In The Beginning

It has been too many years since I’d sat at a desk in a classroom, I thought while looking through the Adult Community Class Winter Schedule. My 2013 goal was to write a memoir about our experience surviving traumatic brain injury (TBI). It had been a story I wanted to write for twenty-two years, but didn’t know how to go about it. I knew I needed knowledge and help with this goal, so I was especially interested by the “Writing Class” listed on the schedule. I didn’t know how I’d make time for this class between my work and caregiving demands, but I signed up for it anyway.

I recognized the familiar echoing taps of my shoes as I rushed down the large empty hallway of Indian Hills Middle School looking for the classroom.  It should have only been a ten minute drive, but it took me longer because I’d never been there before and it was hidden in a subdivision unknown to me. I opened the closed door, late as usual and unsure of what I’d gotten myself into. As I hurried to find the closest chair, the teacher, Brenda Bensch, smiled and welcomed me to the class.

Embarrassed by my tardiness, I apologized as she handed me the outline for the next several weeks. Although I wasn’t getting a grade or any kind of credit for the class, I wanted to do my best. I felt overwhelmed by the schedule. How would I fit writing on top of all my other responsibilities? I stayed focused on my goal and stuck with it.

Not the most flattering picture of me, but the only one I have with my writing teacher, Brenda Bensch (in the red) and my favorite classmate, Susan Knight.

That class and the next one in the spring influenced my life for the better and I have Brenda Bensch to thank for it. Some of her words of encouragement ring in my ears to this day. She taught if you want to be better at writing, you have to practice, just like anything else you do.  “Start a blog; write every day or at least three times a week.”  In my mind, I scoffed at the suggestion. There is no way I could make time to do that. I just want to focus on my book.  The more I wrote and had my chapters critiqued, the more I realized the importance of practice.

That summer Mark was hospitalized three times for blood clots. He got really weak so we spent twenty-one days at Rocky Mountain Care Center. While we were there, Mark’s occupational therapist, Jessica, suggested I start a caregiver’s support group. I thought, Where would I find time to do that? Jessica urged me by expressing the need, which she observed from other personal caregivers. “Your experience could be valuable to them.”

“Maybe I could start an online support group which could encourage and help other caregivers in the comfort of their own home and whenever it’s convenient for them.” Jessica loved the idea and just about every day for the duration of our stay she encouraged me to do it.

I work on a computer daily, but had no experience online. How do I create a website which could encourage caregivers? My talented daughter, Katie, designed Uniting Caregivers and taught me how to use it. I’m so grateful for her skills and patience with me in this endeavor.

My past writing experience has mostly been on a business level of composing demand letters for payments on delinquent accounts. Writing a book or an article is a very different style of writing and much more enjoyable I might add. I appreciate and I’m so grateful for my sister-in-law, Dianne, who proofreads every article and corrects my punctuation. She gives me the confidence I need to publish the article.

Today marks the second anniversary of Uniting Caregivers.  I’ve learned much about caregiving and caregivers through the story’s others have shared. Through my experience the past two years, I realize how therapeutic writing is. It has increased my understanding of others as well as myself. As I search for the right words to express my thoughts and feelings, I come to see things more clearly.

Every caregiver I see, I admire. They’re putting another’s need before their own wants. I feel their exhaustion and worry. I share their overwhelming responsibility and increased love for the person they care for. Without even exchanging words, I feel connected to them. I want to know about their story. How do they manage all they have to do? What keeps the love growing and resentment at bay? When would they have time to share their thoughts and feelings?

I’ve greatly benefited from this experience and appreciate you as a reader or a guest author. If you’d like to share your story, I’d love to publish it on Uniting Caregivers. It may seem like a daunting task, but I’ll help and support you any way needed. Your experience will be valuable to me and to others. We are in this together, encouraging and inspiring one another.

Four Thoughts on Resilience

Great thoughts which accentuate my article, The Importance of Raising Resilient Children. 

 

 

 

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It is the one that stands in the open where it’s compelled to struggle for its existence. Against the winds, rains and the scorching sun.”

 

 

 

 

 

 

 

 

 

 

 

What thoughts can you share on the importance of being resilient?

 

Anticipating the New Year

As a child, December was a long month of anticipation and wonder. The excitement in the air nearly took my breath away. I felt gloomy when the Christmas season and school break came to an end. The thought of having to wait another twelve long months or 365 days to feel that kind of joy and excitement was dreadful. Many Christmas’s have come and gone and the month no longer brings a school break, in fact it’s just the opposite.

As an adult, December can feel like a month of endurance. At work it’s a month of year-end bookkeeping and preparations for the new year. It would be a busy month all on its own, but throw in Christmas and all the beautiful decorations, sounds of terrific music, pleasure of parties, delicious baking and delightful shopping because everything is on sale. It’s no wonder we feel exhausted, overwhelmed and often get sick.

At the end of the year I always suffer with melancholy. As a child, it was because the Christmas season and break was coming to an end, as an adult it’s because I remember the year’s resolutions I didn’t achieve and other unfulfilled expectations. I’m plagued with wondering how I can better plan for the new year and actually complete my goals.

 

I commit the sin to often  of comparing myself to others and what they have accomplished. I question why I can’t do better. The antidote to melancholy is optimism and I’m giving myself a healthy dose of it over the next week as I prepare for a new year, new beginnings and a better me.

A change of heart occurs when I reflect on the blessing of family, friends and experiences of the past year with grateful heart. When I’m thankful I find peace with my life and my relationships. This is what December and every other month should feel like—joy, peace, gratitude and goodwill to all mankind. If you are reading this, I thank you for being a part of my life’s journey.

I’d like to share with you my plans for the new year. In the past, Uniting Caregivers has had three categories: Sunday Stories, Tuesday Tips and Thursday Thoughts. I’ve decided to drop the day and have  categories of Stories, Tips and Thoughts. I still plan on posting three times a week, but without the days listed two stories may be posted in a week or two tips, or two thoughts depending on the inspiration that week. If a guest author has written two parts to their story it could be posted simultaneously on a Sunday and then on Tuesday. At least one inspirational story will be posted every week and the follow up tip may be shorter than in the past.

 

 

The Benefits of Support Groups and Conferences

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.

Twelve Things I’ve Learned About Grief

Grief is not easily discussed or thought about, yet it is something we all experience. My Sunday post, The Dreaded Phone Calls, caused me to reflect on the grieving process. Twenty-three years ago I had limited experience with grief and I’m still learning about the grieving process. I’ve done some research and realize it’s helpful to know what you’re facing and to know you’re not alone. For that reason I’d like to share what I have learned through my experience and research.

1) Grief is a normal part of life. If you love, it is inevitable and it doesn’t take the death of a loved one for it to come. It can appear with the loss of a job, relationship, and opportunities. A life altering accident or illness will cause one or possibly all three, which compounds the grief.

2) The pain is intense. I was not prepared for the emotional pain level I felt. It far out-weighed the physical pain of a broken collarbone and bruised body. Don’t be surprised when emotional pain manifests itself more severe than any physical pain you have experienced.

3) It takes time to heal. My world as I knew it ended, but life does go on, slowly. A new normal does come. You may be okay one minute, one hour or one day and not the next. Learn to accept what your heart and mind are feeling and work through it. Each of us grieves differently. Some situations and circumstances take longer than others. Be patient with yourself and others.

4) It’s okay to cry. No apology is necessary and you should do it as often as you need without feeling weak or embarrassed. But it’s okay to laugh, too. Don’t feel guilty for feeling positive emotions even when dealing with a loss.

5) Take care of yourself. Do healthy things you love even if you don’t feel like it. Eat healthy and take time to exercise. You may feel like you’re just going through the paces of life. Remember, you are still living and need to take care of yourself.

6) Don’t shut people out. It may appear by doing so you will save yourself from more pain and the self-pride of doing it alone. Most people want to be strong and do things on their own. However, cutting yourself off from relationships or refusing someone’s help can hurt you and others. It’s okay to ask for help and it’s okay to need people. Tell friends and family specifically what you need. They will probably thank you for doing so.

7) Grief is a mixture of emotions. I felt despair, numbness, emptiness, guilt, anger, confusion and sadness. These emotions materialized at different times and in different ways. I didn’t like it or want it, but there was no going around it. The only way to get through it is head on.

8) Don’t hide from the pain. If you do, it will fester and grow and consume you. It’s tempting to rationalize, if I don’t think about it, it’ll just go away. While I do believe being busy helps—it’s not an escape from grief. Some people use hobbies, work, relationships or even liquor, sex, drugs, in hopes it will take the pain away. If you are using anything to try to numb the pain, it will make things worse in the long run. Seek help if you’re dealing with the sorrow in unhealthy ways.

9) No one will respond perfectly to your grief. People, even people you love, will let you down. Possibly they are too full with their own grief. Friends you thought would be there won’t be there and people you hardly know will reach out. Be prepared to give others grace. Be prepared to work through hurt and forgiveness at others’ reactions.

10) God will be there for you. Prayer is the gateway of communication with Him. He understands your emotions better than anyone. Your prayers may not be answered the way you want them to be, but without a doubt, He is near to the brokenhearted.

11) You will ask “Why?” If you’re like me, you’ll ask it many times and you may never get an answer. What helps is asking, “How? How can I change and grow from this, how can I become better, how can I embrace others?”

12) Grief changes you. Life will not be normal and routines may need to be different. Try to keep as much structure as possible in your life and minimize the amount of change. Grieving takes most, if not all, of your strength. Do not worry if you don’t have as much energy as you did before your loss. Don’t feel guilty about doing less. Realize anniversaries, holidays, birthdays, places, objects and people may all trigger memories surrounding your loss. Be prepared for a gush of grief during these times. The process of grieving makes a person change who they are emotionally, physically, mentally and spiritually. It is okay to change. Embrace the change rather than fight it.

What things have you learned about grief that you wish you’d known before your loss?

Resources:

“What To Know About Grief” by Kelly Baltzell M.A. & Karin Baltzell Ph.D                                “15 Things I Wish I’d Known About Grief” by Teryn O’Brien

 

Caregiving Reflections

Written by, Dianne Breitling

Mother’s Day has become a time of reflection for me as I remember the final years my mother and I spent together. The hours we shared as well as those spent doing things for her are precious to me now, filling my heart with gratitude for circumstances which allowed me this privilege.

My mother had spinal disc problems which resulted in several surgeries and constant pain. She also had to have both hips replaced. Because of her physical limitations, my father became her caregiver doing all of the cooking and housekeeping for about fifteen years. Late in life my mother developed severe arthritis, which greatly limited the use of her amazingly creative hands. Through it all, my mother could always be seen with the most wonderful smile on her face. She loved people more than anyone I have ever known. For the final eighteen months she was in her scooter most of the time because the pain had become more than she could bear when walking.

At age 85, my father had a minor car accident, making him feel unsafe on the road. His wise decision to stop driving was the start of my journey as a caregiver for both of them. Since I lived close by, I gladly took on the responsibility to drive them wherever they needed to go such as doctor and dentist appointments, getting haircuts, and shopping as well as picking up prescriptions or any other household or personal items they needed. This was a difficult transition for my father since he had been the caregiver for my mother for so many years.  He went from doing everything for the two of them to depending on others in a relatively short time and each loss was painful for me to watch.

Both of my parents became so comfortable with me doing things for them that even when my siblings offered to help by taking them to their doctor’s appointments, they wanted me to do it because I was familiar with their needs and knew the doctors they were seeing. They also preferred me to do the shopping over my siblings because I knew their likes and dislikes.

Dad became very ill and had an emergency colostomy, changing our world drastically. I spent countless hours with him in the hospital trying to get answers from the medical team and worrying that we might lose him, while still caring for my mother’s needs. When he returned home it became clear I could not carry on with everything I had been trying to manage while adding the new burden of changing his colostomy bag regularly. My brother would sometimes do this, but he had irregular work hours and lived further away so it was difficult for him to be there at the needed times. The responsibilities had fallen on me because of how close I lived to them and because I was the only child who did not have a full-time job.

After three years and growing needs, I requested each of my siblings to take one day to check on them. They were asked to make sure our parents had everything they needed and to help with dinner if necessary. When our father was in the rehab center, the scheduled person for the day was responsible to lay out breakfast, medications and check on mother by phone in the morning. This gave me two assigned days instead of the five to seven days I had been used to, but even that became difficult because if someone couldn’t meet their obligation my mother would call me and ask me to come over. Calls early in the morning or late at night were a regular occurrence. Often I would hear from my parents and my siblings that I was a life-saver or they wished I didn’t need to do so much, but after years of struggling with so many responsibilities, those words were not enough. I can see now it would have been so much better if I had been able to convince my parents to let me hire some outside help, but when I was in the middle of the experience, it was hard to know what to do. Looking back usually changes the perspective and solutions become clear.

In 2010 my father was hospitalized with a severe infection (MRSA) and while in rehab, he agreed to move into an assisted living center. My brother, sister and I made the arrangements, but at the last-minute he changed his mind. He didn’t want to give up the little bit of independence he still had, making those last days in his home emotionally difficult for both of us. I wanted to help make it possible for him to live at home, but told him when he could not prepare their meals that would no longer be possible. Both parents refused the idea of having Meals on Wheels delivered or having someone come in to cook and clean a few times a week. At this time the emotional strain was increasing because they knew I was making it possible for them to live in their home. This created feelings of gratitude, but also resentment towards me because I had too much say about what happened to them.

After a second bout with the MRSA infection, my father realized his strength wasn’t returning and once again asked me to make arrangements for them to move into an assisted living center. My father only lived there for five months before he passed away. My mother was lonely and continued to need attention after his passing. My siblings and I continued our daily schedule of checking in on her for the additional thirteen months of her life at the assisted living center.

Through all of the years of caregiving, my husband was always supportive. Not only did he spend time doing many things for them, he never complained when he came home to an empty house and no dinner or when our lives were put on hold while I met the needs of my parents.

As I reflect on the time spent caring for my aging parents, I realize the major challenge was recognizing the weight which came from the cumulative effect of the responsibilities taken on. The coordinating of two households with the added worry and care of their declining health was extremely difficult.

While I missed spending time with my children and grandchildren during this time, I am grateful I was given the strength to care for my parents during their final years. When I look back on this experience, it is clear that the blessings far outweigh the sacrifices. My feelings are joy and comfort because I have no regrets. I’m happy they are in a better place without health complications and pain; but      I love and miss them both.

Thank you Dianne for your caregiving example and for sharing your experience on Uniting Caregivers. What a wonderful daughter and big difference you made in their lives.

Live and Learn

Several years ago my sister Rosanne said, “I often hear the phrase ‘you live and learn’, well I’m tired of learning, I want to start living!”

We laughed and the memory of the conversation still makes me smile. We were both raising children at the time, and learning all sorts of things we didn’t ever expect to learn. It’s one of those conversations etched in my memory that brings sisters or friends close as they share experiences.

It’s true sometimes we don’t get to choose what we learn. As a caregiver, often I have thought I didn’t sign up for this course, or I don’t want to know about this. There’s a certain amount of responsibility that comes from knowledge, so sometimes I think, ignorance is bliss!

In reality, it’s the unknown which causes fear. Whether it’s about a disease, injury, grief, or even raising children, the more we learn about it, the better we can handle it and usually it then becomes less dreadful. Knowledge gives us opportunity to improve and cope better. Knowledge makes us useful and compassionate. It’s the key to understanding others as well as ourselves. Knowledge makes a difference in how we live.

Because we’re always learning, we change through our experience and knowledge, therefore our relationships change. Some get better, some seem to stagnate and some come to an end. My experience is that every relationship, no matter how long it lasts, serves a purpose. Some teach us to be better than we are. Some show us what we don’t want to be, while others remind us just how blessed we truly are. Some keep pushing us forward helping us become what we are meant to be. Every relationship teaches us something. Don’t regret those that end for they were worth the effort if you grew from the relationship.

So when you get a course you didn’t sign up for or have a relationship that changed or ended, look at it as an opportunity to learn and grow.