Resources for caregivers
Caregiving tips compiled by our team of information specialists
Here are a few caregiving tips compiled by our team of information specialists.
Take care of yourself
Rule number one for all caregivers is to take care of yourself. Providing care while holding down a job, running a household, or parenting can burn anyone out. A person who is exhausted or sick is more likely to make bad decisions or take out frustrations inappropriately.
Stress is known to contribute to a variety of health problems. The more you keep your own well-being in balance, the more you will enhance your coping skills and stamina. By taking care of yourself, you will be better able, both physically and emotionally, to provide care for your loved one.
Reach out to other caregivers
Connect to the caregiving community. Share and learn and benefit from the collective wisdom of the caregiver community. It is important that caregivers connect with one another to gain strength and to know that they are not alone.
For many, the isolation that comes with the job is eased by attending support group meetings with others in similar situations. Support groups provide emotional support and caregiving tips, as well as information on community resources.
Online support groups can be very helpful. The Reeve Foundation supports active community forums and discussions about all issues related to caregiving.
Therapy or counseling may also facilitate better problem solving. Counseling can help one cope with feelings of anger, frustration, guilt, loss or competing personal, work and family demands.
Know as much as possible about your loved one's condition. Be informed about medical issues and how the disease or disability can affect a person physically, psychologically, behaviorally, etc. You are an important member of your loved one's healthcare team.
Download or request a copy of the Paralysis Resource Guide. The Paralysis Resource Guide will take you through a range of important topics, such as the primary causes of paralysis, and help you navigate your changing world. If you have questions, do not be hesitate to reach out to our information specialists who are available to provide information and direct you to local services.
Researching on the web is another powerful tool for learning about the medical basis of disability.
Doctors and other health professionals can help you understand how a loved one's condition might change and how that change might affect the demands on the caregiver.
Schedule down time
Take advantage of opportunities for respite care. Refresh yourself and take an occasional break from daily duties. An extended vacation may not be realistic, but it is essential for caregivers to schedule some down time. This may be a short outing, quiet time at home, a movie with a friend, etc.
To get away, the caregiver may require respite care/assistance from others. Reach out to our information specialists for some possible connections to help you get a break.
Speak up and be an advocate
Be an advocate. Keep in mind you may be the only one equipped to speak out on your loved one's behalf or to ask difficult questions.
Prepare your loved one's health history and take it with you to appointments. Anticipate the future as best as you can. Financial and legal planning are important considerations. Issues such as financing long-term care, protecting assets, obtaining the authority for surrogate decision making, and other matters often need attention.
Make an appointment with an attorney knowledgeable in estate planning, probate, and, if possible, public benefits planning. Other areas often requiring planning include coordination between community services and involved friends and family members.
Decisions about placement in a nursing home or other care options can often be facilitated by a professional familiar with brain impairments, caregiving and community resources. In some cases, it is necessary to make end-of-life decisions regarding your loved one.
Understand as best as you can how the system works for insurance, Social Security and others means of public assistance. There are experts at public agencies who can help and prep yourself by researching topics in advance.
Ask for help
Many caregivers are so accustomed to providing help and seeing to another person's needs that they don't know how to ask for aid themselves. Your family is your first resource. Spouses, brothers and sisters, children, and other relatives can do a lot to ease your caregiving burden. Let them know what they can and should do.
Look to your place of worship for aid and counsel. Make your religious leader aware of your situation. Encourage your loved one's friends and neighbors to provide what comfort they can. If you need to hire an attendant, several good resource guides are listed below.
Know everything you can about tools and adaptive equipment. It is essential that caregivers know about the homecare products and services that might make their jobs easier.
Empower your loved one
As you settle into the role of caregiver, you may find yourself making decisions for people who used to decide for you. It's sometimes a trick to balance competing needs for control. But it's important to respect the right of the person being cared for to make choices.
Choice is good; by deciding things we have a sense of control over our lives. Allow your loved one as much choice as possible, from the food on the menu to their daily wardrobe to TV programming.
Gain confidence in your abilities and pride in your achievements. Easier said than done – how do you stand up for yourself, take care of yourself, and find a balance between your own needs and those of your loved ones?
The Caregiver Action Network offers the following principles of empowerment caregivers are urged to live:
Choose to take charge of your life. Don't let your loved one's illness or disability always take center stage. We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, “I choose to take on this caregiving role.” It goes a long way toward eliminating the feeling of being a victim.
Honor, value and love yourself. You're doing a very hard job and you deserve some quality time, just for yourself. Self-care isn't a luxury. It's a necessity. Step back and recognize just how extraordinary you are. Remember, your own good health is the very best present you can give your loved one.
Seek, accept and, at times, demand help. Don't be ashamed to ask for help. When people offer assistance, accept it and suggest specific things that they can do. Caregiving, especially at its most intense levels, is definitely more than a one-person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and limitations.
Stand up and be counted. Stand up for your rights as a caregiver and a citizen. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.
Resources and support for caregivers
- Paralysis Community, a resource of the Christopher & Dana Reeve Foundation, is a safe and secure online social networking site with a robust discussion area on many areas of paralysis, including caregiving.
- Caregiver Action Network educates, supports and empowers families who care for chronically ill, aged or disabled loved ones
- National Alliance for Caregiving is a coalition of national groups that supports family caregivers and the professionals who help them.
- The Rosalynn Carter Institute for Caregiving establishes local, state and national partnerships committed to promoting caregiver health, skills and resilience.
- Well Spouse is a national organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Addresses issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.
- Caregiving.com is a web community for families and healthcare professionals who care for chronically ill or disabled family members.
- The Family Caregiver Alliance (FCA) operates the National Center on Caregiving to develop support programs for family caregivers in every state.
- AARP offers a caregiving resource center, including legal issues, long distance caregiving, end-of-life issues. Toll-free 1-877-333-5885.
- Today's Caregiver magazine offers topic-specific newsletters, online discussion lists, chat rooms and an online store.
- National Respite Coalition Network helps parents, caregivers and professionals get a break using respite services in their local area.
- National Caregivers Library is large source of free information for caregivers.
- Shepherd's Centers of America (SCA) is an interfaith organization that coordinates nearly 100 independent Shepherd's Centers across the United States to help older adults remain independent.
- Hiring and Management of Personal Care Assistants for Individuals with SCI is a downloadable booklet from the SCI Project at Santa Clara Valley Medical Center. Covers everything from locating and hiring to training and paying personal assistants. Includes forms, checklists and resources.
- CareCure Forum for caregivers. Active and helpful message board for loved ones and caregivers of people living with paralysis.
- Spinal Cord Injury Caregivers is a forum on Yahoo! to share information and to support other caregivers who are caring for people with SCI.
- Nursing Home Compare, sponsored by Medicare, offers information about the past performance of most nursing homes in the U.S.