One of the most valuable strategies for coping with caring is to have a regular break, often known as ‘respite care’, and to make time for yourself away from your routine and from Parkinson’s. Even brief breaks are important as they provide an opportunity to recharge your batteries, clear your mind, pursue your own interests and return to your role refreshed and revitalised. It is important though that this time is spent relaxing or doing things you enjoy and not just catching up on jobs!
Respite can benefit the person you care for as they will have different company or perhaps different surroundings in your absence. They may also be relieved that you are having a break and should benefit from a more relaxed you on your return.
Respite can take many forms:
- Someone, such as a friend, family, social care worker, or volunteer from a recognised carer support charity, may come to your home to be with the person you look after for a few hours or overnight. This can be occasional or regular, depending on your needs.
- The person you care for may go to a day centre regularly so you can have a break, or they may go to a care home for a short stay, on an occasional or regular basis.
- You may go on holiday together but to a specialist centre or hotel where they can provide care so that you have some time to yourself but you both benefit from quality time away from home.
Thanks to modern technology you can still keep in touch and be contacted if there is an emergency, so don’t be afraid to take a break.
Depending on where you live, you may be eligible for financial help to cover the cost of respite care. Ask your healthcare team if they can provide information or talk to your local social services department.
Care homes and hospices
Over time, you may feel that you can no longer manage and may therefore need to consider alternative options. You shouldn’t feel guilty about this, although this is a natural reaction. Parkinson’s is a complex condition and in the later stages, specialist care is often needed in order to manage the increasing complexity of daily life.
Depending on where you live, you may need to arrange an assessment to see if any financial help can be provided to cover new arrangements. Sometimes you can arrange short breaks to give you respite when you need it.
Retirement or assisted accommodation – This is specially designed for people who want to maintain some independence but have a support network on site to help when needed. You and the person you care for may be able to live in your own flat but have meals or personal care provided for example.
Care homes – Care homes are generally staffed 24 hours a day, 7 days a week, with meals and laundry included. Usually the carer is not a resident but this depends on individual circumstances. Some care homes also provide nursing care but always check the level of care and whether this will suit the anticipated needs.
Some homes have more experience of dealing with specific conditions, for example Parkinson’s or dementia. Don’t be afraid to ask about their experience and if possible, look at several care homes to compare and see which you think will be most suitable.
Hospices – Hospices provide more specialist care than care homes, usually in the advanced phase of a condition. Sometimes this might be for a short time to stabilise a problem or give the carer a break. Your care team will be able to advise if they think hospice care is appropriate.
Our thanks to AbbVie for permission to use the following source in compiling this information: Caring for YOU! The following PDF is an extract from the ‘Caring for YOU!’ series of magazines for caregivers.
Making a contingency plan