SPEAK OUT! – Gill Evans
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)
Birmingham, England firstname.lastname@example.org
3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?
The TBI survivor is my husband. He had his TBI in 1984 at age 23. The TBI was originally due to a motorcycle accident, but he has been reinjured three times since then, the last being 11 years ago. He has had one work-related injury and two motorcycle-related head injuries.
4. On what date did you begin care for your TBI survivor? Were you the main caregiver? Are you now? How old were you when you began care?
I was 22 and in full-time work. He was living with his mom. We decided to split up due to his being violent, but we continued seeing each other as friends. We got back together when I was 40 and he was 41. We married 2 years later. I have looked after him since because the last injury left him unable to work.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
When we got back together, I had two teenage boys.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I work full-time, but I have 13-hour shifts, so I’m home 4 days each week. I no longer work night shifts, as he struggles with the change that causes.
7. Did you have any help? If so, what kind and for how long?
8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?
My husband finally accepted help three weeks ago. When he had his TBI 30 years ago, there was nothing in place for him. He got speech therapy, and that was it.
9. Was your survivor in a coma? If so, what did you do at that time?
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)? How long was the rehab? Where were you when this was happening?
He got speech therapy at home.
11. What problems or disabilities of your TBI survivor required your care, if any?
He required constant prompting of his memory and calming down due to temper. He had a broken leg, so he was wheelchair-bound for a couple of weeks until he was able to have crutches.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
I’m not really sure that I can answer this. My response probably wouldn’t make sense, as it would be “better than what, and worse than what?”
13. What do you miss the most from pre-TBI life?
I miss my independence – not having to worry about my husband when I’m out or not having to walk on eggshells because he’s in a bad mood. But, as much as I miss my independence, I regret that over the last couple of years he has stopped going out unless he has to. So, I go everywhere on my own. Sometimes I wish I didn’t have to.
14. What do you enjoy most in post-TBI life?
On reflection, not a lot
15. What do you like least about TBI?
I dislike that my husband’s last injury took him away from me and that he is like a stranger sometimes. He can forget who I am, and he will talk to me like I’m his ex-wife.
16. Has anything helped you to accept your survivor’s TBI?
I’m helped by the fact that I have loved my husband since I was 17 years old. (So, I have known him with the TBI most of my life.)
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
When we married, I had two teenage sons living at home, and this became really difficult. There were lots of arguments. After two years of our fighting, my sons decided it was better if they moved out. I have spent the last eight years trying to rebuild my relationship with them, and thankfully we are much closer. Also they, to an extent, get on with my husband.
18. Has your social life been altered or changed and, if so, how?
Not really. My husband doesn’t go out much, and I go out with my sons or with colleagues from work. The one rule I have when I am out is that, unless it’s an emergency, he is only allowed to phone me once and the rest has to be text messages. Also he is not to bombard me with texts if I don’t reply.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I’m hoping to be retired (or at least to be coming up to retirement) and spending some quality time with my family.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Have boundaries, boundaries, and boundaries – to protect your own sanity. Remember to keep time for yourself. Don’t tolerate violence. It’s okay for you to get mad occasionally, but walk away. You won’t win a fight (verbal) with him or her. Grow a thick skin – he or she doesn’t always mean what is said. If you take everything personally, you won’t survive. Remember most of all, regardless of the effects of the TBI, your partner is still in there, so don’t give up hope of ever seeing him or her again – even if it’s only for a fraction of a second that he or she shines through. That’s why at the end of the day you are still there.
Thank you, Gill, 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 Gill.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.