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.
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.
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.
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.
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."
How to Be a Caregiver
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.
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.
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 personís intolerable behavior can be a part of how they communicate. An article
ďA Member of Your Family is Mentally Ill- What Now!Ē 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.”
Distoweb offers an article, select this on the left panel "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
Come to the edge.
We might fall.
Come to the edge.
Itís too high!
COME TO THE EDGE!
And they came,
and he pushed,
---and they flew.
-- Christopher LOGUE, English poet (1926- )
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!
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.
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
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 Balance by Teresa Leith of Caregivers Self-Care
5 Caregiver Relaxation Tips from Nurses in the Know by Renata Gelman from Aging Care.com offers more help than relaxation, more on how to take care of you!
Take a break
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:
Below are some helpful websites with resources, support, and advice to help better cope with being a caregiver and guilt.
Caregiver Action Network, Family Caregiver Toolbox provides a group of caregiver resources the National Family Caregivers Association.Caregiver Action Network website has a discussion forum to connect Caregivers to share their challenges, achievements, and strategies as being a 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."
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.
The Wisconsin Department of Health Resources 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.
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 donít 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
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 a Caregiver: A Guide for Individuals and Families with Special Needs, published by the South Carolina Department of Disabilities and Special Needs 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
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 agencie on aging, non-profit organiztions, 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.
Financing Respite Care
If you cannot afford respite care, there are less expensive options that may or may not be available to you.
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.
"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, we found this page from Caregiver.com. 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!
Thank Your Caregiver!
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