As a new year begins, I’m focused on caregiver self-care
We must look after ourselves in order to look after others
As I descended a country lane through the valley this morning on my way to work, storm clouds that had gathered began to clear, revealing a blue sky. Daffodil sprouts appeared in the hedgerows. The sun shone across the fields, highlighting the remaining autumnal colors, and then streamed through the windscreen upon my face. It felt wonderful after what seemed like months of relentless rain.
On my car stereo, Nina Simone was singing; it was a song that had been a favorite of my dad and me: “Here comes the sun, I say, it’s all right. … It’s been a long, cold, and lonely winter, little darlin’. It feels like years since you’ve been here.” In that moment, everything started to feel better.
See a little light
Now that the holidays are over, I’m contemplating taking down the decorations. I dislike doing it every year, so I try to avoid it. I’d rather put them up, which always prompts good memories of Christmases gone by.
When I was a child, when Dad was still alive, Huntington’s disease hadn’t yet entered our lives. My life was carefree. With holiday decorations come light, sparkle, and festive cheer, something that has been particularly welcome these last couple of years since my brother was diagnosed with Huntington’s.
When our dad was diagnosed many years before that, I started a new family tradition: I’d leave fairy lights up in the house year-round, and I’ve continued to do so ever since. They light up those dull, gray, winter days.
While I talk about Huntington’s with friends, fellow support group members, and care specialists, I’m also mindful that it’s important for me to take mental breaks. It’s vital that I make time for myself each day by doing something that’s meaningful to me and that makes me feel good, even if it’s only for five minutes.
I’ll talk to friends about topics unrelated to Huntington’s. I take long walks to connect with nature.
I know I need to get better at asking for help in my role as a familial caregiver. I need to be more specific about the type of help I want, and I must learn to ask sooner, before things become too overwhelming.
As each Christmas passes, I often find myself wondering where we’ll be this time next year. How far will my brother’s condition have progressed? But living in the past or looking too far into the future can be damaging.
This reminds me of something a friend once suggested: that I think of three things at the end of each day that make me feel grateful. These could be small or big things. Doing so focuses my mind on the good in life and the present moment, which gives my mental health a boost.
So, with New Year’s resolutions in mind, I’m making sure I eat a decent meal, drink enough water, be kind to myself, and have an early night once in a while. I need to remember to look after myself, or I will be in no condition to look after anyone else.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Comments
Janie Rude
You are warm sunlight in the day ..the light of the moon & stars in the night …the hot sand at the beach ..the cool ocean water we run to. May rest , restoration, peace , joy all fall on you. A true blessing for the Negative test result for yourself , it will not be passed to any children you may have. You are an amazing Positive person ! You are taking in stride that your father & brother have this vicious disease. And showing great support. Your words are refreshing. You have great integrity and hope for the future. The Key for Caregivers, in any situation …is that Self-Care. Recognizing your own needs. Your own limitations. Asking for help. That’s a hard one. I lost my Cowboy 17 months ago from this disease. Almost 25 years. He was diagnosed in 1998 and we were on the Path. A path with rocks, jagged. Stinging “things” slippery mud. Gaps. Landslides. Storms. Stay positive. Stay informed. But as your article talk about. — self Care. You. Taking time for you. Your doctor appointments. Your hair trims. Your table somewhere for coffee. Your books to prop up & read. It’s so crucial. Vital. Bless you ! Your words are so encouraging. I was able to keep my spouse at home / with Hospice at the end of our journey. It was a true honor to be with him. Thank you for letting me ramble.
Becky Field
Thank you, Janie, for your beautifully written, kind words. It really means a lot to me. It really is an honor to be with our loved ones, but equally important to remember to take care of ourselves. Sending much love to you and your family.