Respite Care Guide

1. Who It’s For
2. Importance of Respite Care
3. Types of Care
4. Agencies and Organizations

Caring for a sick adult or a child with a disability full-time is, without a doubt, a tough job. One can be immensely overwhelmed with all the demands, whether emotional or physical, that full-time caregiving poses. That is why regular caregivers, particularly spouses, parents, or adult children, usually wont hesitate to get temporary relief from their everyday duties.

How do they get this relief? Normally, they will procure the services of a professional care provider who offers respite care, which is temporary care given to those who are sick, injured or disabled. Oftentimes, respite care comes as an unpaid assistance provided by family members, friends, neighbors and other volunteers. Basically, respite care provides a needed break to caregivers.

Caregivers, therefore, can attend to their own personal commitments. Moreover, they can take time to relax, ease their stress and restore their energy. Thats why respite is also referred to as “a gift of time.” Respite care ensures, though, that utmost attention will still be provided to those who have special needs.

Respite care can be for a couple of hours, overnight, a few days, or for several weeks. Parents, for example, can take the night off and leave their child who has special needs to a respite care provider. Respite care can be offered in a residential home, adult day center, as well as, in a nursing facility.

Respite care can cover different services, such as skilled nursing, adult day care, and institutional care, although, the latter is usually for short-term only. The services that will be provided depend on specific needs, available funds, and the preferences of the respite care provider.


Who Needs Respite Care?

Respite care programs can provide services to anyone, regardless of age. These include the elderly, adults, and children.

• Elderly– Seniors who have chronic illnesses, dementia, and other physical, as well as, mental disabilities are usually provided with respite care. Elderly respite service providers can make sure that frail seniors eat proper meals, take the necessary medication drugs or participate in therapy sessions. They can also accompany seniors as they perform their daily activities or even participate in social events. Seniors nowadays, it seems, are being taken care of at home more than ever.

• Adults– Respite care programs offer assistance to those individuals who have disabilities or physical injuries that hinder them from taking care of themselves. For adults who have disabilities, the most suitable living situation would be a group home or any environment that can provide maximum support.

• Children– Usually, children who have special needs attend after-school care or day care. These opportunities provide children means to interact with other kids, as well as, adults outside of their own families.

Respite care programs offer services to individuals who have the following conditions or needs:

    • Palliative care for the terminally ill

• Acute care for recovery from surgery or illness

• Outpatient services, such as counseling, physiotherapy and occupational therapy

• Chronic care for functional disabilities or physical illnesses

• Specialized medical care for medical services, such as, antibiotic intravenous therapy and chemotherapy

• Care for those who are at risk of neglect and abuse, especially children who are mentally retarded or HIV- positive

• Care for individuals who are dependent on technology for survival, such as, those individuals who need dialysis, respiratory therapy and oxygen therapy

Every individual has his or her own specific needs. That is why respite care should suit these specific needs. These should be identified and be matched appropriately to the available respite care services. Sometimes, the information can even be used to develop services that are not in existence yet.


Importance of Respite Care

Respite care offers families and caregivers a needed break from the stresses brought by their duties. Caregiving can be a stressful experience. That is why respite care is always a relief, albeit, temporary. Aside from offering direct relief to caregivers, here are some of the benefits of respite care services:

    • Respite care can help reduce the risk of neglect. Families and caregivers may become so burned out they may neglect the needs of their loved one who is ill.

• Respite care offers peace of mind. Regular caregivers can relax knowing their loved one is being cared for by a professional.

• Respite care can improve the caregivers capacity to handle daily responsibilities. Oftentimes, the primary caregiver just needs time to catch up on other things.

• Families can achieve stability, especially during crisis. Having respite care can help achieve family unity.

• It allows families to become less isolated from their own communities or localities because they can still participate in different social activities.

• Caregivers can pursue their favorite activities or try new pastimes. Providing caregiving 24/7 may leave no time for ones own hobbies and interests.

• Caregivers need to establish their own identities. Caregiving, especially when full-time, can deprive an individual of pursuing their own personal and professional goals.

Health and Respite CareIf you have been working as a regular caregiver, ask yourself these questions: When was the last time you took a break? Have you awarded yourself with a vacation in the past year? Have you been neglecting the needs of other family members or have they been complaining about your lack of time for them?

Caregivers should recognize they also have their own saturation points. They can get stressed out tremendously, possibly affecting the quality of their caregiving services. With all the physical and emotional challenges they have to face every day, they may easily experience burnout.

This can then lead to frustration; they may give up on their caregiving duties, straining the relationship with the person they are taking care of. This can be especially emotionally damaging to children or the elderly.

Below are some scenarios that may apply to you. If any of the scenarios sounds like you, perhaps its time to consider your options for respite care. You shouldnt have to always deprive yourself of “me” time. You should try to take a break from your caregiving responsibilities and enjoy some stress-free hours.

    1. My caregiving duties affect my personal projects. I have not been doing the activities that I used to love for a long time now. I have not pursued any of the opportunities that can help improve my professional standing either. It is hard to schedule impromptu appointments or attend activities because I always worry about the health condition as well as personal needs of my loved one, who is left at home.

2. My relationship with my spouse, children, or siblings is getting strained. For a long time, I have not spent quality time with them. They have been complaining that I have been neglecting them. Scheduling a dinner date or a weekend getaway can become problematic, too. Every single day, I have to make sure that the person I am taking care of receives the utmost attention. That is why I do not leave his or her side.

3. Seeking immediate help during the onset of a family emergency is one of my concerns. I do not know who to trust. Some of my family members or willing volunteers are not really familiar regarding personal, medical or therapeutic care. They can lend a helping hand, but their duties are limited. I need someone whom I can trust in administering medications, providing therapy, and delivering services, which can range from meal preparation to skilled nursing.

4. I feel that I can better nurture my loved one who has special needs if I take a break once in a while. I feel stressed out that I sometimes space-out or flare up when providing assistance. This should not be the case every time I have to provide care for my loved one. When providing medical care, there should be no room for error. Also, my loved one would sense my anxiousness. Those who are sick are sensitive, so I should not strain their emotions.


Types of Respite Care Services

In-home Respite Care

In-home respite, as the name suggests, is provided in the home. Trained individuals come over to the house and provide respite services while you are not there. This type of service may be used regularly or just from time-to-time. It may also be long-term or short-term, sometimes just overnight and sometimes longer depending on your need. Below are the most common in-home respite services:

• Home-Care Services: There are agencies that offer daily respite care, but not all of them do. Some cannot care for the patient 24 hours a day. This kind of service is often expensive. Home-care services provide the person or child with company while the caregiver is away, and also give personal care such as bathing and administering medicines. Sometimes, it also includes laundry and cooking services.

• Sitter-companion: This service is usually given by trained persons who know how to care for children with special needs. Most of the time, this kind of service is accessed through nonprofit organizations like Camp Fire, Junior League, Jaycees, or The Arc.

• Parent-trainer: In this kind of service, you have the chance to choose the caregiver from your own family or from among your friends. Whoever is selected will be sent and trained through a respite program. Before the family member or friend begins to serve as caregiver, you should discuss whether or not there will be compensation involved.

Out-of-home Respite Care

Out-of-home respite simply refers to respite services done outside the home. There are many kinds of out-of-home respite services available. One important note about many of these facilities is that not all of them are equipped to care for persons with Alzheimers. Therefore, if the person you are caring for has this condition, you need to check with the facility before making arrangements.

      • Nursing Homes:

Nursing homes

    offer regular respite care, usually on a long-term basis. However, each nursing home has its own specific rules and policies, so it is better to check them out first before procuring their services to make sure they can cater to your needs.

• Assisted-Living Facilities or ALFs: Like the nursing homes, ALFs implement varying policies for accepting people. However, these facilities provide respite care less regularly than the nursing homes. Some ALFs only allow an extended stay of up to two weeks. Others offer respite care services just for the weekend. There are also ALFs that only open their respite care services when they have extra space available. Before going to any ALF, you should call them and find out their policies and procedures.

• Adult Day Care Facilities or ADCs: These facilities are ideal for the working caregiver. They are also suitable for caregivers who need to travel on short trips.

• Respite Family Day Care: This kind of service involves respite programs that involve coordinating with day care centers. Children with disabilities or special problems are cared for in these day care centers, which are commonly found in community centers and churches.

• Hospital-Based Respite: This kind of respite service makes use of hospital facilities. This setup is especially useful when dealing with special children with very specific needs.

• Corporate Foster Home: These are homes managed by corporations or nonprofit organizations whose primary purpose is foster care. However, many of them also offer respite care.

• Residential Respite Facilities: Some residential apartments or residential homes, particularly those that were originally intended for mentally challenged persons, provide short-term respite facilities by reserving some beds for this purpose.

• Parent Cooperative Model: Sometimes families of disabled children begin to build relationships with each other. As these relationships grow, the parents often make arrangements for exchanging or alternating respite services between them.

• Respitality Model: This respite care model involves hotels that offer respite care for the disabled person or child while his or her family members are given accommodations and dinner.

• Camp: This respite service is primarily for disabled children or adults. Going to a camp is always a good idea. It refreshes the spirit and brings enjoyment to the entire family. Camps are available for daytime and overnight stay.

• Hospice Care: This service, which can also be provided in-home, is designed to comfort those who are dying. There are thousands of organizations that provide hospice care. Some are charitable organizations, while others are for-profit corporations.


Respite Care Agencies and Organizations

Composite artwork using old photographs to illustrate the work of the Red Cross in wartimeIf you need more information regarding respite care, there are a number of agencies and organizations available to help. Some of them also provide respite care services.

Organizations in the United Kingdom

You can choose from a long list of organizations that provide respite care in the UK. Below is a list of some that provide assistance or useful information:

• Shared Care Network: This organization focuses on promoting and improving short breaks, especially for children and young people. They support the family-based approach for respite care. Shared Care Network helps to connect children with agencies or people in their community who offer short-term respite care. For disabled children, experiencing short breaks can give a lot of benefit by allowing them to meet new people and expand their social circle, thus breaking down the feeling of isolation. Parents of disabled children, on the other hand, get to focus their attention on their other children or do things they arent normally able to.

• KIDS: This organization also focuses on disabled children and young people. They help improve the lives of these children and their families by providing information, family support, education, training, counsel, and of course, play and leisure. The organization seeks to help children and young people reach their goals and fulfill their ambitions. They also promote a community that will support and accept them, as well as, their families.

• Break: This organization provides respite care and support for families of disabled persons or children. They have six childrens homes in Norfolk, one of which offers special care for kids with extreme disabilities. Break cares for children, mostly from 10 to 17 years old, on a long-term basis. The organization also has a day support service called Daybreak, which provides care for adults with learning disabilities. There are seven Daybreak centers in Norfolk. Break also has a family assessment unit called Magpie. Here, families who are facing an impending failure can stay and be refreshed for as long as 3 months. While they are there, the families undergo an assessment in terms of the parents parenting skills. In addition, Break has care services for women who need mental health care through three programs: Ashcroft Residential Unit, Pathways Day Services, and Ashcroft Supported Housing.

• Mencap: This organization focuses on helping people with learning disabilities and providing support for their families. They specialize in enabling people, including children and young adults, to develop their skills and build their confidence. The organization also advocates improved lives for disabled persons and their families by lobbying policy changes in government.

• The Woodlands Multiple Sclerosis Resources and Respite Care Centre: This resource center is owned and operated by the Multiple Sclerosis Society. It offers short-term respite care for people with multiple sclerosis. The Woodlands approach is centered on developing each persons individuality. It promotes the persons privacy, rights, and the power of choice. The Woodlands is one of just three respite care centers of this kind in all of the UK.

Organizations in the United States

In the US, there are also many organizations or groups you can contact for help regarding respite care. Here is a list of some of them:

      •

The Arc

    : This organization deals with people who have developmental disabilities and seeks to improve services and support for them. It is a community-based organization with more than 150,000 members and 850 local and state chapters, and is the largest organization of its kind in the world. The Arc pushes for the hope that all people affected by developmental and intellectual disabilities will have the necessary information and skills to become active community members. The organization also advocates for these people to be able to live normal lives.

• Chapel Hill Training-Outreach Project, Inc (CHTOP): This organization focuses on developing programs and strategies that will improve the lives of children, young people, and families as a whole. The project is especially concerned with families who are living in poverty, families who are taking care of the elderly, children who are affected by disabilities or illnesses, and children who are possibly experiencing neglect and abuse.

• ARCH National Respite Network: This network, developed by CHTOP, helps bring resources for respite care to the people. The ARCH National Respite Network has come up with the National Respite Locator Service, which helps people find respite services in their community or in their state that are suitable to their needs. The National Respite Coalition is also a part of ARCH. It promotes respite at the state and national levels by focusing on policies and programs.

• US Department of Health and Human Services (HHS): HHS is the major arm of the US government that is concerned with protecting the health of Americans and giving important human services, especially to those who can least afford them. HHS runs over 300 programs that encompass the following needs: research on health, prevention of diseases (which includes immunization), food and drug safety, Medicare and Medicaid, information technology for health, prevention of child abuse, pre-school education, and emergency medical preparedness, among others.

• US Administration on Aging (AoA): This is the US governments advocacy arm for the concerns of older people. AoA increases the awareness of other Federal agencies, the public, and organizations about these concerns. It is the AoAs role to inform the people about the needs of the elderly and how the elderly are still able to significantly contribute to society. AoA closely coordinates with the Aging Services Network in developing a system of long-term, home-based, and community-based care for the elderly. This agency has developed the Eldercare Locator Service where you can look for elderly respite care centers in your locality or state. You can check out the Eldercare Locator Service at this website: http://www.eldercare.gov/Eldercare/Public/Home.asp.

• The National Adult Day Services Association is an organization of adult day services agencies, retired workers, corporations, and individuals who are seeking to help improve the adult day programs in the US. They have a large database of adult care centers all over the country.

• Family Caregiver Alliance (FCA): This nonprofit organization was founded in 1977 with the purpose of addressing the concerns of families and other people who give long-term care to disabled or sick people in their homes. At present, the FCA is able to tackle issues at the local, state, and national levels for the benefit of caregivers. The FCA maintains two other organizations the National Center on Caregiving and Californias Statewide Resources Consultancy. These two groups enable the FCA to provide analysis of legislation, conduct research, and produce useful reports on caregiving. The information gathered is also used to publish newsletters on public policy, present trends, and the needs of caregivers.

• National Family Caregivers Association (NFCA): The NFCA is an organization that primarily educates, speaks for, and gives support to over 50 million caregivers of disabled, sick, or elderly people in the US. The NFCA developed a volunteers network called Caregiver Community Action Network (CCAN). Members of this network are, or were, themselves caregivers but are now helping others to know more about caregiving. This network serves as a platform for family caregivers to form relationships and support groups.

• Home Health & Hospice Care (HHHC): HHHC is a nonprofit Visiting Nurses Association that offers home services to people with chronic illnesses, infants, children, the elderly, and the dying. The organization has a Home Care Program which includes visitation of nurses, therapists, and nursing assistants; a Hospice program wherein nurses, people who provide spiritual care, and social workers come to the house to support the family of the dying; a Community Hospice House where people who dont have a caregiver at home can stay; a Homemaking Program specially designed to support and help elderly and disabled persons to be independent; Flu Clinics, which are places people who are in danger of catching influenza can go; and Grief Support Groups to help people of any age to cope with the loss of a loved one.

In addition to the organizations listed above, there are various online support groups that can be of tremendous benefit to a caregiver. These groups usually offer forums or chat services that allow people to communicate with others in similar situations.

They can be good sources of respite care information, as well. If youre interested in a support group, just perform a search on the internet and find the group to meet your needs.


See Also:

How to Choose a Respite Care Provider
Child Respite Care Guidelines
Tips for Caregivers of Parkinson’s Patients

Images by Wellcome Images, Creative Commons License.