Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

How to go From Surviving to Thriving

From Surving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

  • Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
  • Know their ultimate goals so that you can look beyond your own
  • Get their loved ones involved—it will empower both them and the patient

For loved ones:

  • Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
  • Remember to take care of yourself
  • Ask questions, stay involved

Patients:

  • Suddenly, everything has changed
  • Set goals, work toward them each day, ask for help
  • No therapy is beneath you
  • It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

  • Hope
  • Pray
  • Love
  • Believe in miracles”
2015 conference picture

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.

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.

Finding Relief

Happy

We have all had our share of dark days where grief, worry and sadness overcome us. If you have life and love you can’t escape heart ache. In my article The Blessing of Comfort, I reflected on what got me through the darkest hours after the car accident. The empathy from an EMT, hearing my sister-in-law’s voice say she would make sure my parents knew, the gentle care of nurses and a Priesthood blessing from one man I hardly knew and the other a complete stranger.

I am grateful for caring people who bring comfort and I strive to be this kind of person, as I’m sure most of us do. However, there are times and situations when we are alone in our sadness. We can’t always count on other people to help us feel better. This is why I believe religion is important. Taking time to ponder and pursue what you believe gives inner strength. Your beliefs may be different than mine and that’s okay. I rely on mine to help me past the sorrow and I thank God in my prayers every day for the peace and comfort I find in my religion.

When friends and family can’t be there, where do you find comfort?

We belong to a monthly support group for brain injury survivors and caregivers. A few months ago the topic was on self-care and where we find relief from sadness. Some of the things mentioned were: gardening, reading a good book, bubble baths, mediation, running, swimming, walking, playing sports and other fun physical activities. Of course I mentioned writing, because it’s therapeutic for me and I started when Mark was in rehab.

It is important to actively fill our souls by doing things which bring us enjoyment in life. Sometimes it’s hard to make time, especially when you’re a caregiver, but as stated on the airlines, in a crisis you have to put your own oxygen mask on before you can help another.

In our busy lives it’s easy to go through a day doing all the tasks which need to be done without thinking about what brings us comfort or joy. If we don’t stop for a minute to contemplate and be thankful for those things which brings light into our life, it becomes dreadful and empty. By recognizing, appreciating, and doing those things which bring happiness, we strengthen in ourselves and increase our ability to fulfill the unwanted tasks in life. Consider what brings you comfort or joy, be grateful for those things and seek opportunities to do them. Make your own bolster list to help you avoid the sadness and on those days when it arises, you will find solace and some respite in doing something you enjoyed.

When you realize what gives you a break from the everyday grind, make it a priority in your life, not to consume your whole day, but to shed the necessary light which will enable you to navigate the journey.

I look forward to reading your thoughts and the actions you take in finding relief in the comment box below. By sharing you might reinforce an idea or give another person a thought which could help them on their pathway through life.

Thanks for reading!

Cassidy’s Story

Written by, Deidre Pickering

Cassidy, a few days before her diagnois

Cassidy, 4 years old, a few days before her diagnose

Our sweet daughter, Cassidy was diagnosed with Type 1 Diabetes on Feb 17, 2010. I wish I would have known the warning signs for diabetes, but when your four year old gets sick it’s not the first thing that pops into your head. Cassidy is my oldest of three, so I thought she was going through a growth spurt, losing her baby weight and eating and drinking more. She seemed to lack energy all the time.  She had been potty-trained for a couple of years and had recently started having accidents wetting the bed at night.  The day I took her to the doctor I thought she was coming down with a cold or had strep throat. She was a very active child so when she didn’t get out of bed that morning I knew something was wrong, but thought some antibiotics would be the fix.

I made a doctor’s appointment and took her bothers Dylan (two years old) and Brody (three months old) to my mom’s house. When we got to the doctor’s office they did a strep test, which was negative, but I knew something was not right with her so I kept talking to the doctor. After telling him how she was thirsty all the time and never seemed to get enough to eat, the doctor suggested a urine test. While waiting for the results, which seemed like forever, Cassidy just slept in my lap.

I would have never guessed the results of the test in a million years. The doctor tried explaining what life would be like with diabetes and what the next step would be, but I was in complete shock. He sent us straight to Primary Children’s Hospital and he called them to let them know we were on our way. I called my husband John, but can’t remember our conversation because I was in a daze and so scared for Cassidy. She was already afraid of needles and blood. I couldn’t believe this was happening to her.

I remember lots of tests, tears and taking classes to learn how to take care of our daughter. It was very overwhelming to know that after we left the hospital, Cassidy’s health would be in our hands. We spent two nights in the hospital with Cassidy.  Most of the time was spent being educated on how to care for someone with diabetes. It added stress that only one parent could spend the night with her at the hospital. John was the obvious choice since I was nursing Brody. Leaving her there every night was the hardest thing to do, but knowing John was there for her brought me comfort.

Trying to explain to a four year old we needed to poke her finger (up to ten times a day) and after the poke she would need a shot before she could eat anything was heart-breaking. I still wish every day that I could trade spots with her.

The first year of her diagnosis was the hardest trial I have ever been through. Calculating Cassidy’s insulin dose was very complicated and the toughest part was learning how to carbohydrate count.  Every carb she ate had to be counted for in order to give her the correct amount of insulin. We learned quickly that serving sizes can be very tricky to calculate while making sure she’s eating healthy.  Unfortunately fruits and vegetables don’t come in a “standard” size. Preparing meals turned into a nightmare of math problems. I spent more time calculating carbs for a meal than actually cooking it.

We were instructed to give Cassidy her insulin before she eats so that her body has time to absorb the insulin before her food begins to digest.  The problem with that is it means she has to eat whatever we calculated the carbs for.  I remember the first birthday party she went to a few months after her hospital stay. She really wanted a piece of cake. I had thought the slice of cake was Cassidy-sized so I gave her a shot of insulin and she started eating. Half way through the cake she was full.  Now she had too much insulin and her blood glucose level would drop low if she didn’t finish the cake. I was standing there with other moms and said, “sorry sweetie you need to eat all of your cake.” I got some strange looks from the other moms. I must be the first mom who ever forced their child to eat all of their cake.

I was so scared.  Could a four year old tell if their blood sugar was getting too low or high? I was afraid to let her out of my sight because she might drop so low that she would pass out and start to seizure.  We had to test her blood in the middle of the night to make sure her levels were in the correct range so she could make it until morning without needing to eat something. It took a little while for her to understand there was no getting out of finger pokes and shots. This wasn’t a passing phase.

The American Diabetes Association (ADA) reached out to me through their Family Link program and I was able to talk to families going through the same thing. It was nice to hear from others that the first year is the hardest and it does get better. I didn’t believe them for the first few months. I got the hang of carb counting and Cassidy learned tell us when she felt like she was low. I am now a walking carbohydrate counting expert.  Even when Cassidy is in school my brain is still calculating the carbs on every plate of food I make for myself or her brothers.

Cassidy, 5 years old

We found out about the Step Out walk with the ADA and Cassidy was excited to be a part of it. In the last four years she has raised more than $6,000.00 towards finding the cure for diabetes. She has volunteered with the ADA to help fill bags with goodies that they give to newly diagnosed patients. She also was a spit donor to help train diabetes sniffing dogs.

Cassidy with her favorite cat showing pump

Cassidy with her best friend – showing pump

Cassidy amazes me every day. She is my hero and example of being strong. At age six she started poking her fingers by herself. After the first year she was able to get an insulin pump so now she doesn’t need shots for Insulin. It was tricky getting used to the pump but she likes it a lot better because she has more freedom. If she wants seconds at dinner she doesn’t need another shot. She knows how to work her pump and with help counting carbs she can give herself insulin.

Our life has changed since she was diagnosed,and she has adjusted very well. Our family has been a huge support to us. I don’t know what we would do without their love. We can leave Cassidy now for a few nights with John’s sister, Michelle and she knows how to take care of her. We appreciate Michelle taking the time to learn how to take care of her. I know Heavenly Father has faith in us to take care of Cassidy and know she has been given the strength to handle this challenge. We are so proud of her.

The Pickering Family 2012

The Pickering Family 2012

Thanks Barbara, for giving me this opportunity to share her story. This was the first time I’ve written it and it was harder than I thought it would be.

Editor’s Note: Thank you, Deidre for sharing. We’re also proud of Cassidy, for all the good things she’s accomplished and for the way she’s handling this challenge. Give her a hug and thank her for inspiring us!

Strength in Numbers

Being StrongThe Winter Olympic Games are upon us and it is evident there are countless hours in many years of training for the athletes to compete. The hosting city and country plan and prepare four years and it’s a proud time for them as they show off their beauty and hospitality to the world. It’s sensational to watch it all unfold. Various athletes from all over the world coming together in Sochi to do their very best, showing their strengths and abilities.

It’s obvious there are many people behind the athletes as they prepare for the games. Besides family and friends that encourage and help them, there are coaches, technique specialists, apparel consultants, etc. All have the same goal and vision for the athlete to succeed. They’re amazing to watch and usually you’re only seeing one person competing, but in reality there’s a team of people standing behind the one athlete you’re watching. All making their success possible.

We all need others to succeed in our endeavors. No one makes it alone. It’s wonderful to have family and friends help and encourage us. They hear and see us with their hearts. It’s also beneficial to build relationships with others who share your goals, stress and struggles. They hear and see us with their experience. A meaningful and comforting way to boost one another. This is my goal with Uniting Caregivers. Together we can learn and improve our abilities. Sharing our stories and how we cope encourages and gives us strength.

Support groups are formed for most anything you are dealing with; addiction, brain injury, cancer, divorce, epilepsy, mental health, stroke and the list goes on. Mark and I have benefited from the Brain Injury Support Groups and the Epilepsy Support Group. We have learned much and it’s comforting to be with people who know and share our experience.

Tomorrow night a friend and caregiver of a brain injury survivor, Laura Nordfelt, is starting a new Caregiver Support Group in Murray, Utah. The meeting is in conjunction with the Brain Injury and Stroke Survivor Meeting from 7-8 pm. It will be held at the Intermountain Medical Center, 5121 South Cottonwood Street, Building 6, Classroom 8.  The caregivers and survivors will meet first together and then split into two separate groups. The facilitator, Lynn Anderson, who has a MS in Social Work will meet with the caregiver’s group.

Support groups are a wonderful way to share and improve your experience. I encourage all to Goggle “support groups” in your area to find the help and support you might need. There is strength in numbers!