Caregivers SPEAK OUT!
Carol (caregiver for her husband, Andy)
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)
Toronto, Ontario, Canada
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?
Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.
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 care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.
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. I was working full-time, but I resigned after the accident.
7. Did you have any help? If so, what kind and for how long?
We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.
9. Was your survivor in a coma? If so, what did you do during that time?
My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.
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 was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.
13. What do you miss the most from pre-brain-injury life?
We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.
14. What do you enjoy most in post-brain-injury life?
Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.
15. What do you like least about brain injury?
A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.
16. Has anything helped you to accept your survivor’s brain injury?
Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.
18. Has your social life been altered or changed and, if so, how?
Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I would love to volunteer and help other people.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.
(Clip Art compliments of Bing.)
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