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Written by: Mary Brintnall-Peterson, Ph.D., MBP Consulting, LLC, Professor Emeritus, UW-Extension & Caregiver.

(First article in a four-part series on ‘Staying Positive’ as a caregiver.)

As a caregiver, I am sure you have heard the statement—”Stay Positive” a million times. You’ve been told having a positive attitude will help keep the care receiver upbeat and that positive attitude enhances their chances of healing. But the reality is that it is difficult to stay positive when you are hit continually with bad medical reports, issues with insurance, Coronavirus pandemic restrictions, family dynamics, etc. The fact is, being an encouraging, optimistic, and positive caregiver isn’t easy!

Since I’ve been caring for my adult son who has colon cancer, I have tried to be positive and have done pretty good, but I have had bad days.  I know the importance of being positive as I touted the message of being positive when teaching caregiver classes. Now that I am living the life of a caregiver, I want to dig deeper into why it is important to be positive. I want to know how my body reacts to being positive and what strategies could be used or developed to maintain a positive attitude. I am sharing what I learned in a four-part series on staying positive as a caregiver.

The four articles are:

  1. Staying Positive: The Link Between Being Positive and Stress
    How our caregiving stress hinders being positive and maintaining a positive attitude.
  2. Staying Positive: How Our Bodies React to Stress
    Identifies differences in how our body reacts to stress versus positive thinking and a positive attitude.
  3. Staying Positive: Action Strategies to Help Caregivers Stay Positive
    Positive building strategies that can be added to your caregiver toolbox that involve others or require an action.
  4. Staying Positive: Internally Focused Strategies to Help Caregivers Stay Positive
    More positive building strategies that require self-reflection, learning new skills and are more internally focused.

I hope you find this series helpful. Personally, I’ve learned a lot about myself, stress, my body’s reaction to stress and ways to help me maintain a positive attitude.

Research on Benefits of Caregiving

Regardless of how stressed caregivers get, they always report how beneficial being a caregiver has been to them and how it has enriched their lives. Research verifies that caregivers gain positive experiences from caring for someone else. They report that the satisfaction of knowing their care receiver is getting excellent care plus they feel a sense of purpose and meaning.  If they are caring for parents, they feel a sense of giving back to someone who cared for them. Caregivers mention gains from their caregiving experiences as they learn about themselves and the care receiver’s condition, illness or disease.

As I care for my son, I have personally experienced numerous benefits.  I am honored to care for him and to be a part of his cancer journey.  I know he is getting great care which he appreciates. I enjoy hearing my son’s adventures in life as he is a great storyteller and his life motto is to live life, so he has lots stories to tell. We have discussed politics, past and current events, religion, TV series and shows and everything under the sun.  If I hadn’t been caring for him, I would have never heard some of his stories.  I value our new relationship as it’s stronger and deeper than it was in the past. We have had our ups and downs but have been able to work through them, which makes our relationship even stronger.

I am learning more about myself as a person, my strength, and my ability to do things (especially nursing tasks) I never thought I was capable of doing. I have become much more sensitive to others and their situations.  I find myself needing to reach out more to those who are ill, hurting, or need support. I’ve become more understanding of individuals with various health conditions. I have learned about colon cancer and the cancer world as it has its’ own vocabulary, treatments, medicines, alternative treatments, side effects, health care system, insurance processes and much more.  Even though this caregiving journey has had numerous trials and tribulations and at times I feel overwhelmed and stressed out, I work at staying positive as much as possible.

Even with the positive aspects of being a caregiver it is impossible to be upbeat all the time. At times I’m stressed, frustrated, angry and wonder exactly how this stress is hindering my ability to be positive.

Relationship Between Staying Positive & Stress

In the literature, there appears to be a link between being positive and avoiding stress. Stress is our body’s physical and mental responses to life experiences whether they are real or imagined. It comes from both happy situations/events (weddings, birthday parties, celebrations, a new baby, etc.) and sad situations/events (illness, death, being frightened or threatened, job loss, worry, etc.). Generally, stress isn’t a problem as it’s our bodies way of protecting us.  When we experience stress (good or bad) our bodies release stress hormones (adrenaline and cortisol) which start the “fight-or-flight” response mode.  Our heart races, breath quickens, and muscles prepare for action.  This stress response helps us stay focused, provides energy, and we become alert, so we have extra strength to defend ourselves or to respond quickly.  This helps us grab a child out of harm’s way, move quickly to catch something that has dropped, or run to the bedside of our care receiver when they call. But too much stress can become harmful to our bodies. If our body continues to be on high alert and sustains a state of chronic stress, we become irritable, anxious, depressed, overwhelmed, and frazzled. You may experience headaches and have trouble sleeping. Stress also contributes to other health issues such as high blood pressure, obesity, depression and more.  As caregivers, we need to watch our body for signs of chronic stress so we can intervene before we become ill.

Data about Caregiver Stress

As caregivers we know we have stress but sometimes it’s helpful to know we are not the only one experiencing stress. You have heard the statement—Misery loves company.

In the newly released Caregiving in the U.S. 2020 Report (AARP and National Alliance for Caregiving, 2020) caregivers reported the following:

  • Their health declined during the past five years, yet the general population’s health did not decline. In 2015 17% of the surveyed caregivers reported their health as fair or poor compared to 21% in 2020.
  • Nearly one in four caregivers (23%) reported they have difficulty caring for their own health.
  • Of the caregivers who expressed difficulty in caring for themselves:
    • 70% had emotional stress.
    • 38% had high physical strain
    • 36% had high financial strain
    • 72% had no choice in taking on care
  • Caregivers are more likely to experience emotional stress if they are: younger, a woman, Asian American, caring for a relative, feeling alone, providing high intensity care, providing more than 21 hours of care a week and/or has provided care for over a year.

As you can see, caregiving is stressful with four in ten caregivers or 36% describing their caregiving as highly stressful.  An additional 28% report moderate stress as a caregiver with only 16% reporting having no stress at all.

What Causes Stress in Caregivers?

Caregiving ranges from caring for someone after surgery which might be for several days, to caring for someone with cancer, post-traumatic stress disorder, Alzheimer’s disease, burns, wounds or other chronic health conditions for years. Caregivers need to be aware of caregiver burnout which is a condition that occurs when stress is continual with emotional, mental and physical exhaustion.  Caregiver stress can also be related to how you feel about being a caregiver, your past and current relationship with the care receiver, and how caregiving is impacting your life.

Caregiver stress and burnout is a common experience for caregivers, so we need to listen to our bodies which are designed to tell us when we are under stress. Watch for things that are new to you (i.e. headaches, stomach problems, etc.) or not typical for you.  Some examples that might not be typical for you could include irritability, sleeplessness, chronic fatigue, getting sick more often and being down or sad for an extended period of time.  Having any of these or other atypical physical or mental reactions could mean you are experiencing stress.  Family or friends are sometimes first to notice us acting differently and might say something.  Listen to them and take time to examine if you are being stressed so you can deal with it before you become ill.

In order to stay positive, it is imperative we understand what stress is, how our bodies react to stress and have a willingness to be on the lookout for it on a daily basis. The first step in staying positive is addressing stress. The second article in the staying positive as a caregiver series explores how our body physically reacts to stress.

References

AARP and National Alliance for Caregiving. (2020). Caregiving in the United States. Washington, DC: AARP. Retrieved June 2, 2020.

Segal, J. S., Segal, R., & Robertson, L. (2020, May). HelpGuide. Retrieved June 6, 2020, from Stress Symptoms, Signs, and Causes

Smith, M. (2019, October). Caregiver Stress and Burnout. Retrieved June 13, 2020, from HelpGuide.