In management of a chronic disease, the burden on the caregiver is great, and there are physical and emotional costs to the caregiver.  The patient is not the only one who needs to be watched and taken care of. 

A diagnosis of kidney disease brings with it potentially life-altering consequences – both for the individual who is ill and those who care for him or her.   

People in the latter stages of kidney disease need a great deal of support to manage their illness as well as to take on the tasks of daily living they can no longer perform.  Unfortunately, our health care system hasn't adjusted to serve the needs of the growing number of the chronically ill in America.  Our health care model is primarily geared towards treating people with acute episodes – not people with long-term health needs and recurring problems. Family and friends are called on to fill the gap. More often than not, these caregivers are untrained and under-supported.  They've been described as a "shadow workforce," taking on the roles of case managers, medical record keepers, paramedics and patient advocates.

It's a challenging scenario.  On one hand, caregiving can be uniquely satisfying.  Feelings of unconditional love and profound bonding can be a part of the experience.  There can be personal growth through setting new priorities, discovering strengths you didn't know you possessed, and getting better at accepting life as it unfolds.  Conversely, the journey can be fraught with frustration, self doubt, loneliness and grief.  Bottom line, it takes a great deal of personal determination to be a caregiver. 

No one comes to the experience of dealing with chronic illness prepared for what lies ahead.  Caregivers often find themselves scrambling to cope with a long litany of tasks – dealing with doctors and insurance companies, finding appropriate and affordable resources, and simply attending to normal, everyday tasks.  The caregiver's learning curve is steep.  They have to absorb in-depth information about their loved one's disease so they can help evaluate different treatment alternatives, make sure doctor's orders are properly followed, and recognize complications if they occur.  They often need to learn actual healthcare skills – keeping wounds clean, giving medications, and monitoring blood pressure and blood sugar levels.  It's common for them to feel constant conflict between job responsibilities and giving care.  Some caregivers are forced to take a leave from work or retire early, adding to their stress with increased financial concerns.    

The energies of the caregiver can become totally absorbed by their loved one's illness.  Many caregivers try to provide care single-handedly and end up neglecting their own needs. It's not uncommon for them to think that their life has to come second to the needs of their loved one.  Yet, in additional to an overwhelming volume of things to be done, they also have to come to terms with the sacrifices they're making –  the loss of the fullness of their personal relationship with the ill person plus the life choices they are no longer free to make – and their own emotions.  Family members feel the same shock, fear, anger, sadness and loss as the person who is ill.  They are the witnesses to their loved ones' physical and emotional deterioration.  

Chronic stress without relief can lead to both physical and emotional problems.  Research shows that caregivers:

• Are more likely to be have symptoms of depression or anxiety
• Are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
• Have higher levels of stress hormones
• Spend more days sick with an infectious disease
• Have a weaker immune response to the influenza (flu) vaccine
• Have slower wound healing
• Have higher levels of obesity
• May be at higher risk for mental decline, including problems with memory and ability to concentrate

A study of caregivers published in a 1999 issue of the Journal of the American Medical Association reported that elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

The irony is that the well-being of the patient depends on the well-being of the caregiver.   By neglecting themselves, caregivers put their loved one in danger of losing their most important support person.  To evaluate your level of caregiving stress, take a simple test from the PBS Caregiver's Handbook (part of the web site for the 90-minute program Caring for Your Parents).  Go to Caregiver Self-Assessment Questionnaire (PDF).

If you find you have a number of symptoms associated with high levels of physical and emotional stress, contact your primary care doctor for an appointment, take the questionnaire with you, and discuss next steps, such as finding a therapist or support group, or taking medication. 

For more information on the challenges of caregiving and how to cope with them, go to Second Opinion, Caregiver Burnout (Episode 507) or Second Opinion, Alzheimer's Disease (Episode 505) 

Learn more about Kidney Disease:

Key Point 2:  When dealing with end-stage chronic disease, the decisions for and against interventions can be agonizing to make and to live with.  It is important that open communication results in all options getting weighed.