Multiple Sclerosis Centers of Excellence
Susan K. Johnson, RN, BSN -- Portland, OR
Many people with MS need help with their daily activities or personal care. Most of this care comes from spouses or partners. While providing emotional support and physical care to a loved one can be deeply satisfying, caregiving can affect a couple’s relationship in a variety of ways. A couple’s partnership may gradually shift from couple/lover into a caregiver/patient relationship, making it very difficult for both. 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 demands of caregiving 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 a progressive disease 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 feeling ‘trapped’.
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 don’t 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 slowly over time.
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 experience decreased motivation and become less efficient, putting in more hours, but with poor effort and outcome. They may even voice complaints about caregiving 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 learn 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. Maintain 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 together. Make your home environment as user-friendly and accessible as possible. Take advantage of assistive technology. Your local VA Medical Center’s Rehabilitation Department has a variety of support services available, including 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, ask to speak with a VA social worker.
In addition to implementing strategies, there are a number of VA and community resources available to help as well as a MSCoE webpage for MS Caregivers/Partners.
- The VA Caregiver Support website has a wealth of resources for you, including self-care and caring for your Veteran.
- VA Geriatrics and Extended Care has worksheets and handouts for caregivers and Veterans on shared decision-making, well-being and advance care planning, home and community based services, residential settings, and nursing homes.
- VA Coaching Into Care is a VA national telephone service family members and friends can call for support and resources for a Veteran.
- Respite care services can provide temporary breaks from your caregiving responsibilities. Talk to a VA professional about options and ask for help from family and friends.
- Joining a caregiver support group can help you learn to manage stress and reduce feelings of frustration and isolation.
- The National MS Society has a wealth of knowledge on MS, caregiver resources, and support groups. The more you know about MS, the more effective you will be in caring for your loved one.
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