Recalculating

It’s hard adjusting to daylight saving time, and every March I wonder who came up with the idea. Losing one hour in the Spring only to gain it back in the Fall doesn’t make any sense to me.  I’m still working on getting all the clocks changed in my house, and my body is still trying to adjust to the lost hour. Life is full of adjustments. Do we really need to add our clocks to the list?

The theme for our caregivers support group went perfectly along with the changing of clocks and adapting to the loss of an hour. Reviewing what I learned Thursday night on the subject titled, Adjusting to Life After a Brain Injury, will be beneficial to you because it can relate to any other health issue, or difficult circumstance that dramatically changes the direction of life.

Slide3

Our presenter, Kerrie Neu, has been a caregiver for nearly 20 years. In June 1998, her husband, Laurent, was in his last quarter at the University of Utah, majoring in Communications. He walked in the graduation ceremony since it is only offered in June. He would finish up his classes in the Fall. However, a motorcycle accident in Salt Lake City, on July 4th changed those plans. He was in a coma for several weeks and in the hospital for three months with ongoing outpatient therapy.

Slide27Kerrie brilliantly used a GPS theme for navigating in unfamiliar territory. They had to recalculate life and reroute to their best resource, family. With two small children ages four years and fourteen months old, they moved into Laurent’s parent’s home for three years. “It’s hard not to look back and want to make a U turn,” Kerrie said. “With brain injury, there’s no going back to the life you had before.”

Slide7At first, Kerrie said she lived in survival mode with her main focus on recovery. Some of the other short term adjustments we discussed were, home structure renovations like ramps and a modified bathroom, which may be necessary if the survivor needs a wheelchair. Other changes are family responsibilities, employment, and finances.

Some of the long term adjustments discussed were schedules for therapies and doctor appointments. Ongoing fatigue may make a schedule nap-time necessary. Employment is a big one. Is working a possibility? If so, will it need to be part time work, or possibly a new job? Financial concerns and changes in family roles can continue long term. Daily activities may be altered by physical and cognitive capabilities. Social skills may vary, especially on days the filters aren’t working proficiently.  Some friends and family may find it hard to relate to the new situation and distance themselves.

Slide11

Click here to read:                                                             Holland Instead of Italy?

Kerrie pointed out that we can’t see into the future and we don’t know what our new destination will be. She suggested celebrating milestones, moments, and memories along the way. On our journey there will be times we need to recalculate. Be flexible and open to new ideas. Discover new routes and destinations. Find joy in every-day moments.

My favorite points Kerrie made were:

*Living in the past isn’t the way to enjoy the journey we’re on now. Look for things every day that bring you enjoyment. Make today worth remembering by:

  • Mindfulness in the morning, “Today I will celebrate one thing.”
  • Mental photos, or real ones, “I want to remember this moment.”
  • Nightly reflections, “What can I celebrate or remember from today?”

*Our bodies are the vehicle that gets us through life. A car needs gas and repairs. Likewise we need to navigate to doing whatever fills us up. When we break down, we should do what it takes to get the help for a repair. Don’t forget to stop at the rest areas when needed.

* Four tasks of grief by J. William Worden

  1. Accept the reality of the loss
  2. Process your grief and pain
  3. Adjust to the world with your loved one being different
  4. Find an enduring connection to the person while embarking on your own life-

A counselor can be helpful in this process since we experience ambiguous grief or ambiguous loss.

Slide23*The GPS doesn’t yell at you when you make a wrong turn “Idiot, why did you turn that way? If you had only turned left instead of right we wouldn’t be in this mess!” It simply says in a calm voice: “Recalculating,” and gives new directions.  We should talk to ourselves in that same patient way, with self-compassion.

Slide26

 

*Self-compassion is:

  1. Self-kindness: Be understanding of yourself when you suffer, fail, or feel inadequate
  2. Connectedness: Recognize suffering and personal inadequacy is a shared human experience
  3. Mindfulness: Balanced approach to negative feelings: neither suppressed nor exaggerated

See: www.self-compassion.org by Kristin Neff

I enjoyed this topic and Kerrie Neu did an excellent job presenting it. Our life is full of recalculating and adjustments. It occurred to me that maybe the purpose of daylight saving is to give us some adapting practice for much harder experiences that come our way. Because honestly, who has an extra hour to lose?

Click to view slide presentation in full: Navigating After a Brain Injury

Presentation Title

 

Advertisements

March 2018 Newsletter

MarchluckThe life of a survivor may not be considered lucky, but it’s made easier by knowing there are others who understand and share similar circumstances. I am a caregiver to a brain injury survivor who also has epilepsy. I’ve gathered information on this month’s support groups and therapy services offered in the Salt Lake Valley for those involved with these health issues. If you live outside of this region, or are affected by another kind of condition, I encourage you to look for support groups near you relating to your concerns. Your luck can improve as you learn from and encourage others in like situations.

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 email Barbara@UnitingCaregivers.com


MarchLeprechaunFREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

March 13, 2018 – 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 all caregivers and survivors. All are welcomed to share a main dinner dish together with games afterwards.  Bring a side dish or dessert to share if you’d like. Call Jennifer (801) 386-2195, or Beth (801) 585-5511 for more information.

March 15, 2018 – IMC Caregivers and Survivors Education Groups, 7-8 p.m. Meets every 3rd Thursday monthly at IMC Cottonwood Medical Tower (TOSH Campus) 181 E. Medical Tower Drive, Murray, Utah. Caregivers meet on the 1st floor conference room and the Survivors meet on the 2nd floor conference room.

Caregiver’s topic: It Takes a Village: A Caregivers Perspective – by Chris Benda. She will share with us how she finds and uses resources available.

Survivor’s topic: Social Skills, Communication & Relationships – by Summer Rolin, Psyd. She will give ways for helping others understand your injury.

March 27, 2018 – University of Utah Brain Injury Support Group 7-8 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. This month’s topic: Brain Injury Resources by Glen Lanham. Learn how the Brain Injury Alliance of Utah can help you. Please call Ryan Pello or Annie Wallace at (801) 581-2221 for questions.


March1FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY 

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

Parkinson’s Talking Loud Group – Meets every 2nd Wednesday of the month-3:00pm at 5770 South 250 East #G50

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

Contact: Dr. Russo at antonietta.russo@imail.org


March3FREE EPILEPSY 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

March 1, 2018 – Epilepsy Group for Parents, 7:00 – 8:15 p.m. Meets every 1st Thursday of the month at the Riverton Library Auditorium, 12877 S. 1830 W.

March 8, 2018 – Epilepsy Group for All, 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month. New 2018 Murray location is at the Doty Education Center – Intermountain Medical Center, 5171 S. Cottonwood St., Bldg. 6, 1st floor – CR2.

March 14, 2018 – Epilepsy Group for All, 7:00 to 8:15 pm. Meets every 2nd Wednesday of the month at the Provo City Library – 555 N. University Ave. New EPILEPSY SUPPORT GROUP in Utah County! 

March 21, 2018 – Epilepsy Group for All, 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

March 28, 2018 – Epilepsy Group for Teens, 7 – 8:30 p.m. Meets the 4th Wednesday monthly at the West Jordan Library, 8030 S. 1825 W., West Jordan, UT. There are two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.


ReadyToRoll


Bright Ideas

HELPFUL WEBSITES:

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

http://www.tbicommunity.org (online educational programs)

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)


Uniquely abledACTIVITIES TO DO WEBSITES:

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

https://wildlife.utah.gov/watchable-wildlife-for-disabled.html (watchable wildlife for disabled persons)

http://slco.org/adaptive/plus-one-pass (Salt Lake County Disability Plus One Pass)

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

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

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

https://www.visitutah.com/Media/Default/One%20Sheeters/Accessible_Utah_web.pdf (list of accessible resources)

wasatchadaptivesports.org (Wasatch Adaptive Sports)

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

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


LaptopsSHARING WEBSITES:

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

http://www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)

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

newsletter


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 you the link monthly.