Introduction

For five years, ending in 2005, I worked as a family caregiving consultant for the Alzheimer’s Association and, more recently, for Del Mar Caregiver Resource Center, a state-supported nonprofit sponsored by Health Projects Center in Santa Cruz, CA. My duties remained the same in both agencies: to provide support for people taking care of an adult family member with neurological impairment through one-on-one consultation, support groups, workshops and special programs. Alzheimer’s Disease was the most common ailment but we also commonly met with families coping with Parkinson’s Disease, stroke, MS, ALS, Huntington’s Disease, traumatic brain injuries, and a number of other lesser known but equally traumatic dementia-causing illnesses.

While there were specific issues related to each disease the impact on the families was surprisingly similar: one or more people became the primary caregiver for a person who didn’t get better or progressively needed more help and care. In the case of age-related dementias such as Alzheimer’s Disease, Parkinson’s Disease and stroke the person would eventually need 24-hour care and, unless that care was divided among several family members or provided by professionals, somebody close to the patient would pay an extraordinarily high price.

In the not too distant past people tended to live in extended family groups and small interrelated communities where women could expect to be taken care of while they stayed at home and took care of the family unit. Today, people are more likely to live in isolated family units and, because of sky-rocketing divorce rates, those units are headed by a single parent more than ever before. Furthermore, families are smaller than they used to be, adult children often move away to other parts of the country, and women not only want to work outside the home, they frequently have to do so to make ends meet. That means families have far fewer people available to take care of sick and elderly loved ones at a time when advances in medical technology and healthcare keep people alive years longer with debilitating conditions they would have died from in the past. Too often the money to pay for services runs out long before the patient’s body and both the know-how and the ability to provide adequate levels of long-term care is often sorely lacking.

The vast majority of people take the job on without using help and services outside the family at all. After all, it’s family! We’re trained to think that, despite the changes our society has created, that we’re supposed to do it all without help and without complaint. Families take care of their own! The toll this takes is enormous. According to the Journal of the American Medical Association, among people who are 65 and older, those who are caregiving have a 63% higher mortality rate than those who are not caregiving. Caregivers of all ages report deteriorating health and high rates of depression and frequently find it challenging to take time for and pay for their own care due to the economic burden this situation creates.
There were many days in my work with family caregivers when I wondered how they did it at all. The answer became clear over time: they can’t do it alone. The successful ones ask for help and they find it in each other, in other family members, by using social services, paying for services, joining support groups, joining online communities of support, in books, and through prayer and spiritual sources of support. Preferably, all of the above.

The spiritual part was a surprise to me. Everyone needed physical help on their caregiving journey but those who were also buoyed up emotionally through their relationship with God or those who saw their caregiving as a spiritual journey (even if they had no specific religious affiliation) held on and even flourished in the most difficult situations I ever saw. They were more likely to see their caregiving as an opportunity to be of spiritual service and rallied to the task in ways caregivers in much easier situations sometimes could not.

In time I saw that the spiritual path of family caregiving involved a willingness to go out the door metaphorically speaking. To go beyond one’s limited personal perspective, to see beyond the horrors and trials and tribulations of the path, and to expect that the rewards and value in what one had taken on meant so much more than clinging desperately to the past and trying to keep the status quo intact. Change is inevitable when someone has a deteriorating physical or mental condition. One has to stay in the present moment, be with what is, and be open to solutions one would not have previously anticipated. Sometimes the worst things people feared led to the best possible outcomes.

The previous blog entry was an excerpt from the Introduction of my latest book, The Spiritual Journey of Family Caregiving. Buy Now from Healing Communication Press at Lulu.com. Thanks!