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

 

 

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A Better Today

Memorial DayFor decades, Decoration Day was observed on May 30. Businesses closed their doors to honor and decorate the graves of the American soldiers who had lost their lives in battle. It wasn’t until 1971 when the Uniform Monday Holiday Act passed, declaring Memorial Day to be observed on the last Monday in May in order to create a three-day weekend to honor our fallen soldiers. While the federal holiday isn’t about the start of summer, it has evolved into that over the past forty-five years.

May is also the month of graduation for many students and for many more it’s the end of a school year which adds to the excitement for the beginning of summer. The anticipation for summer activities and vacation brings some level of stress to most families and when you have a family member with special needs, the anxiety level may increase. Physical, mental and financial limitations can bring disappointment and frustrations when family time doesn’t work out the way we’d hoped.

Often the demands and responsibilities weigh heavily on just one person. Possibly without even realizing it, all of the caregiver’s attention and energy is directed on the one person who seems to have the most needs. However, as Christine reminded us in Laura’s Story, Part 7, there are others who need our care and devotion. As a caregiver, how can you meet the needs of the one with disabilities and not neglect your other loved ones? It’s a very difficult balancing act.

My children had a wise elementary school counselor who was concerned about their needs not being met after our tragic car accident. She recommended I spend some one-on-one time with each child weekly. Following her advice, I took turns taking one child out for ice-cream, bowling or some other activity while the other child stayed home with Mark for an hour or two. At the time, it seemed like a lot of effort on my part, not because I didn’t want to be with them, but I worried about Mark and the child left at home. Although I regret not being able to be more carefree with my children, I treasure the memories of the one-on-one time I spent with them.

In Laura’s Story, Part 6, Christine reminisces about their trip to Disneyland and another fun day at the local amusement park, Lagoon. This article reminded me of the importance of taking time to play with our families. As a caregiver it’s easy to feel like you don’t have the time or the money to do so. However, good memories are important for building a strong family, one that can withstand hardships.

Including Mark, even with his limitations, we tried to continue our summer traditions of barbeques, camping, roasting marshmallows over a campfire and a summer day trip to Lagoon with our kids. We also took a few extended trips over the years to Washington and Arkansas to visit parents, sisters and grandparents. Every outing was much harder and required more planning with Mark’s disabilities. I remember the stress of preparing to leave the house and feeling like my energy was completely drained when returning home from these family activities. However, my efforts are rewarded by good memories that far out-weigh the difficulties. Now that our kids are grown, I cherish those times more than I thought possible. I now realize the benefits of taking a break from our everyday responsibilities and the impact it had on our family’s well-being.

Memorial DayMemorial Weekend is more than looking forward to the start of summer and creating family memories. It’s a time to remember those who gave the ultimate gift. In their honor we should pursue peace and happiness. There is no better place to start than within our own families and building meaningful experiences.

Thank you to all the American military who died in wars fought for our freedoms so we could have a better today and tomorrow.

Please feel free to add any soldier remembrances or ways you’ve created worthwhile family memories.

Where to Turn for Help

Pick Yourself UPI appreciate Christine Scott’s series, Laura’s Story, where first she recalls her sister’s birth and slow development and then the impact of her seizures and her battle with cancer. Sometimes the trials and health concerns seem to be never ending, causing stress and fatigue to the individual and the caregiver. In part three Christine wrote, “Yesterday I asked my mom how she did it and she said, ‘You just have to pull yourself up by the bootstraps and take it one step at a time.’ Then she smiled and added, ‘I’m made of good pioneer stock where the fittest survive.’”

Both statements are true, but what if you’re in a slump and can no longer pull yourself up by the bootstraps? I imagine every caregiver has periods where stress, exhaustion and/or depression set in. If those feelings last for an extended period of time, medical attention may be necessary. Stress and depression are treatable disorders. If you want to help prevent burnout, consider turning to the following resources I found on http://www.webmd.com/women/caregiver-recognizing-burnout?page=3#1 for help with your caregiving:

  • Home health services—These agencies provide home health aides and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.
  • Adult day care—These programs offer a place for seniors to socialize, engage in a variety of activities, and receive needed medical care and other services.
  • Nursing homes or assisted living facilities—These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.
  • Private care aides—These are professionals who specialize in assessing current needs and coordinating care and services.
  • Caregiver support services—These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.
  • Aging services—Contact your local Agency on Aging or your local chapter of the AARP for services available in your area such as adult day care services, caregiver support groups, and respite care.
  • National organizations—Look in a phone directory or search online for local agencies (such as Family Caregiver Alliance), chapters of national organizations dedicated to assisting people with illnesses such as Parkinson’s disease or stroke. These groups can provide resources and information about respite care and support groups.Light a Candle

 What has been your experience with the above suggestions? How do you prevent burnout? Sharing your experiences in the comment box can help another caregiver.