I had the chance to connect with Donna on Facebook and sent her some questions to answer. I wanted to get her perspective as a TBI caregiver. Please check out her blog and website below. Thank you, Donna!
Donna's Blog: donnaodonnellfigurski.wordpress.com
Donna's Traumatic Brain Injury Blog: survivingtraumaticbraininjury.wordpress.com
Donna's Website: donnaodonnellfigurski.com
1. How do you find time for yourself? Does this change according to your husband's recovery? (I think I remember you telling me he had one)
My husband’s traumatic brain injury happened more than nine years ago. He wasn’t expected to survive any of his three brain surgeries (for a cerebellar hemorrhage, removal of an aneurysm, and removal of an arterio-venous malformation), but he did! When David returned home from his stays at the general hospital and the rehabilitation hospital (two and a half months after his event), picture a rag doll. He was reduced to an infantile state and was completely dependent on me. He was unable to feed himself, dress himself, and take care of any of his daily activities. Fortunately, some friends and family helped me in the beginning. After taking a family leave for three and a half months to stay by David’s side in the hospitals, I returned to teaching my first graders. However, whenever I was home, I was totally responsible for David’s welfare. For at least a year, I was never able to leave him alone. David was a prisoner without bars. So was I.
As the years passed, David became more adept at caring for himself, and slowly I felt confident enough to leave him alone at home for short periods of time. The intervals grew as the years marched on, and now I can comfortably leave David for long spans of time. This has freed me immensely. I am able to run errands without having David accompany me. I am able to attend my writing-group meetings, and I have joined the theater, as an actor, assistant stage manager, and director. Despite my new freedoms, David and I remain tethered together by our cell phones. I am only a phone call away.
Unfortunately, because of David’s severe loss of balance, even nine years later he cannot leave the house unassisted.
2. Do you have a sense of community, like support groups or other services?
When David was released from the rehabilitation hospital, I took him to a local brain-injury support group. Although David’s brain was severely damaged, he was not able to relate to the other folks there. He said it made him feel worse, so we stopped going.
When David was in the hospital, I met a woman whose husband had a TBI two weeks after David. I made a point of getting to know her because I thought I could help her. Though the TBI of Judy’s husband is very different from David’s TBI, Judy and I became close friends. But, since we live a distance apart, we offered support via email, phone calls, and an occasional visit.
I was not aware of any other support groups for caregivers back then. It was only in December of 2013 that I found via Facebook brain-injury support groups online. I am now an active member of several traumatic-brain-injury groups, all of which offer friendship and support and answer questions for both caregivers and survivors.
I’m so glad to have found these groups. They provide instant information and support for anyone who needs it.
3.What have you found to be the hardest part of a TBI recovery?
Wow! That’s a hard question. The lives we knew were ripped from us on that fateful morning of January 13, 2005.
I feel very much like Dorothy, when the cyclone picked her up in Kansas and dropped her on the yellow brick road. Like Dorothy, I searched for a way home to the secure and familiar. Unlike Dorothy, I’m still searching.
When something burst inside David’s head, our lives changed forever. It was a complete role reversal. In an instant, I was suddenly in charge, and I was not prepared for my new life. Before TBI, David oversaw the business of running our home – juggling the bills, doing home repairs, making decisions, and . . . taking out the trash. I liked it that way. I chauffeured the children to their soccer games, gymnastic meets, doctor’s appointments, etc. and prepared breakfasts, lunches, and dinners. I liked it that way. In the evenings when David returned from his laboratory at Columbia University and I came home from my 1st or 3rd graders, we fit in “walk-talks” through the neighborhood. We liked it that way.
After David’s TBI, I had to figure out how to run the house. The kids were grown and gone, but I had to pay the bills. (What bills? I didn’t even know what bills we had!) I had to get money from an ATM. I know it’s crazy, but I didn’t know how. David had shown me many times, but, like Scarlet O’Hara, I never paid attention. “Tomorrow, I’ll do it tomorrow.” Well tomorrow slammed me in the face on January 13th, 2005. I was stuck when David slipped into an unconscious state and the code slept with him. I didn’t know who to call for home repairs or to distinguish between junk-mail and important mail, and . . . I had to take out the trash.
Those are some of the things that were very difficult for me. Another was dealing with insurance companies. Fighting with them to pay the bills was overwhelming and extremely stressful. The phone calls and the letters seemed unending. I felt it was unfair for my insurance company not to pay the claims that they so proudly advertised they would do when they were recruiting my business. I kept my part of the bargain. I paid my hefty insurance payments for countless years on-time each month, with no reminders or urging from the insurance company. I never missed a premium payment, though I hadn’t need of their services. Yet, when it came time for them to cover David’s hospital and doctor bills, they tried to renege, not only making me jump through hoops, but also making me feel like I was shaking a tin can on the corner. It was not only downright insensitive, it bordered on criminality. I know many folks will relate to this. I am not alone.
But, the absolute worst of course, was losing the man I married. The man I met at age sixteen went to sleep in a coma, and the man who woke up is a new version of him – a wonderful guy, just the same, whom I will love to forever, but I often miss the “old” guy too.
4. What has been the easiest part of recovery?
This question, too, takes some thought. When I brought David home after his spending two and a half months in hospitals, I thought I would lose my mind. Not only was he like a rag doll and able to do nothing for himself, he was also not quite right with his thinking. He didn’t understand what was going on, and it was very difficult for him and me to live our daily lives without the hospital support. For years, I became his extra self. I did everything for him.
But after time, as he slowly regained some of his missing skills, life became a little easier. David eventually returned to his laboratory at Columbia University. His nature before his TBI was always good, but with his job, he was usually on overload and lived with a lot of stress. After his TBI, he seems more relaxed and lets many things roll by. He tries to make things easier for me, and, now that he is more able to care for himself, he encourages me to pursue my many interests. I have become involved with the theater and my writing groups. I am able to meet girlfriends for lunch dates and walk-talks, or slip out for a quick coffee with a friend.
So, I guess David’s accepting attitude, coupled with his persistence to get better and to make a better life for both of us, is what gets us through.
5. Have you found a spiritual path helpful?
Truthfully, neither of us follows a spiritual path, but our belief and love for each other is what bolsters us through each day, week, month, and year. Together, we will do this!
My husband’s traumatic brain injury happened more than nine years ago. He wasn’t expected to survive any of his three brain surgeries (for a cerebellar hemorrhage, removal of an aneurysm, and removal of an arterio-venous malformation), but he did! When David returned home from his stays at the general hospital and the rehabilitation hospital (two and a half months after his event), picture a rag doll. He was reduced to an infantile state and was completely dependent on me. He was unable to feed himself, dress himself, and take care of any of his daily activities. Fortunately, some friends and family helped me in the beginning. After taking a family leave for three and a half months to stay by David’s side in the hospitals, I returned to teaching my first graders. However, whenever I was home, I was totally responsible for David’s welfare. For at least a year, I was never able to leave him alone. David was a prisoner without bars. So was I.
As the years passed, David became more adept at caring for himself, and slowly I felt confident enough to leave him alone at home for short periods of time. The intervals grew as the years marched on, and now I can comfortably leave David for long spans of time. This has freed me immensely. I am able to run errands without having David accompany me. I am able to attend my writing-group meetings, and I have joined the theater, as an actor, assistant stage manager, and director. Despite my new freedoms, David and I remain tethered together by our cell phones. I am only a phone call away.
Unfortunately, because of David’s severe loss of balance, even nine years later he cannot leave the house unassisted.
2. Do you have a sense of community, like support groups or other services?
When David was released from the rehabilitation hospital, I took him to a local brain-injury support group. Although David’s brain was severely damaged, he was not able to relate to the other folks there. He said it made him feel worse, so we stopped going.
When David was in the hospital, I met a woman whose husband had a TBI two weeks after David. I made a point of getting to know her because I thought I could help her. Though the TBI of Judy’s husband is very different from David’s TBI, Judy and I became close friends. But, since we live a distance apart, we offered support via email, phone calls, and an occasional visit.
I was not aware of any other support groups for caregivers back then. It was only in December of 2013 that I found via Facebook brain-injury support groups online. I am now an active member of several traumatic-brain-injury groups, all of which offer friendship and support and answer questions for both caregivers and survivors.
I’m so glad to have found these groups. They provide instant information and support for anyone who needs it.
3.What have you found to be the hardest part of a TBI recovery?
Wow! That’s a hard question. The lives we knew were ripped from us on that fateful morning of January 13, 2005.
I feel very much like Dorothy, when the cyclone picked her up in Kansas and dropped her on the yellow brick road. Like Dorothy, I searched for a way home to the secure and familiar. Unlike Dorothy, I’m still searching.
When something burst inside David’s head, our lives changed forever. It was a complete role reversal. In an instant, I was suddenly in charge, and I was not prepared for my new life. Before TBI, David oversaw the business of running our home – juggling the bills, doing home repairs, making decisions, and . . . taking out the trash. I liked it that way. I chauffeured the children to their soccer games, gymnastic meets, doctor’s appointments, etc. and prepared breakfasts, lunches, and dinners. I liked it that way. In the evenings when David returned from his laboratory at Columbia University and I came home from my 1st or 3rd graders, we fit in “walk-talks” through the neighborhood. We liked it that way.
After David’s TBI, I had to figure out how to run the house. The kids were grown and gone, but I had to pay the bills. (What bills? I didn’t even know what bills we had!) I had to get money from an ATM. I know it’s crazy, but I didn’t know how. David had shown me many times, but, like Scarlet O’Hara, I never paid attention. “Tomorrow, I’ll do it tomorrow.” Well tomorrow slammed me in the face on January 13th, 2005. I was stuck when David slipped into an unconscious state and the code slept with him. I didn’t know who to call for home repairs or to distinguish between junk-mail and important mail, and . . . I had to take out the trash.
Those are some of the things that were very difficult for me. Another was dealing with insurance companies. Fighting with them to pay the bills was overwhelming and extremely stressful. The phone calls and the letters seemed unending. I felt it was unfair for my insurance company not to pay the claims that they so proudly advertised they would do when they were recruiting my business. I kept my part of the bargain. I paid my hefty insurance payments for countless years on-time each month, with no reminders or urging from the insurance company. I never missed a premium payment, though I hadn’t need of their services. Yet, when it came time for them to cover David’s hospital and doctor bills, they tried to renege, not only making me jump through hoops, but also making me feel like I was shaking a tin can on the corner. It was not only downright insensitive, it bordered on criminality. I know many folks will relate to this. I am not alone.
But, the absolute worst of course, was losing the man I married. The man I met at age sixteen went to sleep in a coma, and the man who woke up is a new version of him – a wonderful guy, just the same, whom I will love to forever, but I often miss the “old” guy too.
4. What has been the easiest part of recovery?
This question, too, takes some thought. When I brought David home after his spending two and a half months in hospitals, I thought I would lose my mind. Not only was he like a rag doll and able to do nothing for himself, he was also not quite right with his thinking. He didn’t understand what was going on, and it was very difficult for him and me to live our daily lives without the hospital support. For years, I became his extra self. I did everything for him.
But after time, as he slowly regained some of his missing skills, life became a little easier. David eventually returned to his laboratory at Columbia University. His nature before his TBI was always good, but with his job, he was usually on overload and lived with a lot of stress. After his TBI, he seems more relaxed and lets many things roll by. He tries to make things easier for me, and, now that he is more able to care for himself, he encourages me to pursue my many interests. I have become involved with the theater and my writing groups. I am able to meet girlfriends for lunch dates and walk-talks, or slip out for a quick coffee with a friend.
So, I guess David’s accepting attitude, coupled with his persistence to get better and to make a better life for both of us, is what gets us through.
5. Have you found a spiritual path helpful?
Truthfully, neither of us follows a spiritual path, but our belief and love for each other is what bolsters us through each day, week, month, and year. Together, we will do this!
This blog is great! I am impressed. Thanks for telling me about it. I will definitely hook my sister up with it and put a link to it on my blog too. I look forward to following.
ReplyDelete