Psychosocial Consequences of Chronic Disabilities in Families
By: Karen Brewer, Ph.D
While most caregivers experience many of the same stressors associated with caregiving, the type of disability a person has often differentially affects the psychosocial difficulties that his/her caregiver experiences. It is the purpose of this article to describe and discuss the psychological and social problems faced by those who provide care of various types to persons with disabilities.
Progressive Disorders: Persons caring for those with illnesses or conditions that result in progressively worsening disability over time (e.g., Alzheimer’s disease, multiple sclerosis, amyotrophic lateral sclerosis, some cancers), often find the following to be true:
•At each stage of the illness/condition, the family needs to re-organize the way it does things in order to deal with the new level of disability and degree of uncertainty.
•The family cannot ever really “settle in” psychologically at any particular stage because progression looms ahead.
•Family flexibility in role reorganization (e.g., who does what in the family) and the family’s willingness to use outside resources are crucial to the health of the family.
•At some point, the family can come to the end of its physical, emotional, or financial stamina and/or the end of its ability to reform its system.
•If families do become completely overwhelmed and/or exhausted, they may stop functioning or break apart. To survive at that point, they must make significant changes in their lifestyle and/or belief systems.
Constant Disorders: Persons caring for those with illnesses or conditions that result in a relatively constant level of disability over time (e.g., acquired brain injury, stroke, heart attack, spinal cord injury, amputation), often find the following to be true:
•The family is faced with a change in their loved one that is relatively stable and predictable over a considerable time period (perhaps for the rest of the disabled person’s life).
•Families are able to plan for the future with some certainty that future disability will not increase.
•Families may need to adapt to changes in the disabled person’s functional capacity, but usually because the capacity improves rather than declines.
•The potential for family and patient exhaustion is quite high due to constant demand for care needs.
•As with progressive disorders, families dealing with constant disorders must develop flexibility in role reorganization (e.g., who does what in the family) and be willing to use outside resources in order to maintain the health of the family and avoid exhaustion.
Regardless of whether they are caring for a person with a progressive or constant disability, caregivers tend to experience similar emotional responses in their roles as caregivers. The extent to which these emotions become disruptive in the lives of caregivers varies from person to person, but most caregivers report some disruption. This is seen in the fact that caregivers use prescription drugs for depression, anxiety and insomnia two to three times more often than persons in the general population. The emotions common to the caregiving experience include:
Fear/Anxiety: Due to threat of loss of function or independence of their loved one, loss of love of the loved one, and/or loss of financial security.
Grief: Can be mistaken for depression, tends to be time-limited.
Anger: Toward the injured/ill person, toward the person who hurt the loved one (if applicable), toward God, toward oneself.
Depression: Includes helplessness, hopelessness, apathy, dejection, discouragement, and symptoms like changes in sleep or appetite, studies show that 46-59% of caregivers are clinically depressed.
Guilt: The view that the injury/illness is a punishment for previous sins; may especially be experienced if the illness/injury occurred from real or perceived negligence.
Mixed feelings about emotional intimacy: In families where the loved one is significantly changed or is dying, there can be both a desire to maintain intimacy and a pull to let go emotionally.
In addition to the emotional difficulties that caregivers experience, there are also a number of psychosocial changes that occur in the lives of caregivers. These are not the result of emotional dysfunction or mental illness in the caregiver, but rather occur due to the realities of the situations in which caregivers find themselves. These psychosocial changes include:
Increased sense of burden:
•Being a caregiver often takes enormous stamina.
•Some caregivers must confront the reality that the responsibility for the care and well being of their loved one will only end with death— theirs or their loved one’s. This has significant ramifications for manyaspects of the caregiver’s life, including independence, privacy, and retirement plans, to name a few.
Increased financial burden:
•Caregivers will likely have to make changes in their immediate and future plans for the family due to financial stressors because of medical bills or other treatment needs.
Increased relationship burden:
•Marital conflict/divorce is very common in families of chronically disabled persons (e.g., >90% in families of severely brain injured persons).
•The normal evolution of the family can be arrested by chronic disability in a family member because family members may organize their life around the disability or children may delay (or accelerate) appropriate moves toward independence.
Insufficient instrumental support:
•Caregivers may not receive enough assistance in terms of financial resources or help from others to do their job as caregivers adequately.
Attitudes of other people that interfere with caregiving:
•Other people may doubt the severity of or the extent of the illness/injury, creating stress on the caregiver who maintains that the person is truly disabled.
•Conversely, other people may underestimate the injured/ill person’s abilities and therefore fail to support the caregiver who is trying to increase the injured/ill person’s functional capacity.
•Other people may criticize the caregiver’s choices with regard to the injured/ill person.
When faced with the enormous difficulties of caregiving for a disabled person for months or years, caregivers rely on various coping strategies. Typically, these are strategies that they have utilized in other situations in their lives, but these behaviors may become much more accentuated due to the chronicity and/or severity of the stress of caregiving. Although all of these coping strategies “work” for a time at decreasing one’s distress, some of them are ultimately much healthier or much more destructive in the long term. If you are utilizing one of the “destructive” strategies, it is possible to change and begin using a healthier strategy for reducing stress. Some of the more common strategies for coping with stress are listed below:
Destructive Coping Strategies:
Allows individuals to negate the reality of a situation.
May be beneficial in the early stages of adjustment to avoid becoming overwhelmed.
Harmful if continued for long because it prevents people from obtaining appropriate treatment, following good health care advice, and/or learning new coping skills.
Unlike denial, the individual using avoidance accepts the reality of the situation, but because of anxiety, he or she chooses to avoid the situation. Like denial, the individual using avoidance may not seek appropriate medical care or may not follow recommended treatments.
Expressing emotional stress through significantly increased focus on one’s physical symptoms (e.g., headaches, gut responses, increased pain).
Serves to help a person avoid dealing with strong negative feelings and instead, focus on physical problems.
Overemphasis on work, hobbies.
Running away from home (figuratively or literally).
Positive Coping Strategies:
Diversion of feelings: Focus on socially acceptable activities as a means of distracting oneself from negative feelings. I.e. getting involved in patient advocacy, becoming a church or school volunteer, joining a book club, etc. The goal is to find something to do that “gets your mind off” your own troubles for a while but also gives you a sense of productivity, accomplishment, and pride. The activity should ideally allow you to spend time away from your loved one and his/her needs on a regular basis.
Seeking information: Proactive way of coping with illness or injury. Can be very helpful in reducing anxiety as well as providing much- needed information for problem solving.
Utilizing relationship resources: Family/Friends, health care providers, mental health care providers, and support groups
Maintaining good physical health:
•Exercise: Regular exercise is very important to maintaining good health, but many caregivers overlook this important part of their lives. You should look for a type of exercise that you find at least mildly pleasurable (e.g., walking, playing tennis, aerobics class) so you are more likely to stick with it. Finding an exercise partner can also make you more likely to persist in your exercise program.
•Diet: Also vital to good health, one cannot overemphasize the importance of a balanced, healthy diet. See your doctor if you have any diet restrictions or questions about what dietary plan you should be following.
•Sleep: adequate sleep is another important component of maintaining heath that many Americans ignore. Chronic sleep deprivation leads to a number of problems, including memory and attention problems, irritability, and exacerbation of many emotional and physical illnesses. If you are not sleeping adequately, see your doctor.
•Regular medical checkups: probably because of their stress levels, caregivers are more prone to the development of medical problems than the average adult, so they should make sure to get annual checkups to monitor their physical conditions and quickly treat any health problem that arises.
Caregiving is an extremely difficult job and there is no need to struggle through it alone. Regardless of the resources your family has, take the time to find help for yourself and your loved one. If you have difficulty in finding resources, be persistent. They exist out there, even if they are difficult to find. Ask everyone you can think of for assistance, including your loved one’s doctors, your local mental health organizations, and online resources (see resources section).