Manual A Respite in Time

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In home: a support worker looks after the person you care for in your home. If you care for someone over the age of 65 years , you may be able to access respite support through a Home Care Package or the Commonwealth Home Support Program. If you care for a person with disability under the age of 65 years , they may be eligible for support under an NDIS plan that provides the carer with a respite effect. If the person is accessing the NDIS, but you are not getting the respite support you need, consider asking for a review of the NDIS plan, explaining your need for a break in relation to the goals of the person you care for, and the importance of a break in supporting you to continue caring.

Other carers should contact your local Commonwealth Respite and Carelink Centre on to talk about the options available in your area. Your local Commonwealth Respite and Carelink Centre can help you choose from the options available to you and plan flexible respite that best meets your needs, and the needs of the person you care for. Not all respite opportunities will be available in your area and most will involve a cost.

They may also be able to help you to organise bookings and find out if financial assistance is available to help you cover any costs. Who are carers? Carer Survey Projects and publications. Advice for carers. Home Advice for carers Time for yourself About respite.


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Other states are starting to follow Washington's lead and striving to allocate more funds for community-based programs that can serve as a source of respite for caregivers. Daphne, a social worker at the Stafholt Good Samaritan Center in Blaine, Washington, says that while their Center is receiving fewer inquiries about residential respite than in the past, it is still a vital service. Also, sometimes people come for a brief stay, to see how it works, and then come for a longer visit.


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The National Respite Coalition NRC , which has traditionally focused primarily on care for families with special needs children, is expanding its focus and is developing a strategic plan to enact legislation that would unify respite services and help caregivers identify respite financing. This legislation would eliminate the confusion that many caregivers face in finding help, whether they are caring for an adult or a special needs child.

This approach is called Lifespan Respite. It means, in the words of the NRC, "the provision of community-based planned or emergency shot-term relief to caregivers from the demands of on-going care for an individual of any age with special needs. Oklahoma also provides this coordinated service. In a state with a Lifespan Respite program, one phone call to a social worker, area aging council, family social service agency or similar organization will enable the caller to find all local respite options, along with information on how respite might be funded.

The information covers all types of service, all means of financing, for all ages and conditions of care, and places the power of choice in the hands of the caregiver. NRC sees a future in which caregivers can find what they need without dozens of phone calls and dead-end efforts. But until Lifespan Respite becomes a reality, persistence is necessary, according to Evie, who lives in Colorado and cares for her husband with multiple sclerosis.

Be persistent. In most communities, there are resources," says Evie. Finding the right respite care can be a challenge-like so much of family caregiving.

But the choices are improving, and chances are that after a few phone calls and visits you will identify some promising options. According to Christine, "The hardest part of respite is deciding to do it. Once you can envision yourself getting out of the house, or taking Uncle Jack to a center, you will be able to find what you need. It is one element of taking charge of your life and being good to yourself, of seeking support for your hard work, and of being open to ideas that promote your loved one's independence.

These are hallmarks of successful caregiving. Respite can help you be a healthier, happier person and also be better able to care for the person you love. In our book that's a winning combination. Family, friends, and professional counselors talk a great deal about respite- allowing a family caregiver to turn over full responsibility for their loved one to someone else so they can get some rest, restore their own sense of themselves, and find the strength to continue. It seems like a logical step, particularly in a long-term caregiving situation.

But often, caregivers either reject respite outright or specify so many requirements that it never happens. It is important to explore the psychological and emotional obstacles that must be overcome before a caregiver can even decide to take respite.

Where Does Respite Happen?

Chris, RN, MSA, who has been counseling caregivers for the past ten years, understands the complexities of respite and lends caregivers a sympathetic ear. It's the rational thing to do, but caregiving is a highly emotional situation and reason can't always cut through the thick foliage that surrounds a caregiver's heart. And in terms of needing relief, if the caregiving is short-term, it's emotionally easier to do it yourself-just tough it out.

Over a long period of time, however, you will become too taxed and your survival is at risk. Just as we advise parents not to spend every hour of the day and night with their children, because it is not healthy for the family, so two people living under stress need the refreshment of occasional separation and change to keep the relationship loving and healthy. And the presence of a third person, especially on a regular basis, enables the caregiver and the person cared for to have a new conversation, see things from a different perspective, and occasionally even vent their feelings in confidence.

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The first, and most obvious, fear is that the person who comes in or the institution that provides care will not do a good job, will not care for the person carefully or lovingly. In other words, something will go wrong.

RESPITE: Time Out for Caregivers

And of course, this is not an unrealistic fear-things can and do go wrong. But this is a reason to try to find respite help early on, so that reliable people and institutions can be in place, and that the caregiver has access to a trustworthy, dependable, and competent person when a respite break is desperately needed. The second fear is harder to talk about. It is the fear that the temporary caregiver may do an excellent job-and that the family caregiver will feel inept or not needed.

BRIA observes that this fear can be very difficult to overcome for people who are plunged into caregiving with little or no training, which of course is true of most caregivers. If the person has no training and perhaps is not entirely secure about caregiving to begin with, the fear that an outsider will do a better job can be substantial. If your whole identity has become that of constant caregiver, who are you when you do not do that job?

If you have no life outside the home, what do you do with free time? Time away may open your eyes and cause you to begin to face the reality of the situation and how very hard it is, and this can be overwhelming for some people. Finally, there is another powerful force at work, stemming from a value that is fundamental to the health of families. It is the fear of not meeting our responsibilities and commitments to those we love.

Carers NSW - About respite

A parent's job is to protect and care for their child. The Ten Commandments direct us to "honor thy father and mother. We need to intervene in a way that makes sense emotionally as well as practically. What if that promise is more important than anything in the world? Caregivers who can't recognize that the demands of caregiving often cross the line between family responsibility and responsible healthcare for themselves have a very hard time acknowledging their own needs and attending to them.

Oregon's program of community partnerships brings together all the types of respite and all the providers in a given community. A caregiver can make one phone call and get a motherlode of information. As Debbie emphasizes, the basis of lifespan respite is that it is family-centered. The whole family is helped, not just the caregiver and not just the person with special needs. For her, that was a much-needed respite. The respite provider was in the house, so the mother knew there would be no knock on the bathroom door and she could truly savor her bath.

For another family, where the disabled father used to love playing golf, respite meant that an understanding man would take the father to the golf course on Sunday afternoon so he could have some pleasure and the family could relax in their own home. Someone might make an initial contact, get a list of resources, and then not do anything for two months. They need that time to get comfortable with the idea of moving ahead. It's not up to us to tell them what to do or make the choice for them. But if someone has behavioral changes and needs monitoring, or their behavior is unpredictable, fear of the unknown sets in.

The person is still there, looks the same, is in the house eating or watching television. But things have changed. People in these families get less help, and it's especially difficult because the caregiver is in some sense grieving for the person that is lost. For many people, it's just embarrassing to ask for help. They were taught not to do it, and they don't want to. And they don't like admitting that they can't do everything themselves. BRIA's interfaith volunteer caregivers group does not offer medical or nursing help, but rather brings friendship and support to the family.