Caregivers

Caregiver Stories

Lois Daniels

Lois is the mother of Willie Daniels (read his story in Survivor Stories). Willie is a brain injury survivor who was shot 7 times (4 bullets in the head) and left to die. Lois and Willie both have become Peer Visitors.

Read Lois’ testimony of survival and faith.

Karen DeLoria

Karen is a retired psychiatric nurse and the mother of two daughters who each sustained a brain injury, one from a 14-inch knitting needle accident and the other from a motorcycle accident.

Read Karen’s story of her harrowing experience nurturing both daughters back to health.

Bessie & Glyn Durio

Bessie & Glyn’s son, Bryan, was in a terrible head-on car wreck at the age of 19 (read Bryan’s Survivor Story).

Bryan spent five weeks in a coma and was paralyzed on his entire left side. The first day, they were told Bryan’s brain stem was badly bruised and had two major blood clots — and that when he eventually woke up from the coma, he may mentally be a 5-year-old for the rest of his life. Bessie immediately thought, “Oh, no he won’t!” She remained optimistic and steadfast in her determination to see her son through his ordeal.

Read Bessie’s (almost) daily notes as Bryan progressed from being decerebrate and comatose to full consciousness during his six-week hospital stay.

Brigitte Espinet

Brigitte is a wife of 25 years, mother, and caregiver. In 2018 her husband was in a horrific motorcycle accident — he was hit by a drunk driver — an accident that would forever change their lives. Brigitte says, “My overriding hope is that the recounting of my experience would be deeply relatable for other spouses and family members – and that they might find that relatability to be as cathartic as it was for me to write it.”

Read Brigitte’s personal journal blog.

Joel Goldstein

After Joel’s teenage son, Bart, survived a catastrophic car accident resulting in severe brain injury, the Goldsteins left no stone unturned searching for remedies, both conventional and alternative, to Bart’s grave injuries. No Stone Unturned (University of Nebraska, 2012) is a case study in how a family fights the “TBI Wars” while preserving balance, optimism, resilience and zest for life. Focus is on ideas that can be put to immediate practical use.

No Stone Unturned can be purchased from Amazon.com.

Sue Harrison

Sue is the mom and the caregiver of Eileen Harrison. Eileen was in a horrible car wreck when she was 20 and almost died. Sue was told to put her into a nursing home. Sue would not accept this and instead, found all of the therapy and rehabilitation programs possible to help Eileen.

Read Sue’s story to learn more about how her own determination helped Eileen improve.

Monique & Jacques Hauss

Monique & Jacques’ son, Bert, was hit by a car in 1997 and suffered a traumatic brain injury. After about a year in hospitals and rehabilitation centers, he continued in college and finished his Bachelor’s and Master’s degrees.

Read their thoughts and insights about brain injury.

Wynell Hunt

Wynell is the mother of Scotty Hunt. Scotty was in a horrific auto accident when he was only 20 years old. Wynell wrote a book about Scotty’s story which covers the experiences of their family and Scotty throughout his recovery from those first full days in the hospital, to college, then marriage.

Read about Wynell and her book, Why Scotty?

Read the story Scotty wrote in Survivor Stories.

Mariellen Jacobs

Read (PDF) how Mariellen turned her son’s injury (traumatic brain injury and a stroke) — from falling from his college loft bed — into a crusade to help all future Georgia college students. A Georgia law was passed thanks to Mariellen and Clark.

Walter Kilcullen

Walter Kilcullen is a retired guidance counselor from New Jersey. He has been a mentor for stroke and traumatic brain injury survivors for the past 15 years. He is an author and a former staff writer for strokenetwork.org, and publishes his own bimonthly magazine, Stroke and Traumatic Brain Injury (TBI) Life Magazine. Read the November 2020 issue here (PDF).

Read Walt’s Caregiver Story here.

Email Walt and subscribe to his free magazine at: SATBILMagazine@gmail.com.

Dr. Preeti Pahal

Preeti is a doctor in India. She says, “Through my mom’s story I want to tell the whole world that the recovery of a severe head injury patient is painfully slow. Please do not lose heart and courage when your loved ones have to face such a big medical problem. My mom got a severe brain injury in a road traffic accident few years back where her large part of left frontal lobe got damaged. As a consequent of it her chances of recovery were too low especially speech and movement was quite unexpected but due to a lot of care and hard-work she has improved beyond expectation. In fact her doctors used to say it to be Miracle.”

Dr. Preeti shares her Caregiver’s loving story about her mother here.

Tamika Ponder

Tamika says, “I experienced a mother’s worst nightmare. I received a call telling me that my youngest son, Matthew, age 16, was in a serious car wreck.” Matthew was in a coma. “With each passing day, I wondered who would wake from the coma — my easygoing, confident, likeable son, who believed he could do everything, or someone I wouldn’t recognize?”

Read Tamika and Matthew’s story on the Brain & Life website.

Garry Prowe

Garry is the husband of Jessica Whitmore. Jessica suffered a severe brain injury in an automobile accident. Garry has passionately spent the last several years writing a book that he hopes will help the brain injury community. With Jessica’s help, and with the help of numerous caregivers and survivors throughout the United States, Garry wrote Successfully Surviving a Brain Injury, A Family Guidebook (From the Emergency Room to Selecting a Rehabilitation Facility).

Read a selection of the book entitled, “How Well Will My Survivor Recover?”

Jim and Yvonne Raisin

Jim and Yvonne’s lives changed in an instant when their son, Saul, was cycling in the Tour de France and crashed. For 3 weeks he was not expected to live.

Read Jim & Yvonne’s story here.

Brent Schmaling

Brent’s perspective is as a guardian/family member of a TBI survivor. Frustrated with the health care system and determined to gather the best information available to help with decision making, Brent became a patient advocate through the University of Wisconsin Law School’s Center for Patient Partnerships. He is convinced that better care begins with better conversations with providers, and that patients and families have an important role to play in helping the providers know the person, not just the patient.

Read more about Brent’s experience. Brent is a Brain Injury Peer Visitor, part of the Brain Injury Peer Visitor Association. He Peer Visits in three units at the University of Wisconsin Hospital.

Deanna Scott

Deanna is the author of the book, Reconstructing David. Her book tells the intimate story of a mother’s dedication and devotion to her teenage son’s recovery after a brutal motorcycle accident, and the long, slow journey back from traumatic brain injury. An encouraging book for someone who is going through the difficulties of dealing with a brain-injured family member.

Read a moving story about caregivers by Deanna.

To order Reconstructing David, e-mail dss993@comcast.net.

Care for the Caregiver — Jean Kropa

Jean Kropa, author, mother, caregiver of a son for over 20 years who was injured falling from a tree at age 8, shares:

The one area that I would like to emphasize with you is caring for yourself. Now is a good time for you to “give yourself extra attention. Try a manicure . . . a shampoo & set . . . a hot-soaking bath . . . a cup of tea . . .“

Read more of Jean’s advice.

Caregiver Tips for Balancing Your Life

Read ideas and suggestions for taking care of your brain-injured loved one, as well as caring for yourself. Remember, if you – the caregiver – get sick or become too tired, who will take care of your loved one? Such topics are discussed and many more:

• Embrace Knowledge
• Forge a Circle of Support
• Commit to Your Own Health
• Balance Scheduling

Read further in this article about balancing caregiving and personal wellness without stress.

Caregiving for Seniors with Traumatic Brain Injuries — Sally Collins

Sally Collins works in a senior care site and knows how important it is to provide caregivers as much information and support as possible. Read the advice she has about caring for seniors who have a traumatic brain injury.

30 Resources to Help Caregivers covers 30 essential sources of information and support for all kinds of caregivers. This is an excellent source for so much information for caregivers of seniors.

Caring for the Caregiver — Stuart Hanzman

Stuart Hanzman, whose son who sustained a brain injury less than 2 years ago, has over 15 years of experience counseling both brain injury survivors and their caregivers. Stuart shares his own thoughts about how to care for the caregiver. “If the Caregiver does not take care of themselves, there will be two sick people. The brain injury happened to the whole family; everyone in the family system is affected.”

Read notes on Stuart’s advice.

Recognize and Accept Your Feelings

Fear

In the beginning, there’s the immediate fear of not knowing whether or not your loved one will live or die. Then comes the fear of not knowing how much disability, if any, your loved one will have. You may be afraid that the life you had planned together will change. As recovery progresses, you may be faced with financial concerns and other issues. All of these fears are natural and to be expected. The best way to handle them is to learn as much as possible about your loved one’s condition and the many resources available to you.

Anger and Resentment

Be prepared to feel anger and resentment. These are common — and natural — feelings. After all, your life has changed, and you had nothing to do with it! You may be ashamed of these feelings. You may ask yourself, “How could I be so selfish to put my concerns ahead of my loved one’s after this life-threatening event?” These feelings are perfectly normal, so don’t fight them. Just accept them and recognize that they come with the territory.

The only time they are likely to become a problem is if you don’t take care of your own needs — needs for time alone, friends, activities, and rest. If you become overtired or overstressed, your anger and resentment may grow and hurt your own health.

Frustration

You may also feel frustrated or impatient with what seems to be slow progress. Perhaps you feel your loved one should have gotten over the blues by now. Talk with the doctor and other healthcare providers to learn what to expect during and after the recovery period. While it’s great to encourage your loved one to be self-sufficient, resist the urge to set unrealistic goals.

Other emotions, such as loneliness, sadness, guilt, or relief are also normal. Accept them and find ways to deal with them. If you have a good relationship, you can talk out some of these feelings with your loved one. Or you might want to discuss them with a good friend, family member, support group, clergy member, or professional counselor. It’s amazing how simply talking about your feelings can help your outlook.

Spinal Column Magazine, Winter 2011

The Role of the Caregiver

By Bill Sanders

Shepherd Center trains and encourages patients’ loved ones to be good caregivers — the kind with compassionate hearts, strong wills and true selflessness.

The Six R’s of Caregiving

1. Responsibility
   Your first responsibility is to yourself.
2. Rights
   Caregivers have the right to health and happiness.
3. Replenish
   Keep yourself replenished with nutritious foods.
4. Reality
   Accept the reality of what can and can’t be controlled.
5. Refresh
   Take time to refresh your mind and rejuvenate your body every day.
6. Reach Out
   Stay in touch, ask for help, and reach out to others.

Top 10 Caregiver Survivor Tips

1. Join a support group.
   Don’t try to go it alone. Talking with other caregivers helps you feel less isolated and more in touch with life. Contact the nearest American Heart Association for support groups in your area.
2. Let the survivor do as much as possible.
   As a caregiver, you try to do everything to help your loved one. But as time passes, it’s a good idea to let your loved one take over as much as he or she can.
3. Ask for help.
   Caregiving may be a new role for you. It takes time and help from others to learn how to be a good caregiver. You can’t do it all, so build a caregiver team. When people offer to help, accept the offer and suggest specific things that they can do.
4. Learn all you can about your loved one’s condition.
   Knowledge is power. The more you know the better care you can provide and the less fearful you’ll be.
5. Stay in the mainstream of life.
   Keep everyone who’s concerned informed about your loved one’s progress. And be sure that both of you see friends regularly and stay in the mainstream of life.
6. Involve the entire family.
   Hold regular family meetings, conference calls, or send emails or letters to keep everyone up to date about the survivor’s progress. Keep it factual and upbeat. Assign tasks to each family member.
7. You deserve a break.
   Take time to recharge your batteries. Take a few minutes alone, read your favorite magazine, or visit with friends. When you need a longer break, take a weekend. A solid support network will help give you these timeouts. Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
8. Do things you enjoy.
   Keep up with activities and hobbies you had before your loved one’s brain injury. It’s not healthy to give up the activities you enjoy. Remember to be good to yourself.
9. Develop a new attitude.
   Life is not the same, but it’s not hopeless. Grieve for your losses, and then allow yourself to dream new dreams. Think of life after a brain injury as a second chance — a time of healing and adjusting priorities. Talk with your loved one and develop new dreams together. Think positive.
10. Watch out for signs that you are becoming depressed.
    Caregivers often have intense physical fatigue, worries about the future, and a sense of loss. Learn the signs of depression and get help if they occur. To avoid depression, find time for regular exercise to increase your energy (even if you only stretch in place). Also, concentrate on getting relaxed sleep rather than more sleep.

Top 10 Things to Do for Yourself

1. Get regular physical activity.
   It’s a good energizer, reduces stress, helps control blood pressure and cholesterol, and helps maintain a healthy weight. Start by walking 15 minutes a day, even if it’s just around the yard.
2. Eat heart-healthy foods.
   They give you more energy, combat depression, and help prevent health problems.
3. Take time every day to do something you enjoy.
   Claim time for yourself — schedule it! Read, listen to music, do crafts, cook — whatever makes you happy and relaxes you.
4. Keep humor in your life.
   Laughter is good medicine. It quickens the pulse rate, stimulates blood circulation, activates muscles, increases oxygen intake, and fosters relaxation. And remember, laughter is contagious!
5. Get out once a week.
   Go to a coffee shop, attend church events, take a class, or visit a friend. Ask for help if your loved one needs constant attention.
6. Treat depression and stress.
   Recognize signs and symptoms. When they start to occur, do something about them. Get help. Talk it out. Admit your feelings.
7. Take care of your business.
   Keep your checkbook balanced, work when you need to, spend time with friends and family, and keep planning for the future.
8. Keep all medical and dental appointments.
   If you’re sick, you won’t be able to do what you need to do for your loved one. Ask for help when you need to get away and take care of your health. Be sure to explain your caregiver responsibilities, not just your symptoms.
9. Think positive.
   Refresh your mind every day. Admit your limitations. Pat yourself on the back for the job you’re doing. If you’re feeling guilty or angry, it’s time to take a break.
10. Stay connected with the outside world.
    Keep up with outside friends and activities. Don’t isolate yourself. Stay in touch, even if it’s just by phone or online. Talk about something other than your situation and maintain an interest in the world outside your caregiving role.

Trust Protector Committees

Are you interested in setting up a special needs trust for your brain-injured loved one? “Our disabled loved ones are often dependent on us to provide for them today and after we are gone,” states A. Kel Long, III, an attorney in Atlanta, who has years of experience in this arena. His website is Hendrick, Rascoe, Zitron & Long, LLC.

Read Kel’s August 2009 newsletter (PDF) regarding some important issues that you should consider.

Websites

MedlinePlus Caregivers page

A great page for caregivers with many links to informative websites.