As a carer you should continue to receive high quality support from your care team. Try to embrace any opportunity to discuss your needs so that they are met and you can then provide the most effective care possible.
One of the principles of palliative care is that the needs of the carer and family should also be assessed and addressed. Talk to your care team if you feel that you need help or are finding it hard to cope. They will be familiar with your needs and can identify ways to support you, for example by calling on other professionals, respite and day care as appropriate.
The care team will be able to respond honestly and sensitively to any questions you have so that you are always fully involved and consulted. You will probably need help in coming to terms with the withdrawal of any life-prolonging treatments and losing someone you care for. Being able to openly discuss that life is coming to an end can help you to prepare for this.
In addition to your care team there are various other support organisations that can help. Your care team may be able to provide suggestions and contacts or you can look in your local library or online.
Caring for the carer
The palliative phase of caring for someone with Parkinson’s can be physically, emotionally and spiritually demanding, particularly if you are looking after them at home.
You will probably be so focused on caring that you forget to 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. See Carers - 'Looking after yourself' for suggestions.
It is very common for a carer to feel stressed. Your role is considered to be one that is strong, supportive, to reduce the anxieties of those around you and, in the late stages, nurse, but this of course places you under a great deal of pressure which is not good for you or the person you are caring for.
Your doctor can call on other professionals, such as a physiotherapist, an occupational therapist or counsellor, to help. Don’t hesitate to ask for help before stress builds up, as it will compromise the level of care you are able to give.
Take a break
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 just an hour or two.
If you feel that you need a break, talk with your doctor or social worker and they will be able to put you in touch with services to help. How this is financed will depend on where you live, and sometimes on your financial situation, so you will need to discuss this with your doctor, the service provider or a respite/palliative care organisation.
Discussing end of life
It is important to be open about end of life issues and plan ahead to do the things you and the person you care for both want to do while you can.
It can be difficult to start conversations about this but the following may help you when having these discussions. Also making notes about what is agreed will help later.
- Talk about what the person you care for wants both before and after they die.
- Discuss how you both feel about life prolonging treatments and organ donation.
- Think about planning and paying for a funeral.
- Talk about the dying process itself and what it means to you both.
Providing reassurance and comfort
Everyone has different needs, but towards the end of life emotions such as fear, loss of control and loss of dignity are very common. You, your family and close friends can reassure and comfort the person you care for to help relieve their worries and promote a sense of calm and peace. For example:
- Allow time to be together to talk, reminisce, read or watch television. Just being there can be very comforting.
- Be a good listener.
- Discuss any anxieties about dying, such as leaving family and friends behind.
- Answer questions and try not to withhold difficult information.
- Respect a need for privacy.
- Give reassurance that any wishes expressed, perhaps in a living will, will be honoured.
- Ask if you can do anything else to help.
Who else can help?
There are a number of voluntary organisations who can provide support in many ways, including practical help in the home and advice on caring. They will have trained advisors who can talk with you and guide you through this challenging time. Your national Parkinson’s association or your care team may be able to provide contacts, or you can ask at your local library or look online.
Support groups, where you can meet others in a similar situation, can be helpful for just talking, exchanging ideas and experiences, coming to terms with your situation, assessing the choices available and addressing your physical, spiritual, emotional and psychological needs. Again, ask your care team or Parkinson’s association if they can advise.
Your care team may also be able to put you and your family in touch with a palliative care social or community worker as they will know what support services are available in your area. They are usually trained in counselling and can help you to choose the right options for you.