Caregivers SPEAK OUT! Rosemary Rawlins
SPEAK OUT! – Rosemary Rawlins
Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Glen Allen, Virginia, USA
3. What is the TBI survivor’s relationship to you?
Husband – Hugh Rawlins (We had been married 24 years at the time of his injury.)
How old was the survivor when he/she had the TBI?
What caused your survivor’s TBI?
A car (driving nearly 50 mph) hit him directly from behind as he was riding his bicycle home from an afternoon workout.
4. On what date did you begin care for your TBI survivor?
Immediately. I stayed in the Intensive Care Unit, and I visited him every day in Acute Brain Rehab. Hugh was in the hospital 33 days.
Were you the main caregiver?
Are you now?
I don’t consider myself his caregiver anymore.
How old were you when you began care?
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Yes – twin daughters, age 14. My daughters, Anna and Mary, are wonderful. They were the reason Hugh and I were able to go on.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I was a self-employed résumé writer and consultant. I continued working, but I drastically cut down on work to care for Hugh.
7. Did you have any help? If so, what kind and for how long?
All of my immediate family lived out of state, but people visited periodically, and that helped. Neighbors and friends helped with driving and food, but caring for Hugh was mainly my full-time responsibility. I hired a night nurse so my daughters and I could sleep. That went on for several weeks, until we were able to get Hugh on a day/night sleep schedule. I was exhausted all the time.
8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?
9. Was your survivor in a coma? If so, what did you do at that time?
Yes – for a week. I sat by Hugh’s bed for most of it. I kept a journal. My daughters were there a lot too. We simply waited and read notes to him from friends and family far away. We talked to him and waited.
10. Did your survivor have rehab?
If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?
Hugh was put into the inpatient hospital acute brain rehab for two weeks. He was then released to Day Rehab at a nearby facility for daily outpatient recreational, occupational, physical, speech, and other therapies. (He was in a group therapy and did Interactive Metronome therapy.)
How long was the rehab?
He was released from physical therapy first after a few months, then occupational therapy, and finally speech/cognitive therapy after about 14 months.
Where were you when this was happening?
I was usually at home trying to work, but went in with Hugh from time to time. I wanted to know his therapists, and they worked with me on ways to supplement therapy at home. It was a great help to learn from them. I also hired a personal trainer to cross-train Hugh after he was released from physical therapy, and that helped him make strides in his progress. He swam and did exercises that would use both sides of the brain. Physical exercise helps the brain; at least in his case it made a huge difference.
11. What problems or disabilities of your TBI survivor required your care, if any?
For three months, Hugh required a helmet and gait belt every time he stood up because he had a chunk of his skull cut out to relieve brain swelling. After three months, he had that bone replaced, and his balance improved. Hugh required help and prompting with everything – grooming, eating, dressing, and walking. He had swallowing problems and lost most of the use of his left side. By four months, he was more independent, but he had some short-term memory and judgment issues. By two years out, he was in very good shape and started working again.
12. How has your life changed since you became a caregiver?
I don’t consider myself a caregiver anymore in the regular sense of the word, at least not for my husband. Life was miserable in the beginning because there were so many questions without answers. I suffered ambiguous loss because Hugh sat and stared into space, and I missed him. He was with me, but radically changed. I felt grateful and ungrateful at the same time.
Is it better? Is it worse?
I see my life as “just life” with all its ups and downs, and I try to live it day-to-day as it unfolds. It’s the only thing that’s kept me sane. Life right now is good. I work and Hugh works. He made an amazing recovery.
13. What do you miss the most from pre-TBI life?
Feeling safe in the world and feeling a full sense of joy. TBI has made me more neurotic, and I find I get stressed easier now. I work on trying to minimize this every day.
14. What do you enjoy most in post-TBI life?
The love we rekindled and share. Also the work we do together to help others going through what we went through. Hugh speaks with me at some conferences, and we now have a shared mission in life – we didn’t have that before.
15. What do you like least about TBI?
How it robs a person of his or her identity. How it hijacks a family and takes over your lives for a very long time. TBI is full of cruel surprises popping out of nowhere, new deficits that surface, drugs and side effects, seizures and personality changes.
16. Has anything helped you to accept your survivor’s TBI?
Yes. Loving him, plain and simple.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
I’m sure it has affected my home life in ways I never imagined. My children became caregivers early in life to help me, and they had stresses of their own. In many ways, they missed out on doing a lot of things because their father was very sick, and I was completely focused on Hugh, when I used to be focused on them. But we are all very close today and know that things could have turned out much worse than they did. We’re thankful he achieved the level of recovery he did.
18. Has your social life been altered or changed and, if so, how?
Yes. Friends come and go, but I see that as part of modern life too. We have one set of friends in school, then another when we start work, then they change as we marry and have children. It’s a part of life. We love our friends, and some have stuck by us through all of it – we cherish those friendships immensely. I have no hard feelings for friends that drift away; it’s just the natural ebb and flow. I love it when I see someone I haven’t seen in years and we pick up where we left off. Friends mean a lot to me. On positive note, I’ve met some of the best friends of my life through Hugh’s TBI. I feel very close to several people I’ve met because of brain injury, including a few doctors and therapists.
19. What are your plans?
To keep being a writer, a job I love. TBI started my book writing and speaking career, and I love working from my home and connecting with others.
What do you expect/hope to be doing ten years from now?
I hope to be semi-retired and living in Nags Head, North Carolina, at the beach. Hugh loves to surf, and I love the ocean and the serenity it brings. I’ll always keep reading and writing, though, for the love of it.
20. What advice would you offer other TBI survivor caregivers?
Wow, there’s so much I’ve learned in the past twelve years. Here are some I consider most important for caregivers:
- Pace yourself – TBI is definitely a marathon, so be sure to keep some space in your life for you at all times
- Keep up with friends, and ask them how they are. Try to do things that are not TBI-focused all the time. Go to a movie, or go for a walk and talk about your girlfriend’s new job. Friendship is a two-way street. Being isolated can lead to depression.
- Watch your own health. I came down with shingles 15 months after Hugh’s injury because I didn’t manage my stress. I love guided-imagery tapes. They helped me sleep and relax.
- Seek counseling or join a support group for times you want to vent, instead of using your family and friends to vent to all the time. You will be redirected toward more healthy outlets, and talking to someone “neutral” has a healing effect.
- Right after Hugh’s TBI, I kept working toward returning to our “old” life. It took me a very long time to realize that the changes that occurred made that impossible. We had to start over. Counseling helped with this.
- Be honest with yourself about what to expect, and try to celebrate each advance.
- Advocate, vote, stay informed of your rights and let your voice be heard. Support your local Brain Injury Association and WETA, who produces BrainLine.org.
Do you have any other comments that you would like to add?
I have great respect for TBI caregivers. I can’t think of a harder job on this earth. Hugh got better, much better than most people do, and for that I am humbled and grateful, but I pray every single day for people who struggle a lifetime with TBI in ways that drastically limit them – especially when they cannot find the resources they need. These are the families that keep me motivated to advocate for the rights and support of TBI individuals and their caregivers. So much more research and funding needs to happen to make life more manageable and enjoyable for all families affected by TBI. We need awareness, education, support, research, treatments, and many people need ongoing rehab to maximize their potential. If we join together, we can all make a difference.
Rosemary Rawlins is the author of Learning by Accident: A Caregiver’s True Story of Fear, Family, and Hope, and a regular blogger for BrainLine.org. She also writes the Family Matters column for Brain Injury Journey Magazine. Rosemary speaks nationally at libraries, TBI events, and conferences. You can learn more about her at www.rosemaryrawlins.com
You can also watch a very informative video about how Rosemary and Hugh pieced their lives together again with the help of some very special counselors. Brain Injury Resources – Couples and Traumatic Brain Injury
Thank you, Rosemary, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.
(Photo compliments of Rosemary.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.