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Why Respite is Critical to Care Partners


What is respite care? "Respite" means a short period of relief. "Respite care" refers to short-term, temporary care provided to your loved ones so you can take a break from the daily routine of caregiving.


​Caregiving is a tough job with long hours. To maintain your physical and emotional health and provide the best care for the person with Parkinson's, respite is essential and is often referred to as "a gift of time." Respite care enables you to take time off for a few hours or even multiple days.


​Who provides respite services, and what kinds of services are provided?


INFORMAL, PERSONAL ARRANGEMENTS

Prepare and train a couple of friends or family members to fill in for you. You should have more than one option in case someone is not available. Invite them over while you are available and go through your typical daily tasks at a time when you would most likely need them. That allows them to get comfortable with your expectations, but also makes for a smooth care transition for the person with Parkinson's.


FORMAL SERVICES

The two primary categories of respite include in-home services and out-of-home services. Depending on the provider, the needs of the family and available funds, the following are typical services provided in each category:


In-Home Respite: With home-based services, a trained, licensed, insured, and bonded employee of a private or state agency comes to the home. Services are generally available 24 hours a day, 365 days a year. In-home care refers to personal care with activities of daily living, such as bathing, grooming, and dressing. In-home care providers are also called companions, personal aides, or personal care partners. They work either for themselves privately or for an agency that takes responsibility for setting fees, making caregiving assignments, insuring, and bonding the care partners and training them. In-home care partners can be employed to assist with a particular task - for example, bathing assistance - or by blocks of time - four hours, eight hours, or even live-in.


For the most part, personal care is a private expense. Medicare or health insurance does not cover it. However, it may be covered by your long-term care insurance policy. Many states, through their local area Agencies on Aging, offer a capped number of hours of companion services to older adults.


Out-of-Home Respite: There are also other options for choosing care outside of the home. These include family care homes and adult day programs:


Family Care Homes: In this case, respite is provided in someone's home. Homes and the care providers should be licensed under state regulations to provide housing, meals, and personal care services to the elderly and others.


Adult Day Programs: These programs (also referred to as adult day care) are community-based, day-long social and recreational programs provided in a safe, secure group setting. Such programs may be held in churches and synagogues, community centers, park districts, healthcare institutions or other facilities. Most programs offer some health-related services such as medication reminders. Adult day programs may also include the following:


  • Transportation​

  • Meals and snacks

  • Assistance with, or supervision of, eating, walking and toileting.

  • Exercise

  • Socialization and peer support

  • Social work services

  • On-site or on-call nurse

​In addition to the benefits to participants, adult day programs afford family care partners a respite from the demands of full-time caregiving for someone who needs constant supervision. Services and fees for adult day programs vary.


​Residential facilities that also serve as a permanent residence, may also have opportunities to take a break for multiple days. Many long-term residential facilities have a specified number of rooms set aside for short-term respite.


RESPITE BENEFITS

Beyond direct relief, the benefits of respite care can also include the following:

  • Relaxation: Families can relax, gain peace of mind, and renew their humor and energy.

  • Enjoyment: Families can enjoy favorite pastimes and pursue new activities.

  • Stability: Respite can improve the family's ability to cope with daily responsibilities and maintain stability during crisis.

  • Preservation: Respite helps preserve the family unit and lessens the pressure that might lead to institutionalization, divorce, neglect, and abuse

  • Involvement: Families can become involved in community activities and be less isolated

  • Time off: Families can take a needed vacation, spend time together, or spend time alone.

  • Enrichment. Respite makes it possible for family members to establish individual identities and enrich their own growth and development.

What do you need to know when seeking respite services in your community?

Here are some questions you may want to ask yourself when considering respite services:


  • ​What kind of services do I need (long- or short-term or both), and why?

  • Do I prefer services in my home or an outside setting?

  • Does the agency provide the type of services I need?

  • What is the cost of services? How is payment arranged?

  • What is the training and level of experience of the care providers? Will they need additional training to meet the specific needs of my loved one?

  • How, and by whom, are the care providers supervised?

  • Does the program maintain current information about clients' medical and other needs? Is there a written care plan?

  • What procedures does the program have for emergencies?

  • Can family members meet and interview the people who care for the person with Parkinson's?

  • How far ahead of time do I need to call to arrange for services?

  • Are families limited to a certain number of hours of service?

  • Does the program provide transportation?

ADDITIONAL RESOURCES

Addresses needs of family members and others providing long-term care at home; offers programs at the national, state, and local levels to support and sustain caregivers.


National Family Caregivers Association (NFCA) Educates and supports more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.

Caregiving Resource Center offers helpful tools, worksheets, and tips on how to plan, prepare and succeed as a caregiver.


Provides grants to states and territories to fund range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.

SOURCES:

Parkinson's Foundation. Page 98. Respite Care. Chapter 5. Getting Outside Help. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."


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