become increasingly difficult and stressful. One of the principles of palliative care is that the needs of the carer and family should be assessed and addressed, so do talk to the medical team if you feel that you need help or are finding it hard to cope.
Caring for the Carer
As a carer you are often so focused on your responsibilities that you forget to assess your own life and look after yourself properly. Your personal needs may sit firmly at the bottom of a list of priorities, but as a carer it is very important that you look after your own health and wellbeing too. Otherwise, you may not be in a fit state to take care of anyone else. See Rewrite Tomorrow: Carers - How can I help myself? for help in achieving this.
Stress
It is very common for carers to feel stress. Your role is to be strong, supportive, allay others’ anxieties and, in the late stages, nurse. Of course, this is a huge amount of pressure. Carers and family should themselves benefit from the high quality support of the existing care team who will be familiar with everyone’s needs and can enlist the help of additional professionals, such as a physiotherapist, an occupational therapist or counsellor if required. The team will be able to answer questions honestly and sensitively so that you are always kept fully in the picture and consulted on each aspect of care. A carer’s personal assessment, including a need for respite and day care, should also be carried out.
Take a break
Over time carers may feel overwhelmed and in need of a break. ‘Respite care’ will allow them to have time for themselves, away from routine and from Parkinson’s. Even brief breaks are important as they provide an opportunity to recharge batteries, clear the mind, pursue personal interests and return to the role of carer refreshed and revitalised. It is important that this time is spent relaxing or doing things enjoyed and not just catching up on jobs.
Respite care can take many forms, including day care or a few days residential care for the person you care for or even someone coming to the house to relieve you for a while.
If you feel that you need respite care talk with your doctor or social worker and they will be able to put you in touch or refer you to people who provide such services. How this is financed will depend on the country in which you live, and sometimes on your financial means, so you will need to check locally with either your doctor, your Parkinson’s association or a respite/palliative care organisation.
Discussing end of life
It is important to be open about end of life issues and allow you and the person you care for to plan ahead and do the things you both wish to do before they die. By doing so, the UK’s National Council for Palliative Care believes life is made “better and easier”.
Of course it can be difficult to start conversations around end of life issues, but the following is a broad outline of some subjects which should be discussed:
- speak about and record what the person you care for wants both before and after they die
- how you both feel about life prolonging treatments and organ donation
- planning and paying for a funeral
- the dying process itself.
For more information on this see information sheet 3:
Practical Support and information sheet 4
: Ethical Concerns.
Who can help?
Patient associations and a number of voluntary organisations can provide support in multiple ways including practical help in the home and advice on many aspects of caring. They will have trained advisors who can talk with you and guide you.
Support groups, where carers can meet with others in a similar situation to exchange ideas and experiences, can help in coming to terms with their own situation, assess the choices available and address their personal physical, spiritual, emotional and psychological needs.
The family and care team doctor will be able to advise you on the best options to suit your circumstances and those of the person you care for. You and your family may also want to talk with a palliative care social or community worker as they will be familiar with the services in your area and can spend time talking with you about the various options available. They are trained in counselling and can support you in the decision making process.
The EPDA website contains the contact details for European and International Parkinson’s organisations. or ask your doctor’s surgery for details of other patient and support associations. Also ask at the local library or look online, and see ‘Where can I get more information’?
