Care Giving and Receiving
May and June have two traditional American holidays: Mother's and Father's Day. In reflecting on these annual opportunities to think about our own parents and children, I am reminded of another almost uniquely American family opportunity: caring for that person in need, usually a family person. Without getting into the far-ranging political discussion this could lead to about who must be responsible for home care of relatives with impaired health, we can universally agree that it is a family concern when a member of the family is in ill health. Often it is a parent, but as we age it's just as likely to be a spouse. It can also be a child. Regardless of who it is, today in the United States there are a lot of "caregivers" for a close family member in need.
Two papers in the Journal of the American Medical Association (JAMA March 12, 2014 by Adelman et al and Lynn) addressed the increasing number and the burgeoning problems that American caregivers face. A caregiver is generally defined as an individual who is unpaid and usually untrained to care for another --usually a close family member. We all know of friends or family members who have been given or assumed the role of home care provider for a loved one that is suffering from chronic medical problem(s) that does not permit that person to be independent. The role generally is filled by a daughter of an infirm parent or parents, and/or a wife of an increasingly disabled spouse. Yes, it is usually a woman that fills this role although many men do as well, but the majority of caregivers are women. The role of caregiver is hard, emotionally and often financially draining and sometimes physically and mentally overwhelming.
Many people who, despite their best efforts to live healthy lives, inevitably develop chronic diseases that over time increasingly incapacitate from cancer, heart disease, stroke, diabetes, arthritis, Alzheimer's disease, other neurologic disease, or alcohol and/or drug abuse. Every person who has an advanced medical problem can and often does ultimately depend on another for assistance, and this other person is usually the family member, or caregiver. The caregiver can be responsible every day and every hour of the day. This puts an enormous burden on the caregiver, and there is now some awareness in the medical profession that the caregiver needs attention and help with the burden of care they have assumed or been given.
The caregiver is under enormous unremitting stress every single day. The caregiver burden is huge and some of the difficulties are listed in Table 1. These stressors lead to a number of severe and important problems for the caregiver and they are listed in Table 2. It is difficult to know which factors in Table 1 lead to the problems in Table 2, but there is no doubt that the large, unremitting burden can lead to life-style and life-course loss of health and happiness. The reward for providing care for the loved one can be overcome by the stress of this duty to the detriment of the caregiver. In many other countries the governments have recognized this and put social programs in place to assist individuals in the role of caregiver, but this, with very few exceptions, is not the case in the U.S. (Actually the Veterans Administration and our government through them is a leader in providing assistance to families in need.) Thus, it becomes the responsibility of other family members, the caregiver, good friends and physicians of the disabled to monitor and find ways to assist the caregiver before it is too late.
There are a number of important steps that must be taken to protect caregivers and their health. The first and most important is to acknowledge that the role of caregiver exists for the loved one. At some point in a continuum of chronic illness--and it can be hard to pin point the specific time--a loved one becomes dependent on another for care. This is when the role of caregiver needs to be first recognized and acknowledged by the caregiver as well as friends and family. Once the role is acknowledged, then it is incumbent on all to monitor the caregiver burden and to try and ease the burden through a number of strategies.
Early in the evolution of the situation, both the caregiver and loved one need to be consulted and decisions made about the future with regard to later decisions that will have to be made. Caregivers need and must have respite from their duties. It is important to "spell" the caregiver with dependable and regular breaks in service. Whether this is once a day, week or whatever, the caregiver must have time away from the home to revitalize. Identification of other caregivers is critical to avoid the hopelessness of being the "only one." Training in the duties required in this role must be provided by experts in the particular service, for example, Foley catheter maintenance. Social services need to be arranged such as "meals on wheels" if this is desired, or a host of other similar burden relief services that can and should be identified for regular use. (Preparing every meal can be an enormous burden on the caregiver.) Transportation to and from doctors and organization of medical supplies can be enormously helpful. Financial counseling or assistance from other family members can be welcomed and necessary, especially if the caregiver has had no or little experience in managing finances. Most chronic diseases have helpful support groups and there are a number of Internet sources that can assist with long-term care giving recommendations (one such source is www.aplaceformom.com/blog/facts-every-caregiver-needs-to-know/).
The medical establishment needs to play a role in this dynamic. Physicians and their staff must be aware of the toll that care giving has on the patient's loved ones. Questions to the caregiver about their health and advice for them should be a part of every visit. Social services involving social worker visits, home health care nursing and numerous other programs should be discussed with the patient and caregiver frequently. Sooner rather than later, advance directives need to be written and understood about what the desires are should the illness advance to late stages. Assisted living and the role of hospice in care should be discussed and planned early rather than later when it can sometimes become too late for all. It should be the role of the physician and other family members to discuss all this, but often it does not happen as early as it could. It is vital for the caregiver never to feel trapped, alone and without options.
It is estimated that over 40 million Americans are providing the primary home care for a loved one who is dependent on that care daily. This unpaid, stressful work must be acknowledged and a plan devised to assist the caregiver so that person can continue in the role without suffering life altering and shortening health and happiness. Care giving can be rewarding and a loving, noble use of one's time, but the only way this is so is for the burden to be shared and lightened.
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