In the many years of working with caregivers I have found that the caregiver voyage can be divided into four stages: shock, awareness, acceptance, and healing.
The caregiver voyage starts at the time of diagnosis and continues through – and beyond – the death of the loved one. In the first stage of shock, diagnosis and prognosis monopolize the caregiver’s every thought. Countless hours are spent going from one doctor appointment to the next searching for a more accurate or hopeful diagnosis. Denial is paramount in this stage of the caregiver voyage and the caregiver holds onto the hope of waking from a bad dream.
The awareness stage in the caregiver voyage finds the caregiver wrestling with how to tell family and friends and how to respond to their endless questions. Worry about the future is mind consuming and lack of sleep and fatigue are constant caregiver companions. In this stage of the caregiver voyage, thoughts of ‘when will this nightmare end’ and ‘walking away from it all’ are common.
Acceptance is the third stage of the caregiver voyage. It is clear that a miracle is not forthcoming and that life will never be the same again. Feeling emotionally drained and numb is common for the caregiver. Although time may be spent making end of life decisions the need to hold on is overpowering.
The fourth stage in the caregiver voyage is healing and begins with the death of the loved one. The healing stage brings with it a contradiction of feelings: sadness for loss and relief for the end of suffering for the loved one – and the caregiver. Relief of caregiver suffering is held to be socially unacceptable and laden with guilt.
The caregiver voyage of healing can only begin by accepting that the emotions the caregiver is feeling are normal and by taking the time to grieve. It may come as a surprise to some caregivers that the grieving is so intense–after all, shouldn’t it be a happier time now that suffering is over? But grief is normal and essential for healing. There is no short cut through grief; it in itself is the final part of the caregiver voyage.
If you need help navigating these stages of the caregiver voyage, please check out Jennifer FitzPatrick’s new book, Cruising Through Caregiving: Reducing The Stress of Caring For Your Loved One at www.cruisingthroughcaregiving.com (available September 27, 2016).
Mary C. Fridley RN, BSN, BC, VDT®-CT is a member of the Jenerations speakers bureau. She is a Registered Nurse board certified in gerontology with more than 30 years experience in the geriatric health field. She has been a consultant to families, businesses, and care facilities and has an expertise in dementia care. Mary is a successful caregiver advice columnist and former consultant to the Anne Arundel County, MD, Department of Aging and Disabilities, and a caregiver support group facilitator for 17 years. Mary speaks extensively on subjects related to dementia, eldercare, successful aging, and caregiver issues.