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Helping Those Who Help Us
Supporting Caregivers of People with Multiple Sclerosis
As much as I dislike having multiple sclerosis (MS), I often think that it is even worse for the people who love me and take care of me when things get rough. This responsibility falls to my husband, and I often see the worry in his eyes when I leave the faucet running by accident or take a little longer getting up from my chair.
Below is a full-text article, originally published in the journal Applied Neurology, which discusses some of the challenges and consequences caregivers face if they are not supported.
This article stresses the importance of taking care of the caregiver -- not only because it is a difficult job, but because they often don't get a great deal of support. Indeed, these heroes are often overlooked and end up suffering “collateral damage,” such as depression and related conditions. This leads to a cycle of guilt, resentment and other negative feelings, which can damage relationships.
Before we get to the article, I would like to broaden the definition of “caregiver." This article talks about caregivers of people who are severely disabled, many of them with dementia (which rarely happens in MS), and who require full-time care to meet basic needs. You may be in a situation where you do need help to do most things. More likely, though, you can do many things for yourself, but need a little extra help (and understanding) doing some of the things you used to do or would like to do. I provide more discussion about this, as well as some specific suggestions, in my Bottom Line at the end of this article.
This article, originally published in Applied Neurology and appearing on ConsultantLive.com, is made available to About.com users through a special collaboration with CMPMedica, publishers of this and other professional medical journals. For more information from journals your doctor may read, try searching on Search Medica, the search engine for medical professionals.
Caregivers and Neurologists: Partnering Effectively
Article from Applied Neurology; November 01, 2005
by Walter A. Brown, MD
When Tom Stedman (not his real name), a retired engineer who had suffered several strokes and whose dementia had started to progress, could no longer live independently, his children held a series of family meetings. John Stedman, the eldest of the 6 Stedman children, and his wife Sharon, volunteered to take Tom into their home. John's siblings--young middle-aged adults with careers and families--agreed, but only on the condition that when John and Sharon needed help they would not hesitate to call on them. The family also agreed that John and Sharon would add a first-floor bedroom to their house to accommodate their father and that this would be paid for from their father's savings. Their father's savings also would pay for daytime nurse's aides during the week when John and Sharon were at work.
A retired insurance executive, now in his second career as a pastoral associate, John Stedman is aware that caring for a disabled family member can be stressful. But as he looks back on the 5 years of caring for his father, he doesn't remember it as particularly difficult. "We asked for help whenever we needed it," he said, "and someone in the family would show up."
For many patients seen in a neurology practice, the family caregiver provides an essential component of care. Indeed, for some conditions--dementia, advanced Parkinson disease (PD), and multiple sclerosis, among others--the caregiver's competence and tenacity determines the patient's quality of life at least as much as the medication regimen. Accordingly, it is in the patient's best interest to ensure that the caregiver is providing the right sort of care and continues to do so. Yet for reasons discussed below, the clinician faces several barriers to providing support for caregivers. Some are thrown up by the health care system and some by caregivers themselves. Even within these constraints, the neurologist can use current knowledge about caregiver vulnerabilities and the interventions that help.
John Stedman stands among the fortunate caregivers. He knew that his father did not want to go to a nursing home and, with the help of his family, he managed to grant his father's wish without encountering financial, mental, or physical difficulty. Of the estimated 50 million caregivers in this country, most aren't so lucky. Caring for a disabled family member, particularly if that family member has dementia, can be extraordinarily taxing. It is particularly trying when, as is often the case with dementia, the caregiver is an elderly spouse.
The fact that unpaid family caregivers provide the bulk of long-term care in this country is nothing new. The value of this unpaid care is estimated to be $257 billion annually.1 As their importance to the health care system becomes increasingly recognized, these folks are coming to the attention of public health researchers. The past few decades have produced a library's worth of studies documenting the toll that caregiving takes.
Compared with people who are not looking after a disabled relative, caregivers experience more psychological distress, particularly depression; more physical illness; and higher mortality rates.2-4 Those who experience what the field calls "caregiver strain"--difficulty in meeting the demands of looking after their disabled relative--are particularly vulnerable to psychological and physical morbidity.3 Despite the obvious emotional and often physical demands of caregiving, most caregivers--even those who are aware that they shoulder a considerable burden--don't perceive themselves as doing anything unusual and often see their role as more rewarding than burdensome.5 More often than not, they don't ask for or readily accept help for themselves.
Needs Often Vary
Alayne Barnicoat is typical. Now a retired schoolteacher, she cared for both parents when Alzheimer disease (AD) first developed in her mother and then in her father. The nights in the emergency room and the irate phone calls from the assisted living facility where the parents stayed for a while were hard enough to deal with, but what hurt Barnicoat most was seeing her parents' vitality and intellect seep away. "I got so despondent," said this normally vivacious woman, "that I locked the door to my balcony so that I wouldn't be tempted to throw myself off." It didn't occur to Barnicoat to seek help from a health professional, support group, or anywhere else. "I knew that I was going through a tough time, but I felt it was just something I had to do. And anyway, there was nothing anyone could say that would be helpful. This was my responsibility and I was doing what I had to."
Despite the volumes of research documenting the adverse physical and psychological consequences of caregiving, the caregivers themselves, particularly women caring for their husbands, don't consider themselves especially burdened, don't think they need special attention, and often find the term "caregiver" itself somewhat off-putting. This attitude, which goes hand in hand with the notion that it is their disabled relative who is suffering and needs attention, makes caregivers reluctant to acknowledge difficulty, to seek help, and even to participate in an evaluation.
Research shows that psychological support can have a profound influence not only on how caregivers feel but on how long they can provide care.6 Mary Mittelman, DrPH, a psychiatric epidemiologist, has been studying the impact of psychological support on spouses who provide care for patients with AD. In a 9-year study conducted at the Silberstein Aging and Dementia Research Center at New York University School of Medicine, she and her associates randomly assigned 406 spouse caregivers to either usual care or a counseling and support program. The support program included 6 individual and family counseling sessions, followed by participation in weekly support groups. Ad hoc counseling was provided as needed.6
Caregivers in the counseling and support program experienced fewer depressive symptoms than those in the control group.7 This is something worth noting because, as Mittelman pointed out, "a depressed caregiver is not a good caregiver." More striking than the effect on depression, caregivers in the support program delayed placing their spouses in a nursing home for almost a year (329 days) longer than did those in the control group. As Mittelman noted, this delay in nursing home placement not only means a better quality of life for the patient but also saves the estimated $60,000 annual cost of nursing home care.
Mittelman believes that clinicians who care for patients with dementia should refer caregivers to programs like the one she and her colleagues developed. The Alzheimer's Association and other groups run many support programs, but she acknowledges that caregivers are likely to resist such referrals. She encountered considerable reluctance from many caregivers when she attempted to enroll caregivers in her study.
Most communities have caregiver support groups. Some people find them helpful, but they're not for everyone. Barnicoat had no interest in attending a support group because she "didn't want to listen to other people's troubles." But more than that, she was convinced that "there was nothing anybody in a group could say to me that would make it easier."
Louise Albert, a 77-year-old writer, has cared for her husband--battling PD--for 20 years. She attended support groups intermittently for a couple of years, sometimes with her husband, sometimes without, but didn't find them particularly helpful. The problem for her was that the people in the groups were often at different stages and grappling with different issues.
But both caregiver research and caregivers themselves point to a number of approaches that are likely to be both welcomed and helpful. Richard Schulz, PhD, a social psychologist at the University of Pittsburgh, who has recently reviewed the interventions that purport to benefit caregivers, finds a "strong consensus that all caregivers are likely to benefit from enhanced knowledge about the disease, the caregiving role, and resources available to caregivers."8
Every caregiver I spoke to echoed the value of information about the disease. Albert, for example, thinks that a caregiver should know as much as possible about the disease. She finds her husband's neurologist "wonderful," in part because he paints a realistic picture of how her husband's disease is likely to unfold, and although being realistic, he emphasizes the positive: "A glass half-full rather than half-empty approach," she said.
Care for the Caregiver
Researchers, clinicians, and caregivers agree that respite care is critical. Alison Heru, MD, director of the Family Program at Butler Hospital in Providence, RI, emphasizes to caregivers that they should not do it "24/7." "I encourage caregivers to call upon other family members and friends," she explained. "And I tell them to schedule breaks and make use of day-care facilities."
Robert Mignone, MD, a psychiatrist and neurologist in Sarasota, FL, has come across many caregivers who are reluctant to acknowledge that they are burdened and need support. "I use the airplane oxygen mask analogy with these people," he said. "I remind them that airline attendants instruct passengers traveling with children to put their oxygen mask on first if cabin air pressure falls so that they can best help their kids. I tell caregivers that they need to take care of themselves if they want to provide good care to their disabled relative. I encourage caregivers to take time for themselves. I tell them that they're not shirking their duty if they get someone in to help."
Many caregivers realize on their own that they need a breather from caregiving and turn to family members' friends, paid aides, or day care. John Stedman, for example, didn't hesitate to call on his brothers and sisters, even at the last minute, if he realized on a Saturday morning that he and Sharon needed some time to go shopping by themselves. But others, because of guilt or a conviction that no one else can quite do the job, or because of a sense that this is rightfully only their responsibility, don't readily seek assistance. Regular time off, however, is so essential to the caregiver's well-being and ability to continue to provide care that this recommendation should be presented not as a suggestion but as a prescription. In fact, it is advisable to write down this recommendation--along with a few other essentials--on a prescription slip. Research shows that patients are more likely to follow instructions written on a prescription than those that are presented verbally.9
Caregivers need to be periodically evaluated with respect to their physical state, psychological state, and their capacity to carry out caregiving tasks. This can be managed fairly easily if the caregiver, as well as the person she or he is caring for, has the same doctor. When this is not the case--and it often isn't--evaluation can be difficult. The caregiver usually doesn't see the need for evaluation, and reimbursement is problematic.
Heru suggests that the caregiver be assessed at the same time as the patient. If the caregiver's appearance, demeanor, or answers to some general inquiries (for example, "How are things going for you?") suggest the presence of a condition that requires medical attention, the caregiver should be referred for further evaluation and treatment. Heru thinks that because depression is relatively common in caregivers--particularly in the caregivers of patients with dementia--and because it so profoundly impairs both the caregiver's quality of life and her ability to provide care, physicians should be particularly alert to symptoms of depression in the caregivers of their patients.
Caregivers place great value on physician availability. Albert treasures the hour that her husband's neurologist spends with them at each 3-monthly visit and appreciates even more that he has provided them with his home phone number along with specific evening and weekend hours when he is available by telephone.
Joseph Friedman, MD, a neurologist and PD specialist in Warwick, RI, pointed out that caregivers need increased attention, support, and guidance when patients experience psychological changes. Caregivers find psychological symptoms, whether medication-induced, as in PD, or a consequence of the illness, far more unsettling and difficult to manage than physical disabilities. In fact, Friedman emphasized, psychotic symptoms are the most common reason for nursing home placement.
Clearly, neurologists and primary care physicians cannot provide caregivers with all the supportive services that they require but they can put them in touch with the available resources. A number of Web sites provide a wealth of information for caregivers. The Alzheimer's Association (www.alz.org) and National Family Caregivers Association (www.nfcacares.org), among other groups, offer information, counseling, and support groups at no cost. Providing caregivers with a list of relevant Internet and community resources would be helpful.
Caregivers derive immense satisfaction from a clinician who tells them that what they are doing is difficult, worthwhile, and important. Mignone, however, believes that doctors too rarely spend the few minutes it takes to provide such support. "Caregivers are often taken for granted," he said. "They are saints who are ignored." He makes the effort to tell his patients' caregivers that he knows that what they're doing is often a "lonely and incredibly generous task." Friedman said that caregivers deserve sympathy and praise but that he and his colleagues frequently fail to point out that "they're doing a good job."
Caregivers confirmed the importance of simple statements of encouragement and appreciation. Albert pointed with gratitude to the fact that her husband's doctor tells them "how well we're both doing." Barnicoat found that only 2 things sustained her during the 3 years she cared for her parents. One was a friend going through a similar experience, with whom she talked and laughed almost daily. The other was that her parents' doctors acknowledged the importance of what she was doing. "They understood that I was trying to give my parents the best quality of life," she said, "and they let me know that what I was doing was valuable." *
BOTTOM LINE by Julie Stachowiak
Even if we are not bedridden and totally dependent, things are usually different than they used to be when it comes to the relationships with our caregivers. Where does that leave us?
If you have MS (or any other disease which requires care), there are some things you can do to help take care of the people that care for you:
- Give Them a Pass: Encourage them to take breaks and enjoy something they like, even if it means that you can’t come along.
- Spread the Responsibility Around: Ask other people for help besides your spouse or the person who always helps you. Someone (I don’t remember who) once said: “If you want someone to be your friend, ask them for help.” Many people love to be asked for assistance and would love to do something for you -- they just need you to make a specific request.
- Get Your Doc to Help: Mention problems to your neurologist and ask for suggestions. Perhaps an occupational therapist could come to your house and help make modifications that would help you be less reliant on your caregiver.
- Keep Them Informed: Share all information about MS and specific symptoms that you are having with your caregiver. Send them to this website, for example. Show them articles that describe what you are feeling or what you are worried about.
- Have Frank Discussions: Try to present the situation as a team effort. I found MS and Your Feelings, by Alison Shadday, helpful in guiding such discussions and helping caregivers see that they are not alone (there is a section in there specifically for caregivers of people with MS). This book also has wonderful stress-reducing suggestions that may be useful for both you and your caregiver.
- Plan for a Relapse or Symptom Worsening: By making a list of all your responsibilities, organizing all of the tasks, deciding who can be responsible for them and enlisting help before you need this type of assistance, you can eliminate a great deal of stress for yourself and your primary caregiver. This will allow both of you to focus on getting you through treatment, helping you to heal and giving both of you space to adapt to any new situation.
Caregiving can be particularly stressful for couples. One person being put in the position of caring for the other (even if this just means giving a little help some of the time) can change any relationship. MS can transform things from a partnership between lovers to more of a parent-child situation, stripping people of dignity and introducing embarrassment and dependence, even though that is not intended. By being aware of this, you can both do your part to prevent it.
Marriage and Multiple Sclerosis
Help for ALS Caregivers
Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the ALS patient often causes the caregiver to overlook her/his own needs eating properly, getting enough rest, taking time to pursue one’s own interests.
View our Caregiving brochure - When a Loved One Has ALS
Primarily, caregiving is provided by family members. Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress. The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.
Family Caregiving Statistics
Compiled by the National Family Caregivers Association
- More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.
Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009
- Approximately 80% of home care services are provided by family caregivers. Source: US General Accounting Office (GAO/HEHS 95-26, "Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages") 1994.
- Approximately 66% of family caregivers are women. Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP. November 2009
- 78% of adults living in the community and in need of long-term care depend on family and friends as their only source of help. Thompson, L. Long-term care: support for family caregivers. 2004
- The value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving; National Alliance for Caregiving and Evercare. March 2009
The National Family Caregiver's Association has also compiled state-by-state statistics on the economic impact of family caregiving. For more information, please visit www.nfcacares.org.
Last update 02/2011
Caring for someone with ALS is hard work and more than a full time job. But there are resources and support to help you care for your loved one with ALS. The ALS Association is here to offer direct support like respite care dollars for caregiving assistance as well as emotional support, advice in dealing with practical issues and access to community resources.
Below are articles that address some of the issues of caring for someone with ALS.
What is ALS Family Caregiving?
Tips for Getting Help in the Home
Form a Share the Care Group
10 tips for Family Caregivers
Respite Care Program - Respite Care Application