Caregivers SPEAK OUT! . . . . . . . . . . Donna O’Donnell Figurski
SPEAK OUT! – Donna O’Donnell Figurski
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email? (optional)
Arizona, USA firstname.lastname@example.org
3. What caused your survivor’s TBI?
My husband, David, was exercising before going to work. He usually did 12 chin-ups. That morning he did 13. DRAT!
4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?
David had surgery for a subarachnoid hemorrhage on January 13, 2005. That was followed by another surgery for the removal of an aneurysm, and yet another surgery to remove an Arterio-Venous Malformation. Thursday the 13th was our “unlucky” day (not Friday the 13th). Thursday the 13th was the day that the title “caregiver” was bestowed upon me. I was 56 years old when I became David’s main caregiver.
5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)
No. Both of our children were grown and living across the country. (But, of course, you always worry about your children no matter how old they are.)
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I was employed. I was a first-grade teacher. I called for a substitute from the ambulance and was not able to return to work for three and a half months. After David was released from the rehab hospital and settled into home life again with our support system in place, I returned to my six- and seven-year-old munchkins.
7. Did you have any help? If so, what kind and for how long?
Initially, family and friends surrounded us, but within a few short weeks they needed to return to their own lives. When, two and a half months later, David returned home from the rehabilitation hospital, I invited some friends to live with us. I am so grateful for their help. David was unable to be left alone, even for a short time. He was completely incapacitated. Makes you wonder how he was released from the hospital! I could not have returned to work without the assistance. I had the help for about a year.
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
My care for David began the moment he stumbled into our bedroom with his head filling with blood, through both his hospital and his rehabilitation stays, and when he returned home two and a half months later.
Though now, nine+ years later, he is independent in many ways, I remain his caregiver for many activities. He is unable to leave our home unassisted. I am his private chauffeur and “chief cook and bottle washer.” But … he does the laundry!
9. Was your survivor in a coma? If so, what did you do at that time?
Yes. He fell into coma before he was placed into the ambulance. Though he struggled for consciousness after each of his three surgeries, he remained in coma for nearly two weeks.
While he slept the sleep of the ignorant, I read to him, played music – our old favorites (The Righteous Brothers), gave him arm and leg massages to stimulate his muscles, provided constant chatter, tried to communicate through hand squeezes (right hand squeeze = yes; left hand = no), provided the doctors with daily information since I was constantly with him, and I begged David to come back to me.
10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?
David did extensive rehab. Almost four weeks from the initial event, David was transferred to an acute facility, where he worked with physical, occupational, speech, and ADL therapists for three hours/day. I spent about fourteen hours each day cheering him on. After release from the rehabilitation hospital, he continued as an out-patient. When I returned to work, our friends took him. When David returned to his laboratory, he continued his therapy with a physical therapist for two hours/week. I wasn’t there for those sessions. He continued that therapy from 2006 until 2013, when he retired from Columbia University.
11. What problems or disabilities of your TBI survivor required your care, if any?
Imagine a newborn babe. David required constant care, even when asleep. He needed to learn to eat, dress, and care for hygiene. He couldn’t walk and had to be transported via wheelchair. He had a feeding port in his stomach, and I had to not only feed him through the port, but also play nurse and clean and dress the wound. Any ingested food was mashed or finely chopped. I applied medication to his eyes and patched one for sleeping each night, and I kept track of and doled out about fifteen medications throughout the day.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
For the first year and a half, David could never be left alone. Not only was his independence impacted, so was mine. I thought I’d lose my mind. I went to work, did errands, and was home every other minute. That was difficult. I was responsible for David’s household duties, the bills (of which I was ignorant), his many errands, and … the trash (the worst ). Nine+ years later, life isn’t better; it’s different. It’s easier than the first five years, but it’s much more difficult than pre-TBI. Would I turn back the clock to pre-TBI time? YES! Definitely!
13. What do you miss the most from pre-TBI life?
Everything! But mostly I miss David’s being able to drive. (I hate being the primary driver.) I miss his being the man-in-charge too. Though recently he started to take over many of the business duties of running a house, which is a complete relief to me. I miss his coming home after a long day at lab and hugging me – happy to see me. I miss his running down the stairs in his running shorts and shoes and watching him from the window as he headed down the street for an eight-mile run. It’s the simple things I miss.
14. What do you enjoy most in post-TBI life?
David seems more relaxed. His position as Professor at Columbia University was very demanding of his time and energy. He gave it his all. He has become more social, and we have many dear friends who he would not have had time to know pre-TBI.
I love working together on trying to publish my book, “Prisoner Without Bars: Conquering Traumatic Brain Injury” and promoting brain injury awareness through my blog (Surviving Traumatic Brain Injury).
15. What do you like least about TBI?
I love to travel. I had hoped in retirement that we would travel the world together. It’s obvious now that that won’t happen. Air travel is challenging at best. David’s lack of balance is the biggest culprit, making it difficult for him to maneuver in the outside world. He is also unable to drive a car. Since I am not fond of driving (he was), this also curbs our over-the-land ventures far from home. Ultimately, it’s the limits that TBI puts on our lives that I dislike the most.
16. Has anything helped you to accept your survivor’s TBI?
I am just so grateful that David is still with me. I have cheered him every step of the way. David’s positive attitude, his endless work and exercise to improve his condition, and his own acceptance have been a great help to me. The internet is a wonderful source of knowledge about TBI. And books! I’ve read tons of books to understand more about TBI and how others deal with it. Below is a list of some not to miss. You can find more on my blog.
Books not to miss:
“In an Instant: A Family’s Journey of Love and Healing” by Lee and Bob Woodruff
“Gabby: A Story of Courage and Hope” by Gabrielle Giffords and Mark Kelly
“I Forgot to Remember” by Su Meck
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
I told every surgeon to give him back to me. I didn’t care how. I got my wish. Though from operating room to recovery room, they made a slight switch. David looked similar to his pre-TBI self, but he had changed. Sometimes I don’t know this new David. That’s not bad – I like this new guy too. It’s just that I miss the pre-TBI David – the boy I met when I was 16 and the man I married at 20 and had children with. I feel like I am having an affair – and it’s legal!
18. Has your social life been altered or changed and, if so, how?
In the beginning, yes, my/our social life was greatly diminished. Pre-TBI David and I enjoyed Friday and Saturday date nights – dinners/movies. That became impossible when David could no longer move on his own or eat by himself. Occasionally friends visited. Eventually David regained his social skills, and, because he is more relaxed, he enjoys people more. Now we go out with friends or entertain at home, and we’ve reinstated our Friday date night.
I pursue many out-of-house activities, such as attending my writing groups, reading my work at open mics, lunching with friends, and acting and directing in the theater.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to continue my work of bringing awareness to TBI through this blog and of being active on internet brain injury support groups. I want to share TBI Survivor and Caregiver stories with my readers.
It’s my dream that my book, “Prisoner Without Bars: Conquering Traumatic Brain Injury,” about my husband, David, will soon be published and in the hands of those who will find knowledge, hope, inspiration, and solace in our story.
I hope that David will continue to improve, no matter how slowly, and someday be able to run the marathon that he had always dreamed of.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Read tons of books.
Surf the internet for information.
Keep a positive attitude. I know, that one is hard. (I never let David see me cry. I was afraid it would scare him.)
Join a support group – in real life or on online site(s).
Take care of yourself. Remember the safety demonstration spiel on every flight. “If the oxygen pressure drops, place the oxygen mask over your face, then help any traveling companions who may need assistance.” You first! Take care of yourself! When your survivor had a TBI, your “oxygen pressure” dropped. PUT ON YOUR MASK!
Never give up!
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
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.
(Photos compliments of ME.)