A world of resources -- online support groups, how-to guides, specialist psychotherapists, and sympathetic providers -- is focused on caring for spinal cord injury (SCI) survivors. Adjusting to life with a spinal cord injury is logistically, emotionally, and physically challenging. Yet in the journey from accident to survival, and from surviving to thriving, one important figure is often neglected: the caregiver.
Spinal cord injury caregivers face a number of challenges, from financial stress to the exhaustion of providing for another person's needs. If you're like most caregivers, you're probably caring for a spouse or child. This comes with an additional set of challenges: grieving the person you lost without guilt, finding new ways to complete the tasks with which your loved one once helped, dealing with the conflicts inherent in every relationship without using the caregiver power imbalance to your advantage or your loved one's detriment, seeing your loved one as more than just a patient. The list of delicate balancing acts you must complete each day can feel endless.
It's no wonder that so many caregivers find themselves in need of care that feels out of reach. Caregivers are at a heightened risk of depression, anxiety, and even suicidal thoughts. These challenging feelings can increase your vulnerability to physical issues, too, producing headaches, causing you to get sick more often, and even leading to chronic pain. Caregivers need care, too, so here's how to access the resources you need.
Know That Your Health Matters
When your loved one can't move without help, struggles with intense pain, or has recently recovered from weeks in the intensive care unit, it's easy to see your own problems as trivial. They aren't. Your health matters, even if your loved one faces more dire health challenges. You cannot care for your loved one if you can't care for yourself, and your loved one's injury should not deprive you of your right to live a happy, healthy life.
Don't let guilt get in the way of seeking the resources you need. Once you recognize that your health matters, too, accessing help will feel like a right—not something to feel guilty about.
Get Support Online
If you're anxious about leaving your loved one alone or feel uncomfortable sharing your feelings with strangers, consider joining an online support group. Message boards, Facebook groups, and caregiver websites draw on the wisdom of thousands, and sometimes even millions, of caregivers, to give you a sympathetic ear whenever you need it. Many caregivers find that online support groups offer much more help than doctors or even psychotherapy, so don't be afraid to pour your heart out and see what you get in return.
Join an In-Person Support Group
There's no substitute for human touch, so if your online support group just isn't cutting it, try joining an in-person support group where you can get a hug from a sympathetic group member. If you need help accessing a support group, try asking your therapist or your loved one's doctor to put you in touch with a local group. Any support group can help, but one that works specifically with SCI survivors and their families may prove especially helpful.
Remember That Your Loved One Is Still a Person
It's easy to see your loved one's injury as so large that it eclipses the person he or she used to be. Your loved one is still in there. And he or she is still responsible for his or her feelings, treatment of you, and daily life. Don't allow the injury to become an excuse for your loved one to abuse you. You might be the caregiver, but you should still have an emotionally equal relationship. Talk openly and honestly with your loved one about issues that concern you, and if you continue having relationship difficulties, consider pursuing therapy together.
Consider Psychotherapy
Psychotherapy can do wonders for your mental health. Your therapist will work with you to help you voice your concerns about caregiving without fear of judgment. He or she can also help you craft a practical plan for managing your duties without losing your mind. And if your relationship with the loved one for whom you care is strained, your therapist can help you set clear boundaries while still remaining a competent and loving caregiver.
Protect Your Own Health
It's easy to get caught up in the mundane realities of caregiving. You may eventually find that you're not eating or sleeping well, spending little time away from your loved one, and perhaps feeling worse than you ever have.
Your health still matters. If you can't accept that your health is valuable in its own right, then at least know that you cannot be an excellent caregiver if you are in poor health. Talk to your own doctor about what you can do to remain healthy as you navigate the challenges of caregiving.
Eat healthy, balanced meals; they're not a luxury, and they can sustain you through the trials of caregiving. Just 30 minutes of exercise each day can make a huge difference, reducing your risk of an array of health problems and helping to alleviate depression, anxiety, and stress.
Do Something You Love
Many caregivers operate according to an unwritten rule: when a loved one is injured, they must give up all sources of pleasure. This is a recipe for misery for both you and your loved one. You deserve and need time to yourself. Take at least 30 minutes each day to do something you love—whether it's reading a good book, catching up with your best friend, or playing with your dog. When life is full of stress and drudgery, a few moments spent enjoying yourself can help you keep going.
Seek More Help
You do not have to care for your loved one alone. Ideally, friends and family might be willing to help out a few hours each week, but not everyone is lucky enough to have such giving people in their lives. If you can't get help from the people who love you, it's time to consider hiring some help so you can get out of the house.
Even if it's only for an hour each week, a quick break can do wonders for your mental health. Insurance often pays for in-home care. You might also consider going out for a while when your loved one undergoes physical therapy or meets with the doctor. Find a way to get some time alone, and you may soon find that your life feels bigger and much more fulfilling.
Follow this link for local and other supports for Spinal Cord Inquiry
Information and resources for caregivers. Click on underline links?
1. How to prepare myself for my new caregiving role?
1.1. Home Care Safety and Easy Access
1.2. Caregiver Self-Assessments
2. Caregiver Basics
2.1. Ask Medicare
2.2. Guide to Hiring a Caregiver=
2.3. Hot Topics and Fact Sheets on Caregiving
2.4. United Way Caregivers Coalition Educational Video Series
2.5. Pathways for Caregivers
3. Stages of Caregiving
3.1. What are the stages of Caregiving?
4. Caregiving and SCI
4.1. Information about caring for someone with an SCI
4.2. Family Adjustment
4.3. Personal Caregivers: Tips, Tricks, Tales
4.4. Personal Care Manual: The Key to Independence
5. How to navigate the healthcare maze?
5.1. Navigating the Healthcare Maze
6. How to Manage?
6.1. How to take care of YOU!
6.2. Top 10 Family Caregiver Tips
6.3. Caregiver Stress: Remembering To Take Care Of Yourself
7. Locating Care Givers
7.1. ARCH National Respite Network (including state listings)
7.2. Family Caregiver Alliance & State-by-State Resources
7.3. Locating Independent Care Givers in your area (Care.com)
7.4. National Family Caregiver Association (with State by State search)
7.5. Caring Communities Respite Care Registry -Baltimore/Washington area
8. Additional care giver groups & listings
8.1. Friends' Health Connection
8.2. Caregiver books, info sheets and additional information
8.3. Lotsa Helping Hands
8.4. VA National Caregiver Support Line
8.5. Well Spouse Association
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.
ABLEDATA, a federally funded project sponsored by the U.S. Department of Education's National Institute on Disability and Rehabilitation, provides information on over 20,000 assistive technology devices ranging from canes to voice output programs.
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.
Caregiver Self-Assessments
How are YOU?
Family caregivers often think so much about caring for someone else that they forget about themselves. Your health is important. The National Alliance for Caregiving and the American Medical Association have developed the Caregiver Self-Assessment Tool, a short quiz to help you decide whether to talk to a doctor about how caregiving-related stress might be affecting your health.
A Personal SWOT Analysis
- Have you ever heard of a SWOT analysis? It is something that is done at work to assess a company or organization's ability to change, or move forward. It is one of the first steps in strategic planning.
- SWOT stands for Strengths, Weaknesses, Opportunities and Threats. To get a handle on your life as a family caregiver, to begin to take charge, to find ways to cope with your fears, to determine what choices you have, you might consider conducting your own personal SWOT analysis.
- We all have strengths and weaknesses. These are characteristics that are intrinsic to who we are. Some of them may be physical, some intellectual, some an innate part of our personality. They may change over time, or a perceived strength may be an asset in one situation and a liability in another.
Have you ever thought about your strengths and weakness in terms of your caregiving situation?
If you haven't done it yet, you might consider making two lists:
List Number One:
Write down what you see as your strengths and what impact each one has, or could have, on your ability to be a successful family caregiver.
List Number Two:
Write down your perceived weaknesses and the consequences they have, or could have, on your caregiving.
These lists can help you sort out in which areas you could really use some assistance or advice.
Opportunities and threats come from the outside. A retirement community is being built two miles from your house, or your husband's employer will let him work from home two days a week. These are obviously opportunities that in the right circumstances could be the answer to your prayers. Threats can range from a potential loss of health insurance to the fact that you live in an old two-story house that would require extensive, and expensive, renovation to make it handicap accessible.
Can you think of what opportunities you currently can take advantage of or what threats you need to find ways to work around or somehow get rid of? A personal SWOT analysis is a place to begin to think about questions such as these, and it is one of the arrows in your quiver of resources to help you take charge of your life. Think of it as a 'living document', one that will change as you and your circumstances do. It can be a useful tool throughout your caregiving career, not just at the outset.
Caregiver Basics
Ask Medicare
Ask Medicare is a new service provided for caregivers. Get your answers to new or lingering questions.
Guide to Hiring a In Home Care Provider
Montgomery County's Caregiver Support Program "Hiring In Home Elder Care"
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:
HOME CARE AGENCY
Pros: 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.
Cons: 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.
PRIVATELY HIRED HOME CARE WORKER
Pros: 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.
Cons: 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 (in Montgomery County MD call 240-777-3037) 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
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.
