Caregiving tips compiled by our team of information specialists

Resources for Caregivers

Caregiving tips compiled by our team of Information Specialists.

Caring for someone else can be meaningful and rewarding, but it’s important to make sure you don’t forget about caring for yourself as well. If you always put your loved one’s needs before your own, you may start to feel burned out—and that’s not good for anyone.

Here are some tips for how to cope as a caregiver so you can meet your loved one’s needs while not neglecting your own.

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 take a toll. 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. By taking care of yourself, you will be better able, both physically and emotionally, to provide care for your loved one. You may want to consider seeing a counselor or therapist to help you cope with feelings of anger, frustration, guilt, loss, and the stress of trying to balance the demands of work and family while also being a caregiver.

Reach out to other caregivers

Connecting with other caregivers can help you feel less alone. For many, the isolation that comes with the job is eased by attending support groups—in person or online—with others in similar situations. Support groups provide emotional support and caregiving tips, as well as information on community resources. The Reeve Foundation supports active community forums and discussions about all issues related to caregiving.

Be informed

Learn as much as possible about your loved one's condition. Stay informed about medical issues related to spinal cord injuries (SCI) and how disabilities can affect a person physically, psychologically, and behaviorally. It is also essential that caregivers know about the homecare products and services that might make their jobs easier, such as adaptive equipment.

Download or request a copy of the Paralysis Resource Guide. This guide has information on a range of important topics, such as the primary causes of paralysis, the latest therapies and treatments, and how to navigate your changing world. If you have questions, do not hesitate to reach out to our information specialists who are available to direct you to local services.

Researching online is another way to stay up to date on SCI, while 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 you as the caregiver. Remember, you are an important member of your loved one's healthcare team.

Schedule downtime

Make sure to take time for yourself, whether you ask a friend to step in for you or you use a professional respite service. An extended vacation may not be realistic, but it is essential for caregivers to schedule some downtime and take a break from daily duties. This may be a short outing, quiet time at home, a movie with a friend, or anything that lets you relax and recharge.

Reach out to our information specialists for help arranging respite care or suggestions on how you can carve out some downtime.

Speak up and be an advocate

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. Issues such as financing long-term care, protecting assets, obtaining the authority for surrogate decision making, and other financial and legal matters will 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 may be necessary to make end-of-life decisions regarding your loved one.

Navigate insurance and other benefits

Familiarize yourself with health insurance options to help cover your loved one’s care.

Experts at public agencies can often help with this even if you’ve done your own research.

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. If you need to hire a personal care attendant, several good resource guides are listed below.

If youtake comfort in your faith, 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.

Empower your loved one

As you settle into the role of caregiver, you may find yourself making decisions for people who used to help you make them. It's sometimes tricky to balance competing needs for control. But it's important to respect theperson’s right to make choices. Allow your loved one as much choice as possible when it comes to things they can control, such as what they eat, what they wear, and what they watch on TV.

Empower yourself

It can be hard to 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 advice for how to feel empowered as a caregiver:

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, or 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

Caregiver Action Network educates, supports, and empowers families who care for chronically ill, aged, or disabled loved ones.

Caregiving.com is a web community for families and healthcare professionals who care for chronically ill or disabled family members.

The Elizabeth Dole Foundation is the preeminent organization devoted to empowering, supporting, and honoring our nation's military caregivers.

The Family Caregiver Alliance (FCA) operates the National Center on Caregiving to develop support programs for family caregivers in every state.

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. It covers everything from locating and hiring to training and paying personal assistants. Includes forms, checklists, and resources.

National Alliance for Caregiving is a coalition of national groups that supports family caregivers and the professionals who help them.

National Caregivers Library is large source of free information for caregivers.

The National Library of Medicine is a branch of the National Institutes of Health. It has a section on caregiver health that outlines common challenges of being a caregiver and how to address them.

National Respite Coalition Network helps parents, caregivers, and professionals get a break using respite services in their local area.

Nursing Home Compare, sponsored by Medicare, offers information about the past performance of most nursing homes in the U.S.

Parent to Parent USA is a national organization devoted to parents who are caring for children with disabilities and special needs.

The Rosalynn Carter Institute for Caregivers establishes local, state, and national partnerships committed to promoting caregiver health, skills, and resilience.

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, by offering support services such as handy helpers and respite care.

Well Spouse is a national organization that gives support to spouses and partners of the chronically ill and/or disabled. The organization addresses issues common to family caregivers such as anger, guilt, fear, isolation, grief, and financial stresses.


For more information on caregiving, please see the Reeve Foundation’s fact sheet on caregiving at: www.ChristopherReeve.org/factsheets.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.