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Information and resources for caregivers.

1. How to prepare myself for my new caregiving role?

1.1. Home Care Safety and Easy Access

Home Care Safety and Easy Access

If you're new to caregiving, you might not have had time to think about home safety or what you can do to make it easier for the loved one you're caring for to get around at home. Many standard features that most of us take for granted in the home can be major barriers or even dangers to the elderly and individuals with disabilities. Doorknobs can be difficult to use for anyone with limited hand strength or impaired motor skills; throw rugs can be a hazard to anyone who has difficulty lifting their feet when they walk; and an overcrowded kitchen can prevent someone in a wheel chair from preparing their own meals. Fortunately, safety and easy access go hand in hand, and some minor, often inexpensive changes to a home can go a long way toward improving both.

To get started thinking about home safety and changes you might want to make, visit the Easter Seals Web site for an excellent guide to home safety and easy access housing. The site includes information on low-cost ways to make your home more accessible for individuals with mobility problems and also provides an easy-to-use home safety checklist.

AARP offers many tips that frail individuals, individuals with disabilities, or caregivers can use to help make decisions about home modifications to improve safety and independence.

A wealth of information on home safety and modifications is available from homemods.org. This Web site includes a section entitled "Home Modification for Caregivers," which has variety of fact sheets, resource lists, and other useful publications.

Accessible Design is run by Paralyzed Veterans of America. Also PVA staff will field technical questions on accessible design. Call 1-800-424-8200

Fair Housing Accessibility FIRST - Covers issues for consumers as well as professionals. Click on Resources.

©2004 National Family Caregivers Association and the National Alliance for Caregiving

2. Caregiver Basics

2.1. Guide to Hiring a Caregiver

Family Caregiver Alliance Guide to Hiring a Family Caregiver

Most family caregivers reach a point when they realize they need help at home. Tell-tale signs include recognizing that your loved one requires constant supervision and/or assistance with everyday activities, such as bathing and dressing. Caregivers also find that certain housekeeping routines and regular errands are accomplished with great difficulty or are left undone. It may become apparent that in order to take care of any business outside the home, more than one caregiver is required.

Assessing Your Home Care Needs

A number of options are available for finding help at home. It is often best to start by assessing both your needs as a caregiver and the needs of the person you are caring for. There are a variety of online checklists to help you evaluate what types of help are needed. Search "assessing home care needs" on Google and in general, consider the following areas:

  • Personal Care: bathing, eating, dressing, toileting
  • Household Care: cooking, cleaning, laundry, shopping
  • Health Care: medication management, physician's appointments, physical therapy
  • Emotional Care: companionship, meaningful activities, conversation

It is also important to evaluate the values and preferences of the person receiving care. He or she may be more comfortable with a home care worker who shares his or her cultural background and/or language. The care recipient may also have a preference between male and female caregivers, particularly if the worker will be helping with personal care.

This assessment may also enable you to include alternative (and possibly less expensive) approaches to care such as adult day care, friendly visiting services, home grocery delivery, pharmacy delivery services, and meals-on-wheels programs. (For more information on these and other services, see the FCA Fact Caregiving at Home: A Guide to Community Resources.)

Writing a Job Description

Once you have identified the types of help you need, writing a job description can be fairly straightforward. In addition to including the tasks you have identified from your assessment, be sure to include the following when and if appropriate:

  • Health care training (what level and what type — CNA, LVN, RN)
  • Driving (car needed or only valid driver's license)
  • Ability to lift care recipient and/or operate special equipment
  • Experience with people with memory impairments and/or other disabilities
  • Language skills
  • Any other special skills needed

At this point, you have the option of hiring an individual or going through a home care or home health care agency. In some states, publicly-funded programs may allow you to hire another family member to assist you in providing care at home. In making that decision, consider the following:




  • Screening, hiring/firing, pay and taxes are handled by the agency. Note: There are also some agencies that will handle the paperwork (taxes, social security, etc.) if you hire a home care worker on your own.
  • If the worker is sick, a substitute can be sent.
  • Can provide individuals with a variety of skills to meet varying needs (e.g., skilled nursing care, physical therapy, occupational therapy, etc.).
  • May be partially covered by Medicaid or private insurance.


  • Often several workers are used which can be confusing or distressing for the person receiving care.
  • Less individual choice in workers.
  • More expensive than privately hiring an individual.




  • A strong one-on-one relationship can develop between the worker and the person receiving care, although this can also happen through an agency when there is a commitment to continuity.
  • Usually less expensive than going through an agency.
  • You get to choose the person you think will be the best to provide care to your loved one.


  • If the home care worker is sick, no substitute is readily available.
  • Screening, hiring/firing, pay and taxes must be handled by you.
  • May not be covered by Medicaid or private insurance.


Developing a Job Contract

The job contract is based upon the job description. It formalizes the agreement between you, the employer, and the employee, and is signed by both of you. Should questions or problems come up later, either party can refer to the written agreement. A good work contract should include the following:

  • Name of employer and "household employee"
  • Wages (including tax withholding—see section on Employer's Responsibilities) and benefits (e.g., mileage, meals, vacation, holidays)
  • When and how payment will be made
  • Hours of work
  • Employee's Social Security number
  • Duties to be performed (i.e., the job description)
  • Unacceptable behavior (e.g., smoking, abusive language, tardiness, etc.)
  • Termination (how much notice, reasons for termination without notice, etc.)
  • Dated signatures of employee and employer


Finding the Right Home Care Worker

Set aside some time as you approach this critical next step: finding the appropriate person to fit the job description. One of the best ways to find a helper is to get a personal recommendation from a trusted relative or friend. Churches, synagogues, senior centers, Independent Living Centers, and local college career centers, especially those which have nursing or social work programs, are good places to advertise for in-home help.


Locating Resources in Your Community

One place to begin your search is with your local Area Agency on Aging (AAA). To find the AAA nearest to you, call the Eldercare Locator at (800) 677-1116 or visit the AAA website at www.n4a.org(link is external).

Your AAA can provide the following:

  • Information about attendant registries
  • Lists of Home Care Agencies
  • Tax help for seniors
  • Suggestions for places to advertise in your community

Most communities have attendant registries that can be an excellent resource for finding in-home help because they typically provide some initial screening of applicants. When calling an attendant registry, it is important to inquire about their particular screening process and/or training requirements as well as about any fees charged. While some are free, fees for using a registry can vary greatly. It is a good idea to shop around and obtain the best service at an affordable rate. There are also nonprofit community agencies that maintain lists of individuals available to perform all kinds of household tasks, from cleaning and laundry to repairs and gardening.

If all of the above sources fail to produce an in-home worker, you may choose to advertise in the "Help Wanted" classified section of a community college, local paper, or neighborhood newsletter. The advertisement, at the minimum, should include hours, a brief description of duties, telephone number, and best time to call, e.g.: "Home Care Assistant needed to provide supervision and companionship to older adult with memory loss. Must be compassionate, reliable, and able to assist with bathing, dressing, and eating. References required. Call to apply."


Interviewing the Applicant

You do not have to hold a face-to-face interview with every person who applies for the job. Some screening over the telephone is appropriate. In screening applicants over the telephone, caregivers should describe the job in detail and state specific expectations listed in the work contract as well as information about the hours and wages. At this time, it is also important to ask about the applicant's past experience and whether he/she has references. If the applicant sounds acceptable, then an interview should be scheduled. Consider having another family member, the care recipient (if appropriate), or friend sit in on the interview to provide a second opinion.

In preparation for the interview, the caregiver should have a list of questions pertinent to the job description and a sample work contract ready for the applicant to read. The following are some suggested questions for the interview:

  • Where have you worked before?
  • What were your duties?
  • How do you feel about caring for a disabled person? Or a person with memory problems?
  • Have you had experience cooking for other people?
  • How do you handle people who are angry, stubborn, fearful?
  • Do you have a car? Would you be able to transfer someone from a wheelchair into a car or into a bed?
  • What days and hours would you be available? How many hours per week?
  • Is there anything in the job description that you are uncomfortable doing?
  • Can you give me two work-related and one personal reference?

Consider what qualities/skills you require and what you can train a good candidate to do.

Be sure that you have a chance to watch the interactions between the in-home worker and the family member for whom he or she will be providing care. You may want to do this at the end of the interview with individuals you feel are good candidates, or you may want to invite the top two candidates back to meet with your family member. If your family member is able, he or she should be included in the interview process and in making the final decision.

Immediately after the interview, it is important for you to write down first impressions, and if possible, discuss these with another family member or friend. Consider the person most qualified for the job and with whom you feel most comfortable. Always check the references of at least two final applicants. Don't wait too long to make an offer, as good applicants may find another job. If the job offer is accepted, you and the in-home helper should set a date to sign the contract and begin work. Both employer and employee should keep a copy of the contract.


What Are the Employer's Responsibilities?

As an employer of a "household employee," there are several legal considerations. First, household employers should verify that their household insurance (renter's or homeowner's) covers household employees in case of an accident. It is also imperative that the employer be fully informed of the legal responsibility of paying taxes for household employees.

As the employer, you may also be responsible for withholding Social Security taxes, Medicare taxes and/or federal unemployment tax and filing them with the Internal Revenue Service annually or quarterly. Social Security taxes are owed by both the employer and the employee. Rules governing the amount(s) to be withheld and payment schedules can change annually. For information on paying federal taxes for household employees, call (800) TAX-FORM and ask for Publication 926.

There are also state regulations. Some states require that employers pay state tax and/or state disability insurance. To find out the regulations in your state, call the state employment department. The penalties for not paying taxes on household employees include paying the back taxes and paying interest and penalty fines.

There is one other requirement that every employer should know. Each employee is required to fill out an Employment Eligibility Verification form I-9 and a record of this should be kept on file. This form verifies that the person is legally entitled to work in the United States. The form can be downloaded from the web at www.irs.gov/Forms-&-Pubs(link is external) or ordered by calling (800) TAX-FORM.

FCA advises that household employers and employees stay informed and comply with state and federal tax laws. There are often local services available to seniors who need assistance in filing tax statements for household employees.


Making Your Home Care Situation Work

The relationships between the family, the person who requires assistance, and the in-home worker are very important. Consequently, it is imperative that you take the time to go carefully through the selection process. Good communication is essential for a good relationship. Schedule regular times to meet and discuss concerns, problems, and/or changes. It is also important to make expectations clear and to provide adequate training to meet those expectations. If you hire a home care worker on your own, it is important you feel comfortable both providing training and firing the worker if necessary. If the person you have hired is doing a great job, be sure to tell him or her. A smile and well-deserved praise can make a big difference. None of us likes to feel to feel that our work is not appreciated.



Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org(link sends e-mail)
Family Care Navigator: www.caregiver.org/family-care-navigator

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's, and other debilitating health conditions that strike adults.


Recommended Reading

The Caregiver Helpbook, Powerful Tools for Caregiving by Vicki L. Schmall, Ph.D., Marilyn Cleland, R.N., Marilynn Sturdevant, R.N., M.S.W., L.C.S.W., Powerful Tools for Caregivers



National Association for Home Care and Hospice (NAHC)
228 7th Street, SE
Washington, DC 20003
(202) 547-7424

Visiting Nurses Association of America
2121 Crystal Drive, Suite 750
Arlington, VA 22202
571-527-1520 | 888-866-8773

Prepared by Family Caregiver Alliance and funded by the Archstone Foundation. © 2001 Family Caregiver Alliance. All Rights Reserved.



2.2. Family Caregiver Alliance Fact Sheets on Caregiving

Visit the Family Caregiver Alliance, National Center on Caregiving website for informational resources and these caregiving "Fact and Tip Sheets".  

2.3. United Way Caregivers Coalition Educational Video Series

United Way Caregivers Coalition has launched a video series of educational presentations that caregivers can watch wherever and whenever they want. Called, "The Informed Caregiver, An Education Series for Caregivers of Aging Loved Ones," the series consists of four videos a year, each available for free online.

2.4. Pathways for Caregivers

United Way Caregivers Coalition offers a regional edition of their comprehensive caregiving guide – "Pathways for Caregivers."  This  resource is designed to provide support and assistance throughout the caregiving journey. 

Caregiving is a universal reality that touches almost every family.  An astonishing 68 million Americans are unpaid family caregivers to a parent, spouse, child, sibling, or friend. In northern New Jersey, more than 260,000 of residents have taken on this caregiving role.

Caregivers credit "Pathways for Caregivers" as a lifeline, full of invaluable information and practical advice.  The guide includes content on caring for loved ones who are aging, have disabilities, mental health issues, or are veterans.

While written to assist caregivers in northern New Jersey region, much of the content is applicable to caregivers throughout all of New Jersey and beyond. 

Get Your Free Copy Today!

Guides are free for all caregivers, their families, and those who work with caregivers. 

To obtain a printed version of this guide, call 888.33UWCARES (888.338.9227).

To download a digital copy, visit: Pathways for Caregivers.

3. Stages of Caregiving

3.1. What are the stages of Caregiving?

Stages of Caregiving

Adapted from Denise Brown's The Caregiving Years provided by caregiving.com.

One way to think about caregiving is to see it as a set of stages. These stages were written with caregivers of the elderly in mind and may not apply completely to your situation. Also, the time spent in each stage will be different for everyone. Your care recipient's chronic condition or disability will determine how quickly or slowly you pass through the stages. No matter what kind of caregiving situation you're in, we think you'll find some useful ways to think about caregiving by reading these stages.

We've also provided some links to resources through this section. Nearly all of the resources are free and provide useful information and tools to help you in your role as a caregiver.

Click on the stages below to read more about the experience of caregiving and to find some useful resources.

~ Stage 1: The Expectant Caregiver  ~  Video: Ask, Stage 1

~ Stage 2: The Freshman Caregiver  ~  Video: Find, Stage 2

~ Stage 3: The Entrenched Caregiver  ~  Video: Receive, Stage 3

~ Stage 4: The Pragmatic Caregiver  ~  Video: Welcome, Stage 4

~ Stage 5: The Transitioning Caregiver  ~  Video: Allow, Stage 5

~ Stage 6: The Godspeed Caregiver  ~  Video: Treasure, Stage 6

4. Caregiving and SCI

4.1. Managing Personal Care Assistants - New Mobility Magazine

Managing Personal Care Assistants — New Mobility Article 2017

A number of people living with spinal cord injury discuss how they locate and manage their personal care assistants (PCAs) in this New Mobility article. 

4.2. Information about caring for someone with an SCI

Caring for Caregivers - SCI InfoSheet #17

Published by Office of Research Services, University of Alabama, Birmingham 

Between 40 and 45 percent of individuals with spinal cord injuries (SCI) need personal assistance with some daily activities . The majority have tetraplegia and often need assistance with getting in or out of bed, managing bowel and bladder issues, bathing, and dressing. The lower the level of injury, the less assistance is needed.
PCA vs Caregiver
Most often, a parent, spouse or other close family member is the first to provide personal care following injury. Although this initial care and attention is normal, it is not generally recommended for the long-term. If at all possible, it is best to have a paid Personal Care Attendant (PCA) provide the majority of long-term care while a loved one provides occasional care.

Unfortunately, many individuals with SCI have no option other than to rely on a family member for daily assistance. Whereas a PCA is an employee, a caregiver is the term used for an unpaid family member who is primarily responsible for the care of a loved one.

There is no "typical" family following SCI. Each situation is unique, and each caregiver and the person they care for will eventually create a system of care that works best for them.

Adjustment to SCI
As a caregiver, you will likely face many unique challenges. First, there is often the initial worry and concern for the condition and recovery of your loved one. There is often stress over juggling work and finances while getting your home accessible for your loved one.

At the same time, you are learning about the many issues of SCI and how to be a caregiver. You may need to learn about bowel, bladder, and respiratory care. You need to learn how to do daily skin checks and recognize signs of a pressure sore. Likewise, you may need to learn the symptoms of Autonomic Dysreflexia or ventilator care and what to do in case of an emergency. There are a number of educational materials available from reliable Internet sources, and it is to your advantage to familiarize yourself with such resources.

Long-Term caregiving for a loved one can put a strain on any relationship. There are often many lifestyle adjustments that need to be made in providing long-term care. The basis for a healthy relationship centers on open communication, learning the facts about life after injury, a willingness to adjust one's views in many areas, and paying attention to the health of both the individual with SCI as well as the caregiver.

Managing Self-Health
While it is important to learn how to take care of your loved one, it is even more important for you to learn how to take care of yourself. Maintaining self-health is essential for your wellness and your ability to adequately care for your loved one. After all, you cannot expect to effectively care for your loved one when you are in distress.

Recognizing Stress

Stress is a physical, chemical, or emotional factor that causes tension in your body or mind. Most everyone has some type of stress in their life. Stress is common because it is almost impossible to escape.

Stress can quickly become a problem for people who have learned to ignore signs and symptoms of stress until it gets out of control. Continued stress puts people at higher risk for serious health problems including illness, addiction, and depression.

There are several signs and symptoms of stress that you can learn to recognize when stress might be getting out of control. When you are under a lot of stress, you may experience one or more of the following:

Mood (Emotional) Symptoms of Stress

Thought Symptoms of Stress
Low self-esteem
Fear of failure
Inability to concentrate
Embarrassing easily
Worrying about the future
Preoccupation with thoughts/tasks

Behavioral Symptoms of Stress
Stuttering and other speech difficulties
Crying for no apparent reason
Acting impulsively
Startling easily
Laughing in a high pitch and nervous tone of voice
Grinding your teeth
Increasing smoking
Increasing use of drugs and/or alcohol
Being accident prone
Losing your appetite or overeating

Bodily Symptoms of Stress
Perspiration /sweaty hands
Increased heart beat
Nervous ticks
Dryness of throat and mouth
Tiring easily
Sleeping problems
Diarrhea / indigestion / vomiting
Butterflies in stomach
Premenstrual tension
Pain in the neck and or lower back
Weight loss or gain

Source: http://ub-counseling.buffalo.edu/stressmanagement.shtml


Adopting a Healthy Lifestyle

A healthy lifestyle includes a balance of things you can do to feel better emotionally and physically. Healthy behaviors reduce stress and increase our ability to cope with problem issues. A few simple acts can be a great foundation for self-health. For example:

¨ Get enough sleep. ¨ Eat regular, healthy meals and snacks. ¨ Participate in regular physical activities because your body can fight stress better when it is fit. ¨ Take quiet time for yourself to listen to soothing music, soak in a warm bath or shower, read an interesting book or magazine or go to the park or some other place quiet. ¨ Cut down or cut out use of caffeine and tobacco. ¨ Do not rely on food, alcohol or drugs to reduce stress. ¨ Balance your life with work and play. ¨ Spend quality time with friends and family. ¨ Enjoy hobbies or crafts. ¨ Hug somebody! ¨ Be assertive instead of aggressive. "Assert" your feelings, opinions, or beliefs instead of becoming angry, defensive, or passive. ¨ Do not volunteer for something if you do not have the time or energy to do. ¨ Keep things organized. ¨ Seek out social support to share ideas, resources and coping skills.

Getting Help

Getting help is essential to finding time for yourself. Help can come in various forms such as other family members helping with household chores. It may be an understanding boss that allows you to work from home or adjust your work schedule to be able to maintain your job while still providing care.

Asking for help is a sign of strength - not weakness. It may not be easy at times to ask for and receive assistance. This difficulty usually stems from two notions of thought.

First, some people may not ask for help because they do not want to "burden" others, especially family members. If you feel this way, ask yourself if it would be a burden on you to help a loved one in need. We are part of a family; we are part of a society; and we all need each other. We all need help at times, and we rely on each other in many ways, and most people gladly help family and friends if needed.

A person's impression of "independence" is the second problem notion of thought. Some people may not seek assistance or refuse it if offered because they believe that being independent means doing things without the help from others. The reality is that there is no shame in asking for and receiving help when you need it. And you will probably make your everyday life more of a burden on you if you do not get assistance when you need it.

Caregiving is not a one-person job. You need time away for a healthy lifestyle, and there are going to be times when you are sick or need to get to get away for other reasons. The best thing that you can do is have a list of people that you can call when you need someone. You might also have one or two people on your list who can be a backup care provider on short notice in case of sickness or crisis.

Learning to Solve Problems

Although avoiding problems might ease stress in the short-run, most problems do not simply fade away. In fact, you can usually expect stress to continue until you resolve your problem issue

Research suggests that having effective problem solving skills is also essential for the health of both the caregiver and care recipient. You can use problem solving skills in almost all aspects of your life. As you set out to resolve problems, it is important to set your priorities. What needs to be done first? What can be left until later? Work on what needs to be done first. There are 5 basic steps for effective problem solving.

STEP 1 - Identify the problem: you must know the problem in order to solve it. You might make a list of your problems and rank them in order of importance. You need to make sure that you break large problems into smaller parts, and select the most troublesome problem to resolve first. Remember to work on one issue at a time and get all of the facts before moving onto step 2.

STEP 2 - Brainstorm for possible solutions: thinking about the problem you most need to resolve, make a list of as many possible solutions to your problem as you can. Be free thinking, and do not judge your ideas at this time. If you have problems thinking of possible solutions, ask your family and/or friends for their thoughts on how they might solve the problem. If you need more information, you might search on the Internet or at your local library.

STEP 3 - Select the best solution: from your list of possible solutions, choose the solution that you think will best solve your problem. Again, you can ask for opinions on which solution might work best. Once you make your choice, put your list in a safe place to keep for a later date if needed.

STEP 4 - Try your solution: the only way to know if the solution works is to try it out. Take notes on your progress and any problems that you experience.

STEP 5 - Evaluate your tried solution: if your solution works, give yourself a big pat on the back for a job well done. If you are not satisfied with the results of your solution, review your notes. It may be that there were unforeseen obstacles that need to be corrected. Make adjustments if needed. Try another possible solution from your list, or you can do more brainstorming for other ideas and edit your solution list based on new information.

Learning to Relax

Relaxation techniques are additional self-care skills you can learn. You first need to prepare yourself before you can relax. You can dim the lights and quiet all distractions by turning off the television, radio and phones. You can sit back in a comfortable chair.

Self-Guided Imagery:

  • Close your eyes. Focus on your breathing and take slow, deep breaths.
  • Imagine that you are in a peaceful setting such as relaxing on a beach, meadow, or mountain top.
  • Focus on the peaceful setting that you are imagining and pay close attention to all the details. Notice the sounds (any birds, wind rustling the leaves, waves crashing on the shore?). Pay attention to what you feel (warm sun on your skin, hot sand on your feet, cool grass beneath you). Attend to any smells and tastes you may imagine having. Spend some time focusing on all the sensations you are experiencing while imagining your peaceful place.
  • After a few minutes return your attention on your breathing. Notice how you are breathing deeply in and out and focus on what is going on around you (the pressure of the seat against your legs, the ticking of a clock, etc.).
  • Ask yourself how relaxed you are at the moment using a scale from 0 - 10 with zero indicating not relaxed at all and 10 reflecting the most relaxed you have ever been.

Abdominal Breathing:

  • Slow your breathing down by taking slow, deep breaths.
  • You know you are breathing abdominally by placing your hand on your abdomen and seeing that your hand moves up and down. This is the type of slow, deep breathing that we do while we are sleeping. Slowing the rate of your breathing can slow your heart rate and give you a peaceful sense of relaxation.
  • This takes practice, so keep trying if you are unable to do it the first few times.

Progressive Muscle Relaxation:

  • Beginning with your toes, slowly work your way up through the muscles in your body by tensing and then relaxing your muscles. After your toes, slowly tense and relax your feet, then your calves, thighs, abdomen, arms, hands, fingers, neck, and finally, your face.
  • Take as long as you need to tense and then relax all the muscles in your body.
Partner or Spouse Caregiving
For couples, it is very important to keep the partner/spouse role separate from the caregiver role. One way to do this is to have a routine that keeps the caregiving activities separate from those of a partner. Another way is to have a specific area or room devoted to intimacy - where no caregiving tasks are performed. Keeping the two roles as distinct and separate as possible will help you to avoid confusing and blurring the roles in your mind. When you and your partner are feeling romantic, you will be better able to see yourself as a romantic partner and not as a caregiver.

Couples need to also work to maintain equality within their relationship. Both partners need to make significant and meaningful contributions with every day issues such as parenting, various household chores or money management. This equality will help caregivers not to become resentful of being "overwhelmed" with daily responsibilities or duties.

Problem Issues

Most couples face obstacles early after injury. For most adults, pre-injury life is routine, familiar, and comfortable. People usually have established views of what they consider "normal," and they generally have defined notions of their relationship.

In most cases, pre- and post-injury routines are very different for caregivers and their spouses or partners. Like many other aspects of life post-injury, changes in views and established routines are usually necessary in adapting to life after injury.

Again, each family is different, so every family will not necessarily experience the same problem issues. As a caregiver, however, you will likely experience many of the same issues as others. Research has shown that caregivers generally report problem issues with:

  1. the negative attitude of the person with SCI;
  2. personal feelings of guilt;
  3. lack of appreciation for being a caregiver;
  4. not enough time for personal activities;
  5. having to say "no" to the person with SCI; and
  6. feeling overwhelmed.

Individuals with SCI expressed problem issues with:

  1. wanting to walk;
  2. sexual function;
  3. pain;
  4. bowel and bladder function;
  5. lack of money;
  6. not being able to do simple tasks; and
  7. being anxious.

Although the two groups are affected by the same injury, those reported problem issues tend to be self-oriented. Therefore, the key to a healthy relationship centers on open communication, learning the facts about life after injury, and a willingness to adjust one's views in many areas.

It is essential to talk about problem issues and openly discuss how these issues are affecting your relationship. In time, hopefully, the two of you can reach a mutual understanding of how, together, you can overcome the situation, resolve problem issues if possible and strengthen the relationship.

Resolving Conflict

You cannot avoid conflict because it is a necessary and healthy element in all relationships. People are simply different. Disagreements are going to occur because everyone has a unique point of view that often results in differing opinions.

If a problem is important to one member of the family, it is important to all. But conflicts with loved ones can be especially stressful for everyone involved. This is why it helps to learn how to resolve conflict to reduce or relieve stress.

STEP 1 - Ground Rules: when two people disagree about an issue, the first emotional reaction is often anger. It is nearly impossible for people to resolve issues when they are angry. Therefore, it is important for everyone to let emotions calm before making an effort to resolve conflicts. The purpose of conflict resolution is not to have one winner. It is to reach a solution in which all sides agree. When you think of resolving issues this way, people are likely to respond with a willingness to succeed. If the conflict is a question of fact, it is everyone's responsibility to know the facts.

Basic Conflict Resolution Guidelines:

  • Keep things in perspective.
  • Focus on resolving one issue at a time.
  • Be clear and direct when discussing issues.
  • One person talks at a time.
  • Allow each person to respond.
  • Don't use physical contact, intimidation, or threats to get your way.
  • Don't use the "Silent Treatment" and expect others to know what you think or feel.
  • Don't dig up old issues that are not important to the issue at hand.
  • Don't use emotional blackmail by saying "if you really love me, you would..."
  • Don't over exaggerate or use words like "always" and "never."

STEP 2 - State the Problem: you cannot resolve issues unless everyone knows exactly what the issue is. You are more likely to have success in resolving the problem if you are respectful when stating the issue. For example, state the problem in the form of a self-expression, not a personal attack.

Examples of Request:

  • "I feel like my work is not appreciated."
  • "I feel overwhelmed because I am getting no time for myself."
  • "I feel guilty when I take time for myself."

Example of Attacking Statement:

  • "You make me mad when you do not give me a break."

If the problem is about behavior, make it a positive request about behavior, not a demand.

Examples of Request:

  • "I would like you to take a more active role in helping with the children."
  • "I prefer that we do (something) this way."

Examples of Demand Statement:

  • "You have to start acting like a father."
  • "You are going to do (something) my way."

STEP 3 - Listen and Understand: listening is the hardest yet most important part of conflict resolution. Listening requires a open mind to hear what is said. When two people are in an emotional argument, who is really listening? Sometimes people talk over each other hoping the loudest voice wins. Many people who are not talking are thinking about what they are going to say instead of listening. Resolving issues requires a willingness to listen to what is said.

It is tough being a good listener. If you find it difficult, you might try to "repeat" in your head what is being said as another person talks. That way, you stay focused on hearing what is said. There may be times when you hear what is said but do not really understand the other persons meaning. When someone talks to you, it is natural to imply your own reasoning to what is being said. However, people often mean to express themselves differently than you might think. If you are not clear about another person's meaning, you can easily repeat what they said and ask for more information. If you are open minded, listen and understand; it is easier to suggest possible solutions that both parties can agree.

STEP 4 - Problem Solve for Resolutions: Following the 5 problem solving steps (above), conflict resolution is often similar to solving other problems. You want to work together because your goal is to resolve the issue in a manner that is acceptable to all those involved. Work together to pick one or more solutions from your list that everyone agrees offers a realistic chance for success. If you try a solution that does not work for everyone, work together to modify your solution or choose other possible solutions from your list.

STEP 5 - Resolution: the issue is finally resolved when the solution works for everyone.

However, there may be issues that cannot be resolved. If the conflict is a matter of opinion, recognize that it is impossible to control the thoughts of anyone else. You may not change another person's mind even with your best efforts and intentions. Likewise, you cannot change other people's behaviors. When there is no mutual resolution, you have to resolve the issue for yourself. You might agree to disagree on matters of opinion, or "let go" of a matter that you simply have no control over. These concepts may be hard to do at times, but they can be the best thing that you can do for your overall health.

As a caregiver, you can expect to experience ups and downs. You may feel overwhelmed or stressed at times with all of the added responsibilities you have. You might feel under appreciated for all your hard work and devotion.

Caregiving takes hard work and devotion, and providing care for a loved one is an expression of affection and commitment. After all, you are choosing to be primarily responsible for the care of someone you love. Therefore, it is important to take care of your health to best be able to give your loved one the care he or she needs.

However, it is equally important that you make a commitment to take care of yourself because it is best for you, too. You need care and attention as much as anyone else. Although it takes hard work and devotion, you can find balance in your life if you make that commitment. Do not forget that!

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The University of Alabama at Birmingham provides equal opportunity in education and employment.

This publication is supported by grant #H133N060021 from the National Institute of Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, U.S. Department of Education, Washington, DC. Opinions expressed in this document are not necessarily those of the granting agency.

Accepting New Help
A brochure from Craig Hospital
Caregiver's Guide to Self-Health: Solving Problems and Reducing Stress
University of Alabama at Birmingham has designed this interactive program to offer caregivers 3 techniques to help improve their health and quality of life.

1 - Card Sort
2 - Problem Solving
3 - Stress Relief

A brochure from Craig Hospital
Healthy Living: Relationships
An article from the Pushin' On, Vol 19[1], 2001.
University of Alabama at Birmingham
Long-term Care Givers
A brochure from Craig Hospital

Personal Care Attendant
SCI InfoSheet #6
University of Alabama at Birmingham





4.3. SCI Forum: Personal Caregivers: Tips, Tricks, Tales

University of Washington Medical Center SCI Forum

Personal Caregivers: Tips, Tricks and Tales from Individuals with Spinal Cord Injury

Presented on April 8, 2008 at the University of Washington Medical Center.

At this forum, three individuals with longstanding quadriplegia described their experiences and shared tips for finding, hiring and managing personal caregivers. These presentations were followed by a brief talk by a UW rehabilitation psychologist about maintaining personal boundaries when working with a personal caregiver. Read the report of these presentations (below) or watch the video from this page.

Please note: In order to continue offering videos of our SCI Forums, we need to show our funding sources that consumers are watching and benefiting from them. After watching the video, please complete our two-minute survey. Thank you!

This video contains captioning. To turn captions off, press "Ctrl+Shift+C" while in the Windows Media player, or follow the instructions on your Windows Media player.



Kirk sustained a C5-6 spinal cord injury in a construction accident in 1983 and has been using personal caregivers ever since. "I can say unequivocally that attendants are a most critical part of my life," he said. "They really help me to be more independent in many ways. Although I am dependent on them, I'm able to have a fuller life because of them."

After more than seven months in the University of Washington Medical Center, Kirk was discharged home with 24-hour nursing care paid for by Labor and Industries insurance coverage. He eventually decided he would prefer to hire his own care. He learned about setting himself up as a business and paying the required taxes through his local Employment Security Department (ESD) office, where he applied for and received a business license and employer tax identification number. (See "Washington State and Federal Employer Resources" for more information.) He carries blanket liability coverage for injuries through his homeowners policy.

"I have tried lots of different avenues (for finding caregivers)" Kirk said. "The most successful and consistent has been the local newspaper." When he first started placing ads, Kirk included lots of details, assuming that the more information he provided up front, the better chance he would have of getting appropriate applicants. He quickly learned that most people didn't pay attention to all those details, so he simplified it down to two lines about days, times, location and phone number (and saved money on the ad, too).  

Kirk has had as many as 100 people respond to an ad. He conducts a thorough phone screening interview before inviting possible candidates to his home for a second interview. "I want them to see my place, the environment they're going to work in," he said.  "And I want to see how they show up, how they carry themselves, do they leave the chair out in the middle of the way beside the table so I can't get by while we walk around the house. If I said 'I'm looking for a non-smoker' on the phone and they show up and they reek of smoke, that's not a good solution for me."

Kirk has learned that prior caregiver experience is not necessary and may even be a disadvantage. "You may be un-training what they learned in a previous position," he said. "That's particularly true if someone comes from years and years in a nursing home environment," where they may have been used to being in control and making all the decisions for patients, rather than listening to their preferences. "I'd rather not have that, personally."

Beyond the business-end of hiring caregivers is the thorny territory of interpersonal relationships. "Because you're working with someone so closely, the boundaries can get a little fuzzy," Kirk said. It's easy to get into uncomfortable situations, such as when a caregiver asks for a favor that starts small and grows to the point of discomfort. For instance, people have asked Kirk if they could occasionally bring their child to work. And this is fine with him, until "occasionally" becomes most days, then every day. And when a child damages something in his home, things can get very awkward. "These are tough areas for me" he admitted.

"Some of the things that carry you through as much as any are humor and respect and pretty much setting the rules to begin with in a polite but firm tone, and then sticking with them," Kirk advised. "Every time I've gotten into a jam it's because I let those rules slip or those boundaries expand."

 (See Kirk's Resources page for guides to hiring and managing caregivers and information about background checks and financial support.)



In 1987, at the age of eight, Todd was accidentally shot by his young cousin. He sustained a complete C4 spinal cord injury. After 11 months at Children's Regional Hospital and Medical Center, Todd was discharged home, and his mother, sister and grandfather became his full time caregivers.

Todd was a diligent student and completed college at age 18. He was hired as a software developer right after graduation and now, 11 years later, runs the company. "What does that looks like? It's crazy," he said. "I have three household employees, four independent contractors, a private physician, a financial planner, a bookkeeper, three banking institutions who run my life and enough financial software to run a business."

Transitioning from family to hired caregivers was a difficult process but ultimately appropriate and rewarding. He wanted to separate his family relationships from his caregiving relationships and felt this was necessary in order to develop his own identity and grow into adulthood. He started small and transitioned in phases.

Todd's approach to care starts with the basic truth that "To exist, I need help. To live, I need care," and is guided by the principles of open communication, mutual respect, clear expectations and a safe work environment. He encourages personal growth among his caregivers and sees his care system as a team effort with a common goal.

Todd has no movement below his shoulders, so his care is by necessity a well-oiled machine, consisting of highly detailed routines, checklists, written agreements and communication systems that he has carefully crafted and compiled into a comprehensive care manual. This streamlined system works for him because "the process is consistent. All parties sign off on the structure. Rules remain tight and focused—there are no gray areas. The process doesn't make compromises. The structure doesn't feel guilty. It doesn't get upset. It's on paper. People read it and know it."

Todd holds regular staff meetings to bring the team up-to-date and give everyone a voice. He posts a four month calendar showing responsibilities and personnel for each shift, as well as a "body board," which is a picture of his body, front and back, showing any areas of concern.  Employees get regular performance reviews, which Todd sees as an opportunity for mutual learning. Todd pays $13 per hour to start and goes as high as $25, depending on the job responsibilities and performance. He recommends investing in a keyless entry, a simpler and safer alternative to distributing keys and possibly having to change the locks if something goes wrong.

When it comes to finding potential caregivers, "word of mouth works best for me," Todd said. "I tell everybody about my needs." He posts flyers at nursing schools and church bulletin boards. Anyone who calls and seems promising gets a full vetting, from checking references to searching Google, MySpace, arrest records and more. His first meeting with candidates takes place away from home. He will often pay a potential employee to watch routines before hiring because "It's better to know red flags ahead of time rather than several pay periods later," he said.

Firing employees is hard and uncomfortable and needs to be done carefully and thoughtfully. He views exit interviews as a two-way street: "I learn from each one, for sure." Through unpleasant past experience, he has developed some simple advice: "Don't fire somebody from your bed; maybe wait until you're in your wheelchair or when somebody is with you. If the person is intoxicated, consider firing the person outside. Immediately call the key people in your life. Immediately change the door code."

(See a sample of Todd's "Caregiver Qualifications and Agreement.")



Sigrid has lived with quadriplegia for 17 years and has had very positive experiences with hired personal caregivers. "Once I hire someone I tend to keep them for a long time," she said. Indeed, she currently has four caregivers that have been with her from 8 to 14 years, and she considers all of them to be good friends. "You keep them by respecting them, communicating, being flexible. It's really important that you like your caregivers and work well together."

Sigrid finds her caregivers through newspaper ads. She prefers to hire female caregivers only. She screens candidates over the phone, and if they don't communicate effectively or she can't understand them, she doesn't pursue them further. "Communication is important in your personal care," she said. She interviews people at a neutral location like Starbucks. If they pass the first interview, they are invited to her home for a second interview.

She doesn't check references because she has learned that employers usually won't give a bad one. Instead, "I go with my gut," she said. "I want people who have a sense of caring, that it's not just a job. I'm not good at firing people, so I have to be really careful hiring people. Knowing yourself is key to hiring good people."  

Sigrid is easy going and flexible with her caregivers and has few rules, "except when it comes to my clothing," she admitted, chuckling. "I'm extremely particular about how my clothes are hung, washed and put on me!" Another rule is "I'm the only nude person in my house." She doesn't want to see or hear about her caregivers' bodies, tattoos or anatomical peculiarities.

Flexibility is a two-way street. "I'm always late, so it's hard for me to get mad at my caregivers (if they are late)," Sigrid said. "The shift is 7:00 pm to 10:30 pm, but sometimes I don't get home until quarter to eight, which means the caregiver will get off late, too." She hires for three-hour shifts, but if a long-term employee is really good and can get her job done in two hours, she'll still get paid for three hours.

Even though her caregivers tend to become friends, she keeps the roles clear and the personal boundaries from getting blurred. "Caregivers are my life and are here to take care of me. Of course you want to help them out and be supportive and understanding, but when I start taking care of them, that's a problem."

Sigrid does not use the 'business model" of hiring caregivers like Kirk and Todd. On her attorney's advice, she pays her caregivers as independent contractors. Wages range from $13 per hour to start to $16 for her longer-term employees. Her advice to others for hiring caregivers: "Use your best judgment. And remember, you're hiring a friend."

[Return to top of page.]

Personal Boundaries and Caregivers
Jeanne Hoffman, PhD, UW Rehabilitation Psychologist

Personal boundaries refer to those invisible borders that separate your psychological and emotional space from someone else's, explained Jeanne Hoffman, PhD, rehabilitation psychologist at UW Medical Center. They are defined by the expectations we all have about appropriate behavior and roles in a relationship. "So you might share close personal details with your best friend but not someone you just met," she said. "Boundaries vary depending on the person and the situation."

Caregiver relationships are very complicated, starting with the fact that "you now have to have somebody help you where you never had to before," Hoffman said. "And often this involves intimate care in which someone is seeing you naked, someone is doing your bowel program. That's a very different level of help than asking somebody to get something off the shelf in a grocery store, and it leads to feeling vulnerable."

Often it is family or loved ones who become caregivers for individuals with spinal cord injury, and this can cause problems because there are so many different roles people play in each other's lives. A family caregiver may decide to "take over" and make all the decisions because they think it will make it easier for the person or they feel they know what's best. On the other hand, the person needing care may expect their spouse or loved one to be available every minute of every day.

Potential problems with hired caregivers include such things as the hired person asking for favors, first on a small scale or infrequently, but then becoming more common or more intrusive. Or the problem can go the other way, such as asking a caregiver to do something that is not in the job description or is outside the agreed-upon expectations. There are many examples of pushing personal boundaries and they can go both ways.

One way to avoid these problems is to maintain as much independence as possible, Hoffman said. "This means taking responsibility for directing your care and making choices about your care. It puts you back in the driver seat."

Why is this such a hard thing? People frequently worry about being a burden, so they may not ask for what they really want. They want to keep the caregivers "happy" so they are more likely to stick around. Or they may find that it's simply easier to let someone else make the decisions. But giving up on all your own preferences can easily slip into losing a sense of self. Taking control over what you can control eases the burden of decision making and leads to more satisfying situations because you get things done your way.

"Another part of being independent is being assertive in your interactions," Hoffman continued. "A lot of people have difficulty with this because they often confuse communication that's assertive with being aggressive or feel that if you tell people what you want, you're being demanding and difficult." However, there is an important distinction. An aggressive approach is inflexible, "my way or no way, and whatever you want doesn't matter," Hoffman explained. A passive approach says the other person's needs and wants are more important than mine. Passive-aggressive people, on the other hand, manipulate others into thinking they got their way when they didn't. The assertive approach says "let's negotiate. I want X and you want Y, so let's talk," Hoffman said. "Being assertive doesn't mean you always get what you want, but it guarantees that you get to express your wants and needs. People often forget that if they just tell people what they want, they might actually get it."

"How do you exert independence and assertiveness with your mother or your wife or husband? You talk about what you both need," Hoffman said. "And you recognize the fact that there is a dual relationship going on, that you're not going to want your spouse to help you with a bowel program and then have sex, or that you're not going to want your parents help you get ready for a date and then ask you about your Foley (catheter) on the way out the door. You have to communicate about how the relationship is changing and how to come to a solution that works for both of you."

With paid caregivers, Hoffman thinks it's best to approach hiring caregivers as a business. "It ensures that you set up boundaries at the start. Think of it as your own home-based business. What would you expect from a good employee? What would you expect if you were an employee?" Decide up front how you're going to handle pay and time off as well as special requests like pay advances, tardiness or bringing children to work.

Hoffman strongly recommends planning ahead for what you will do if someone suddenly walks out, threatens to leave or needs to be fired. Have an emergency plan, such as a family member or an agency that can provide help until you hire someone new.

How often do personal boundaries get blurred? "Again and again," Hoffman said. "But you always have an opportunity to start over, to have a discussion, to put those boundaries back in place and be more clear about them." Problems with personal boundaries are common for many people in the general population, not just those needing caregivers, and professional counseling can be very helpful with sorting out boundary struggles.  

Online chat/forum on the topic of personal caregivers for individuals with SCI.



4.4. Personal Care Manual: The Key to Independence

Personal Care Manual: The Key to Independence is produced by highly respected Shepherd Center in Atlanta, GA and is intended for injured persons, family members and personal caregivers alike. It is currently only available on ITunes but they are developing it for Android devices as well. We've found it to be greatly helpful SCI-care information but tough to get working on your PC. Works great on Apple products......

Personal Care Manual: The Key to Independence

by Shepherd Center

View More By This Author

This book is available for download on your iPhone, iPad, or iPod touch with iBooks and on your computer with iTunes. Books must be read on an iOS device.


Copyright Shepherd Center 2012. The Personal Care Manual is required reading for inpatients in the spinal cord injury program at Shepherd Center. Also helpful to family members and caregivers.
The manual contains a detailed overview of spinal cord injury and how to manage your bowel and bladder program, skin, respiratory system and medications. Also covered are topics such as emotional adjustment, alcohol and drug issues, assistive technology and special concerns.
Each chapter features a listing of new terms you'll hear, as well as a questions pertaining to what you have learned.

View In iTunes

  • Free
  • Available on iPhone, iPad, or iPod touch.
  • Category: Medical
  • Published:Feb 04, 2013
  • Publisher: Shepherd Center
  • Seller: Shepherd Center
  • Print Length: 181 Pages
  • Language: English
  • Requirements: This book requires iBooks 1.3.1 or later and iOS 4.3.3 or later. Books can only be viewed using iBooks on an iPad, iPhone (3G or later), or iPod touch (2nd generation or later).

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More by Shepherd Center

 Spinal Cord Injury: A Guide for Caregivers

 Brain Injury: A Guide for Caregivers


5. How to Manage?

5.1. How to take care of YOU!

National Family Caregivers Association and the National Alliance for Caregiving

Four Messages to Live By

What does it mean to be a happy person when you are a family caregiver?

How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements?

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?

These are heady questions, and ones that have been discussed often at the National Family Caregivers Association. We have looked for answers in our own experiences, in books, from professionals, and from other family caregivers. We've thought long and hard about these issues because they are at the core of our search for meaning and our need to have principles to live by as family caregivers.

We call our approach to caregiving, Four Messages to Live By. They are the fundamental tenets of our philosophy. They have helped thousands of caregivers to date and we hope you will use them as guideposts in your own personal search for a sense of direction and inner peace. The four messages are:

  1. Believe in Yourself
  2. Protect Your Health
  3. Reach Out for Help
  4. Stand Up for Your Rights

Believe in Yourself — and Take Charge of Your Life

Often we become caregivers very suddenly, without warning — a husband is diagnosed with cancer, a child is in a car accident, a parent has a stroke. At other times, caregiving creeps up on us — we know mom is forgetting things and we slowly start taking on some administrative tasks and calling more often, until one day we realize she no longer has the capacity to live safely on her own.

Regardless of how we become a caregiver it is often a shock and always an emotionally draining experience. In the "hubbub" that follows, amidst the reorientation of our schedules, the search for resources, the fears about the future, and the challenges of the day—to—day, we never stop to think about what has happened and devise a plan that takes into account the health and well being of all concerned — including ourselves. We just go on automatic pilot and do, and do, and do.

Somewhere along the line however, it is vitally important that we do stop, take a breath, and try to gain some control over the situation, rather than letting the situation control us. It is vitally important that we choose to take charge of our lives, and believe in ourselves.

What does that mean — choose to take charge of our lives? Obviously we cannot control everything that happens to us, or to our loved ones. But we can make active choices about how we are going to deal with the circumstances of our lives.

We can look at life as a glass half full, or we can try to make lemonade out of our lemons. We can choose to martyr ourselves in the interests of the loved one for whom we are caring, or we can set limits on what we as individuals can and cannot do without causing irrevocable damage to our own health or the other relationships in our lives. Caregiving is complicated. It is forever changing, and it usually involves a variety of people, not just the caregiver and the care receiver. Recognizing this is critical if we are going to give ourselves permission to actively make choices and not always be on the receiving side of consequences.

The choices that we can make, or have to make, during the course of our caregiving experience will change as circumstances change. It is hard to realistically make a decision about whether to try a risky experimental therapy when a loved one is asymptomatic. It is impossible to really know what it would be like to have your mother living with you and your family when she is frail and needs lots of help if she is only 61 years old now and the picture of health.

Knowing that circumstances change, including our own health and innate capabilities is vital to learning to believe in yourself. Remembering that martyrdom always has a negative consequence for the martyr is a wake up call to caregivers who put everyone else's needs first and their own last, never recognizing that if they fall who apart there might not be another family member to take over.

Believing in yourself means recognizing your strengths and your limitations and knowing that it is okay to set boundaries, and to say: "yes I can and will do this, but I'm sorry, I just can't do that". Being a caregiver, a willing and loving caregiver, doesn't mean you discard the word "no" from your vocabulary.

We need to know our own limits and the consequences of our actions. The lifting we could easily do five years ago, may be having dire consequences for our back today. When we started spending more time helping grandma it didn't seem to impact the kids, but now they are feeling the loss of our attention and getting into trouble at school to prove it. Caregiving is a relationship — between many people. Believing in yourself recognizes that you are one of those people. Making choices in your own interests isn't selfish — it is often the most important thing you can do for all concerned.

Protect Your Health

It is easy to lose your true self while being a family caregiver. It is easy to lose your identity as an individual and that is why it is so important to cling to the core of your personality. Do the things that make you happy, that let you say: "I feel like 'me' when I am doing this or that, or I like 'me' when I am being this way."

Caregiving so often keeps us off balance. It is easy to get lost in its physical and psychological maelstrom—the sadness, the frustration, the stress and strain on your body and your mind, the financial worries, the emotional pain—you know them well. All the more reason to step out of the frame on a regular basis, and rekindle your special light by cultivating the other parts of yourself, to learn to give to yourself in addition to giving to others.

Rabbi Hillel, one of the great sages of Judaism, said many years ago, "If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when? He was a wise man, and he recognized the need for all of us to have balance in our lives and serve ourselves as well as others. His message is a wake—up call to all family caregivers that loving yourself is not selfish. It is in fact a way of honoring and valuing the wonder of a human life.

The inner person in each of us is different, and we all need to find our own way of keeping in touch with ourselves and developing an awareness of what fulfills us so that we can turn to those things for energy, solace, and validation. It might be the time you spend in church that allows you to separate yourself from caregiving for a time and that brings you peace; the morning jog you take that provides a surge of energy and a sense of well being. It might be the career that not only "brings home the bacon", but also provides you with personal satisfaction. It might be as simple as a 15 minute bubble bath you allow yourself every Friday evening as a way to calm yourself down and welcome the weekend.

It is not an easy thing to do especially when you're racing around and perhaps living from crisis to crisis. It is not easy because doing so often makes caregivers feel guilty because giving to one's self often means taking time away from fulfilling either real or perceived obligations.

But how do you do it? How do you create some balance between caring for others and caring for yourself? There's that pesky question again. You do it, by recognizing that your own good health is the very best present you can give your loved one. Your own continuing ability to stay healthy is vital to your continuing ability to be a competent family caregiver.

Believe in your value as a human being and your right to a few minutes of personal space, at least several times a week. If you can take more than that, it is a bonus from which you will prosper, but all of us, even the busiest of caregivers can find 10 or 15 minutes several times a week to care for themselves. The trick is to start and to focus those few minutes on you, your interests, and your dreams.

The idea is to love, honor, and value the essential part of yourself that you've slowly been losing to caregiving. Whether its taking long walks, practicing yoga, painting, praying, baking, or reading, the specific act doesn't matter. What matters is staying in tune with the question: "if you are not for yourself, who will be for you—and if not now—when."

Reach Out for Help

In caregiving circles we hear a lot about the word support. Family caregivers regularly seek supportive relationships with other caregivers, knowing they can provide the emotional sustenance needed during difficult times. What support doesn't do however, is change the circumstances under which you are living. It doesn't relieve you of some of your responsibilities. That's the work of a different word—and that word is HELP.

Providing help is something that family caregivers know a great deal about. It is what we do every day. The question is how often does someone lend you a helping hand? If you are like most family caregivers, the answer is not often enough.

But how do you get the help you need, and where do you find it? Just as you have to reach out to get support and be open to receiving it, you need to reach out and ask for help, and know how to accept it when it is offered.

We have learned that the first step in getting help is the recognition that caregiving is far too big a task to undertake alone. This is true for all caregivers, but particularly for those who are assisting loved ones with multiple needs or providing round—the—clock care.

Some people have a hard time admitting they need help. They feel guilty even thinking they can't juggle everything themselves, or they believe no one else can do their job as well as they can. They forget that the totality of caregiving, like all jobs, is made up of lots of individual tasks, not all of which are of the same importance, or require the same skills.

Many people think asking for help is a sign of weakness, but that isn't so. Asking for help is a sign of strength because it is an acknowledgement of the difficulty of the situation at hand. It is a sign of strength because it requires putting pride aside and acting in the best interest of your loved one and yourself, and that isn't an easy thing to do.

Speak Up for Yourself

The first step in standing up and being counted as an advocate for your loved one and yourself and as an activist for all caregiving families is to recognize that you are a family caregiver, in addition to being a wife, a mother or dad, a daughter or son, a sister, brother, friend, niece, etc. It is important to acknowledge your role as a family caregiver because that bonds you with the millions of other family caregivers in America who share many of the same worries and concerns that you have. Acknowledging that you are part of a group, a very large group, helps provide the strength and the conviction that you often need to Speak up for your loved one and yourself.

©2004 National Family Caregivers Association and the National Alliance for Caregiving


5.2. Top 10 Family Caregiver Tips

Ten Tips for Family Caregivers

  1. Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.
  2. Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.
  3. Watch out for signs of depression, and don't delay in getting professional help when you need it.
  4. When people offer to help, accept the offer and suggest specific things that they can do.
  5. Educate yourself about your loved one's condition. Information is empowering.
  6. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
  7. Trust your instincts. Most of the time they'll lead you in the right direction.
  8. Grieve for your losses, and then allow yourself to dream new dreams.
  9. Stand up for your rights as a caregiver and a citizen.
  10. Seek support from other caregivers. There is great strength in knowing you are not alone.

    Contributed by the National Family Caregivers Association

5.3. Caregiver Stress: Remembering To Take Care Of Yourself

Caregiver Stress: Remembering To Take Care Of Yourself

Caregivers are those that care for others because they either can't care for themselves or need assistance to carry out everyday tasks. Caregivers are often related to the people they are caring for, and the person being cared for is frequently a cherished loved one.

The job of caregiving, while a worthwhile and rewarding endeavor, is fraught with stress and requires an incredible amount of patience and understanding.

Sometimes loved ones suffer from memory loss or have lost some physical ability. Sometimes they have medical issues that need to be tended to daily. They can require help with daily essentials such as cooking, cleaning, bathing, or using the toilet, while others may require the administration of medicine and transportation to and from the doctor. Some require round-the-clock care, giving little rest to their caretakers.

Unfortunately, stress among caregivers is extremely common. Caregivers often try to do everything by themselves, which eventually leaves them worn out and unable to fully attend to everything they are expected to do. Furthermore, ignoring the symptoms of stress can affect physical and mental health and lead to burnout, and make it impossible for the caregiver to continue caring for their loved one.

Here are the sections in this article:
Who Are Caregivers?
What Are The Sources Of Caregiver Stress?
The Symptoms Of Caregiver Stress
Tips For Overcoming Caregiver Stress
Putting It All Together

Who Are Caregivers?

Caregivers are likely to be related to the person needing care. Over 65% of older people with long-term care needs, for example, rely exclusively on family and friends to provide that care. Women provide the majority of the care. There are many that work on an informal basis so accurate numbers are hard to come by, but caregivers are thought to be anywhere from 59 to 75% female. The average caregiver is about 46 years old, married, and works outside the home.

What Are The Sources Of Caregiver Stress?

Sources of caregiver stress include money worries and difficult decisions

Sources of caregiver stress include money worries and difficult decisions

The reasons caregivers experience stress are as different as the caregivers themselves. Most experience several different stressors at the same time. However, some of the most common complaints are:

No "Off" Time

Caregivers often get little time to themselves and few breaks. Every moment of their day is occupied in some kind of work. Some work full or part time in addition to their caregiving duties, and even their sleep time may be interrupted with the needs of the elderly or disabled person. While respite care is available, it is often economically out of reach for most caregivers, as well as far from where they live. Friends and family may help occasionally, but respite care is not regular or all that dependable.

Balancing Relationships

Caregivers often have to divide their attention between the loved one, a spouse, children, children and friends. This is rarely accomplished without someone feeling left out and resentful. Married caregivers may find it difficult to find "alone time" with their partner, especially if the person being cared for lives with the couple. A simple movie night might be fraught with difficulty because no one wants to leave mom home alone, for example. All couples need that time they dedicate exclusively to their relationship. Furthermore, caregivers seldom have the time it takes to nurture friendships. Single people rarely find the time to date, and even if they could, few would understand the demands placed on the caregiver's shoulders.

Role Reversals

When caring for a parent or older person, caregivers often relate that it's difficult to reverse the child/parent dynamic. Adult children are reluctant to become their parent's parent, and find it difficult to know where the line is between the safety and well-being of an aging parent and that parent's right to make decisions for themselves. Furthermore, it may be difficult for the one being cared for to accept that someone has to help them go to the bathroom or assist them while bathing, a job they may have helped the caregiver do at one time.

Volatile Personalities

Sometimes the person being cared for bears little resemblance to the person the caregiver may have known in the past. It's hard to reconcile that mom was once a gentle soul and is now demanding and harsh, or that a husband who was once quiet makes his dissatisfaction known often after a stroke. People who are growing old, who have dementia, who have had a stroke or have been involved in an accident may have a different personality than they once did.


There's usually very little economic support for caregivers, and many are forced to provide their own money toward the caregiving efforts, particularly if the loved on is living in the same home as the caregiver. A recent study by AgingCare.com showed that 34% of caregivers are contributing $300 or more each month out of their own pocket for expenses related to care for their loved one. Furthermore, there is lost time from work, diminished earning ability, and reduced Social Security benefits when the caregiver retires. Seniors who get Social Security may experience reduced benefits due to free room and board. However, caregivers may be able to claim the loved one as a dependent if they provide more than 50% of their expenses for things such as food, housing, and medical supplies. Other startling statistics: 33% of women who are caregivers will decrease their work hours as a result of their caregiving activities, 29% pass up job promotions or training opportunities, 22% take a leave of absence, 20% switch from full time to part time employment, 16% quit their jobs entirely, and 13% retire early.

Difficult Decisions

No one enjoys making some of the terrible, unthinkable decisions thrust upon caregivers from time to time. Sometimes the person being cared for has medical needs beyond the caregiver's abilities, they may become unmanageable because they have become violent or abusive, or they may need end-of-life care. None of these situations are easy, and all require a great deal of thought and often a good measure of tears.

The Symptoms of Caregiver Stress

Depression is a common complaint of stressed-out caregivers

Depression is a common complaint of stressed-out caregivers

Caregivers experience higher levels of mental and physical health problems than most people. While men and women tend to take on different roles in the caregiving process, both men and women suffer from much the same symptoms of stress.


Stress can bring on anything from a general feeling of temporary unhappiness at life, all the way to clinically diagnosable depression that requires treatment. It is one of the most common complaints among caregivers. Depression breaks the spirit and leaves caregivers unable to fulfill their responsibilities. The mental health impact is largely determined by the number of hours people are engaged in caregiving activities. One study, for example, found that middle-aged women who were engaged for 36 hours or more a week in the care of their spouse were 6 times more likely to suffer mental health consequences, and those engaged in caring for parents were twice as likely to suffer mental health consequences as a result of caregiving.


Anxiety could arguably be a part of depression. It encompasses different emotions, however, which include feelings of worry, unease, nervousness and angst about what the future holds for both the caregiver and the one being cared for. It may even manifest itself as an inability to sleep. Caregivers may worry about their ability to adequately care for their loved ones. They may also worry about their own health, because they are likely to neglect their own needs. Taking care of someone else, especially those at the end of their lives, may cause caregivers to reflect on their own mortality. All of these symptoms are normal, yet caregivers should seek professional help, since constant anxiety can cause deeper and more serious problems if left untreated.


When caregivers are overworked and exhausted, or feeling unappreciated, frustrated or powerless they may become moody, irritable, hostile or short-tempered, or just want to be left alone. However, it's unlikely that the caregiver has the luxury of being left alone to regain their emotional strength. Constant irritability can be bad for the caregiver and the person being cared for, since caregiving requires a Herculean amount of patience. The caregiver may begin to experience physical problems such as headaches and poor digestion, and may begin to snap at others, including the loved one, other members of the family, doctors, or service providers.


Denial, an element in the process of grief, is also a sign of caregiver stress. The caregiver may deny how ill the individual being cared for actually is, or may believe they will get better. They may deny that more professional help is needed when they can no longer care for the loved one adequately.

Social withdrawal

Social withdrawal is also a sign of depression, but is a little easier to recognize than some of the other symptoms. Caregivers who once enjoyed social interaction may begin to avoid it. Invitations to family dinners or neighborhood barbeques may be left unanswered or refused, and even posts on social media like Facebook may diminish as the caregiver pulls more and more inside themselves. A number of factors may contribute to this: social interactions require effort, and the caregiver may simply be too exhausted; friends and family may stop visiting; and the person being cared for may behave unpredictably and make social interactions awkward.

Health problems

Researchers have found that 1 in 3 caregivers provide care for others while being in poor health themselves. 25% of female caregivers suffer health problems as a direct result of their caregiving, and they are twice as likely to suffer from coronary heart disease as their non-caregiving counterparts.

Tips For Overcoming Caregiver Stress

Building a support network is a great way to reduce caregiver stress

Building a support network is a great way to reduce caregiver stress

One of the biggest sources of stress is the inability to escape caregiving responsibilities. Although many caregivers attempt to go it alone, they can be better caregivers if they utilize all available support services. There are several resources available that may offer help, and caregivers should not feel reluctant to ask for it even if it seems uncomfortable at first.

If anyone, such as friends and family, has mentioned they will help the caregiver when needed, those names should be put on a list and utilized from time to time. Needs should be stated very specifically. "I need you to watch mom for 2 hours on Tuesday, what time slot is convenient for you?" is much more likely to get a positive response than "I need someone to come watch mom next week," because the need and the time commitment is clearly defined.

Calling on fellow church members may yield results, but don't discount people of other denominations. Call first on people of the church or group to which the loved one belongs, but certain church groups look for ways to show support to people of their community in general, believing it to be a reflection on God. Services can range from mowing the lawn to doing grocery shopping.

Home health care is another option. People will come into the home and provide whatever services the caregiver needs, such as cooking, light housekeeping, and even respite care. Although this kind of care usually costs money, costs may vary according to the services needed. There are even some free programs out there. Military personnel can sometimes enroll in programs such as the Exceptional Family Member Program, which offers free respite care for a special-needs family member. Some caregiver support groups provide services on a sliding fee scale.

Adult day care is also an option. Nationally, adult day care ranges from $40 to $100 per day, averaging about $61, according to the National Adult Day Services Association. Some Medicare or private insurance plans cover adult day care under certain circumstances. The one being cared for may also get a great benefit from this as well, since many day care centers provide social activities, meals, and health-related services.

For caregivers who are married and/or have children, stress develops when there doesn't seem to be enough time or attention to give to everyone who seems to need it. The most effective way to get family buy-in is to seek some consensus. When everyone feels like they are being listened to, the caregiver will likely find more cooperation. Husbands and wives who cooperate form a much more effective support team for an aging parent or special-needs child. Also, remember that not every request from the person being cared for needs to be made the number one priority.

Exercise like yoga can release endorphins and reduce the effects of stress

Exercise like yoga can release endorphins and reduce the effects of stress

It may seem counter intuitive to say that caregivers need to engage in exercise when they are taxed to the limit as it is and may suffer from exhaustion. However exercise releases endorphins that can help make caregivers feel better. This doesn't mean joining a gym – caregivers have precious little time to engage in traveling back and forth – but they may be able to fit in a brisk 10-minute walk while the one being cared for is napping. Even when providing care, caregivers can sneak in a little exercise by gardening or following along with a short exercise video. Equipment such as treadmills or weights may allow the caregivers to get in some exercise, and maybe even encourage the ones being cared for to get some exercise too if they are physically able.

Along with getting a little exercise, caregivers should be sure they eat well, because this helps boost endurance and energy. They should try to avoid large, calorie-rich meals that leave them feeling sluggish and sleepy. Instead, eating many small meals of high protein foods along with fruits and vegetables is a better way to sustain energy throughout the day. Drinking plenty of water not only keeps the caregiver hydrated but can flush out toxins, helping the caregiver avoid illness.

If the caregiving job is a 24-hour, 7-days-a-week occupation, sleep may be difficult to come by, yet it is essential for the stamina and thinking ability needed when facing with the challenges of caregiving. Because someone being cared for may still need assistance during the night, such as help going to the bathroom or the administration of medication, a caregiver's sleep may be interrupted. There are things caregivers can do to help them go to sleep quickly and feel more relaxed upon awakening.

Getting enough sleep is a great way to combat anxiety

Getting enough sleep is a great way to combat anxiety

The first key to a good night's sleep is creating at least a half hour of downtime before bed. The primary caregiver may be able to enlist other family members to take over then so the caregiver can unwind. Developing a sleep routine helps; going to bed and getting up at the same time everyday keeps everything on schedule. Be sure bedrooms are conducive to sleep – the room should be dark, cool, and quiet. Avoiding alcohol and caffeine encourages more restful sleep. Caregivers should not discount the power nap – if the one being cared for is napping, caregivers should consider napping at the same time.

It's essential that caregivers care for their emotional, spiritual selves as well, since caring for a loved one requires a great deal of inner strength and can be emotionally taxing. Caregivers tend to ignore their own emotions (or worse, let them build up), which only adds to their feelings of frustration and stress. Some caregivers find relief by talking to a trusted friend, a counselor or a spiritual advisor. Others find peace by participating in religious activities and prayer. Those who aren't religious may still find calm in meditation or breathing exercises designed to sooth the mind and spirit. Visualizing a calm, peaceful place is helpful to some caregivers.

Connecting with other people is extremely important. Most caregivers feel socially isolated and disconnected with the world as their tasks become all-consuming. If possible, the caregiver should arrange to get out for a day or even just an evening with friends. If that kind of connection isn't possible, joining a support group may help because caregivers can connect with people who are in similar situations. Support groups don't have to meet in person. There are online support groups where fellow caregivers can exchange information and offer positive and encouraging words. Social media sites may be helpful to caregivers who want to keep up with friends but don't have the luxury of getting out very often.

Humor has an amazing ability to alleviate stress. Watching a funny movie, telling funny stories or reminiscing about happy times, reading the comics, or just finding humor in everyday ridiculousness actually changes brain chemistry. Many caregivers operate in "stress response," a state where high levels of stress hormones enter the bloodstream. Laughter subdues the stress response, allowing for a more relaxed feeling. Long term benefits include increased immunity to illness, pain relief, and better ability to cope with the demands at hand.

Putting it All Together

While stressful, the job of caregiving has many rewards. Studies show that because of caregivers, many elderly or special-needs people would require institutionalization, either in a nursing home or special care facility. Because the person being cared for is usually home when there is a caregiver present, families have the opportunity to enjoy the loved one, to share family history, to renew bonds and to gain from their wisdom.

Rewards aside, caregiving is still a stressful and demanding job. Learning to mitigate the stress helps caregivers maintain the vigor, attitude and stamina required to take on this role. The demands of the job are unlikely to change, so utilizing stress-reduction techniques keeps the stress from becoming overwhelming and unmanageable.

Caregivers must learn that taking care of themselves allows them to take care of others, and by doing so they can continue to care for, love, learn from and enjoy the people in their charge.

These statements have not been evaluated by the FDA. Information is presented for educational purposes only and is not intended to replace the advice of your healthcare professional. Consult your doctor or health professional before starting any treatment. Copyright © 2014.

6. Locating Care Givers

6.1. Caring.com

Caring.com  exists to help family caregivers like you make better decisions, save time and money and feel less alone. Caring.com derives its funding from advertizers. 

Providing expert help to families coping with the many challenges of caring for an aging loved one... We value the trust you place in us to help you in your caregiving journey and in your search for senior care products and services. And we’re transparent about how we make money to pay for the free information and resources we provide for consumers.

Caring.com revenue comes from referrals to senior care communities, home care agencies, providers of senior care and health insurance products/services, online advertisements, affiliate links, strategic partnerships, and other sponsorships. Income from these sources gives us the ability to offer a wide range of caregiving resources to our users, such as local directories of senior care services, all for free.

P.O. Box 32217
Charlotte NC, 28232
(800) 973-1540

6.2. Home Care Association of America (HCAOA)

Home Care Association of America (HCAOA):

HCAOA is an association for providers of home care.  HCAOA was founded on the principle that quality home care has one model of care and that model is to employ, train, monitor and supervise caregivers, create a plan of care for the client and work toward a safe and secure environment for the person at home. HCAOA offers a provider directory at the previous link which is searchable by geographic region and type of service.   

6.3. Area Agencies on Aging (AAA)

Area Agency on Aging (AAA)

AAAs coordinate and offer services that help older adults remain in their homes aided by services such as Meals-on-Wheels, homemaker assistance, and whatever else it may take to make independent living a viable option. Local AAAs may be able to provide a list of home care agencies and other resources in your community. To find the AAA nearest to you, call the Eldercare Locator at (800) 677-1116 or visit the following link: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

6.4. ARCH National Respite Network (including state listings)

ARCH National Respite Network  assists and promotes the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.


6.5. Centers for Independent Living

Centers for Independent Living (CILs)

Centers for independent living (CILs) are private, nonprofit corporations that provide services to maximize the independence of individuals with disabilities and the accessibility of the communities they live in. Local CILs may be able to provide some information for locating personal assistance.  Please visit the following link to locate the CIL that serves your region: Center for Independent Living State Directory.

6.6. Family Caregiver Alliance & State-by-State Resources

Family Caregiver Alliance is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.

State by State resource listings for family care givers including information on waiver programs with contacts

6.7. Locating Independent Care Givers in your area (Care.com)

Care.com is searchable by distance from a zip code and specialty for care givers offering their services. One can post a job and let care givers find you as well. You can register, then browse before purchasing an actual subscription (near bottom of subscription page). Prior to being posted on Care.com, the independent contractor is required to submit to a very basic criminal history search according to the business model of Care.com. In March of 2019 a Wall Street Journal article highlighted its own investigation of Care.com's vetting program for child care agencies and individual contractors offering services through it's website. As reported in 'The Verge', An investigation found providers without proper licensing and criminal histories. As is the case with any product or service that a consumer acquires or utilizes, Caveat emptor applies, Let the buyer beware. You still need to carefully check any work and criminal history background of anyone you are considering bringing into your home to provide care; for yourself or for a family member. Care.com is just one more tool to help identify potential caregivers, as are local Centers for Independent Living (CIL's), regional  SCI rehabilitation facilities and United Spinal Chapters and support groups.

6.8. Caregiver Action Network (CAN)

Caregiver Action Network (CAN) 

CAN, a leading family caregiver organization works to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers. Contact their Caregiver Help desk at 855-227-3640.  They offer a Care Support Team, staffed by caregiving experts, to help you find the right information you need to help you navigate your complex caregiving challenges. Caregiving experts are available 8:00 AM – 7:00 PM ET. They also offer chat services.

6.9. Caring Communities Respite Care Registry -Baltimore/Washington area

Caring Communities Respite Care Registry  is available for the Baltimore, MD/Washington DC area.  it is a searchable online registry that connects families and caregivers with respite care providers.  Respite care providers may have a varied training background.  Caring Communities does offer respite training for persons 16 years and older. 

7. Additional care giver groups & resources

7.1. Family Caregiver Alliance

The mission of Family Caregiver Alliance is to improve the quality of the life for family caregivers and the people who receive their care.

7.2. Friends' Health Connection

Begun in 1988, Friends' Health Connection enhances mind, body and soul through our personalized support network and dynamic educational and motivational programs.

7.3. Caregiver and personal assistance books, info sheets and additional information

Additional Information Related to Caregiving and Personal Care Assistance:

  • The Spinal Cord Injury Model System Information Network has compiled a vast number of Caregiver and Personal Care Assistance Resources, including video, information sheets, and more. The information is from a number of Spinal Cord Injury Model Systems Centers.  



7.4. Lotsa Helping Hands

Lotsa Helping Hands is free, web-based 'community' where family and friends can coordinate assistance for an individual of family in crisis. A shared on-line calendar provides an efficient means for the coordination of efforts that may include such tasks as providing rides to the hospital, meal provision or assistance with routine shopping or chores.

7.5. VA National Caregiver Support Line

The Department of Veterans' Affairs (VA) has just launched of a toll-free National Caregiver Support Line.  According to the VA, the line was created to recognize the significant contributions made by caregivers in allowing veterans to remain at home surrounded by family and friends.

Caregivers may call Monday through Friday from  8 a.m. to 11 p.m., and on Saturdays from 10:30 a.m. to 6 p.m. (EST). The VA says that licensed clinical social workers will be available to answer questions, listen to concerns and directly link callers to the Caregiver Support Coordinator at their local VA medical center. Each VA medical center is equipped with a Caregiver Support Coordinator who can locate assistance tailored to the individual's specific situation.

National Caregiver Support Line: 1-855-260-3274. Give them a call today!

7.6. Well Spouse Association

Providing peer support and education about the special challenges and unique issues facing "well" spouses every day.