Multiple Sclerosis Centers of Excellence
Susan K. Johnson, RN, BSN
Changes in Relationships When Caregiving
Caregiver wellness and burden is something that doesn't get acknowledged very often. Approximately 1/4 of people in the United States who have MS need help with their daily activities or personal care. Most of this care comes from spouses. Care giving can affect couples relationships in a variety of ways. A couple’s partnership may shift gradually into a caregiver/patient relationship, making it very difficult on both people. There may be a gradual erosion of communication which can cause anxiety, guilt, frustration, resentment, and even cognitive impairment. Changes can occur in the sexual relationship whereby sexual intimacy is gradually replaced by the unwanted intimacy of care giving activities. Partners may engage in a contest over who "has it worse," the person with MS or the caregiver who is living with a disease that isn't even theirs.
Some caregivers become confused when thrust into a caregiver role and find it difficult to separate their role as a caregiver from their role as a spouse, lover, or friend. They expect their involvement to have a positive effect on the health and happiness of their loved one and this may be unrealistic for individuals who suffer from progressive diseases such as MS. Many caregivers experience significant stress and burnout that seems to have little to do with the partner's degree of physical impairment or length of time that they've had MS, and more to do with the feeling of feeling trapped.
Caregiver burnout, what is it? Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude from positive and caring--to negative and unconcerned. Burnout can occur when caregivers don't get enough needed help or they try to do more than what they are able to do – physically, mentally, or financially.
Most caregivers are unable to recognize when they are suffering burnout and eventually get to the point where they cannot function effectively. This may lead to abuse and neglect in even the most loving couples. Burnout doesn't happen all at once, it happens in stages, or so-called "phases."
Phase I: The caregiver goes through a "honeymoon" period. They enter the caregiver relationship with idealism and have an eagerness to do well and make changes. But, after 16-18 months the situation becomes more routine and unexpected disappointments can and do occur.
Phase II: Caregivers may have decreased motivation and become less efficient, putting in more hours, but with poor effort and outcome. They may even voice complaints about care giving efforts and their role as a caregiver.
Phase III: Caregivers experience more serious problems, including chronic physical, mental, and behavioral symptoms. Physical signs can include changes in sleep patterns or appetite, illness, physical exhaustion, and loss of interest in activities previously enjoyed. Mental signs can include depression, emotional exhaustion, withdrawal, anxiety, frustration, and resentment. The physical and mental signs can manifest in one's behavior through unpleasant communication and interactions, wishing to get away, drinking, abuse and neglect, and becoming lost in the caregiver role. If these symptoms develop, help should be sought.
There are strategies that a caregiver can use to help facilitate the development of a care partnership in which the needs of both partners are met. Attend to your own health and emotional needs by eating right and getting plenty of exercise and sleep. Be patient with yourself and your loved one. Keep your own identity by taking breaks and allowing time to get away and do your own thing. Facilitate efforts to communicate openly and problem solve jointly. Make your home environment as user friendly and accessible as possible. Take advantage of all assistive technology, it can make life so much easier. You should check with your local VA Medical Center’s Rehabilitation Department where you will find a variety of support services and assistive technology from Physical and Occupational Therapists. It is important to be realistic about your loved one's disease and set realistic goals. That can be easy to say but might be hard to do. If you need help with setting realistic goals you could contact your local VA Medical Center and meet with a Social Worker. They can help you with your plan.
In addition to implementing strategies, there are resources that can help. Join a support group - sharing your feelings and experiences with others in the same situation can help manage stress and reduce feelings of frustration and isolation. Take advantage of respite care services that can provide temporary breaks from your care giving responsibilities. Talk to a professional and ask for help when needed from family and friends. There is a wealth of knowledge on the Internet and magazines are available on MS and caregiving. Educating yourself is very important - the more you know about MS, the more effective you can be in caring for your loved one. There are many resources out there and they are right at your fingertips, make sure you have access to them all.