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.
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Caregivers and Neurologists: Partnering EffectivelyArticle 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.