By Pamela D. Wilson, CSA, MS, BS/BA, CG
Caregiving is more often than not an unexpected event. Many caregivers have a daily routine caring for a loved one. Some caregivers continue working; some stay at home to caregive. Most important is the caregiver’s ability for self-care including attending to healthcare and medical needs. Care-receiving is also an unexpected and unwelcome event; who wants to admit that he or she needs care?
Caregiving for a loved one is stressful and the physical and emotional effects longstanding. Caregivers experience anxiety, depression, declines in health, and a number of other conditions as the result of the role of caregiving. If you find the effects of caregiving difficult to believe the example I share is Christopher Reeve and his wife Dana. Christopher was injured in a horseback riding accident and was cared for by his devoted wife and family for many years. After Christopher passed in October 2004, his wife, Dana, was diagnosed with lung cancer the following August—never having smoked a cigarette. Dana passed away in March of 2006.
What happens to caregivers who already have chronic diseases including a prior diagnosis of cancer? Should individuals already diagnosed with a chronic disease be more cautious about their health when caring for another person?
(insert subscribe option here)
I recently consulted with a wife who had knee replacement surgery only to learn at the time of surgery that her breast cancer returned; the only treatment available was palliative chemotherapy. The wife came to me because she was the caregiver for her husband diagnosed with Alzheimer’s disease and she wanted to make a long term plan for his care.
After receiving the news that her cancer had returned the plan changed from being her husband’s long-term caregiver to planning for her husband’s care without her in his life and making plans for her own care. It was evident that the stress of caring for a loved one with Alzheimer’s disease was taking its toll on my client in addition to the emotional stress of learning about a terminal diagnosis of cancer with a defined time limit. For this couple the experience of being diagnosed with cancer and the role of caregiving and care-receiving posed similar but sometimes opposite experiences.
The many effects of caregiving—while often not immediately life threatening—have much in common with the effects of a cancer diagnosis and treatment. Individuals with cancer experience declines in health, episodes of anxiety, fatigue, loss of appetite and body changes, sleep problems, confusion and feelings of overwhelm, anger, and sadness.
My discussion with this woman revolved around practical considerations for bill paying and identifying a companion for her husband’s safety as well as a caregiver to provide general support on days she would not be feeling well after chemotherapy treatments. Even more practical discussions were held about his and her end of life care, legally responsible parties to serve as medical and financial power of attorney, cremation plans, and how to discuss her advancing condition with a husband diagnosed with Alzheimer’s disease who likely would not understand.
The options of receiving in home care versus moving to a care community where her husband might adjust and make new acquaintances that would support him after her death was a timely and important subject. At least she would be comforted to know where her husband would live and who would provide for his care after her passing. Caregiving is challenging when one person requires care, however when both spouses require care and the death of one spouse is imminent the challenges seem to rapidly multiply.
Some spouses are unable to have these all important discussions and are at a loss to make plans. This emotional distress results in overwhelm that makes planning difficult; many individuals in these situations feel immobilized. Children may or may not be supportive or available depending on proximity to parents and the hustle and busyness of their own lives.
In the case of this couple, the husband was the one who managed the finances and was now experiencing an inability to organize and comprehend the documents that arrived in the mail. Agreeing to allow his wife to act in the role of financial manager was damaging to the husband’s self-esteem and he struggled with comprehending that he was no longer able to complete this activity with the ease experienced prior to his diagnosis of Alzheimer’s disease.
Years ago, I became the guardian for a woman whose husband died from cancer and failed to make plans for her care, assuming that somehow, someone would care for her after his death. Through the court system I was appointed to be the person who coordinated and made certain that she received care. Fortunately her husband did leave sufficient financial resources to support his wife’s care in the lifestyle they were accustomed to prior to his passing.
I imagine that the last several months of his life were overwhelming, attempting to care for his wife and for himself. There were no in home caregivers at the time that I became involved and I can only assume that due to his health and the corresponding pain and symptoms that making it through a single day was considered a success.
For cancer patients, discussion of managing pain and symptoms through practical methods of medications and alternative treatments like massage, relaxation, and other techniques is important. Many caregivers, not facing a terminal diagnoses, experience anxiety: feelings of being tense or nervous, a rapid heartbeat, sweating, sudden feelings of doom, trouble breathing and butterflies or nervousness in the stomach. Individuals with cancer often experience anxiety. Medication, exercise and self-care are mandatory for both the care recipient and the care receiver.
Fatigue is a common among individuals diagnosed with cancer as well as caregivers working 24 hours a day 7 days a week to care for loved ones. Monitoring nutrition, planning daily activities and identifying others to help is important to managing care situations. Naps are also beneficial but not too much so that that one is awake all night. Caregivers often sleep lightly as they are listening for their loved one to wake from a sound sleep. Individuals with cancer and other medical concerns often have trouble falling asleep, wake up and are unable to fall back asleep and sleep for short periods of time.
Loss of appetite and changes in the body are common: weight loss, weight gain, constipation, nausea and vomiting affect individuals diagnosed with cancer. How comforting might it be to have an individual to help with the practicalities of grocery shopping and preparation of meals to support a topsy-turvy stomach? Caregivers also experience similar events as the result of caregiver stress and exhaustion.
Confusion, memory loss, and an inability to focus are also common to caregiver and individuals experiencing cancer. Being a care recipient and a caregiver has similar stressors of different natures. Care recipients worry about their own health and well-being as well as sometimes feeling that their care might be a burden for family members. Caregivers worry about loved ones and mourn the loss of free time, spending time with friends, and dream of living a life without so many complications and daily responsibilities.
Cancer and other chronic and life threatening diseases change the life of individuals seemingly overnight and result in the role of care receiver. These life changing events also result in the role of caregiver. It is important to understand that the effects of conditions leading to a need for care are similar to the experiences of caregivers caring for a loved one. In both roles compassion, understanding, patience, and grace support positive relationships and allow individuals to make practical plans for care needs today and in the future.
Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM. In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, will be available on October 6, 2015 through all major bookstores as well as on PamelaDWilson.com. You can find her on YouTube, Facebook, Twitter, and Linked In.