Caregiving around the Holidays

Here are a few tips for making the season bright even when you are more than overwhelmed with life minus the bustle of the holidays season.

First, breathe, and remember the spiritual event that sparked the holiday you celebrate. This will ground you as you create a plan that works for everyone, including yourself!

Keep meals and gifts simple but festive. Focus on crafts, activities, holiday music, movies, and spending time together. You might try reading short holiday stories aloud to your loved one, or listening to a book on tape together for an hour a day.

Involve your loved one in decorating and remember past holidays together.

Carry on an old tradition or start a new one. Set a small formal table in the bedroom with an electric candle. Who says dinner has to be in a dining room.

Be flexible. The less you worry about superficial things like gifts, perfect dinners, or a spotless house, the more fun you will experience.

Focus on loving the person in your care. This is a special time of year, one of reflection, and sometimes of great pain or personal loss. But remember, it's true, that in giving, you receive. And we all have the capability of giving a kind word, a soft touch, and a heartfelt smile. So open your arms and let it all in--the great meaning of the season, and feel blessed, no matter what your circumstances.

Thanksgiving

Thanksgiving can be a challenging time for caregivers and families going through transitions.
When families are scattered and some members have special needs that limit travel, many families decide to spend the holiday apart. This Thanksgiving will be an especially quiet one at our house. Both Anna and Mary are far enough away and have work demands that make it difficult to come home, so we will have four adults around our table for the first time in 23 years. I'm brainstorming on how to make this day more festive. Maybe we'll set up the Christmas tree and trim it after our turkey dinner. That way we'll get our holiday decorating off to a good start and Grandma and Grandpa can help hang ornaments. I'm sure we'll hear a few stories about some of our passed down heirlooms. I'm thinking a mini tree-lighting ceremony may be just the thing to keep our spirits up; it will keep us looking ahead to the holiday when we'll have more of a full house.  In any event, we'll all give thanks for each other, for the love we share, for our good health, and for the family members who once shared our table, but are no longer with us. On this holiday of reflection and introspection, we wish all of our family and friends a fullness of heart equal to that of their bellies.

Living to the End

In Learning by Accident, I cover the period in my life from April 2002 – 2004 in great detail. What follows afterward in the book is the epilogue, where I simply show a day in the life as I experience it now, only the ordinary has become extraordinary, and any crisis-free day is a glorious gift to savor.

I’ve learned so much through caregiving. Before Hugh’s accident, I was  stuck in the doldrums. I held myself back for a variety of reasons, making excuses for why I couldn’t go back to school, grow my business, or take a new exciting job. After Hugh’s recovery, I felt energized to use my time wisely. And after the passing of both my mother and father, I learned even more about my own behavior, and why I sometimes didn’t make the most of each day.

 

Erich Lindemann writes:

“If you can begin to see death as an invisible, but friendly, companion on your life’s journey, gently reminding you not to wait till tomorrow to do what you mean to do—then you can learn to live your life rather than simply pass through it.”

My mother remained patient and engaged with people through every hour she spent in hospice until she died. She didn’t fear death; she used her acceptance of it to make sure her life was lived fully in the moment. And even though she could no longer do many things, she could still be a person that others wanted to be around, and she was. People flocked to her for the peace and great love she radiated. Live the life you are meant to live. Don’t wait till tomorrow to begin.

Slowing Down

How do you deal with life when you feel like the disconnected period below a huge question mark? You're apart, hovering in the unknown, about to fall but you don’t; you stay put—floating in the middle of nowhere, frantic, yet unable to get anything done.

An inevitable part of caregiving is feeling yourself tugged by an emotional rope all the time. “I should be doing this, but I’m here doing my job—I should spend time with her, but I feel so depleted right now.” First of all, it’s normal to feel this way. Second, you can’t be in two places at once. Third, make a promise to yourself: when you are with your loved one in your caregiving role, you will be there joyfully, and your loved one will feel it. Number 3 is the most important, and you cannot achieve that level of caregiving unless you are healthy and recharged yourself.

Through my heavy caregiving years, I kept a stack of books on a table with a candle. When I felt really stressed, I reached for one of those books. They included: The Power of Now, The Joy of Laziness, and several other books with soothing, yet powerful messages that kept me grounded and calm. The Joy of Laziness, by Peter Axt, and Michaela Axt-Gadermann, proclaims, “Life is better slower.” I found this to be so true when caregiving. On the days I rushed around frantically, everyone around me sensed my nervousness and anxiety. But when I calmed myself down, the whole tempo of the house slowed down as well. Everyone could breathe easier, and we all had a better day.

When I was simply too tired or nerve-jangled to read, I lit the candle and stared at the flame. Somehow, it hypnotized me. I didn’t have to meditate or chant, or think, just watch the flame. A few minutes of zoning out straightened me out. (Just remember to blow out the candle before you run back upstairs to help someone!) And keep the peace, baby!

Working Together

Who would have thought, nearly ten years ago, as Hugh slept comatose in the ICU, that  one day we would stand in front of a graduate class of 44 occupational therapy students talking about our experience with traumatic brain injury. This morning, at the request of an OT Professor at Virginia Commonwealth University, we found ourselves at the podium remembering, sharing stories, and even joking with a group of medical students ready to launch a career helping survivors of open and closed head brain injuries.

When Hugh completed his talk by saying,"...and now we'll take your questions. And I want you to understand, we will answer ANY question...no matter how down and dirty." The group broke out in laughter.

Question: "Hugh, did you ever feel upset at your wife because she could do things and you couldn't?" Pointing to me, he said, "Oh, you mean that control freak? Yes, of course!" I had to nod in agreement, while trying not to turn red in the face. I always was a control freak, a trait that swelled by the day after Hugh's injury. "That's natural," he added. "But Rosemary was good natured. She essentially brought up three adolescents after my injury"(more laughter).

As much as the writing of Learning by Accident was my therapy, the publishing of this book has bonded me with Hugh in a way that might never have happened, and provided us with meaningful work we can perform together. It's a testament to opening yourself up to the world, and being who you are. Ask yourself the down and dirty questions you really want to know--stop hiding and find your answers. They are there if you look hard enough.