August 2019 Newsletter

Normally I post Uniting Caregivers Newsletter by the first of every month, however life is not normal. I lost my dad unexpectedly last month. If you follow my blog, you know how involved he’s been in my life, especially in helping me meet the challenges of caregiving. He’s been my rock, or the wind in my sail, whichever was needed. We built a home together after our car accident and we’ve lived with my folks for the past twenty-three years. Dad made sure that it was wheelchair accessible to make our life easier. He’s been able to repair whatever needed fixing. Learning to live without him feels overwhelming and some days impossible.

Dad fought heart disease since 1985 with first a triple bi-pass, then 10 years later stents. Two years ago, he had a heart valve replaced, and then needed a pacemaker. He was determined to live life to its fullest and was disappointed when the doctors told him there wasn’t anything more they could do to improve his heart function. Unwavering, he set out to make the best of it, just as he always did.

When Dad had an illness he often said, “I just need to work it off.”  He grew up on a farm and made his living working construction. He was a talented heavy equipment operator but never shirked from digging with a hand shovel if needed. He played as hard as he worked. If he wasn’t physically active, he was sleeping. He believed activity would cure whatever ails you and he worked up to his last day.

Sometimes his philosophy caused contention between us as I tried to get him to slow down. My attempts irritated him, and his continued busyness frustrated me. I just wanted to preserve him. He didn’t feel he needed preservation. My worry became reality when a massive heart attack took him instantly. I had no warning that day would be his last. I’d almost become accustomed to the fear I’d felt for the past two years that it would end just as it did. The day it happened, I realized it probably was the only way for him. No long suffering. Not even a day lying in bed. He left this world in the mountain he helped develop with roads, waterlines and cabins over the past 68 years. He referred to this high land as paradise and while driving from one job to another job, he departed from his earthly hill haven to a heavenly one. Fortunately, he was on a private road and no one else was injured. We’re grateful for his 91 years, but we’re left mourning and wondering what he’s working on now. I’m sure his spirit is still busy. 

Work didn’t cure Dad’s ailments, but it sure made him feel better. He lived happy with his trials and health limitations. I’m inspired by people who push through hardships. Energetically working towards a goal regardless of pain or discomfort. Pressing forward despite discouragement. Making a concentrated effort to pull upward and out of whatever obstacle is keeping you down. Day-by-day I practice in hope of making improvements. I don’t know how to live without Dad because I’ve never had to until now. Adapting to a lifestyle change takes time. I’m trying to be patient with myself as I learn and adjust.

Family and friends who share our love for my dad lighten the darkness. Appreciation has grown for friendships we’ve made through support groups who may not know my dad but still share in our sorrow. Friends who understand another aspect of our complicated life such as living with the effects of a severe traumatic brain injury and epilepsy. I’m so grateful for people who surround us and strengthen our abilities to meet our challenges. Especially in difficult circumstances we can’t have too many friends!

If you’re feeling alone, overwhelmed with responsibilities, or mourning, take advantage of a support group. Meeting with others in like situations is uplifting and makes us stronger to meet challenges. The experience and knowledge shared is beneficial. Expanding your network of friends is priceless, especially during hard times.

The purpose of this newsletter is to share information about organizations which I know about in hopes to help you. In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please add them in the comments or email Barbara@UnitingCaregivers.com.


FREE SUPPORT GROUPS FOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS

August 1, 2019Utah Valley Aphasia Choir meets at 6-6:45pm on the 1st Thursday of the month, prior to the support group at the BYU Speech and Language Clinic. It’s for all brain injury, and stroke survivors, caregivers, family, and friends. Come and enjoy the power of music and friendship together. Everyone interested is welcome to join.

August 1, 2019Utah Valley Brain Injury Support Group meets at 7-8:30 p.m. on the 1st Thursday monthly at the BYU Speech and Language Clinic, Room #177. Address: 1190 North 900 East, Provo, UT 84060. ​For questions call Lori Johnson at (801)422-9132.

August 13, 2019 – Brain Injury Alliance Support Group for Adults, 6-8 p.m. meets every 2nd Tuesday monthly at Sanderson Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. This social group is for caregivers and survivors. Come join us for a birthday celebration with dinner and games this month. Bring your favorite topping, side dish or dessert to share if you’d like. For more information, please call Jennifer (801)386-2195, or Beth (801)585-5511.

August 15, 2019 IMC Caregivers and Survivors Education and Support Groups, meets at 7 p.m. every 3rd Thursday monthly at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1.

Caregivers meet on the 9th floor, in the Neuroscience Conference Room. This month Katherin Kitchen Andren, PhD will be discussing Advocacy and Resources for Caregivers.

Survivors meet on the 9th floor Gym. This month Dr. Karen Blackwood will be speaking on Emergency Preparedness for Individuals with Disabilities. For more information, please call (801)314-2086 or email Emily Redd emily.redd@imail.org

August 27, 2019University of Utah Brain Injury Support Group meets at 7-8 p.m. every 4th Tuesday monthly usually at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. This month we’ll meet at Sugar House Park, the Fabian Lakeside Pavilion for a summer picnic. Sandwiches provided. Please bring a side dish to share. For more information please call Annie Wallace at (801)581-2221.


FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY in Murray, Utah

Aphasia Talking Practice Group – Meets every Tuesday, Noon-1 p.m. at 5770 South 250 East #G50

Meditation Group – Meets every Wednesday, 3 p.m. at 5770 South 250 East Cafeteria Conference Room

Cognitive Skills Group – Meets every Thursday Noon-1 p.m. at 5770 South 250 East #G50

Contact: Emily Redd at Emily.redd@imail.org


FREE EPILEPSY SUPPORT GROUPS FOR THOSE EFFECTED BY SEIZURES

Together we share coping strategies, provide encouragement, comfort and advice from people with common experiences. For more information contact Margo at (801)455-6089 or Utah@efa.org.

August 1, 2019Logan Epilepsy Support Group for All meets at 7 – 8 pm on the 1st Thursday at the Logan Regional Hospital 500 E. 1400 N., Logan, UT 84341.

August 8, 2019 – IMC Epilepsy Group for All, meets at 7:00 – 8:30 p.m. on the 2nd Thursday at the Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT Bldg. 6, 1st floor – CR2 in the Doty Education Center.

August 14, 2019 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.

August 21, 2019 – SLC Epilepsy Group for All, meets at 6:30 – 8:30 p.m. on the 3rd Wednesday at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

August 22, 2019 – West Jordan Epilepsy Group for Teens, meets at 7 – 8:30 p.m. on the 4th Thursday at the West Jordan Library, 8030 S. 1825 W., West Jordan, UT.  Come and enjoy an activity and meet other teens with epilepsy. There are two teachers overseeing this group.


HELPFUL WEBSITES:

http://www.caregiver.org (online webinars for caregivers)

http://www.braininjury.com (medical, legal, information resource)

http://www.abta.org (brain tumor education and information)

http://www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

http://www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

http://www.msktc.org/tbi (TBI Model Systems Knowledge Translation Center) national leaders in TBI research and patient care.

http://www.nationalmssociety.org/Resources-Support (resource for those with MS)

http://www.epilepsy.com/utah and/or http://www.epilepsy.com (seizure education and support by state or national)

https://biau.org (resource for those with brain injury)

http://www.brainline.org (preventing, treating and living with TBI)

http://www.uilc.org (Utah Independent Living Center is a resource center which enhances independence of persons with disabilities)


ACTIVITIES TO DO WEBSITES:

https://store.usgs.gov/access-pass (free pass to National Parks & Federal Land Agency areas)

https://twilightinsight.wordpress.com/hobbies/hobbies-or-healing-the-brain/tbi-and-selecting-a-hobby (select a hobby – ideas especially for TBI survivors)

http://wanderookie.com/blog/2015/07/27/12-beautiful-wheelchair-accessible-trails-in-utah
(wheelchair accessible trails in Utah)

wasatchadaptivesports.org (Wasatch Adaptive Sports)

http://www.discovernac.org (National Ability Center)

https://healthcare.utah.edu/rehab/support-services/trails.php (University of Utah TRAILS Program)

https://www.meetup.com (meet up groups)


SHARING WEBSITES:

http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

http://www.unitingcaregivers.wordpress.com (caregivers sharing stories, tips and thoughts)


Thank you for reading. I hope you found the information helpful and will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send it to you.

Posted in Newsletter | Tagged Annie Wallace, Beth Cardell, Brain Injury Alliance of Utah, Brain Line, Caregivers, Caregivers and Survivors Education and Support, Emily Redd, epilepsy, Epilepsy Foundation of Utah, Intermountain Health Care Neuro, Intermountain Medical Center, Jennifer Gee, National Ability Center, Rocky Mountain University, Support Groups, Survivors, Tanja Kari, Therapy, Trails Adaptive Sports, Traumatic Brain Injury (TBI), University of Utah Brain Injury, Utah Valley Brain Injury Support Group | 2 Replies

4 thoughts on “August 2019 Newsletter

  1. Barbara,

    Thank you for writing this. I miss your dad. He was such a great man with a great love and a smile for everyone. I hope you are doing well, despite your new challenges and your longing for your dad. We love you and Mark, and wish you nothing but the best.

  2. I loved reading your entry this month. It’s hard to believe that your Dad is gone but he will never be forgotten. I loved him so and am so thankful that we have the memories of your DAd that we do. I’m sorry you are having to live without him for a time but he will be waiting until it’s your turn to join him. I loved what he represented and will miss his smile and love. YOur Dad really was as perfect as you could get on this earth and am so blessed to call him my Uncle and second Dad. I love you Barbara and am hoping you are feeling peace during a time of loss and sorrow.

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