Celebrated every November, National Family Caregivers Month (NFCM) is a time to recognize and honor family caregivers across the country. It offers an opportunity to raise awareness of caregiving issues, educate communities, and increase support for caregivers.
The national observance is led by Caregiver Action Network (CAN), a nonprofit that provides free education, peer support, and resources to family caregivers. CAN selected the 2022 theme, #CaregivingHappens, to acknowledge the reality that family caregiving is not always convenient or expected.
Being a caregiver of loved ones with Myotonic Dystrophy (DM) is very unique. Myotonic Dystrophy is the most variable disease of any disease. That means that your medical support team doesn’t know exactly how it affects your loved ones. Not to minimize their support, you need them on your team. But it also means that you need to trust yourself about how your loved one is affected.
When my family was first diagnosed Kent’s muscles didn’t show any myotonia so they performed an EMG (Electromyography) on Kent. The EMG didn’t make the classic response for DM so we were told that even though his genetic test was positive, he really wasn’t affected.
Kent had always been non-reactive in situations that required reaction. He struggled engaging when there was a needed action. Kent is a delightful person and he always knows how to talk to strangers and he is very steady and even-keeled. But when something was happening that needed to be addressed, he didn’t engage. This is just one of the unique facets of Kent’s personality.
Once I accepted that DM really did affect Kent I was able to work with his unique traits. Until I accepted that Kent was affected I had resentment because it seemed that he didn’t care. Accepting Kent’s flat affect gave me permission to be the one who took on issues that needed action without feeling like Kent wasn’t part of the team. It made a big difference in our relationship once I was able to acknowledge the effects of DM even though the medical team assumed that since it didn’t affect his muscles that he wasn’t affected.
Remember that we are the ones on the front line living with DM every day. The doctor’s intentions are genuine and they are a great support because they are so educated and have access to others that are educated about DM. They are also in this profession because they care. But, they are not on the front lines every day with our loved ones. Remember to trust yourself.
Judy Zellner, LPCC, Fisher-Titus Behavioral Health, wrote an article that included 7 tips to improving self-esteem. I am including them here because it is important for those of us living with DM to keep up our self-esteem. We are better caregivers and individuals if we feel good about ourselves and trust ourselves.
These are Judy’s modified tips. I have taken this information from the Salt Lake County Caregiver Support Program’s monthly mailer. These tips are great guidelines for the overwhelmed caregiver. Following these guidelines is a way to thank yourself for the hard work and effort you make every day.
1. Stop comparing yourself to others. People’s lives are never as perfect as they look—just do you.
2. Stop belittling yourself. Ask yourself, would I talk to a loved one or friend this way? We need to stop beating ourselves up and be kinder to ourselves.
3. Use positive self-affirmations. Examples are “I believe in me,” “I am not my mistakes,” “positivity is a choice and I choose to be positive,” “I am enough,” and “I deserve love, compassion and empathy.”
4. Surround yourself with Positive, supportive people. When you are around positive, supportive people, you feel better about yourself and your mental wellness will increase.
5. Dwell on your positive qualities Make a list and read it often. Most people dwell on their negative qualities, which lowers self-esteem and can negatively impact mental and physical wellness.
6. Give back. Not necessarily in a financial way. When you do things for others, you feel you have value. For example, smile and say “hi” to someone in the grocery store. You may be the only one that person has talked to on that day.
7. Pay attention to self-care. Get enough sleep, do some physical activity and spend some time outside, do something that you enjoy. Stay away from alcohol and recreational drugs. Focus on the real you.
Practicing good self-care and self-affirmation is the best gift we can give ourselves. Practice being grateful for who you are, what you do, and how you support others. You deserve kind words—especially from yourself.
It was hard for me to learn what self-care meant. Well intentioned individuals would say to me “Take Care of Yourself.” What does that mean “Take Care of Yourself?’ Does it mean to take a bubble bath? Taking a bubble bath is the way that Hollywood portrays it. What if I don’t like taking a bubble bath? What if I feel more stressed after the bubble bath because of the things that I wasn’t able to take care of while in the tub?
I eventually learned that for me it is the small things that nurture myself. For instance, finding joy in what I am doing. If I am cooking, listen to a podcast or some music. When I am interacting with my loved one, remember how important they are to me so that the interaction is pleasurable instead of an interruption.
In Maslow’s hierarchy they talk about the basics – food, shelter, warmth – as being necessary before you can reach the top of the pyramid which is self-actualization. I came to realize that for me, the basics were where I could find my self-actualization. I don’t have to be out in the world trying to climb to the top of the pyramid to nurture myself. I need to find the joy in the basics. Sitting with a cup of hot tea and wrapping in a blanket can bring me great internal sustenance and pleasure.