Are You Feeling Helpless as a Caregiver?

Worried woman sitting on floor next to bed

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

(First article in three-part series on caregiver helplessness.)

I don’t know about you, but there have been many times when I felt helpless as a caregiver, especially during the past 18 months as I care for my adult son, with colon cancer. As his caregiver I have a front row seat to see him in severe pain, his reactions to bad news from tests or treatments, and his frustration when he isn’t able to do what he did before cancer. These eyes witness experiences that leave me feeling helpless and at a loss for what to say or do.  Each time I listen, cry with him and wish there was something more I could do to make it better. I just feel helpless and at a loss!

Knowing I can’t be the only caregiver having feelings of helplessness, I decided to research the topic to better understand the emotions associated with helplessness and to garner coping strategies.  During my exploration process, I was surprised at what I found and didn’t realize how the emotion of helplessness can hinder the caregiver and care receiver. First off, the literature is divided into three types of helplessness, so I’ll be addressing each one separately in a helplessness series.

  1. Are you feeling helpless as a Caregiver? The first article discusses the emotions and physical distress a caregiver experiences when there is nothing, they can do to change the situation of their care receiver.
  2. Are you making your care receiver feel helpless? The second article discusses how caregivers enable their care receiver making them dependent and possibility feeling helpless.
  3. What is “learned helplessness?” The third article discusses a condition in which caregivers and care receivers learn to be helpless when exposed to stressful situations repeatedly.

Caregiver stress has been studied for years with unanimous agreement that caregiving is stressful! The stress comes from a variety of sources.  These include the physical labor of providing care such as bathing, feeding, toileting, etc. and/or from the emotional aspects of caregiving. Emotional reactions include guilt, frustration, anger, denial, worry, regret, happiness, joy, love, etc.  Helplessness can surface when the caregiver witnesses the care receiver in physical and/or psychological pain. The caregiver’s health can be affected resulting in depression, anxiety, moodiness and changes in their physical health.  In fact, the care receiver’s pain intensity was the strongest predictor of caregiver depression. The bottom line for all of this is that, as caregivers we need to be aware of when we feel helpless and to monitor our reactions. This is especially critical if you are feeling helpless every day.

Exploring Feelings of Helplessness

I take some comfort in knowing that my feelings of helplessness are confirmed by researchers, but didn’t realize the ramifications if I don’t address them. I found the following suggestions helpful to me and hope they will be helpful to you, as you explore your feelings of helplessness.

  1. Monitor my reactions to my son’s pain and other stresses. Research suggests that caregivers who remain positive and who regulate their feelings in response to stressful situations do better than those who are negative and don’t monitor their feelings. This means I need to be aware of my reactions—what emotions am I feeling? What did I do while having these emotions and afterwards? Was my reaction positive or negative? What did I do with those emotions (express or hide)? How long was I stressed? This isn’t easy but I have found that the more I watched and listened to my body the easier it was to monitor myself.
  2. Use problem solving skills to see the when, what, and how of my son’s pain. With this information, are there things that can be done to avoid or decrease his distress? This could be as simple as, getting his pain medication, rubbing his leg, keeping track of when pain occurs or helping him get in a comfortable lying position. Next, realize that the pain is not going to stop and are there things you can do to distract him. Maybe playing a game, making sure the pain meds are taken on a schedule, taking a walk, talking about a topic he is passionate about, or watching a movie together.
  3. Keep telling myself that I can not change the diagnosis of my son’s cancer and I can not make it go away (boy do I wish I could). But I CAN learn to work with my son’s condition and be the best caregiver I can be.
  4. When I am experiencing helplessness, I try to be in the moment. Focus on what my son needs from me (sometimes that is being quiet) and to be positive (not a Pollyanna) yet realistic. Again, realize I can not do anything to change what is happening, but I can be with my son while it’s happening. I try to cherish that I am with him and share in these moments together.
  5. Seek help from others (friends, family, doctors, professionals, faith leaders, etc.). Sometimes, involving others to gain their perspective on the helplessness you experience is wise. This was illustrated to me when we got bad news about my son’s condition and a day later a doctor, who had witnessed our helpless reactions, sat us down, and helped us see the situation in a different way. It didn’t take away the fact that I was feeling helpless, but it helped me put it in perspective. He helped me find ways to take some of the negative thoughts and feelings away!
  6. Gain knowledge about the situation you feel helpless about. Knowledge is understanding and helps in knowing what is realistic and what to expect in the future. Granted this could increase feelings of helplessness, but it can help you realize you can not change the illness or situation but you can learn to deal with it.
  7. Recognize that depression is a possibility. Depression is an illness that can be treated and is common among caregivers. Watch for signs that you have loss interest in things that you had enjoyed in the past, sleeping problems, feeling sad, or feelings of wanting to hurt yourself. With any of these signs, consult with your doctor. Getting help is how you continue to be the best caregiver you can be.
  8. Explore ways to calm yourself. Mindfulness, breathing techniques, walking in nature, spiritual prayer or other strategies can be helpful to calm your mind, relieve stress and focus on you.

In closing, helplessness is a reality caregivers experience as we see our loved ones in pain and suffering. As a caregiver it is natural for us to want to do something when we feel helpless.  The best thing we can do for ourselves and our care receiver is to monitor our emotions, explore what can and can’t be done during those times, remain as positive as possible and realize you are doing the absolute best you can! Just being there with your loved one is what’s most important as you support them through their journey.

References

Blanchard, C. G. (1997, February 1). The Crisis of Cancer: Psychological Impact on Family Caregivers. Retrieved May 9, 2020, from Oncology Journal:.

Davis, J. L. (2003, May 13). Caregivers Feel Helpless, Need Help. Retrieved May 15, 2020, from ebMD.

Denholm, D. B. (2012, August 12). When Caregivers Care Too Much. Retrieved May 9, 2020, from Psychology Today.

Ghose, M. (2013, January 30). When it Comes to Caretaking and Helplessness, Enabling is Disabling. Retrieved May 14, 2020, from Good Therapy.

Joan K. Monin, R. S. (2009, September). Interpersonal Effects of Suffering in Older Adult Caregiving Relationships. Retrieved May 14, 2021, from National Institute of Health.

Swartz, A. (2017, September 25). Caregiving with Confidence: The Dangers of Caring Too Much. Retrieved May 9, 2020, from Cancer Today.