What is the “coping” phase of caregiving?
After the “awareness” phase of caregiving — experiencing that jet lag, so to speak, the next phase of caregiving is coping; rather like feeling alone in a “strange country.”
The isolation that accompanies the Alzheimer’s journey is difficult. Caregivers feel like invisible beings. According to a study published in Frontiers in Psychology (2017), social isolation can lead to depression, memory and attention problems, heart disease, high blood pressure and stroke. And, notably, caregivers and their loved ones were deeply affected by the quarantine during the COVID-19 lockdown, much to their detriment.
This coping phase of the caregiving journey finds the caregiver in a “strange” arena of social isolation. Jill Gafner Livingston, author of “Personal Positioning for Caregivers,” notes in her seminars, “caregiver isolation isn’t about being stuck in the house or not having free time. It’s personal. It’s internal. The soul of the caregiver is sad and there are so many emotions, guilt being the primary one.” She suggests breaking the chain of isolation and negative internal feelings by inviting friends over to socialize, starting the day with encouraging thoughts, saying something positive to a stranger you meet, avoiding negative self-talk and seeking support from other caregivers. The lack of meaningful experiences that are uplifting for the caregiver can lead to diminishing self-worth or even the desire to be engaged, which in turn, can lead to caregiving that is apathetic and resentful.
To help cope with this “aloneness” in the unknown Alzheimer’s journey, caregivers should strive to better understand the reality of their own expectations. Often set too high, with perfection as a goal, unrealistic expectations can leave caregivers exhausted, frustrated and depressed. For example, the caregiver’s home doesn’t have to be immaculately cleaned and organized all the time, and it’s OK if their loved one left home for an appointment in mismatched socks. Achieving a sense of balance and acceptance and appreciating little successes can make the caregivers more comfortable and ease the stress of caring for their loved ones. Further, learning more about Alzheimer’s disease, especially how to manage communication and behavioral strategies, can give caregivers confidence and self-assurance to cope with the daily challenges in the care of their loved ones.
The caregiver in this coping stage has developed a resignation to this new routine, but is reaching out for help, trying to adjust even if not sure how. More attention is paid to caregiver’s needs, sometimes due to stress levels peaking and taking a toll on the caregiver’s health. During this coping phase, it is crucial for the caregiver to build and utilize a care team to support and sustain them. Additionally, having a sense of hope provides encouragement and strength to maintain a quality of life and cultivates well-being for the caregiver and his or her loved one. Learning to manage the demands of caregiving, while also enjoying pleasurable activities together, reminiscing and remaining flexible are all ways the caregiver can travel through this “coping” phase of caregiving.
