As we have seen in the previous sections, for you to continue giving good quality care to your friend or relative with a brain tumour, you must first look after yourself. We have given lots of great suggestions that other carers have used and found valuable. However, sometimes to look after yourself and your loved one you may need just a bit of extra time out.
In the videos below, Judi (left) and Craig (right) discuss the importance of getting time to yourself and the pivotal role that respite care had in helping them care for their loved ones.
In this section we look at how to get some respite, some time for yourself. There are different types of respite care that can be used, but some carers are hesitant about using them. We look at:
- Different types of respite care
- Concerns some carers have about using respite care and
- Tips that may address these concerns.
Types of Respite
It may depend upon what sort of services you have in your area, but respite care can come in lots of different forms. Contact some of the services we have listed in the resources section to find out more. It doesn’t hurt to ask. It doesn’t mean that you have to say yes to what someone is offering.
Some of the more common respite organisations in Australia are Blue Care, Centacare, RSL, Commonwealth Respite and Care Link, UnitingCare and many more.
Often you can choose what you need. It can be for a few hours or part of a day (called Short Term Breaks) or for a full day, overnight, a weekend or a few weeks (called Longer-Term breaks).
See the types of respite care on the next page…
- In-home respite: Someone comes to your house for as little as two hours at a time to spend time with the person you are looking after. Even short breaks of a few hours per week can give you time to do something you like doing. You can stay home and just ‘switch off’ or go out and do something nice for yourself (Remember your list from the Reducing Stress section).
- In-home respite: Someone can come and take your friend or relative out for a few hours on an outing.
- In-home respite: Someone can come and stay the night so that you get a good night’s sleep.
- Centre-based respite: Held at a centre or club that organises group activities for the person you care for, allowing them to meet other people.
- Community access respite: Provides activities to encourage a sense of independence in the person you care for by providing social interaction
- Residential respite care: A short stay in a residential care home can be organised for the person you care for
- Consumer-directed respite care (CDRC): A CDRC package gives you more choice about the type and delivery of respite care
Some of this information was adapted from Carer Gateway’s page on respite , which explains the different types of respite you may be able to access and to see what may be available in your area.
Addressing concerns about respite care
Some carers are hesitant to use respite care because they:
- Believe that caring should be a family responsibility
- Are scared that their loved one won’t be looked after as well as they would look after them
- Don’t have enough information about what is available and what types of respite exist
- Don’t know the location of the respite care
If you have any of these concerns, it may be helpful to consider the following suggestions and advice:
Concern: Caring as a family responsibility
Remember that people often don’t have big extended families like they used to and it is a big job for just one or two people.
Concern: Won’t be looked after as well as at home
Remember that you will be able to give even better longer term care if you have the occasional break. Sometimes people end up in permanent care because the carer hasn’t been able to keep up what is needed to look after someone.
Concern: Lack of information and location
Contact Carer Gateway and your local services to see what may be available in your area. There is plenty of information on our resources pages.
Fears about respite care and tips to overcome them
Some carers feel guilty about thinking about using respite care. Many fears have been expressed by carers including:
- Fear that their relative or friend won’t be looked after in respite care
- Fear that the person will be confused and scared away from the security of home
- Fear that the respite workers won’t cope with the person’s needs
- Fear of their loved one getting upset if they are unwilling to attend respite care
- Fear that they will be judged by others if they use respite care
The following may help reduce your fears:
- Contacting the service and asking questions. You are a customer and you have the right to find out how your relative or friend will be looked after in respite care. You may want to go to your Notebook to jot some questions that may be useful.
- Asking specifically what they do to help the person get comfortable with respite care. How do they handle it if someone gets confused and scared away from the security of their home?
- Having conversations about your needs, even if it is in a casual, “I just need time to go and do…..”. Saying that you understand that they may be unsure, but then suggest what they may get out of it. Seeing if the service allows you to stay with the person initially to settle them into respite. MANY people say that, at first, their loved one wasn’t keen to go, but then loved it and looked forward to it.
- Knowing that there is much evidence showing that you can give better care if you give yourself a break. Reminding yourself that every person’s caring story is different and you have every right to get some respite without being judged.
- Discuss with the care workers the individual needs that your loved one has and let them know what works best at home. Sometimes writing these down for the care worker can help if there is more than one care worker.
Overall, to reduce your fears, we suggest listing your concerns and asking services questions about what they do about such concerns. When someone has become so dependent upon you it can feel like a big leap of trust to allow someone else to care for them.
You can ring and arrange a visit before deciding if it is right for you and your loved one. Compare what is on offer in your area.