What are some types of assistance you can offer to carers to help them manage a changing relationship?

Print

Family members and carers play a crucial role in our community—often without realising. For many people, looking after a loved one is 'just what you do'. They are mums and dads, sons and daughters, brothers, sisters, grandparents, spouses, friends and neighbours.

The Carers (Recognition) Act 2008 defines a carer as:

An individual who provides, in a non-contractual and unpaid capacity, ongoing care or assistance to another person who, because of disability, frailty, chronic illness or pain, requires assistance with everyday tasks.

Caring for someone requiring end of life and palliative care can be very physically and emotionally demanding. As a family member or carer, you may need to learn quickly about:

• the person’s illness and what symptoms they might experience
• what medications and treatments are available
• how to care for someone towards the end of life
• communicating openly and honestly with each other and the healthcare team
• having a plan for what to do in a crisis
• carrying out advance care planning with your loved one
• discussing and reviewing the advance care plan, if required
• keeping notes on what symptoms and treatment the person is having and what advice they have been given by different health professionals
• how to look after yourself
• where to get help.

Some family members or friends assist with preparing meals, medications and transport to medical and other appointments. Others provide emotional support. Being involved in the more intimate aspects of care such as administering medications, personal hygiene, bathing, grooming and skin care are also common tasks of family members and carers.

You are not required to take on any of these roles unless you feel comfortable in doing so. If you are not sure, ask your healthcare team or GP for information and support.

Support available

It can be difficult to ask for help, but there are many organisations and counselling services that can help you in your role as a family members or carer.

Respite care

Respite care is a form of support for carers. It gives you the opportunity to have a break from your caring role for a few hours or days or for longer periods, depending on your needs, the needs of the person you care for, your eligibility and the services are available in your area. It may be centre-based at a day centre or residential care facility, or home–based.

Find out more about accessing short–term relief for carers:

Financial support

You may be eligible for an Australian Government payment for carers if you provide daily care to somebody with a terminal illness.

Carer Payment provides financial support to people who are unable to work in substantial paid employment because they provide full time daily care to someone with severe disability or medical condition, or to someone who is frail aged.

Carer Allowance is a fortnightly income supplement for parents or carers providing additional daily care and attention to an adult or dependent child with disability or a medical condition, or to someone who is frail aged. Carer Allowance is not income and assets tested, is not taxable and can be paid in addition to wages, Carer Payment or any other income support payment.

Carer Supplement is an annual lump sum payment to help you with the costs of caring for a person with disability or a medical condition if you are receiving Carer Payment or Carer Allowance.

The Queensland Government's Carer Business Discount Card recognises and supports carers, including approved foster and kinship carers, by providing discounts on goods and services at participating businesses throughout Queensland.

To be eligible for a Carer Business Discount Card, you must:

• Be approved as a foster or kinship carer by the Queensland Government Department of Communities, Child Safety and Disability Services, or
• Be a resident of Queensland whose Queensland residential address is registered with Centrelink and who receives the Centrelink Carer Payment or Carer Allowance.

Support groups and organisations

Find out about support services for all carers, with some additional services specific to groups such as parents and grandparents, older and younger carers, and carers from culturally and linguistically diverse (CALD) backgrounds.

Family and carer health and wellbeing

It can be easy to put your own needs last, but it is important if you are feeling tired or stressed to look after yourself so you are still able to care for the person that needs you the most.

Ways you can look after yourself include:

• doing exercise—this will help you maintain your energy
• getting enough sleep—carers often have trouble sleeping, and if you find sleeping difficult on a regular basis, speak to your nurse or doctor
• maintaining a healthy diet
• doing something for yourself that you enjoy every day, and keeping up your usual activities as much as possible
• maintaining social contact with friends
• practicing your own spirituality or religion—whether it be meditation, yoga, prayer or discussion with a pastoral care worker.

Your emotional health

The emotional demands of caring for someone with a life-limiting illness can be high. As a carer, it is important to look after your own emotional needs. This is important so you can continue your caring role and maintain your own emotional resilience.

Counselling is about talking with someone who can assist you in making a difference to your caring role and your life. Counselling services may help you to:

• reduce stress
• manage challenging behaviours and situations
• manage your relationship with the person you are caring for
• improve your coping skills
• continue in your caring role for as long as possible.

Finding support

Support for family members and carers is available through:

Young carers

Young carers are children and young people aged up to 25 who provide significant assistance for a relative or friend. Taking on an assisting role at a young age can have a dramatic impact on a young person—as well as the person who accepts their care and others involved in their lives.  Find out more about support for young carers.

Last updated: 13 August 2019

family caregiving

Caregiving for an elderly, ill, or disabled family member is a demanding job and no one is equipped to do it alone. Finding respite care services can provide a vital break.

What is respite care?

Respite care provides temporary relief for a primary caregiver, enabling you to take a much-needed break from the demands of caregiving a sick, aging, or disabled family member. Respite care can take place in your own home, at day-care centers, or at residential or nursing facilities that offer overnight stays. Whether it’s for just a few hours a week or an extended vacation, seeking respite care can help ease the burden of family caregiving and help to relieve stress, restore your energy, and promote balance in your life. It can also prevent you from becoming exhausted, isolated, or even burned out. Respite care can benefit the person you’re caring for, too, providing them with variety, stimulation, and a welcome change of routine.

Seeking support and maintaining your own health are key to managing your role as a caregiver, so it’s not selfish to need time to yourself. If you’re overwhelmed by the daily grind of caregiving, your patience and compassion will wear thin, you’ll find it harder to connect with the person you’re caring for, and you’ll probably both feel unfulfilled. After a break to recharge your batteries, though, you’ll feel more energetic, focused, and reinvigorated about your caregiving role. You may even be able to pick up tips on new ways to tackle common problems you face as a caregiver, helping to make the caregiving journey a more enjoyable and rewarding experience for both you and the loved one in your care.

Types of respite services

Respite care can take many forms, but boils down to two basic ideas: sharing the responsibility for caregiving and getting support for yourself. Respite could take the form of enlisting friends and family to watch your loved one so you can take a break to visit others, go to the gym, or handle chores, for example. Or respite care can mean finding volunteers or paid carers to provide in-home services for your loved one, either occasionally or on a regular basis. Finally, respite care can mean using out-of-home programs such as adult day care centers, day camps, or nursing homes to provide you with a break and your loved one with the continued care that they need.

In-home respite care

In-home services can be provided by volunteer or paid help, either occasionally as needed or on a regular basis. Services may last from a few hours to overnight, and may be arranged directly or through an agency. This popular respite choice enables your loved one to remain in their own home while they continue to receive care, and can be invaluable for you as the primary caregiver.

Volunteers may be available from faith-based, community, and other non-profit organizations.

Trained staff from home-care businesses are available to cover short periods of in-home care.

Personal care providers can assist with daily living skills such as bathing, dressing, or feeding.

Homemaker services support meal preparation, shopping, and housekeeping.

[Read: Home Care Services for Seniors]

Skilled health care, which requires more specialized training and expertise, can address your loved one’s medical needs.

Out-of-home respite care

Whether you’re caring for a child, an adult, or a senior, there are a range of private and non-profit respite programs available depending on your location. These can include:

Adult day care centers, designed for older adults who can no longer manage independently, or who are isolated and lonely. Planned activities promote well-being though social and health services. Adult day care centers operate during daytime hours, Monday through Friday, in a safe, supportive, and cheerful environment. Typically, meals and afternoon snacks, including those that accommodate special diets, are included.

[Read: Adult Day Care Services]

Residential programs offer temporary care for varying lengths of time. Group homes, hospitals, nursing homes, and other specialized facilities provide emergency and planned overnight services, allowing caregivers 24-hour relief. While medical insurance in the U.S. generally does not cover overnight respite, long-term care policies and veterans’ programs may subsidize the cost of care.

Caregiver retreats and respite camps are available in some areas, combining respite with education and peer support.

Engaging family members in respite care

Family members and friends may be able to help out while you run an errand, take a break, or even go on vacation. However, just as the burden of caregiving is often more than one person can handle, it can also be a tough process for families to share. Even the healthiest families can be severely stressed by ongoing care, and the division of labor is frequently lopsided. You can encourage support and participation by employing the following strategies:

Talk openly and regularly. Keep your family up to date on your loved one’s needs and condition. Family members who don’t share the day-to-day caregiving experience may not fully appreciate the demands and stresses involved.

Encourage family members to evaluate what they can reasonably and honestly do. Changing roles and varying resource levels can impact family involvement. Welcome different viewpoints, accept limitations, and be willing to try different strategies. Share your list of needs and take advantage of all offers to help.

Recognize your own feelings and discuss disproportionate tasks. Harboring resentment when you need more help can impair your health and even lead to burnout. Ask family members directly for concrete support and specific time commitments. Consider establishing an online calendar to organize relief and confirm schedules.

Use technology to bridge distances. Try free video conferencing services to hold family meetings at times that work for everyone. Create a web-based community to share updates and explore options.

Participate in support groups. Learning how other families cope can provide you with new options and ways of coping. Building relationships with other dependable, trustworthy caregivers can also offer an opportunity to trade respite services. And when siblings are unable or unwilling to share the load, peer support can be invaluable.

Affordable private online therapy. Get instant help, on any device, wherever you are in the world. Start feeling better today!

With over 25,000 licensed counselors, BetterHelp has a therapist that fits your needs. Sign up today and get matched.

Get professional online counseling for relationship or marital issues. It’s confidential and convenient to get started.

Overcoming obstacles to respite care

While it may seem obvious to friends and family—and even yourself—that you desperately need a break from the physical and emotional demands of caregiving, actually seeking help is not always an easy step. When you’re the primary, long-term caregiver for a close family member, handing over the responsibility for their care can seem a daunting prospect.

Perhaps you feel that your daily caregiving routine is too complex to explain to another person or that taking time off will only create more problems when you return; it’s easier to just tough it out and do everything yourself. Or maybe you feel that it’s wrong of you to ever feel tired of caring for someone you love, especially if you’re a parent caring for a child. Perhaps you’re simply worried that the person taking over will not do a good enough job caring for your loved one. Or conversely, maybe deep down you’re worried that a respite carer will do a better job and you’ll somehow feel inadequate or no longer needed.

These are all common reasons for declining respite care. However, it’s important to remember that respite care is an integral part of the caregiving process, not just for you, but also the person you’re caring for and the rest of your family.

Multiple relationships are vital. No matter how close you are to your loved one or how well you’re coping as their caregiver, it’s not healthy to spend every hour of every day and night with the same person, especially in an inevitably stressful caregiving environment. Everyone needs the stimulation of multiple relationships, including you as the carer and your loved one as the care recipient.

Accept that no one else will offer the same level of love as you—and find the best alternative. Even if you know that you’re the best possible person to care for your loved one, that’s no reason not to seek respite care. If nothing else, your loved one will appreciate you even more when you return from your break. Having time apart can help refresh and rejuvenate any relationship.

There’s nothing abnormal about needing a break. Most of us work 40-hour weeks with a coffee break and lunch hour every day, and evenings and weekends off. Even people with tougher schedules don’t work around the clock, day after day, without ever having a break or some time to themselves to look forward to. Taking time off is vital to your health and well-being.

[Read: Caregiver Stress and Burnout]

Respite care can provide a fresh pair of eyes. If, like most caregivers, you accepted the role as family caregiver without any formal training, it’s unreasonable to expect that you’ll be an expert and know everything about your new role. Seeking respite care from others, especially those who have previous experience or professional training, can bring a fresh pair of eyes to your daily routine and may offer tips on different ways to handle certain caregiving tasks.

Consider a respite swap. Trading respite services with other caregivers you know and trust can be an easy way to carve out some time for yourself. This could take the form of taking it in turns to host an occasional kids’ sleepover, for example, or to care for each other’s patients while the other has a weekend off.

Planning, selection, and choice are key to your respite care experience. Understanding your needs, selecting the right type of respite care, and choosing the right provider can ease the stress of handing over the reins of your loved one’s care. Doing your homework, seeking references and referrals from providers or carefully planning for other family members to take over can help set your mind at rest.

Maintain or rekindle your hobbies and interests. It’s not uncommon for long-time family caregivers to finally seek respite care and then find a void in their lives. Having devoted so much time to caregiving, they’re suddenly lost once those caregiving responsibilities are no longer there, even for a short period. By seeking respite services early and often, you’ll be better able to maintain interests outside of your loved one’s care and preserve your own identity.

Learn how Mindfulness-Based Stress Reduction (MBSR) can help you to experience less anxiety, less stress, and less physical and emotional pain and illness with this online program from Sounds True.

Planning your relief

Planning for respite care starts with analyzing the needs of both you and your loved one. Establishing the type, skills, frequency, and location of respite services is critical to ensure you receive appropriate support and your loved one continues receiving the best care. As a caregiver, is support what you need most? Or is it some regular free time? Or maybe help with transportation? Keeping a record of your daily activities will make it easier to hand over responsibility to a family member or respite care provider while you take a break. It can also help to identify the areas and times when you most need help.

Identifying your loved one’s needs and preferences will also help you find the right match. Are social activities most important to your loved one? Do they require assistance with walking, eating, or medications? Do they need mental stimulation? Or exercise? Answering these types of questions can help you determine which respite options to pursue.

When you devote so much love and energy to caregiving, it can be difficult to entrust your family member’s care to others, especially strangers. Whether you engage a care provider directly or work through an agency, you can allay your fears by conducting some basic research.

Using independent providers

Taking time to find the right person is essential for your peace of mind and your loved one’s safety. Make sure you:

1. Conduct an in-depth interview with each candidate. Screening applicants on the phone should always be followed with an in-person interview.
2. Be specific about all of the tasks, skills, and schedules involved in your loved one’s care.
3. Discuss compensation and payment schedules. Do not pay for services in advance.
4. Request several work and personal references, and check them carefully. Verify the information provided, and ask all references about reliability, trustworthiness, punctuality, and the care provider’s ability to handle stress.
5. Consider a background check. These can be done inexpensively through online agencies and alert you to potentially serious problems.

Always include the potential care recipient in the screening process if they’re able to participate, to ensure that both parties are comfortable and that your loved one’s needs are respected.

Working with agencies

While independent providers are generally less expensive, home care agencies and referral services can be easier to use.

An agency provides appropriate carers, handles payroll, and usually provides substitutes for sick or absent personnel. If problems occur, you also have specific avenues of recourse (complaints, mediation, or arbitration) that are not available when working with individuals.

Referral services work to match your needs with local respite programs.

Choosing out-of-home respite care programs

When you have identified potential out-of-home programs, plan to visit at least three. Observe the staff and how they interact with care participants. Try to picture your loved one there and ask plenty of questions.

• How are care providers screened?
• What is the training and level of experience of the care providers?
• Will care providers need additional training to meet specific family needs?
• How, and by whom, are the care providers supervised?
• What procedures does the program have for emergencies?
• Are families limited to a certain number of hours of services?
• Does the program provide transportation and meals?
• What is the cost of services? How is payment arranged?

If you can, spend a day at the center that seems best to you, so that you can get a feel for the people and environment. Bring a site checklist such as the one below. You may wish to return a few times to see whether your experience on different days confirms your initial impressions.

Getting the most out of respite care

While finding and arranging respite care sounds like a lot of work, it’s important to remember that respite is not just a service, it’s an effect that comes from taking breaks from the stresses of caregiving.

Plan and schedule frequent breaks. Overlooking your own needs or trying to take on all of the responsibilities of caregiving without regular breaks will only lead to serious health problems such as burnout.

Use checklists to inform respite care providers about your loved one’s schedules, likes and dislikes. Offer suggestions for handling any difficult behaviors.

Make back-up plans. Always keep a list of alternate respite care providers and resources. Unplanned emergencies should not prevent you from taking care of yourself.

Evaluate respite care providers often. Observe your care recipient before and after respite sessions. Ask for brief updates and more detailed reports regularly.

Expect changes. Respite care is a process that often requires fine-tuning. Anticipating and accepting changes in personnel or programs can keep you from becoming discouraged.

Attend a support group regularly. Both structured and informal groups allow you to meet others in situations much like your own. You can talk, vent, laugh, and exchange tips with people who understand what you’re going through. If you can’t easily leave home, online communities, message boards, and forums can also provide some much-needed support.

Authors: Melissa Wayne, M.A., Monika White, Ph.D., and Lawrence Robinson

Respite: Time Out for Caregivers – Types of respite and how to overcome obstacles. (Caregiver Action Network)

National Caregiver's Library – Reference source, including checklists and links to government resources in the U.S. (National Caregivers Library)

Lotsa Helping Hands – Organize respite schedules and manage activities using an interactive calendar. (LotsaHelpingHands.com)

Find respite care in the U.S.

Eldercare Locator – Search directory of elder care services or call 1-800-677-1116. (The U.S. Department on Aging)

Respite Locator – National respite care directory. (Arch National Respite Network and Resource Center)

Respite Care – Find respite services for Alzheimer’s and dementia caregivers or call 1-800-272-3900. (Alzheimer’s Association)

Find respite care in other countries

Carer's Breaks and Respite Care – NHS services available to UK carers. (NHS)

Carer Gateway – Find respite care services in Australia. (Australian Government)

Carers New Zealand – In New Zealand, find help and advice or call 0800 777 797. (Carers NZ)

Last updated: November 1, 2022