A Caregiver’s Button Box

Do you need ideas on how to replenish, recharge and renew as a caregiver? This month at our caregiver’s support group, Kerrie Neu  gave us lots of ideas. She agreed to let me share them here. With her 19 years of caregiving experience she discussed how to find joy among the challenges. Recognizing that every situation is different, these are some of the points she talked about.

noone@graniteschools.orgWritten by Kerrie Neu

“Just like my grandmother’s button box, we have to find the right button that fits the situation.  What may fit with one person may not fit another. Don’t feel guilty if you try something that other people like to do, but it just doesn’t bring you joy.  It’s okay.  I once attended a quilting class that many of my friends love.  I see their excitement and love their quilts.  However, the first month I went I stressed so much about trying to get my block ready for the next month, that I finally realized this was causing me more stress than joy.  For me, it was not the right button. Instead of acting like Cinderella’s wicked stepsisters who tried to make the glass slipper fit, we can simply find another shoe. We don’t have to fit the shoe in order to find joy and a happy ending, we can find the shoe that fits us and our situations.

escape​Let’s talk about some buttons then. First of all, Brenet Brown talks about buttons we have to be careful of. These are the easy buttons or escape buttons that we use to numb and not think about stress. Often they are self-destructive and don’t replenish us. We may think they momentarily help us forget or be happy, but in the end they usually don’t. For me, one of those escape buttons is TV binge watching. I find when I binge watch I ended up becoming cranky with my family. The TV shows themselves aren’t bad, but what I do with them does not nourish me. So I have to be careful of how often I use those easy buttons.

Neu CarsOn the flip side, Brenet Brown talks about reset buttons, or what I called recharge buttons. These are things that we can do to recharge and replenish ourselves. As caregivers these are critical in order to help us be able to continue to give to our loved ones. We talked about the lesson learned from Lightning McQueen in the movie Cars. When he chose to skip his pit stop in the race at the beginning of the movie, he suffered the consequence in the last lap when he blew two tires and ended up at the finish line with his tongue hanging out and his car in sad shape. He had to learn the lesson of working with others and taking time for maintenance. As caregivers, we must regularly take time to find joy and renew ourselves.

There are many ways to recharge. Sometimes we can do little things that only take moments like drinking a glass of water, breathing, watching wildlife, enjoying nature, watching a child, or reading a poem or inspiring quote. Other times we carve out a little more time to connect with a friend, take a walk, play a game, read a book, or create something. Periodically, it’s also good to plan for some extended time to get away and visit with family, attend a conference, or take a vacation. It’s important to find a balance in our life because we cannot give from an empty cup.  ​

Nue Bike TourOver the last 19 years, we have explored many things to see what brings us joy.  Some of our explorations were quite successful, like our bike trip to the Hiawatha Trail in Montana. Others were not so successful, like our bike tour of London.

Nue Bike Tour 1In each case, though, we learned something important and kept exploring. Never give up. Just this year we discovered that Laurent loves to listen to audio books and to do puzzles. Sometimes it takes a little thought, creativity, and extra planning to be able to do something with the one you’re giving care to, but in the end it is so worth it.

Neu Joy​Wes Stafford, former president and CEO of Compassion International said, ‘Joy is a decision, a really brave one, about how you are going to respond to life.’ Life’s hard. Choose joy anyway.”

My take away from this presentation is to be mindful of the escape, easy or numbing buttons which take me nowhere. Instead, look for the creative buttons that replenish, recharge and renew me as a caregiver. The buttons which work for me may be different from the buttons that work for you. What activities bring you joy? Writing is one of mine.

On Thursday, I will post more ideas Kerrie shared with us. You are bound to find some new buttons to try. 

To see the full presentation slides, click here.

To read more from Kerrie Neu see neusounds.com

 

 

The Benefits of Support Groups and Conferences

BIAU Conference

Photo from Brian Injury Alliance of Utah Newsletter BIAU 2013 Conference

I haven’t forgotten the first time I was encouraged to attend a class on understanding brain injury at the hospital. I thought, no way. I’m overwhelmed as it is and I don’t need one more thing to do. Besides I’m dealing with the effects of brain injury on a daily basis and this is not a class I want to sign up for.

I went to my first class kicking and screaming inside, I don’t want to be here! I don’t want to deal with this injury nor do I want my husband to have it. All the wishing it wasn’t so and disliking the situation didn’t change the fact that Mark had a traumatic brain injury and I had to learn to deal with it. I came to the conclusion I’d better learn all I could to help prepare me for the time he woke up from his coma. I wish I could say the things I learned in those classes made it less frightening, but I don’t think it did. However, I did find comfort in being in a room with others who were dealing with the same devastation I was and the information was helpful.

Over the past twenty-three years Mark and I have continued to go to support groups and the annual conferences. We haven’t gone every year, but when we do go we benefit from other peoples’ experiences and knowledge, as well as the resources that are shared. Now days it’s easy to look up information on the internet, but then you’re missing out on connecting with real people. Whatever health issue you or your loved one is dealing with, I hope there is a support group, classes and conferences that relate to the problem. The human experience plus the information and resources I’ve gained through these avenues has made the time invested worthwhile.

As an example, the Brain Injury Alliance of Utah had their annual family and professional conference on October 24, 2014. This year it was held at the Ogden Eccles Conference Center. The conference was full of information, with two sessions offering four classes to choose from. It began at 8 am with registration and a light breakfast. There was an hour to eat, look at exhibits from the sponsors and pick up information from the resource tables. Always a favorite is the silent auction. There were tables full of homemade items, books signed by the author and even airline tickets to bid on. The silent auction and resource tables last throughout the day and can be viewed and bid on between the sessions, with the final bidding after the second session.

This year’s conference theme was Life Will Go On. Every year the theme is different and after breakfast a keynote speaker bases their talk on the theme before breaking up into the first session of classes. After the first session there was a delicious lunch and recognition awards given to five individuals for their contribution to the brain injury community. The categories were: Survivor of Brain Injury, Family Member, Educator, Professional and Lifetime contribution.

After lunch and the awards, the second session begins. Afterwards, the final bids are collected for the silent auction. This is a favorite at the conference and all of the raised funds from the auction go to serving the Utah brain injured community.

Last, but not least, there is a panel discussion. Many people do not stay for this last hour, however, I have always found it to be very informative and I enjoy the interaction of the discussion. The panel usually consists of four to six people who sometimes are all professionals or family members to discuss the conference theme. I’m grateful for the knowledge shared by their experience and take away so much good information. I leave with renewed hope and support from the conference. On a daily basis I can be consumed with worry and overwhelmed with responsibility and my world can become inward and small. It’s helpful to get out and see others in a related situation and it always builds a desire within to reach out and help another. There is strength in numbers and encouragement that comes from being with others who are dealing with the same chronic illness or injury.

Accept Your Feelings

The Best is Yet to ComeCaregiving can trigger a bunch of difficult emotions. It’s important to acknowledge and accept what you’re feeling, both good and bad. Don’t beat yourself up over your doubts, fears, disappointments and misgivings. These feelings don’t mean you’ve lost love for your family member—they simply mean you’re human.

Five common feelings of a caregiver

  • Anxiety and worry – You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness progresses.
  • Anger or resentment – You may feel angry or resentful toward the person you’re caring for, even though you know it’s irrational. You might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
  • Guilt – You may feel guilty for not doing more, being a “better” caregiver, having more patience, accepting your situation with more calmness. Wishing you thought clearly under pressure. If you don’t live with your loved one, you may feel guilt for not being available more often for them.
  • Grief – There are many losses that can come with caregiving (the healthy future you envisioned with your love one; the goals and dreams you’ve had to set aside). If the person you’re caring for is terminally ill, you’re also dealing with that grief.
  • Overwhelmed – There is much responsibility with caregiving. The list seems endless and leads to little sleep. You may try to do more than you can or should. So much to do and not enough time. This is the feeling I fight the most.

We’ve all experienced each one of these feelings. Even when you understand why you’re feeling the way you do, it can still be upsetting. In order to deal with your feelings, it’s important to talk about them. Don’t keep your emotions bottled up. Find at least one person you trust to confide in.

Places you can turn for caregiver support include:

  • Family members or friends who will listen without judgment
  • Your church, temple, or other place of worship
  • Caregiver support groups at a local hospital or online
  • A therapist, social worker, or counselor
  • National caregiver organizations
  • Organizations specific to your family member’s illness or disability
  • UnitingCaregivers.com. Add comments, share your story, tip or thought. Email me anytime at Barbara@UnitingCaregivers.com