A Guide for Caregivers
There are a wide range of caregiving activities, just as there is a wide range of abilities and disabilities among people with MS. Someone giving care to a person who has relatively few functional difficulties may be helping with injections of a disease-modifying drug and offering support in dealing with the medical team. Someone caring for a person with a more severe level of disability may be involved in daily activities like toileting, dressing, transferring, and feeding, as well as medical treatments. This booklet provides an overview of the issues that caregivers in most kinds of situations might face.
Those caring for someone who is newly diagnosed, or who has little disability may want to concentrate only on those sections relevant to their particular situation. The resource section at the end is a good starting place for those who want more in-depth information or specific kinds of support.
Throughout this booklet, the term caregiver is used to refer to the person primarily responsible for providing daily care to a person with MS. It may help to remember that the person giving care and the person receiving care are in this together. This booklet sometimes refers to them as carepartners. MS doesn’t change the fact that important relationships are always a two-way street. The person with disabilities may need a great deal of assistance, but the needs and concerns of both partners must be addressed if the relationship is to remain healthy.
PART I: PRACTICAL DECISIONS
Most people with MS do not develop such severe disability that they require full-time long-term care. But since there is no way to predict who will develop severe disability, it is wise to make contingency plans. This means investigating the kinds and costs of local long-term care options before a crisis occurs.
Financial and life planning
Life planning includes an investigation of income tax issues, protecting existing assets, saving for future financial needs, and end-of-life planning. People should seek advice about insurance, employment rights, and state assistance, and discuss all options.
Carepartners need to understand the coverage provided by their medical insurance, including Medicare, Social Security benefits, and available private disability insurance. Some people may qualify for state programs such as public assistance, food stamps, or Medicaid. Hospital or clinic social workers are good resources for information regarding these programs.
Carepartners also need a clear understanding of the Americans with Disabilities Act (ADA) and other legislation that provide protections concerning housing, transportation, recreation, and employment. A booklet outlining the basics of the ADA is available from the National MS Society.
Since each person’s situation is unique and the laws pertaining to legal and financial issues vary from state to state, it is wise to seek the advice of professional financial planners and “elder law” attorneys who specialize in disability-related law. Professionals can help sort through available options and explain the possible legal and tax consequences of various choices.
Advance medical directives preserve a person's right to accept or reject medical treatment. They are essential tools for maintaining personal control in the event of incapacitating illness or disability. Medical directives come in two forms. Both are needed for complete protection: (1) a living will, in which the person outlines specific treatment guidelines to be followed by health-care providers; (2) a health care proxy in which the person designates a trusted individual to make medical decisions if the person is unable to do so. Advance directive requirements, like other legal and financial issues, vary from state to state. They should be written with the help of an attorney who is familiar with the relevant state laws. An attorney is not needed for advance directives naming a health care proxy.
What level of care is needed?
It’s important to be realistic about what the person with MS needs, and what the caregiver can provide in terms of time, kinds of care, and financial responsibility. This is more easily said than done. Making changes — whether small or large — can be enormously difficult. Coming to terms with chronic illness and disability takes time and strength. Rational decision making can be sidetracked by anger, guilt, grief, confusion, or shame. Carepartners can benefit from speaking with a therapist, counselor, or other person outside the situation to get a clearer perspective.
Don’t be afraid to ask for help. The cost of not asking for help may be very high for everyone involved.
Other care options
The cost of care
Resources include local public agencies for people with disabilities such as independent living centers and agencies for senior citizens. (They often serve younger people with disabilities.) Some states have long-term care and/or personal-care assistant programs for people who are not otherwise eligible for Medicaid. Research the national organizations listed in the Resources section further below as well.
Caring at home
Adapting for safety, accessibility, and comfort
Sometimes the best choice involves moving to more accessible housing. Moving to a place that is near public transportation, stores, and other public facilities can give a person with disabilities more choices. It might also make it easier to hire necessary help.
Inevitably, the caregiver and the person with MS will have different perspectives about the same issue—about adaptations, about medication side effects, or how best to schedule hired help. It might help to remember that. MS affects everyone involved, but it affects everyone differently.
MS is extremely changeable and unpredictable. People experience attacks and remissions, loss and recovery or partial recovery of abilities. One day a person with MS can dress alone, the next day the person can’t. The caregiver has to take and then give back responsibility for tasks all the time.
Carepartners will need to rethink who does each task necessary for the smooth running of the household. For example:
Plan to re-evaluate task assignments as needs and circumstances change. And make sure to schedule personal time for everyone in the household.
Helping with daily activities
Roles and gender differences
Studies have found that many men who are caregivers report difficulty in discussing their problems and are more likely to repress emotional reactions. They find it more difficult to ask for help and many do not use the resources available to caregivers. On the other hand, some men are more willing to participate in social and recreational activities that contribute to their overall well-being.
Some women are better at expressing their feelings and accessing supportive networks. But women caregivers are more likely to
When a child is a caregiver
Children are not equipped to handle the stress of being a primary caregiver. They should never be responsible for a parent’s medical treatments or daily functions such as toileting. Children under 10 can certainly handle some household chores. Young teenagers can take on more responsibility, but they also need to spend some time with their peers. Older teenagers and young adults may be competent caregivers, but they should not be expected to undertake long-term primary care. They have their own futures to attend to.
When a parent is a caregiver
As parents age, providing care will become more difficult. In time, one or both parents may become ill and require care themselves. Alternative care plans and living arrangements should be discussed with the adult child well before such a crisis occurs.
Family and friends
Keep a list of projects, errands, and services that friends could do. Then, the next time someone offers to help in some way, it will be easy to oblige them. Give people specific, time-limited tasks. Asking a friend or relative to come by on Saturday for 3 hours in the afternoon so the caregiver can run errands is going to be more successful than asking them to stop by when they have a moment.
Doctors often refer to specific professional nurses and therapist agencies. However, home care aides and domestic assistants are hired by the carepartners. Hiring capable, reliable, and trustworthy help will be easier if the needs and concerns of the person receiving care are discussed in advance. The person with MS should always be part of the interview process.
Other caregivers, the health-care team, and the National MS Society can be of help in locating reliable agencies that screen and refer potential candidates.
Neighborhood teenagers are an underused source of low-cost help. Some schools require community service, and many teenagers would like part-time work. Ask the honors program advisor at the local public high school for names of interested students. Be willing to write recommendation letters for students who work for you and be ready to teach them something about MS and disability. Be prepared to pay at least the minimum wage.
Safety and security
If there is no secure way to leave a person with a severe disability home alone, then don’t do it! You must find help or alternatives.
The health-care team and symptom management
For some people, the most frightening aspect of giving care to someone with a chronic disease is being responsible for treatments. This may involve keeping track of medications, administering injectable drugs, or performing intermittent urinary catheterization.
Caregivers can and should make appointments with health-care professionals to get information, advice, and training. Treatment plans can fail if the caregiver does not know the medical staff, does not understand why and how a procedure is done, or gets instructions that are impossible to carry out. If there are problems with carrying out a medical or treatment procedure, contact the health-care team and arrange for a follow-up training session. With proper training and a little experience, most caregivers end up feeling confident about this part of their role.
It isn't always MS
PART II: EMOTIONAL SUPPORT
Handling stress and caregiver burnout
Providing emotional support and physical care to someone with MS is often deeply satisfying, but it is sometimes distressing, and now and then simply overwhelming. The strain of balancing employment, child-rearing, increased responsibilities in the home, and the care of the ill person may lead to feelings of martyrdom, anger, and guilt.
One of the biggest mistakes caregivers make is thinking that they can—and should—handle everything alone. The best way to avoid burnout is to have the practical and emotional support of other people. Sharing problems with others not only relieves stress, but can give new perspectives on problems.
“Why doesn’t anyone ask how I am?”
If this seems like disloyalty to a partner or family member, or a caregiver fears being labeled a complainer, reach out to support groups, religious advisors, or mental health counselors to learn constructive communication techniques.
Take care of the caregiver
Many caregivers do not get 7 hours of sleep a night. If sleep is regularly disrupted because the person with MS wakes in the night needing help with toileting or physical problems, discuss the problems with a health-care
The person with MS needs a healthy caregiver. Both partners need uninterrupted sleep.
Successful caregivers don’t give up enjoyable activities. Many organizations have respite care programs. Other family members are often willing—even pleased—to spend time with the person with MS. It may be possible to arrange respite care on a regular basis. Keep a list of people to ask on an occasional basis as well.
Many emotional stresses are the result of poor communication. The caregiver should be able to discuss concerns and fears openly; the person receiving care isn’t the only one who needs emotional support. Although collaboration isn’t always easy or possible, working out long-term plans and goals together will help both carepartners to feel more secure.
The emotional and cognitive symptoms of MS are often more distressing than the physical changes. If memory loss, problems with problem solving, mood swings, or depression are interfering with open communication or disrupting daily activities, consult a health-care professional.
Effective ways to acknowledge feelings
When making plans for outings, for example, always include extra time for travel. Calling ahead to check out bathroom facilities and entrance-ways is wise. Buildings are not always accessible, even when they say they are. Don’t make plans too complicated. And when plans fall through, have an alternative ready. If the night out is impossible, order in pizza.
A list of backup people who can be contacted for help at short notice is also useful.
Dependency and isolation
Physical abuse usually begins in the context of giving or getting personal help—the caregiver might be too rough during dressing or grooming. The person with MS might scratch a carepartner during a transfer. Once anger and frustration reach this level, abuse by either partner may become frequent.
The dangers of physical abuse are obvious, but emotional abuse is also unhealthy and damaging. Continued humiliation, harsh criticism, or manipulative behaviors can undermine the self esteem of either partner.
Family and social groups may provide support and counsel. Therapists and marriage counselors can help partners work out problems. The National MS Society can offer local referrals.
The majority of carepartners never experience such levels of distress or become abusive. However, separation, divorce, or a nursing home are healthier options than a corrosive relationship.
Sex and intimacy
Carepartners who are also spouses or partners usually face changes in their sexual relationship. These changes can have physical or
In addition to MS-related functional problems, changes in roles may change the sexual relationship. Caregivers feel that they are performing a parental role, rather than being a lover or spouse, and this can dampen intimacy.
Sexuality does not have to disappear. Partners might begin by discussing what they find most rewarding about their sexual relationship. Many preconceived ideas of what sex should be prevent the satisfaction of actual needs and pleasures. Discussion could lead to the discovery of more imaginative sexual behaviors.
Open and honest communication about sexual needs and pleasures without fear of ridicule or embarrassment is the crucial first step. Counseling with a sex therapist can be helpful in this process.
Self-help groups can provide an outlet for emotions and a source of much needed practical information. All National MS Society chapters have affiliated self-help groups for people with MS, and many have groups for caregivers as well. Religious and spiritual communities often provide support and guidance.
Many caregivers say it is difficult to find time to attend group meetings. They want to use their limited time for other things. The benefits of a group might be obtained through the Internet. There are many useful online caregiver chat groups.
PART III: Resources
Multiple Sclerosis: A Guide for Families (3rd Ed.), Rosalind C. Kalb, PhD, ed. Demos Medical Publishing, 2006. 256 pp. $24.95. 800-532-8663.
Multiple Sclerosis: The Questions You Have, the Answers You Need, Rosalind C. Kalb, PhD, ed. Demos Medical Publishing, 3rd Edition, 2004. 640 pp. $39.95.
Adapting: Financial Planning for a Life with Multiple Sclerosis, National Endowment for Financial Education, 2003. Available from National MS Society chapters.
The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, by Maria M. Meyer with Paula Derr, RN. CareTrust Publications, 3rd Edition, 2006. 364 pp. $23. 800-565-1533; http://www.comfortofhome.com/; or order through Demos Medical Publishing.
Helping Yourself Help Others: A Book for Caregivers, by Rosalynn Carter, with Susan Golant. Random House/Time Books, 1995.
Multiple Sclerosis: Your Legal Rights, by Lanny Perkins, Esq. and Sara Perkins., Esq. Demos Medical Publishing, 2nd edition, 1999. 240 pp. $21.95.
Today’s Caregiver Magazine
National Family Caregivers Association
Adaptations, equipment, and accessibility
American Academy of Orthopaedic Surgeons
Dressing Tips and Clothing Resources for Making Life Easier, by Shelley P. Schwarz, updated for 2001. To order, contact:
Home care agencies/hiring help
National Association for Home Care and Hospice
Hiring Help at Home—A fact sheet from the National MS Society. Call 1-800-344-4867 to order.
Managing Personal Assistants: A Consumer Guide, by Paralyzed Veterans of America, 2000. 70 pp. $5.00 + $3.00 shipping.
Someone Who Cares: A Guide to Hiring an In-Home Caregiver
Assisted living facilities and
American Health Care Association
American Association of Homes & Services for the Aging
Assisted Living Federation of America
ARCH National Respite Locator Service
|Tanya Radford is a freelance health writer.
Cover photos of Elroy and Rose Hill, courtesy of Gina Minielli Gunkel. From Incidental Heroes: Disabling the Myths about Multiple Sclerosis, Michael Friedman Metrobooks Publishing Group, 1999. (To order, call your nearest chapter: 1-800-344-4867.)
This publication is supported by contributions to the National Multiple Sclerosis Society from its members and friends.
Reviewed by members of the Client Education Committee of the National Multiple Sclerosis Society’s Medical Advisory Board.
|Copyright © National Multiple Sclerosis Society, 2007|