The Write Invitation

On Tuesday, I listed six benefits of writing  and how writing is therapeutic. Now I’m inviting you to share your story on Uniting Caregivers. I hope you’ll give it some serious thought.

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The questions listed do not have to be answered. They are only suggestions to get you started. If you have questions or concerns please email Barbara@UnitingCaregivers.com.

 

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Evey’s Story Update

Nate and Cally Johnson were my first guest authors on October 27, 2013.  Over the past nine months, their daughter, Evey, has made some remarkable improvements, along with some setbacks. I invited them to give us an update, which they so graciously accepted. The first two paragraphs are from their first article, Evey’s Story.

Written by, Cally Johnson

On May 31, 2012 our lives dramatically changed for the better. Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome. It is also known as Koolen-de Vries Syndrome.

There are only 200 reported cases throughout the world of this syndrome. Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

If there’s one lesson I have learned as a caregiver it is to expect the unexpected. There’s a fine line of balancing expectations with optimism and being realistic without being pessimistic. As I watch other caregivers who are further along in their journey, I always admire the grace they exude when navigating their own specific journey.

Evey has had setbacks and major triumphs over these last twelve months. One of Evey’s major challenges is severe scoliosis.  Because of this, she has two titanium rods placed on both sides of her spine. It required extensive surgery to put them in, and she needs them surgically adjusted and expanded every 6 months as she grows until she stops growing at the age of fourteen. At that time they fuse her spine and by then she will have had more than thirty spine surgeries, not including several other surgeries she will need along the way.  Most people see this as such a daunting undertaking for a caregiver, but I’ve learned to appreciate the consistency and schedule. If only all of Evey’s life could be so well scheduled, without unexpected surprises.

Because of Evey’s scoliosis, the doctors and therapists were not sure if she would ever crawl or walk.  They’d never seen such a young patient with her complications walk or eat on their own.  I’m happy to report that over the last 3 months, Evey has learned to eat by mouth, and is no longer dependent on her feeding tube.  A few weeks after learning to eat, Evey started to bear weight and can now get herself into a standing position and she can take steps in her walker.  She has completely shocked her team of doctors and therapists.  She also completely shocked us, her parents, since we just hoped Evey would stay the happy little girl she is regardless of whether she could ever eat or walk on her own.  We were so excited that she had a spurt of development and is turning into quite the independent two-year-old.

Between these new developments, we have also had some surprising setbacks.  We learned she is losing her hearing from some growths in her ears from repeated infections.  Evey had to have ear surgeries in between spine surgeries, but we are no longer surprised by the unexpected and we had so much positive going on, we didn’t really have time to dwell on this new-found, disappointing discovery. Thankfully, with hearing aids, she’ll be able to obtain some hearing and we are now immersing the whole family in Sign Language to help Evey throughout her life.

It has been such a growing period over these last few months adjusting to Evey’s triumphs and challenges.  We are slowly learning, as caregivers, how to manage expectations and how to continue to be Evey’s biggest cheerleaders for her triumphs.  We hope as time goes on we will continue to learn how to keep disappointment at bay and to always keep the expectations optimistic.  Thankfully, we have met so many people along our journey with Evey who have shown us how to be as graceful as humanly possible in this adventure which is always unpredictable.

Thank you, Cally, for sharing your story. You are a wonderful mom and caregiver to a very special daughter!

 

 

Appreciate What You Have

AppreciateOften it’s hard to fully appreciate what you have until it’s gone. When you miss it then you realize just how blessed you were. Last Sunday’s Story by Julie Brown, Caregiving Memories of My Grandmothers, was a great example of appreciation all way around. Julie was grateful for the opportunity to care for her grandmothers and they appreciate her for the care she gave.

I was fortunate to know both of Julie’s grandmothers. They welcomed our family when we moved into the neighborhood. They were friendly, happy and the kind of people that always made you feel better just by being around them. Last summer when Mark was at the rehab center, Julie’s grandmother was in a room just a few doors down from Mark’s room. Since I was with Mark most of the time, we witnessed the sweet visits from Julie and her children. I was impressed and touched by her love and support and know her grandmother was also. At mealtime we often sat at the same table with Julie’s grandmother and she spoke often of her family and how grateful she was for them.

Three tips from Julie’s story:

1)     Sometimes your presence is all the help that’s needed. Julie recognized the importance of visiting her grandmother in the rehab center. Sometimes she would rub her feet, brush her hair and other times she just sat and held her grandmother’s hand. Giving support and encouragement in this way was all her grandmother needed. Nothing feels better than knowing you are loved and cared for.

2)    Humor relieves stress. While Julie’s grandma was living with her and dropped something, she would apologize for the mess that needed cleaning. Julie used humor instead of getting upset by saying, “How did you know I needed to mop the floor?” Also when Julie’s kids couldn’t understand why she was happy to make another meal for Grandma and not them, she would say, “When you are 90 years old, you can be picky too.”

3)      Appreciate the time you have. During the hard times, when Julie was tired or frustrated she would remind herself that her grandmother would not be here much longer and what an honor it was to take care of her. Most things are harder than we think they’re going to be and being a caregiver is no exception. I think it’s wonderful Julie stuck with it and recognized the blessings which came because of her service. The appreciation her grandmothers expressed to her and the feelings of gratitude she felt from her deceased grandpa brought pleasure and made her caregiving worthwhile. This is a great reminder for all of us—when someone is doing something nice for us—appreciation is the best pay.

I thought Laura Nordfelt’s comment was worth repeating, “What an amazingly sweet person you are Julie and what a great gift you gave to your children, not only the time they had with their great grandmother, but the lesson they learned about giving back. You are one smart (and wonderful) Mom.”

 

 

No Foolin’, You’re a Caregiver

What you do and say mattersYou may not be a caregiver all day long, but if you care and you give, you are a caregiver. If you drive someone to an appointment, prepare a meal, watch children, or go shopping for someone else, you are a caregiver. You may think you’re just doing what anyone else would do—but anyone who helps is a caregiver. Some caregivers provide full-time care. Others just listen. Whatever you do and say matters!

I’m a full-time caregiver and I’ve been asked, “Who takes care of you?” Well, I’ll tell you…

Mark is my caregiver. He may not be able to make a meal or do the physical chores of housekeeping or yard work, but he does care about me and gives me support by waiting patiently for me to complete a task before taking care of his needs. He also lifts my spirits with humor, companionship and good times. Being with him is a pleasure. I love his wit and sense of humor. He also gives care through letters, expressing love and appreciation. These letters mean more to me than if he were able to give me flowers.

My parents are my caregivers and have been my whole life. Even though they are well into their eighties, they give me and many others lots of care through meals, visits and sincere interest in what is going on in my life along with any help or assistance I may need.

My siblings are my caregivers and they too have been my whole life. They are all busy with their own lives and children, but they make time to check up on us. If I ever need anything I always know I can call on any one of them. It’s wonderful to feel the love and support of family!

My children are my caregivers. When they were small it was wonderful to feel their love and admiration. They were sure I could fix anything and no one was stronger. As they grew, experience taught them differently, but their love kept me going. They are my strength and what motivates me to do and be better. Their care is different now they are busy adults and no longer dependent on me, but I still feel their care and love and it means a whole lot to me.

My neighbors and friends are my caregivers. They give with listening ears and a caring heart. They give understanding, support and friendship. They are observant for what they can do to help without me asking for it. I’ve been fortunate to be surrounded by people who are anxious to help. Many times in the winter my snow is shoveled off my walks and I have no idea who did it.

My church provides caregiving. Not only do I find comfort and solace in my church activities, but my association with people there has led to friendships and an organized volunteer program where two people come twice a week to help Mark with his exercises.

So I just have to say, I’m one lucky caregiver. I’m supported by a lot of other caregivers who probably don’t think of themselves as caregivers. But I know they are and I know I couldn’t do this job without them.

If you’ve ever done any act of service, you are a caregiver and you know along with the work there is joy in doing something for someone else. No foolin’, you’re a caregiver!

I hope you’re having a fun April Fools’ Day.

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