“The impact on our lives is much different now that we know it’s a disability. It’s the loss of dreams, the things we had hoped to do in retirement. But once you give that up, you can start looking for another life.”
Director of Caregivers, U.S. Pain Foundation
For over six years, I have been my wife, Ellen’s, primary caregiver. Ellen suffers from two incurable conditions, which at times, have proven to be both disabling and life-threatening. Combining my personal experiences with outside knowledge on this topic, I have discovered __ insights on how to be an effective caregiver.
I know every situation is different, and that what I deal with on a daily basis may be the complete opposite from you. However, I am convinced that there are a number of common themes and concepts pertaining to all of us caregivers.
The most critical issue for a patient with a chronic medical condition may be acceptance of the inevitable changes that their medical condition has imposed upon them. Just as important, is for the caregiver to accept these same changes. Both of your lives have dramatically altered. I want to note that acceptance does not mean resignation or surrendering. Instead, it means facing the inevitable limitations. By, accepting the need for change, both you and your loved one can move forward more readily, exploring alternatives. This is not an easy feat, but without some form of acknowledgement, it becomes almost impossible to journey down this caregiving path without total anger, despair, and possibly, resentment.
Ellen was forced to retire early, and I retired at the time of her diagnosis. All of the plans we had for retirement were immediately, and permanently, altered. Yet besides losing the career she loved, Ellen’s new physical limitations meant she could no longer participate in many of the activities she enjoyed like swimming (she was a master swimmer), gardening and, at times, even reading. To be an effective caregiver, you must find healthy ways to support your loved one during this emotionally trying period as the once unimaginable becomes a reality. Again, accepting these new limitations does not mean to surrender. I chose to see is as a “call to arms.”
The next barrier is finding relief. Unfortunately, despite the best treatment care, some patients may be unable to eliminate the majority of his or her pain. Formulating a new plan to manage pain with a variety of treatments (conventional and complementary) becomes crucial. Again, it is accepting the current state so you can move forward looking for new options that enable the one you care for to find meaning in life through productive activity and positive relationships.
Just as the patient needs to learn effective pain management tools, the caregiver must also learn to manage his or her emotions in such a way that he or she does not run the risk of becoming a victim of those very intense emotions that inevitably accompany the caregiving experience. Failing to develop mechanisms to cope with the stresses, fears and loss that accompany the role of caregiver can prove detrimental in your ability to remain effective in providing long-term support and care for an individual with a chronic condition.
Once Ellen and I were able to acknowledge (and accept) the changes in our lives, we then had to honestly examine our new roles and what we would have to undertake. Again, acceptance of the situation did not mean we surrendered. We chose to attempt to find productive activities to fill the void created by the comprehensive losses we had suffered.
The very process of attempting to take such a personal tragedy and re-create one’s life into a new journey can in itself add to the emotional demands of both the patient and the involved caregiver. It is not simple or easy to redefine ones’ lifestyle and goals, especially when simultaneously confronting the process of aging in the latter stages of ones’ life with little independence and chronic, debilitating pain.
The support of an effective caregiver in maintaining realistic goals can be critical in this process. There will inevitably be obstacles, and some may prove impossible to overcome. The effective caregiver needs to be prepared to comfort, and then encourage the disheartened to continue along the journey but with a slightly different focus. It is imperative to constantly remind the one physically suffering that these setbacks are part of the process. But, also allow him or her a chance to grieve.
My wife’s new life eventually would include a modified exercise program. This not only boosted her morale, as physical activity was such a part of her old life, but also was important for the treatment of her condition. She and I then utilized skills we learned through our past work experiences to volunteer for a number of organizations, advocating and promoting non-conventional medical treatments. These new outlets gave our lives a new sense of purpose. For Ellen, this filled her need to engage in a meaningful activity, which was to empower those suffering to find some physical and psychological relief from their condition. In essence, we both redefined who we were as individuals and recreated a life that included pain, but centered on activism, hope and possibility. We connected on a new level, strengthening our bond and love.
With all that said, what is of the utmost importance for a caregiver is to not forget his or her own health needs and well-being. The natural focus during these times is on the patient’s health, but the physical and emotional health of YOU, the caregiver, cannot be overlooked. You must make yourself a priority. I suggest having a conversation with the one you care for about your need to attend to your personal interests – the activities you enjoyed before the onset of their illness or disability.
Becoming a martyr to your loved ones condition is not healthy or productive. In order to be the best caregiver you can be, you need to remember yourself. It is okay to enjoy a night out with friends, play a round of golf, laugh, go to the gym or even take a few hours to be alone. Find your own support system, and utilize their help. If a natural extended support system does not exist, create one.
Ellen has taught me a lot about living life to the fullest. Together, we face hurdles and challenges. This is not the life Ellen or I planned to be living right now, but it is the life we have been given … and together, we are adapting and making the best of it.
If you are struggling to care for someone, please view the help provided on the left. As the director of caregivers for U.S. Pain, I know the challenges and stresses you face. You are not alone, and if I can be of any assistance, contact me at: firstname.lastname@example.org.
How Caregivers Can Take Care of Themselves (Cancer.Net)
Question for caregivers to help themselves (Holly Whiteside, AgingCare.com)
How to Recognize, Avoid, and Prevent Caregiver Burnout (AgingCare.com)
3 Things the Chronically Ill Wish Their Love Ones Knew (Toni Bernhard, Psychology Today)
“Angry, Sad & Frustrated”– The Unspoken Feelings of a Caregiver (Jim Stemple, The Pain Community)
A Not-To-Do List For Caregivers of the Chronically Ill: Six items that belong on a Not-To-Do List for an oft-forgotten group: caregivers (Toni Bernhard, Psychology Today)
How to Help Your Caregiver (Toni Bernhard, Psychology Today)
Caregiver Pathways: Stuart Smith, Caring For His Wife (PainPathways.org
Into the Limelight: Perspectives on Caregiving:
An interview with Dana Reeve (Today’s Caregiver)
National Alliance for Caregiving
Family Caregiver Alliance
RobCares – caring for caregivers
PainPathways Magazine – Caregiving Archive