Help for the Caregiver’s Journey: Tips for Times of Special Stress.

Source: OncoLink, Penn Medicine

As a therapist working with family caregivers, I hear often that a caregiver’s responsibility for a loved one can feel akin to a passion project — a heart’s calling, but with a long and daunting to-do list. Some may feel it is socially acceptable to speak of caregiving as a blessing, but hesitate to talk about the strain. Caregiving may come from caring, but also typically imposes heavy physical, mental, and emotional work.

I find that helping caregivers know that they have company, and are part of a community with such mixed experience of blessing and burden, is an important first step to feeling support to do one’s best for a loved one — and oneself.

From personal and clinical experience, I counsel that the caregiving journey is best traveled by sharing collective wisdom to answer these core questions.

What steps can I take to continue to use hired in-home, assisted living, or skill care?

During a community health crisis we may feel concern about our loved one coming into contact with care workers.

During health emergencies such as the COVID-19 outbreak — let alone during each flu season — family caregivers may feel added responsibility to do due diligence to assess the health and safety measures put in place by a home care agency or live-in facility. It helps to know that in-home care, as with live-in facility staff, must follow the same relevant health protection practice as all licensed medical care providers.

The formal resource for protecting dependents — and in-home care workers — in California is stipulated by CAL/OSHA regulations.

How do I manage my loved one’s home care, assisted living, or skilled care manager?

Knowing the Cal/OSHA rules can be informative, but the caregiver’s role is to know who is accountable to follow them. I have learned to help clients prioritize their relationship with the live-in facility or home care agency branch manager. Especially for my clients who are anticipating starting caregiver responsibility, it pays to think ahead — to plan to cultivate close communication with the agency manager who vets, assigns, and oversees your loved one’s home care or regular live-in facility assistant.

My brief survey of home care agencies operating in the San Francisco Bay Area (currently under state orders to “shelter in place” due to COVID-19) finds some variation in the response to the question: “how do you continually assess the health and safety practice of your home care employees?” Some agencies more than others are ready to enumerate these three important steps:

• Daily reports from employees of the health protection steps they take each shift — e.g. when routine activities are purposely altered or cancelled;
• Immediate alerts to managers of any measures that are unintentionally compromised;
• Regular and frequent confirmation from employees that they observe heightened health and safety practices off site during off work hours.

This list helps you focus your discussion with agencies and facilities.

How do I know that my freelance in-home care assistant is protecting my loved one’s health?

For those who hire a freelance in-home care assistant, use the above list, and the Cal/OSHA rules, as the basis for what you require of your employee.

How can I take care of myself?

My clients who are stressed by caregiving often ask how it’s possible to even think of their own needs.

I find that it helps to take stock of what stresses, and what relieves.

Caregiving especially for a family member is documented to create the elements of chronic stress. The work and worry of caregiving cause strain on our body, thoughts, emotions, and moods.

Research has shown that caregiving also frequently creates what we call “secondary stress” — strain that is no less acute but often more difficult to identify in our work and family relationships. The results of studies on caregiver stress are so striking that in fact current research on the health effects of chronic stress are using as a primary test model caregiving and caregivers.

Self-care in particular shows clear benefits. Caregivers who participate in clinical trials of established self-care practices experience reduced stress-related impact on their life and work. Stress-relief practices have been shown to reduce feeling overwhelmed and/or depressed.

Studies show that these practices help caregivers to think more clearly, listen compassionately, sleep better, feel more energetic and with improved appetite, and have improved relationships at home and work.

Self-care practices that work.

• Compassion and self-compassion. We know that kindness towards oneself enables kindness towards others. I counsel caregivers to acknowledge that it may feel selfish to spend time on one’s own needs, but reframe to recognize that even when we take on the role for the needs of another, we are still someone with needs of our own. When we accept that we have needs alongside those whom we care for, we enable ourselves to more effectively move from judging to asking, from controlling to delegating, and from retreating to connecting.
• Mindfulness. Caregiving understandably provokes worry — often these are “what if” thoughts that pull our attention and emotions away from connecting to our loved one in the present moment. Caregivers who need to see and solve needs help themselves by becoming attuned to a dependent loved one in each moment. Useful practices (guided or self-directed) to enhance mindfulness include:
• Breath awareness
• Positive Imagery visualization
• Body Scan
• Meditative and deep relaxation techniques
• Movement-based practices such as yoga, tai chi, stretching.
• Forgiveness. To forgive or let go of any day in one’s caregiving journey enables us to start each day anew. Caregivers especially benefit from forgiving oneself for human imperfection. In addition, emerging research points to the benefits of approaching interpersonal relationships — which may include caregiver-dependent relations — with thoughts of letting go of past hurts. Professor Frederic Luskin (Stanford University), director of the Stanford Forgiveness project, spoke on this insight in his keynote address at the Avenidas Caregiver conference “The Road to Resilience: Helping Families Thrive!”
• Healthful routines have been shown to enable caregivers to return to their responsibilities with effectiveness, and more patience, energy, and even creativity. Such healthful practice includes maintaining — often recovering — in one’s daily routine well-balanced meals, moderation of alcohol consumption, regular exercise, and sleep hygiene for restorative rest.
• Social connection is the act of self-care from which we can most readily feel the benefit. It may feel especially hard to take time to connect to friends, but even brief meet-ups for tea and talk make us feel less isolated in our caregiving journey.

Who can help me as a caregiver?

Connecting is especially possible in the increasing variety of caregiver support networks, including:

Avenidas Without Walls: provides community in physical and now increasingly virtual space. Avenidas is a pioneer in the neighborhood “village” movement to help seniors who chose to age in place connect with each other. The “Avenidas Without Walls” initiative offers supportive and informative interactive programming run by dedicated staff who are attuned to the needs of seniors and caregivers who seek community even during times when health needs impose challenges and “social distancing.”

Family Caregiver Alliance: provides helpful, reliable, and comprehensive information and support via live and interactive webinars, and updated resource links on the wide range of personal, interpersonal, emotional, legal, and logistical issues that are part of the caregiving journey.

Published sources abound: two reliable and accessible handbooks are —

Care-giver’s handbook: A Guide to Care for the Ill, Elderly, Disabled, and Yourself. (Harvard Health Publishing, 2019)

How to Care for Aging Parents: A One-stop Resource for all your Medical, Financial, Housing, and Emotional issues. (Workman Publishing Company, 2014)

How can I help a caregiving friend or co-worker?

For someone who seeks to support a caregiver, it can initially fall on deaf ears to simply urge him or her to “take care of yourself.” For caregivers, many are by choice or by circumstance solely in charge of their loved one’s well-being. Telling someone to delegate caregiving responsibility can be akin to telling someone in acute distress: “It’ll be ok!” Saying this typically provokes a response — spoken or unspoken: “Easy for you to say — you don’t know how I’m worried what will happen if I ever let down my vigiliance.”

I’ve learned to address this topic with extra care, taking the extra step to first acknowledge a caregiver’s potentially deeply ingrained feeling of responsibility, and acute sense of urgency. It typically helps to acknowledge to a caregiver that it may feel as if there is no time or mental space to focus on anyone’s needs besides those of the dependent. When a caregiver feels understood, for how deeply they worry, then from a position of alliance we can help reframe assumptions.

Asking what’s possible, more than telling what’s needed, is frequently productive to enable the caregiver him or herself seek support, enlist other family members, and share their story with a facilitated community of caregivers who pool insights.

We can, by means of such alignment and reframing, help a caregiver under stress see from more angles thoughts and assumptions, and consider how self-care can help them help others.