Caregivers SPEAK OUT! Janiece Naber Martindale
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email? (optional)
Chickasaw, Alabama, USA
3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?
My husband, James Martindale, was 61 when he was diagnosed with multiple system atrophy (MSA, a progressive neurodegenerative disorder that affects the brain). In December 2008, my husband and I drove an empty semi-tractor to Calexico, California, to our drop yard. We were to pick up a loaded trailer for our trip home. Because of rain, the drop yard was extremely muddy. The semi got stuck in the mud, so James walked through the muddy yard looking for our loaded trailer, when he fell in the mud. James hurt his back at that time, and he began to complain of dizziness. He also complained of a nasty headache. I believe that that was the beginning of James’ MSA.
4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?
I began my husband’s care in June 2009. I was 45. I was his main caregiver. I am not now because my husband passed away on October 16, 2014.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
Yes, we were working at the time. But, we had to quit.
7. Did you have any help? If so, what kind and for how long?
My husband had hospice care for the two years before he passed away.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
For the first three years, I was the only caregiver, and I didn’t really have any help. But, I had a lot of help in the final two years with hospice care coming into the house.
9. Was your survivor in a coma? If so, what did you do during 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 your survivor was getting therapy?
My husband had no rehab.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
My husband had problems with his balance and his gait. He couldn’t write. He wasn’t able to drive a car. Eventually, he lost all ability to move. He had an upper respiratory infection.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
My life is better because I now have the knowledge to help other people
13. What do you miss the most from pre-brain-injury life?
I miss being able to go out and ride around the Gulf coast together.
14. What do you enjoy most in post-brain-injury life?
It’s hard to enjoy life, since I have to start over all by myself.
15. What do you like least about brain injury?
My husband died too soon.
I just accepted it. It was the way of life.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
I had to stay at home a lot. I realized that I could change that when I had the help of hospice workers.
18. Has your social life been altered or changed and, if so, how?
My social life was affected at the time. Now I’m trying to put my life back together again with a husband.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I plan to help someone who is living in this situation – I may even start a support-group, so people have a place to go and chat.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Keep a positive attitude. Hold your head high. Be patient. Encourage the survivor.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
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