Brochure A Guide for Caregivers

Transcript

1 A Guide for Support Partners

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3 A Guide for Support Partners BY TANYA R ADFORD Tanya Radford is a freelance health writer. This publication is supported by contributions to the National Multiple Sclerosis Society from its members and friends. Reviewed by: Roland Depew (carepartner); Sue Kushner, MS, PT; Dorothy Northrop, MSW, ACSW and Nancy Reitman, RN, MA, MSCN. © 2019 NATIONAL MS SOCIETY. ALL RIGHTS RESERVED.

4 Table of Contents Foreword ... 1 4 “Why doesn’t anyone ask how I am?” ... 5 Effective ways to acknowledge feelings ... Two-way communication ... 5 Taking care of the support partner ... 6 6 Outside activities ... Handling unpredictability ... 7 Sex and intimacy ... 8 Dependency and isolation ... 9 Anger ... 9 Avoiding abuse ... 9 Part II: Caring at Home ... 11 Adapting for safety, accessibility and comfort ... 11 11 Flexible roles ... Helping with daily activities ... 13 Roles and gender differences ... 13 Medical issues ... 14 The healthcare team and symptom management ... 14 It isn’t always MS ... 15 When a child is a support partner ... 16 When a parent is a support partner ... 16 Safety and security ... 17 Part III: Hiring Help ... 17 What level of care is needed? ... 18

5 Part IV: Other Care Options ... 19 20 The cost of care ... Part V: Practical Decisions ... 21 Financial and life planning ... 21 Part VI: Resources ... 23 Books ... 23 Caregiver support ... 25 Home care agencies/hiring help ... 27 Assisted living facilities and nursing homes ... 28 Respite services ... 28 Notes ... 29 Other popular resources include: ... 30

6 Foreword Partners, family and friends can be drawn more closely together when they meet the challenges of caring for a loved one with a chronic illness. Providing loving care can be deeply satisfying, but also physically and emotionally exhausting especially for the primary support partner (often a partner or spouse, but can also be a child, parent or friend). There are a wide range of support activities, just as there are a wide range of abilities and disabilities among people with MS. A support partner for a person who has relatively few functional difficulties may be providing emotional support, helping with injections of a disease-modifying medication and offering help in dealing with the medical team. A support partner for someone with a greater level of disability may offer emotional support as well as providing daily, hands-on assistance with toileting, dressing, transferring, feeding and medication management. These types of hands- on assistance are sometimes referred to as “caregiving.” Because MS is a variable and unpredictable disease, the support partner role may change from one day to another — for example when the person with MS is experiencing an exacerbation — or may change gradually over time when and if the disease progresses. | A Guide for Support Partners 1

7 This booklet provides an overview of the issues that support partners in most kinds of situations might face. Support partners 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. It is important to keep in mind that the support partner and the person with MS are in this together. Living with MS requires a team effort — a partnership that grows and evolves over time. This booklet sometimes refers to them as because MS doesn’t change the fact that carepartners important relationships are always a two-way street — partners care for one another. 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. The more you can each learn about MS, the better able both of you will be to deal with the challenges ahead. Don’t be shy about asking your medical team for advice on sources of support and assistance, and reach out to the National MS Society. Being proactive early on | 2 National MS Society

8 will eliminate a lot of frustration down the road. Open communications between all parties is something that can’t be emphasized enough. A support partner is a spouse or partner, family member or friend who provides emotional support, assistance, and care – as needed – for a person living with MS. Support partners may also see the term “caregiver” or “carer” used to describe this important role. In this brochure, we use the term “caregiving” to refer to hands-on assistance with daily activities such as toileting, bathing, dressing transfers and medication management. The term carepartner refers to a person living with MS and her or his support partner. Together, they manage the challenges of life with MS while supporting and caring for each other. Their care partnership can allow each of them to thrive in the face of MS challenges and changes. | A Guide for Support Partners 3

9 Part I: Emotional Support 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 ongoing care of a loved one can lead to feelings of martyrdom, anger and guilt. One of the biggest mistakes support partners 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 also give new perspectives on problems. “Why doesn’t anyone ask how I am?” It is easy to feel invisible. Everyone’s attention goes to the person with MS and no one seems to understand what the support partner is going through. Many support partners say, “no one even asks.” Mental health experts say it’s not wise to let feelings of neglect build up. Support partners need to speak up and tell other people what they need and how they feel. If you’re a support partner who fears being labeled selfish, a complainer or disloyal, remember the importance of “putting on your own oxygen mask before assisting the person next to you.” Self-care is essential to being able to care for someone else. For help with your feelings and concerns, reach out to support groups, religious advisors, or mental health counselors for information, support and resources. | 4 National MS Society

10 can provide an outlet for emotions and a Self-help groups source of much needed practical information. The National MS Society has affiliated self-help groups all around the country for people with MS, and many groups for support partners exist as well. Religious and spiritual communities often provide support and guidance. Many support partners 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 chat groups for support partners/caregivers. Effective ways to acknowledge feelings Some people find that talking about their care partnership happens more easily when they schedule a regular time for conversation. Taking time out to sort out your feelings before bringing them up for discussion will make it easier to speak clearly and calmly. Ignoring a problem will not make it disappear. Anger, grief and fear are natural responses to challenges that can sometimes feel overwhelming. Talking about them can lead to productive and collaborative problem-solving. Trying to keep them under wraps may simply lead to guilt, numbness and resentment. Two-way communication Discuss concerns and fears openly; everyone needs emotional support. Although collaboration isn’t always easy or possible, working out long-term plans and goals together | A Guide for Support Partners 5

11 will help both carepartners to feel more secure. Many emotional stresses are the result of poor communication. 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 healthcare professional. Mental health professionals address mood and cognitive issues and offer communication tips and strategies. Taking care of the support partner Many support partners focus so much attention on the needs of the person with MS that their own physical health is compromised. They ignore their ailments and neglect preventive health measures like exercise, diet and regular medical examinations. Many support partners do not get adequate rest or uninterrupted sleep. 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 healthcare professional. The person with MS needs a healthy support partner, and an effective partnership depends on the physical and emotional wellbeing of both partners. Outside activities Researchers report that the emotional stress of caring has little to do with the physical condition of the person with MS or the | 6 National MS Society

12 length of time the person has been ill. Emotional stress seems more related to how “trapped” caregivers feel in their situation. This, in turn, seems to be closely related to the satisfaction they have in their personal and social relationships, and the amount of time available to pursue their own interests and activities. Successful support partners keep 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. It is important for both the person with MS and the support partner to stay involved in activities that have meaning for them and to make time for regular physical exercise. Handling unpredictability Living with MS means expecting the unexpected, making backup plans and focusing on what can be done rather than what can’t. The unpredictability of MS can be very stressful, but it can be managed. If you are 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. | A Guide for Support Partners 7

13 Sex and intimacy Support partners who are also spouses or partners usually face changes in their sexual relationship. These changes can have physical or emotional causes. MS can interfere with both sex drive and function. Problems can include decreased vaginal lubrication, numbness or painful sensations, decreased libido, erectile dysfunction, or problems reaching orgasm. MS fatigue can interfere with sexual activity. Spasticity or incontinence problems can negatively affect sexual desire. Most of these symptoms can be managed, so it is a good idea to seek the help of a healthcare professional. In addition to MS-related functional problems, changes in roles may change the sexual relationship. Support partners providing hands-on care may feel that they are performing more of a nursing 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 intimate relationship. Many preconceived ideas of what sex “should be” get in the way of satisfying needs and giving and receiving pleasure. 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. | 8 National MS Society

14 Dependency and isolation Concerns about dependency and isolation are common in families affected by chronic illness. The person with MS could become increasingly dependent on the support partner, and the support partner needs others for respite and support. Many support partners feel shame about being dependent on others. As a result, many don’t ask for the help that they need. Anxieties are greatly reduced for support partners who are able to develop a personal and social support system for themselves. Anger The situation feels — and MS is — unfair. Sometimes anger and frustration can build until it begins to seep out in hurtful words or actions. Talking about feelings with each other and with a counselor or religious advisor is an effective way to keep feelings from becoming overwhelming or spinning out of control. Physical exercise, meditation, and other self-care activities are also healthy outlets for anger and frustration. Avoiding abuse As carepartners, it is critical for both people to care for each other’s emotional and physical well-being. While circumstances that produce frustration and anger are often unavoidable, an emotionally damaging or physically aggressive response is not okay. Tensions can mount in the most loving of families and both carepartners may struggle | A Guide for Support Partners 9

15 with strong emotions — but abusive behavior is never acceptable. If tensions are mounting, call for a time-out, and call for help. Physical abuse usually begins in the context of giving or getting personal help — the support partner might be too rough while providing assistance. The person with MS might scratch a support partner 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. The majority of carepartners never experience such levels of distress or become abusive. Family and social groups may provide support and counsel. Therapists and marriage counselors can help partners work out problems. Sometimes having another person (a counselor) facilitate conversations around the real challenges in MS for the person with MS and the support partner can help both people understand each other better. If the relationship is no longer sustainable, a counselor may also assist with the difficult choices regarding divorce or long-term care options. The National MS Society can offer local referrals. | 10 National MS Society

16 Part II: Caring at Home Adapting for safety, accessibility and comfort Adaptations can increase safety, accessibility and comfort for everyone. But before deciding to make major home renovations, ask a doctor for a referral to an occupational therapist (OT) and physical therapist (PT) for a home visit. These therapists can suggest ways to keep the person with MS as independent as possible, ensure safety and reduce the physical strain on the support partner. Ramps, widened doorways, and renovations in the kitchen and bath can often solve accessibility problems. New or existing equipment such as walkers, wheelchairs, etc. need to be addressed both for the home and work environment. The needs for each of these settings may be different. There are home remodelers and architects who can be consulted to make the necessary changes. These changes may need to comply with various regulations and/or Americans with Disabilities Act (ADA) requirements. Not all changes involve major expense. The National MS Society has information about practical, low-cost modifications and can provide referrals to appropriate resources. Flexible roles 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 support | A Guide for Support Partners 11

17 partner must assume and then give back responsibility for tasks all the time. Carepartners will need to rethink tasks and family schedules to ensure the smooth running of the household. For example: n Household tasks such as general cleaning, shopping, cooking, laundry, child care and transportation. n Care-related tasks such as dressing, bathing, eating, toileting, exercising, transportation, doctor visits and taking medication. n Daily activities such as work, recreation, entertainment, exercise, hobbies, private time and religious activities. Plan to re-evaluate schedules and task assignments as needs and circumstances change. And make sure to schedule personal time for everyone in the household. Relationships change, particularly as the support needs of the person with MS increase and the support partner has to take on more and more responsibilities. This shift can be a source of tremendous anxiety. Inevitably, the support partner and the person with MS will have different perspectives about the same issue — for example, the severity of symptoms, adaptations in the home, use of mobility aids, and the amount of assistance needed or whether hired help needs to be sought. MS affects everyone involved, but it affects everyone differently. Take the time to talk about it. | 12 National MS Society

18 Helping with daily activities If a task seems impossibly difficult or stressful, there is probably an easier way to do it. The medical team can provide tips and techniques for bathing, dressing, toileting and safe transfers. Other support partners/caregivers and the National MS Society are also good sources of advice and tips. Roles and gender differences Women and men who act as support partners face the same day-to-day responsibilities, frustrations and satisfactions. However, women support partners may feel more comfortable than men support partners since providing care has traditionally been viewed as a more feminine role. Studies have found that many men who are support partners report difficulty in discussing their problems and are more likely to suppress 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, men may be more willing to participate in social and recreational activities that contribute to their overall well-being. Women are often better at expressing their feelings and accessing supportive networks. But women support partners are more likely to neglect their own health and their need for outside activities. They tend to report more physical and emotional ailments than their male counterparts. | A Guide for Support Partners 13

19 Family and friends Family and friends can be crucial members in a network of assistance but caregivers often report that it’s hard to actually get their help. The first step is to tell friends and family that their help is needed and welcomed. Friends often worry that offering help might seem intrusive, especially when it looks as if things are being handled well. 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 three hours in the afternoon so the support partner can run errands is going to be more successful than asking them to stop by when they have a moment. Medical issues Management of MS and its symptoms will be easier if everyone involved learns as much about the disease as possible. For general information, contact the National MS Society. To get the best information about an individual, caregivers should rely first on the person with MS and that person’s medical professionals. The healthcare team and symptom management Many MS symptoms can be controlled by medications, management techniques and rehabilitative therapies. Once a person with MS has given permission for the healthcare team to talk with his or her support partner, the healthcare | 14 National MS Society

20 team can offer symptom management tips and strategies, including those that can help with the bowel and bladder issues or sleep problems that can be particularly challenging for support partners. Although MS cannot yet be cured, symptoms can be managed. 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. Support partners can and should make appointments with healthcare professionals to get information, advice and training. Treatment plans can fail if the support partner does not know the medical staff, does not understand why and how a procedure is done, or instructions are given that seem impossible to carry out. If there are problems with carrying out a medical or treatment procedure, contact the healthcare team and arrange for a follow-up training session. With proper training and a little experience, most support partners end up feeling confident about this part of their role. It isn’t always MS Both the person with MS and the support partner need to remember that having MS doesn’t protect anyone from the normal ills that can affect us. This is especially important for people with MS who see a neurologist for their medical care. Specialists may not suggest routine, preventive health exams like Pap smears or prostate exams. Type “Preventive Care | A Guide for Support Partners 15

21 Recommendations for Adults with MS” in the search box on the nationalMSsociety.org , or call 1-800-344- Society’s website at 4867 to receive a printed copy of this important document. When a child is a support partner Sometimes children assume major household and personal care responsibilities when a parent has disability due to MS. This is more likely to occur in single-parent households. While it is positive for children to take on household responsibilities, their needs must be carefully balanced with the amount and level of caregiving they are expected to do. Children are not equipped to handle the stress of being a primary support person. 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 support partners, but they should not be expected to undertake long-term primary support. They have their own futures to attend to. When a parent is a support partner The return of an adult child to the home can be stressful for both the parents and the adult child. Often, this homecoming resurfaces the earlier struggles that occurred before the child became independent. Parents probably have house rules that they want to have respected. But the adult child needs to be treated as an adult, and some house rules may presume the wrong kind of dependence. | 16 National MS Society

22 As parents age, providing care often becomes 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. Safety and security Leaving a person with significant disabilities home alone can be a frightening proposition for both partners. Advance planning and adaptation of the home can decrease these worries. The advances in technology have increased the safety devices available. Personal emergency response services (PERS) can be worn around the neck or on the wrist to summon help in an emergency. Some PERS can even detect falls and notify emergency services without needing to be manually alerted. There are apps for smart phones that can notify you based on parameters you set, like get notified if your partner hasn’t made coffee by 10 am. There are also cameras that can be placed in your home and viewed from a smart phone to ensure all is well. If there is no secure way to leave a person with a severe disability home alone, then don’t do it! Find help or alternatives. Part III: Hiring Help People with disabilities often need significant help with daily care. Family and friends may not be able to do it alone and additional help may be needed. Unfortunately, this kind of help is not generally covered by insurance plans. Unless one of the carepartners has a long-term care | A Guide for Support Partners 17

23 insurance policy with a home care provision, paid care will be dependent on what the family can afford. Doctors typically refer to specific professional nurses and therapist agencies. However, it is often less expensive to hire home care aides and domestic assistants independently. 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 support partners/caregivers, the healthcare team and the National MS Society can be of help in locating reliable agencies that screen and refer potential candidates. They can also provide you with tips on how to find, interview and train home care workers on your own. 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. What level of care is needed? It’s important to be realistic about what the person with MS needs, and what the support partner can provide in terms of time, types of care and financial responsibility. This is more easily said than done. Making changes — whether small | 18 National MS Society

24 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. Even people with a significant level of disability can live at home successfully. There are usually a number of solutions to practical problems. For example, someone who cannot transfer from wheelchair to bed or bath can be moved using the proper kind of lift. People with disabilities can be more independent when a home has wide doorways and grab bars. When the support partner works full-time and the person with MS needs some aid and companionship during the day, adult day programs may be an option. “Caregiver burnout” can be avoided when carepartners make use of respite care, friends and support groups. Part IV: Other Care Options Evaluating care needs is a joint effort and must be an ongoing process. Ask your medical team to assess what treatments, adaptations and other changes are necessary. For some, training in self-administering medical treatments, advice on coping with fatigue and occasional relapses, and some long-range financial planning will suffice. For others, | A Guide for Support Partners 19

25 more at-home support will be needed. And for some, assisted living or a nursing home will be the better choice for all concerned. Due to the complex clinical needs of MS, and the years of care that might be required, providing that care at home can become impossible for some families. If that time comes, it is important to explore all the options available. There are different kinds of live-in facilities, including assisted living, supportive housing, continuing care communities and nursing homes. Deciding what kind of facility is best will depend on individual needs and financial resources available. The cost of care All care options cost money — a situation that often coincides with a drop in the income earned by the person with MS. Researching possible resources begins with asking questions. Start with the National MS Society or with a social worker at your hospital, social agency or MS clinic. 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 respite care and/or personal- care assistant programs for people who are not otherwise eligible for Medicaid and might allow a loved one to remain at home longer. Research the national organizations listed in the Resources section beginning on page 23 as well. | 20 National MS Society

26 Part V: 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 Financial and life planning for continued financial stability are essential and should be undertaken early. The process of long-term planning will help the care partners feel more secure about their well-being, regardless of what the future brings. A book titled Financial Planning for a Life with Multiple Sclerosis is available on the Society’s Web site at nationalMSsociety.org/financialplanning . 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. The Family and Medical Leave Act (FMLA) is a Federal law providing unpaid leave to care for your serious health condition or that of an immediate family member. For information about who is eligible for FMLA, how to speak with your employer about your need for time off work under FMLA protections, medical certification requirements and processes for filing a complaint if you feel | A Guide for Support Partners 21

27 your employer is violating your FMLA rights, follow this link to download The Employee’s Guide to the Family and Medical Leave Act from the Department of Labor: dol.gov/whd/fmla/employeeguide.pdf 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 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. Sometimes there needs to be planning around a move 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. 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. | 22 National MS Society

28 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 healthcare providers; (2) a healthcare 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 healthcare proxy. Part VI: Resources Books These titles may be available from the National MS Society, the publisher or online booksellers. n Caring for Loved Ones with Advanced MS: A Guide for Families, Dorothy E. Northrop, MSW, ACSW, and Debra Frankel, MS, OTR, ed. 2010. 112 pp. Available in print or online from the National MS Society. | A Guide for Support Partners 23

29 This publication provides caregiving tips and support to families providing significant daily care to a family member with MS. n Multiple Sclerosis: A Guide for Families, Rosalind C. Kalb, PhD, ed. Demos Health, (3rd Ed.), 2006. 256 pp. Contains chapters on topics ranging from emotional and cognitive issues, to sexuality and intimacy, to life planning. n Multiple Sclerosis: The Questions You Have, the Answers You Need, Rosalind C. Kalb, PhD, ed. Demos Health, (5th Ed.), 2012. 448 pp. Focuses on medical issues and treatment, with chapters on financial planning, insurance, and occupational therapy. n Financial Planning for a Life with Multiple Sclerosis, National Endowment for Financial Education, 2017. 85 pp. Available in print or online from the National MS Society. A guide addressing financial organization, planning, insurance options, employment concerns, and benefit issues with strategies to help families plan wisely for the future and meet financial challenges that often accompany life with MS. n The Comfort of Home: An Illustrated Step-by-Step Guide by Maria M. Meyer with Paula Derr, RN. for Caregivers, CareTrust Publications, (4th Ed.), 2014. 409 pp. www.comfortofhome.com A practical guide to caregiving, from activities of daily living to emergency situations. Includes many illustrations. | 24 National MS Society

30 n by Helping Yourself Help Others: A Book for Caregivers, Rosalynn Carter, with Susan Golant. Random House/Time Books, 1995. 288 pp. Lots of basic information for support partners. n Multiple Sclerosis: Your Legal Rights, by Lanny Perkins, Esq. and Sara Perkins., Esq. Demos Health, 3rd edition, 2008. 153 pp. A comprehensive guide to working with doctors and lawyers, making choices about employment and income, MS and your job, disability and other federal benefits, insurance issues, dealing with taxes, family law, handling debts, and getting around with MS. n Primary Progressive Multiple Sclerosis: What You Need to Know, by Nancy J. Holland, EdD, Jack S. Burks, MD, and Diana M. Schneider, PhD. DiaMedica Publishing, 2010. 166 pp. Caregiver support n Caregiver.com caregiver.com > Maintains one of the most visited caregiver sites on the internet. > Publishes Today’s Caregiver magazine. > Provides links to many resources such as government and nonprofit agencies. n Today’s Caregiver Magazine caregiver.com/magazine 800 - 829 -2734 A bi-monthly caregiver magazine. > | A Guide for Support Partners 25

31 n Caregiver Action Network (CAN) caregiveraction.org [email protected] 202-454-3970, > The nation’s leading family caregiver organization working to educate, support, empower and improve the quality of life people who care for loved ones with a chronic illness or disability. n The Well Spouse Association wellspouse.org 800-838-0879, [email protected] > Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. > Publishes Mainstay , a quarterly newsletter. > Provides networking/local support groups. n Care.com care.com 877-227-3115 > Offers referrals to care providers as well as an extensive library of articles about care and caregiving. > Care for Seniors: Search for assisted living, home care, senior caregivers, and transportation needs. n National Council on Independent Living ncil.org Toll Free: 877-525-3400, 202-207-0334 (Voice), 202-207-0340 (TTY), [email protected] > Refers callers to local independent living centers. > Offers publications and advice related to disability issues. > Advocates for policy changes. > Promotes, develops and administers affordable, accessible housing and support services in keeping with the independent living philosophy. | 26 National MS Society

32 Home care agencies/hiring help n National Association for Home Care and Hospice nahc.org 202- 5 47-7424 > Represents the nation’s 33,000 home care and hospice providers as well as the interests of the chronically ill and disabled and the support partners who provide them with in-home health and hospice services. > Provides referrals to state associations, which can refer callers to local agencies. n Hiring Help at Home A fact sheet from the National MS Society. To order, call > 8 0 0 - 3 4 4 - 4 8 6 7. n Paralyzed Veterans of America pva.org 800-424-8200, [email protected] Working to provide veterans and people with disabilities, > and their families, with everything they need to live full and productive lives. n U.S. Dept. of Veterans Affairs (VA) Caregiver caregiver.va.gov 8 55 -26 0 -3274 Provides caregiver resources including a caregiver support > line, support coordinators, adult day healthcare centers, tele-health services, and respite care, among others. | A Guide for Support Partners 27

33 Assisted living facilities and nursing homes n American Health Care Association ahcancal.org 202-842-4444 > Provides consumer information on services, financing, public policy, nursing facilities, assisted living and subacute care. Respite services n ARCH National Respite Network and Resource Centerrespitelocator.org > Provides support partners with contact information on respite services in their area. n Eldercare Locator n4a.org 202-872-0888 > National Association of Area Agencies on Aging. > Supplies information about many eldercare issues, including respite care. > Provides referrals to local respite programs and area agencies on aging. n United Way 211.org Call 211 2-1-1 is available throughout the U.S. by phone, text and > web. A toll-free call to 2-1-1 connects you to a community resource specialist in your area who can help you find services and resources. | 28 National MS Society

34 Notes _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ | A Guide for Support Partners 29

35 The National Multiple Sclerosis Society (“Society”) is proud to be a source of information on multiple sclerosis related topics. The information provided is based on professional advice, published experience, and expert opinion, but does not constitute medical or legal advice. For specific medical advice, consult a qualified physician. For specific legal advice, consult a qualified attorney. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered helpful information. The Society assumes no liability for the recipient’s use of any product or service mentioned. The Society does not independently verify whether the information provided by each service provider is accurate. The Society undertakes no responsibility to verify whether the service provider is appropriately licensed and certified and has applicable insurance coverage. Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your healthcare professional and contacting the National MS Society at nationalMSsociety.org or 1-800-344-4867. The Society publishes many other resources about various aspects of MS. Visit nationalMSsociety.org/brochures or call 1-800-344-4867. Other popular resources include: n ADA & People with MS n Food for Thought: MS and Nutrition n Managing MS Through Rehabilitation n Multiple Sclerosis and Your Emotions n Taming Stress in Multiple Sclerosis | 30 National MS Society

36 The National MS Society mobilizes people and resources so that everyone affected by multiple sclerosis can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. We help each person address the challenges of living with MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward. society.org national MS For Information: 1-800-344-4867 services_guideForSuppPart_pub_1/19 © 2019 National MS Society | A Guide for Support Partners 31

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