There were times during the three years when I cared for my mother when I felt utterly helpless. Most of those were times when I could see that she was suffering from an illness or was in pain recovering from a broken bone. I knew I had to remain strong for her.
Taking care of a loved one with dementia may be one of the most difficult challenges you encounter in life, especially as their health declines and they require more care. There will inevitably be setbacks and struggles along the way. Resilient caregivers let themselves become transformed by their experiences and develop strengths and abilities they didn’t know possible. I was one of them.
“Resilience is the process of successfully adapting to difficult or challenging life experiences. Resilient people overcome adversity, bounce back from setbacks, and can thrive under extreme, ongoing pressure without acting in dysfunctional or harmful ways,” writes Dr. Al Siebert, Ph.D., a researcher and author. He studied this topic for over fifty years. Dr. Siebert believed that everyone is born with a unique combination of inborn abilities to develop resiliency to handle life’s difficulties.
I’d like to share some of what I learned in the process of developing caregiver resiliency, together with insights drawn from research, especially from Dr. Siebert’s recommendations:
- Find meaning, purpose, and value in difficult circumstances. Put aside the useless and debilitating “why me” thoughts. Instead, reflect on such useful questions as: “Is there anything good about this experience for me? How is this changing me?”
- Constantly learn from the experience. Wisdom and new strengths do not come from adversity itself, but from attempting to make sense of what one is going through. Ask yourself: “What is the lesson here? What can I learn from this?”
- Accept and embrace what life has handed you. No one would wish this disease on their worst enemy. If you don’t truly want to be in the caregiving role doing what you are doing, you will more likely become psychologically drained and exhausted.
- Maintain a playful, curious spirit. Enjoy things as children do. Experiment. Laugh. Be curious. Even though Alzheimer’s and other forms of dementia are no laughing matters, a dose of humor is good from time to time.
- Adapt easily. Try to be as non-judgmental and emotionally flexible as possible. You can be both strong and gentle, sensitive and tough, logical and intuitive, serious and playful.
- Try to maintain a strong positive self-concept, self-confidence, and solid self-esteem. This may be difficult when family members or friends feel you are not doing enough or criticize the care you provide.
- Maintain good friendships, loving relationships. Lonely people are more vulnerable to distressing conditions. Find outlets and persons to share your feelings who will be supportive. If you don’t have family or friends to whom you can express your emotions, seek a professional counselor or group who can be your support.
- Express feelings honestly. Optimistic individuals tend to have better health, are more stress resistant and persist longer. Learn to be aware of the cues that trigger a negative stress response. Choose to suppress feelings when you believe that is best to do. Release emotions like anger and frustration in a positive, creative way such as through art, music, journaling, etc.
- Develop open-minded empathy. Try to see things through the perspectives of others. Ask: “What is it like to be them? What is legitimate about what they feel, say, and do?”
- Question authority. Don’t be afraid to ask questions about medications or treatment plans. Keep the discussion and dialogue going with medical professionals and researchers in your community. You can be an advocate for your loved one, as you ask the questions they can’t ask anymore.
- Develop a talent for serendipity. Convert a difficult situation that could be emotionally and physically toxic into a blessing in disguise.
- Learn all you can about the disease and the stages that your loved one might endure. Poet and author Maya Angelou has a helpful hint in this regard: “Do the best you can until you know better. Then when you know better, do better.”
Resilient caregivers let themselves be transformed by their experiences. You have it in you to determine whether you will emerge from the caregiving experience exhausted and bitter, or strengthened and better for it.
For me, being a caregiver was a pathway to new levels of grace, courage, creativity, and love. As I write in my memoir, “Please share with others what you have learned, as that is the best way you support and lighten others’ burdens, and, in turn, feel connected to those in similar situations.” (Pages 112-113) Here is an affirmation to write out and put on your mirror to remind yourself daily: “Always remember, you are braver than you believe, stronger than you seem, smarter than you think, and twice as wonderful as you ever imagined.”
I wish you peace, patience, compassion, and joy in your caregiving today and every day!
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Take a look at this checklist designed by Dr. Siebert for professional caregivers and emergency care workers: http://www.survivorguidelines.org/articles/sieb15caregiver.html.
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The AARP Foundation has a nineteen-page document available to download. “Prepare to Care, A Planning Guide for Families,” provides a comprehensive planning tool so that you are prepared to take action when it is needed. To download it, go to: https://assets.aarp.org/www.aarp.org_/articles/foundation/aa66r2_care.pdf.
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The website, AgingCare.com, collected stories from caregivers that they shared in a recent post. I hope you get a good laugh to tickle your funny bone: https://www.agingcare.com/Articles/Top-caregiver-stories-143989.htm.
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Ted McDermott has dementia but loves to sing and remembers the lyrics to every song her learned. His son found a way to bring Ted happiness and a sense of purpose by filming his father singing in the car. Click here to hear Ted sing, “Lonely Is the Man Without Love:” https://youtu.be/-zZAAY85JQg?list=RDYbw9Y6FCkF4.