Many times, the caregiver for a chronically ill patient does not fare as well long-term as the patient.

 

The New England Journal of Medicine reported a study showing that two-thirds of caregivers had significant depression which began when their lives were changed by the illness in a loved one—be it a parent, spouse, or child.

 

Women are much more likely to be the caregivers and in this research 70% of the caregivers were women. Characteristics associated with worse mental health in caregivers include “greater effect of patient care on other activities, less social support, less sense of control over life, and less personal growth.” Interestingly, the illness or severity of disability of the person being cared for didn’t matter nearly as much as the level of disruption in the caregiver’s life.

 

The demographics are remarkable: There are an estimated 44 million adult caregivers in the United States currently. Thirty-six percent of Americans provided unpaid care to someone else in 2012, according to Pew Research Center.

 

There is an anticipated increase in caregivers and caregiver stress for several reasons, among them:

• Our population is aging;
• Illnesses once rapidly fatal can now be treated, thus prolonging life, which requires more care;
• The cost of having non-family or friend care is increasing as there is a shrinking workforce willing and able to do personalized care.

 

Sadly, the stresses of being a caregiver are further compounded by the attitude of society that individuals with chronic illness are a burden on society. The financial burden and disruption associated with illness is significant, with medical costs being either the first or second cause for personal bankruptcy.  

 

The person who is ill also may feel uncomfortable and guilty about being sick and a “burden” on their family and loved ones. Previously healthy, independent, productive people do not typically adjust well to being sick, dependent, and nonproductive. When this defeatist (although understandable) attitude mixes with caregiver stress and society’s dislike of illness, the caregiver becomes the next victim.

 

What can be done to break the cycle and help the caregiver, who in turn can be more effective in caring for the patient with a chronic illness?  

 

The answer, as simple as it sounds, is taking care of the day-to-day needs of the patient and caregiver, having a realistic plan with enough caregivers, recognizing the emotional challenges, providing enough support, and perhaps most importantly communicating among all the team members who provide support. Just knowing this is a team sport with many players—each of whom can help at various times and with different skill sets—will help ameliorate caregiver stress and depression so common among caregivers.

 

Caregiving can also be rewarding and very satisfying. For most caregivers, being there when a loved one needs you is a core value and something you wish to provide.

 

We are all living longer and have more long-term chronic, disabling illnesses. Nationally most people do not have enough resources to sustain themselves for a long retirement even if they are fortunate enough to have good health let alone a chronic illness requiring significant paid assistance.

 

Therefore, family will inevitably end up caring for family. How we arrange these new relationships and how we cope with caregiver stress and depression will determine if we can continue to be successful as a family, community, and nation. Understanding the challenge and responding appropriately will be a continuing stress as we all grow older.