Guide for Caregivers of People with Disabilities

July 31, 2010 [Updated November 30 2017]

In need of a caregiver? See our NHU guide: Guide to Searching for and Selecting a Home Health Aide. This guide is very comprehensive in assessing your situation, identifying your care needs, identifying the level of caregiving you need, finding resources and financial aid for caregiving.

For more information and resources, see NHU's Caregivers section.

The following is a Guide for Caregivers of People with Disabilities. As there are many people who are providing care for family members, friends and neighbors with disabilities, we have included this guide for caregivers in the hope it will be of benefit.

The purpose of this guide is to provide information for caregivers of people with disabilities who are 18 to 59 years of age, and does not necessarily offer specific information for the caregiving of children or the elderly, however, we also offer within this guide some specific information for parents who are caregivers.

New Horizons Un-limited assumes no responsibility in guaranteeing the services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate information and make your own decisions when using this guide.

Guide for Caregivers of People with Disabilities

One usually does not begin to look for something until one is at need. Becoming a caregiver may be something that just happened to you as a parent, grandparent, sister, brother, uncle, aunt or other relative or perhaps it started as a helpful neighbor or friend. It is important however, to consider and investigate how to be a good caregiver and how to take care of yourself as caregiver before you assume the role as caregiver of a person with special needs or disabilities. Being informed may assist you in avoiding stress and burnout, both common hazards of caregiving. When you take care of yourself, you insure your caregiving for the person in need.

Select the Caregiver topic of your choice from the links below:

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The Caregiver:

    A caregiver is anyone who provides assistance to someone who is in need of care. Many caregivers are unpaid family members or friends who provide care on either a full or part-time basis. Care for an individual could range from someone who needs a little care such as medication administration and dressing change, to a person who is childlike despite their age, to a total invalid and unable to provide any care for them self.

What does it take to be a Caregiver?

    Caregiving can result in time, energy, health and financial burdens for the caregiver. It is estimated that 80 percent of caregivers provide caregiving assistance seven days per week, and the care usually involves personal care assistance and household maintenance chores. Most caregivers are unpaid family members or friends. Assess your ability to have the extra burden of caregiving in each of these areas.

    • How much time can you devote to caregiving? How much time will be required?
    • Are you healthy and physically able for the physical and emotional challenges of caring for someone?
    • Do you have some financial resources to assist you with costs of housing or transportation for yourself?

    Caregiving can be emotionally strenuous and stressful. Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse. Patience is the state of endurance under difficult circumstances, which can mean persevering in the face of hindrance or annoyance without acting on annoyance/anger in a negative way. If as a caregiver you are running late the tendency is to hurry your loved one too. However, this rushed atmosphere is very difficult for care recipients, especially those who suffer from memory loss or brain impairment. Though you may try to sound calm and encouraging, it's easy for loved ones to pick up our "anxious vibes."

    • Do you have forbearance under strain?
    • Are you able to handle stressful situations with ease?
    • Are you steadfast and dependable?
    • Are you patient and kind?

How to Be a Caregiver

    Be Informed

      Take the time to learn and find out as much as you can about your family member's condition and special need requirements from a variety of reliable sources, including health care providers and other health professionals that work with families with special needs or disabilities. Respect your family member if they are over the age of majority, but also be prepared to ask questions and take an active role at the doctor's office or with any health professional when necessary.

      The Internet offers a great deal of information on conditions and special need requirements, but can also offer advice on what to expect along the journey that you and your family will now experience. Evaluate the information, analyze your unique circumstances, use your best judgement and make your own decisions when using the information. Before making any change, consult your health care professional. If you are interested in a resource, call or contact the resource to verify the current situation.

    Know the Needs of You and Your Family

      When a member of your family becomes disabled, you will need to assess needs on a daily basis from minor to major life decisions. You, your family member and the rest of your family will need to work together to make good choices about caregiving, housing, insurance, schools, health services.

      Seek ways to make life easier. Be prepared to be resourceful.

    The Difficult Cared For !

      Caring for an individual who is less manageable than your nerves are able to tolerate can be not only a challenge, but can also cause stress. Understand, you are not alone and there are ways to take on the challenge of caring for a less manner able individual. Whether the individual is an aging parent, a mentally disabled family member, or someone with a physical disability, understanding is at the core. A disabled person's intolerable behavior can be a part of how they communicate. An article
      “A Member of Your Family is Mentally Ill- What Now!” provides a better understanding of ways to coping.

      Though New Horizons Un-Limited is geared towards raising awareness for persons with disabilities and their care givers, here is a resource for another population being cared for that may possess intolerable behavior are"the aging parents". “Just Listen” is an article that speaks about how an elderly parent’s behavior could be feed through the child’s guilt.

      Remember, the key to overcoming obstacles many times is knowing you are not alone and that there are resources available to help you cope.

      Accept the change in roles when you are caring for an elderly parent. This change in roles may be difficult for your parent as well. Allow the changes to be addressed when needed. Expect that they may be angry with losing control and their anger may be directed to you. Allow them to make their own decisions, what are their personal choices and ask their advice.

      Quote by Milton Greenblatt, M.D.

      "First we are children to our parents,
      then parents to our children,
      then parents to our parents,
      then children to our children.”

      Friend

    Relationship Between Caregiver and Care Receiver

      It is difficult to draw hard lines between dependency and independence in the caregiving relationship. The relationship must be negotiated between the caregiver and those for whom they are caring.

      National Library of Medicine offers an article, "Caregiver's Role" which explores the relationship between the caregiver and the person for whom care is given with 15 items of expectations for understanding from both sides of the caregiver and cared for relationship. The website is for people with Dystonia (a movement disorder) however, the relationship between caregiver and person for whom care is given is universal.

      Are you caring for an elder or parent? Difficult family dynamics from the past may make the relationship of caregivers and those being cared for unfavorable. Aging Care.com offers an article to assist the caregivers side of a difficult relationship. See How to Handle an Elder's Controlling Behavior

    Parent Caregiver

    Come to the edge.

    We might fall.

    Come to the edge.

    It's too high!

    COME TO THE EDGE!

    And they came,

    and he pushed,

    ---and they flew.

    -- Christopher LOGUE, English poet (1926- )

      The Parent Caregiver - conflict of dependence and caregiving, transitioning from care to independence.

      How dependent is your child? How independent?
      Everyone is at different stages. How much is enough, too little, too much?
      How much do you need to do, how much you don't?
      How much to push and when to let go?
      No right or wrong answer - keep asking the question.
      You may make mistakes along the way.
      Do your best and remember each day is a new day to begin again!

      How to Find Caregiver Training

        Colleges and universities, service organizations, non-profit organizations, community centers and churches may be a source in your community for free or inexpensive caregiver training.

        See our NHU Caregiver Training resource page for a list of free or inexpensive caregiver training programs we have found available or on the Internet.

      Tips for Caregivers
        Be prepared to give and show you care. Leave your personal life at the door and be involved with the person who needs your care and their circumstances, help to try to make their life easier.

        Allow the person to do what they can comfortably and assist them with what they feel they do not do comfortably. Do not necessarily do for people what they can do themselves. (HBGC)

        Have empathy for the person for whom you are caring. Be calm and listen so you may understand what they are saying.

        Be patient. Get the required sleep you need to be able to give good care.

        Do not rush. Take the time to care. The person for whom you are caring may need more time to do tasks. The more they can do independently will be better than if you do things for them. Be prepared to set aside time for them to do what they can.

        Be an advocate. There may be times when you will have to stand up for the person for whom you are caring. You will know better than most people what they face in daily living.

        Empower the person for whom you are caring. Help them to be as independent as they can be. Do not answer for them, if they are capable of answering.

        Take care of yourself (See above), rest when you are weary, take a break, go outside and let nature heal, have an outside hobby, or take time for family and friends. (Steele-Carlin)

        Ask for help when you need it. Getting help when you need it is acquiring insurance that you will be able to maintain yourself as a caregiver. Look upon asking for help as a strength of your caregiving. Lean on your spouse, siblings, parents, grandparents, who can help the best? Sometimes a friend is able to deal with this kind of help as they may not be immediately involved but will be interested in supporting you emotionally.

        Set reasonable expectations for yourself, your family member with a disability and the rest of your family. See the NHU personal experience by a mother of adult children with disabilities.

        Use humor to lighten life's load.

        Study relaxation techniques

    More Information on Caregiving

    Caregiver Survival Guide

      Taking care of you!

        The first, and one of the most important responsibilities of being a competent caregiver is one’s own ability to take care of one's self. Studies show that caregivers have a difficult time balancing their own life and time for themselves. A person's ability to care for another is only as good as being able to care for one's own self.

        Practicing healthy habits like time management, sleep, activities of daily living and eating are all important to implement for the person for whom care is needed. These practices or your ability to implement a schedule for yourself as a caregiver would increase your chances of being a productive caregiver.

        Some recommendations for caregivers are to eat healthy and take advantage of the nutrition charts being used to prepare meals for person for whom care is provided.

        Attempt to get an adequate amount of sleep per night. An adequate amount of sleep would be at least 6 hours per evening.

        Visit this blog to find out more about taking care of oneself, Caregiver -Self Care: Only You Can Bring the Balanceby Teresa Leith of Caregivers Self-Care

        5 Caregiver Relaxation Tips from Nurses in the Knowby Renata Gelman from Aging Care.com offers more help than relaxation, more on how to take care of you!

        Go Ahead, Have a Good Cry: 5 Reasons Why Its Good for YOu by Marlo Sollitto from AgingCare.com 

      Depression

        Depression is a major risk factor for persons who are caregivers. Caregiving can be stressful and may contribute to serious illness and depression. Studies show that 16 percent of caregivers report that their health has worsened since taking on the caregiver role. There are many theoretical philosophies about persons who may suffer from depression. Depression is not a weakness and one cannot identify the disease with a person's inability to be productive or cope. Depression is the result of an imbalance within the body. This is why it is very important for persons who are caregivers to live a balanced lifestyle.

      Take a break

        Get outside and let nature heal, have an outside hobby, or take time for family and friends.

      Caregiver Guilt

        Taking on the role as a Caregiver is a huge responsibility. When the one being cared for is a relative, as their Caregiver, one may begin to feel guilt about the cared for’s condition and what you the Caregiver could have done differently to possibly prevent the current circumstances. Understand that guilt, though it may be normal will not assist you or your loved one.

        Most of us eventually confront not only the loss of our loved ones, but the guilt of the possibility that we could have done more, should have known better, would have done differently in retrospect. This increases not only our guilt, but our grief as well. We long to spare our loved ones from the ongoing progression of disease and death – but we cannot save or rescue them. Begin to deal with the issues that have brought on this emotion.

        One of the common issues related to guilt is one is living in the past and holding on to what they may have been able to, or should have done differently to prevent the current situation. Becoming the primary Caregiver for a loved one, brings you face to face with a harsh reality of life, death, and quality of life.

        Grief is also unhealthy when caring for a loved one. To better cope with these unhealthy mixed emotions is to ensure you as the Caregiver are giving the most adequate care you can offer. This will increase a person’s quality of life.

        Here are some tips that may help deal with Caregiver guilt:

          1. Recognize exactly why you feel this guilt.
          2. Look for the cause of the guilt and begin to work towards eliminating this cause.
          3. Identify other feelings such as how your loved ones illness has affected your life.
          4. Change your behavior to fit your values. If you think you are not visiting a loved one on a regular basis and should. Begin to incorporate visits into your busy schedule. If you are becoming unkind to the person being cared for, find some time for yourself. Contact a relative to relieve you or find respite care resources.
          5. Be compassionate with yourself. Good and bad days come and go. Be confident that you are doing the best that you can. There is no one way to be a Caregiver, just trust you.
          6. Take action. Begin to meet your own needs.
          7. Ask for help in order to meet these needs.

        Below are some helpful websites with resources, support, and advice to help better cope with being a caregiver and guilt.

      Help for the Caregiver

        Most of us would like to care for our family member in our own home. Caregiving for a family member with a disability requires selflessness and often lasts a lifetime. Much of the time the caregiving is continuous, 24/7. Continuous caregiving can be stressful. Health of the caregiver can be compromised by continuous stressful caregiving. To be a good caregiver, people sometimes forget to take care of themselves which can have consequences for the caregiver as well as the person for which the care is being given. In addition, people who are caregiving out of love are sometimes the least likely to ask for help. No one should feel ashamed or weak because they need to ask for help. Look upon asking for help as a strength, because you will be able to assist the person you are caring for better. Do not wait until you are exhausted, tired, unable to take care of your household or the person for whom you are caring. Ask for help when you need it. Getting help when you need it is acquiring insurance that you will be able to maintain yourself as caregiver. A good caregiver knows their limitations as well as their strengths.

        The American Medical Association provides a Caregiver Self-Assessment Questionnaire in both English and Spanish that can help you evaluate if you need to ask for help in your caregiving. "This tool will help caregivers analyze their own behavior and health risks and, with their physician's help, make decisions that will benefit both the caregiver and the patient. The Caregiver Self-assessment Questionnaire will enable physicians to identify and provide preventive services to an at-risk, but hidden population and improve communication and enhance the physician-family caregiver health partnership. By using the self-assessment score as an index of caregiver distress, the need for supportive services can be discussed, and the physician can then encourage utilization and make appropriate referrals to community resources."

      Help from Family Members

      Do you care for a family member or friend, who is frail, disabled, has a chronic illness or cognitive impairment? If you let the stress of care giving progress to burnout, it can damage both your physical and mental health. If you are caring for a family member, and are not getting the time you need to recuperate, it’s essential that you get support from other family members to get the rest you need.

      Receiving help from family members for the time needed to rejuvenate yourself may be challenging. Living a balanced life may be difficult, but is extremely important when being a caregiver. This importance needs to be expressed to family members to ensure their participation in providing respite care. As you begin to incorporate family members as respite care givers you may want to start by exchanging words about daily activities, or the schedule you keep to ensure all needs of the one being cared for are being met.

      Instructions for family members providing respite care to relieve care givers may include the need to take classes to ensure they have comprehensive training for competent care. Encourage potential respite care family members participate in training as it applies to the individual being cared for.

      Wisconsin Caregiver has many programs and training available to meet the competency of providing adequate care.

      The Family Caregiver Alliance has many different resources for caregivers and cared for persons. One of the resources provided by the organization is their Caregiver training. It is offered as a day-long program or in a series of 4 classes on consecutive weeks. Class is open to anyone, is FREE, and includes valuable information and hands-on practice on transferring skills, incontinence care and toileting, bathing, hygiene, grooming and dressing, dental care, feeding and nutrition, dealing with behavioral issues, and caregiver self-care. Time is allowed for interaction with other caregivers, and sharing of information in a confidential setting is encouraged. The good news is that you’re not alone. Help for caregivers are available.

      Respite Care

        Respite care is the break given to the family member, friend, neighbor or anyone who is providing the continuous care of someone with a disability. The health of the caregiver can be compromised by continuous stressful caregiving. "Respite care has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect." (WIKI)

        Finding a Respite Caregiver

          See our NHU Respite Care resource page for a list of links.

          National Respite Coalition has a respite care locator service on their website.

          Lifespan programs help people of any age caring for another individual to find out what they might be eligible for, help them pay for respite if they don't qualify for anything and help them find a provider. To find out more about this program, visit State Respite Coalitions below.

        Choosing Someone to Provide Respite Care

          You are basically hiring someone to do your job, so you will want to hire someone that you trust and is worthy of your trust.

          Even if you are working with an agency, you will want to interview the person, get references, do background checks. Use the following guide to help you with the hiring process.

          The following guide, Choosing the Right Caregiver: A Guide for Families, offers hiring tips for consumers and families, an interview checklist, safety tips, information on developing an emergency plan, as well as a number of helpful checklists and worksheets.

        Different types of Respite Care Providers

        • Respite Care Agency or Home Health Care Agency may provide care in the home or Day or Night Care at their facility. Agencies will require a fee for the care provided. Will you seek financial assistance or private pay? You might be able to qualify for insurance or government financial assistance for respite care. See the NHU Guide on Finding a Home Health Aid for financial options. Hospital discharge social workers that deal with the needs of patients being released may be able to recommend a local, quality care home health service. If you need to receive financial assistance from the government or your insurance company, check that the home health service you require will be covered. Be aware that hospitals will recommend affiliated services. The hospital may be part of a corporation of health services. Through this affiliation, they may be able to offer you the service you need. If they cannot or you do not like the affiliated service, you may have to choose another service

        • State Respite Coalitions:
            • The Lifespan Respite Care Act enacted in 2006 defines lifespan respite as coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs. The law requires state grantees to:
            • develop or enhance lifespan respite programs at the state and local levels;
            • provide planned and emergency respite for family caregivers of children and adults;
            • train and recruit respite workers and volunteers;
            • provide information to caregivers about available respite and support services; and
            • assist caregivers in gaining access to such services

            The following states have enacted legislation to implement Lifespan Respite Programs: Oregon, Nebraska, Wisconsin. Many other states that have enacted legislation may have limited or more expansive programs. For more information on which states are in the National Respite Network Lifespan program, click on this link.

            Each State Lifespan Respite Program has been adapted to meet their individual state needs, but there should be a coordinated approach to ensure respite services for those in need. Some of the Lifespan respite programs have established community-based networks that rely on the use of local partnerships including family caregivers, providers, state and federally funded programs, area agency on aging, non-profit organizations, health services, schools, local businesses, faith communities and volunteers. In all Lifespan states other than Oklahoma, local networks are the central point of contact for families and caregivers seeking respite and related support regardless of age, income, race, ethnicity, special need or situation. Respite stipends may be limited by income eligibility. Providing a single point of contact for families to access respite information and services is crucial to assisting families in helping themselves.

        • Private organizations: such as Easter Seals, United Cerebral Palsy and The Arc may offer short-term respite care either in the home or in the form of Day Care at their facility. (SC:HGBYN)

        Financing Respite Care

          Cost of respite care will vary with the kind of care provider. For more information on financing for caregivers,
          see the NHU Guide on Finding a Home Health Aid

          If you cannot afford respite care, there are less expensive options that may or may not be available to you.

            Evaluate other family members, neighbors and friends if any of them would be able to be a caregiver for a short period of time to give you respite. Perhaps they can help once a week or once a month. Perhaps there is an outing or particular hobby that they share with the person for whom you are caring. They may be willing to be the caregiver to assist on such an outing when they have an interest too.

            Some churches and organizations may have groups that are interested in offering respite care and have organized a respite care program with the use of volunteers. Contact area churches, community centers, volunteer services, disability organizations, schools and universities for volunteer programs. These volunteers may be very willing to assist you on a regular schedule or you may be able to acquire some limited, short-term respite care.

      Caregiver Support Group

        "One of the hardest parts of being a caregiver for a disabled family member, regardless of the family member's age, is the feeling of isolation. You are mostly alone, all day and every day, because the person you're caring for needs too much help for you to leave. This means that one of the things that make it so hard to break your isolation is time -- time to get away for a while, maybe even talk to people in the same boat as you with a disabled family member of their own. Support groups have been shown to be one of the most effective ways to recharge caregiver's "batteries." If there isn't a support group near you, or one that can meet at a time you have free, consider starting your own. If you do start a caregiver support group, be sure to write to us and tell us about your group. We can put information about your group on our website.

        See our NHU page on Caregiver Support Groups for a list of links of groups across the globe.

        For a list of Caregiver Regional Support Groups, Finding what's right, and what to do next, . Select Looking for a Support Group home page select the list of states or from the map of the United States. You click on the map where you live to find support groups and organizations in your area.

    Share Your Caregiver Story!

      Tell us your own personal caregiver story or share a caregiving tip, complain to us, or share your resources! Submit only your own original art, stories, poems, jokes. If you wish to send a picture, it must be in .jpg or .gif file format and all parties are giving us permission to publish the picture. If you have questions or ideas, information and solutions that you would like to share with us, you may contact us by e-mail at: horizons@new-horizons.org

      Thank Your Caregiver!

        Do you have a caregiver who has been an Ordinary Hero, a Fabulous Caregiver that you would like to honor with praise and thank? Send us, in your own words, an article about your caregiver and we will publish your article. See others at Caregivers Making a Difference. Submit only your own original stories, or art, poems, humor of the caregiver you wish to honor. If you wish to send a picture, it must be in .jpg or .gif file format. E-mail your story to: horizons@new-horizons.org,

      References:

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