Nothing Is What I Thought It Would Be: A Reservist Wife’s Perspective
Articles from Military One Sourcer http://www.militaryonesource.com/ on dealing with becoming a caregiver.
When You Become Your Spouse's Caregiver
Becoming a Caregiver for Your Adult Son or Daughter
Saturday, March 12, 2011
TBI and Vision Loss
One hurdle that keeps tripping us is Sean's limited vision. Many of the doctors, optometrists, and ophthalmologists Sean has seen do not know enough about the relationship between TBI and vision loss. Add to that the overlap between TBI and PTSD and Sean's case is even more puzzling, especially when seeing a new provider.
Dr. S, neuro ophthalmologist, explained Sean's vision difficulties like an electrical circuit. If an electrical circuit has a frayed wire, sometimes the wires will connect and the switch will work, and sometimes it will not. The same is true with the electrical pathways in the brain. Microscopic damage in the brain can cause the visual pathways to be disrupted.
One ER doctor at the VA told us that Sean's vision loss was not likely due to his TBI because the loss would have been sudden, not delayed by two years as, "it just doesn't work that way." However, this is not what we have learned through our interaction with veterans and professionals through the BVA. We have met with Colonel Donald A. Gagliano, M.D., Executive Director of the Vision Center of Excellence and heard him speak about the problems associated with TBI-related vision loss.
Dr. Gagliano said more research is needed to determine the cause and proper treatment of TBI. Also, he said that integrated treatment between the DOD and the VA at the Vision Center of Excellence could help TBI patients receive the most effective care.
TBI is a serious condition that often results from improvised explosive device injuries. The visual impact of TBI is sometimes not observed until weeks, months or even years after the blast. TBI can have a major impact on visual quality of life, according to Glenn C. Cockerham, MD.
“Blast injury is the most common cause of TBI in the war in Iraq and is increasingly common in Afghanistan,” he said. “Little has been reported in the scientific literature about blast effects on the human eye and vision.”
The following articles highlight difficulties in diagnosing and treating vision loss due to TBI.
New DoD/VA Center Tracks Increasing Eye Injuries To Improve Vision Research, Care
About 60-70 percent of severe and moderate TBI cases and 40 percent of mild TBI cases include some form of visual impairment, such as nerve damage from concussive events. VCE is looking at capturing reports from the Defense and Veterans Brain Injury Center, which collects intake information on visual issues caused by mild TBI. "Mild TBI is still an enigma," COL Gagliano advised. "We're looking at clinical symptoms and maybe some cognitive testing. Some of the blast exposure injuries are injuries to the globe. When a blast wave hits your eye, it causes tissue, retinal, nerve, and zonular injury and we don't understand it well. It's like two times the force of being punched. The eye is compressible, so we're looking at how to mitigate it."
Vision and Traumatic Brain Injury (TBI) from the Vision Center of Excellence
Dr. S, neuro ophthalmologist, explained Sean's vision difficulties like an electrical circuit. If an electrical circuit has a frayed wire, sometimes the wires will connect and the switch will work, and sometimes it will not. The same is true with the electrical pathways in the brain. Microscopic damage in the brain can cause the visual pathways to be disrupted.
One ER doctor at the VA told us that Sean's vision loss was not likely due to his TBI because the loss would have been sudden, not delayed by two years as, "it just doesn't work that way." However, this is not what we have learned through our interaction with veterans and professionals through the BVA. We have met with Colonel Donald A. Gagliano, M.D., Executive Director of the Vision Center of Excellence and heard him speak about the problems associated with TBI-related vision loss.
Dr. Gagliano said more research is needed to determine the cause and proper treatment of TBI. Also, he said that integrated treatment between the DOD and the VA at the Vision Center of Excellence could help TBI patients receive the most effective care.
TBI is a serious condition that often results from improvised explosive device injuries. The visual impact of TBI is sometimes not observed until weeks, months or even years after the blast. TBI can have a major impact on visual quality of life, according to Glenn C. Cockerham, MD.
“Blast injury is the most common cause of TBI in the war in Iraq and is increasingly common in Afghanistan,” he said. “Little has been reported in the scientific literature about blast effects on the human eye and vision.”
The following articles highlight difficulties in diagnosing and treating vision loss due to TBI.
New DoD/VA Center Tracks Increasing Eye Injuries To Improve Vision Research, Care
About 60-70 percent of severe and moderate TBI cases and 40 percent of mild TBI cases include some form of visual impairment, such as nerve damage from concussive events. VCE is looking at capturing reports from the Defense and Veterans Brain Injury Center, which collects intake information on visual issues caused by mild TBI. "Mild TBI is still an enigma," COL Gagliano advised. "We're looking at clinical symptoms and maybe some cognitive testing. Some of the blast exposure injuries are injuries to the globe. When a blast wave hits your eye, it causes tissue, retinal, nerve, and zonular injury and we don't understand it well. It's like two times the force of being punched. The eye is compressible, so we're looking at how to mitigate it."
Vision and Traumatic Brain Injury (TBI) from the Vision Center of Excellence
BIAA Adopts New TBI Definition
March is Brain Injury Awareness Month!
BIAA Adopts New TBI Definition
06-Feb-2011
The Brain Injury Association of America (BIAA) is pleased to announce its adoption of a new definition of traumatic brain injury (TBI). Based on the proposal of the Demographics and Clinical Assessment Working Group of the International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health, BIAA has adopted the following definition:
TBI is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.
The International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health is led by a variety of co-sponsoring federal agencies that facilitate scientific experts to participate in working groups developing recommendations for specific common data elements. The Clinical Assessment Working Group is comprised of both military and civilian TBI researchers from across the country, including Dr. Wayne Gordon of Mount Sinai School of Medicine, who also serves on BIAA’s board of directors.
A position statement released from the working group reported that “A clear concise definition of Traumatic Brain Injury (TBI) is fundamental for reporting, comparison, and interpretation of studies on TBI. Changing epidemiology patterns, an increasing recognition of significance of mild TBI, and a better understanding of the subtler neurocognitive neuroaffective deficits that may result from these injuries, make this need even more critical.”
According to Dr. Gordon, “The new definition incorporates the emerging evidence that signs and symptoms of the injured brain may emerge over time.”
BIAA believes this updated definition will better capture the essence of the disease process and the many varying outcomes present in persons with TBI and will reflect more recent research conducted by experts across the country.
BIAA Adopts New TBI Definition
06-Feb-2011
The Brain Injury Association of America (BIAA) is pleased to announce its adoption of a new definition of traumatic brain injury (TBI). Based on the proposal of the Demographics and Clinical Assessment Working Group of the International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health, BIAA has adopted the following definition:
TBI is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.
The International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health is led by a variety of co-sponsoring federal agencies that facilitate scientific experts to participate in working groups developing recommendations for specific common data elements. The Clinical Assessment Working Group is comprised of both military and civilian TBI researchers from across the country, including Dr. Wayne Gordon of Mount Sinai School of Medicine, who also serves on BIAA’s board of directors.
A position statement released from the working group reported that “A clear concise definition of Traumatic Brain Injury (TBI) is fundamental for reporting, comparison, and interpretation of studies on TBI. Changing epidemiology patterns, an increasing recognition of significance of mild TBI, and a better understanding of the subtler neurocognitive neuroaffective deficits that may result from these injuries, make this need even more critical.”
According to Dr. Gordon, “The new definition incorporates the emerging evidence that signs and symptoms of the injured brain may emerge over time.”
BIAA believes this updated definition will better capture the essence of the disease process and the many varying outcomes present in persons with TBI and will reflect more recent research conducted by experts across the country.
Madigan Army Medical Center
Sean was sent to Madigan Army Medical Center at Ft.Lewis, WA the first week of March for an eye evaluation by a neuro ophthalmologist for his PEB. A lot of travel for a "nothing new" answer. Oh, how I wish just once there could be an exam where the doctor says, "Oh! There! That's it!" Definitive answers that would end this search.
The one thing we were able to take away from this exam is that unlike others who have told Sean since there is nothing physically wrong with his eyes he will "magically" regain sight someday, Dr. G told him that since his vison loss has persisted for more than two years he is not likely to regain that sight. She also said that etiology doesn't matter, he has still lost vision. This gave Sean validation unlike others who have made him feel like he was making things up or it's all in his head.
With our flight schedule we had less than a day to spend in Seattle, but we still managed to squeeze in some sightseeing with our good friend David Floyd. He gave us the Pacific Highway tour on the drive from Ft. Lewis to Seattle. We walked around city center and through Experience Music Project (EMP) before traveling 500 feet up to dine at Sky City in the Space Needle. It was AWESOME!! The view was amazing! 360 degrees of city lights and Puget Sound. The food was incredible! Best filet I've ever eaten, followed by the Lunar Orbiter Ice Cream Sunday. The company was perfect! Thanks, Floyd, for showing us your home and spending the day with us.
The one thing we were able to take away from this exam is that unlike others who have told Sean since there is nothing physically wrong with his eyes he will "magically" regain sight someday, Dr. G told him that since his vison loss has persisted for more than two years he is not likely to regain that sight. She also said that etiology doesn't matter, he has still lost vision. This gave Sean validation unlike others who have made him feel like he was making things up or it's all in his head.
With our flight schedule we had less than a day to spend in Seattle, but we still managed to squeeze in some sightseeing with our good friend David Floyd. He gave us the Pacific Highway tour on the drive from Ft. Lewis to Seattle. We walked around city center and through Experience Music Project (EMP) before traveling 500 feet up to dine at Sky City in the Space Needle. It was AWESOME!! The view was amazing! 360 degrees of city lights and Puget Sound. The food was incredible! Best filet I've ever eaten, followed by the Lunar Orbiter Ice Cream Sunday. The company was perfect! Thanks, Floyd, for showing us your home and spending the day with us.
 |
| Roots and Branches at EMP |
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| Sean in front of Roots and Branches |
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| Space Needle |
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| Our good friend and tour guide, David Floyd |
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| View from the top |
Friday, March 11, 2011
Thankfulness
I feel that after that last post I need to express thankfulness for our many blessings. Sean came home from Iraq alive, and all things considered, in relatively good condition. We have three wonderful children (if you overlook the teenage stuff ha ha!). We have a home, a car, food to eat, money to pay the bills. Sean has doctors who care about him and work hard to find ways to help him. Sean is moving forward with his cycling goals. I can afford to stay home and care for him. We are surrounded by family who cares for us.
I have a tendency to get very dark, but I do see the bright side. It is hard for me to look beyond sometimes when there seems to be one thing after another assaulting us.
We are extremely fortunate to be here, to be together, to have each other as we learn to live this new life.
I have a tendency to get very dark, but I do see the bright side. It is hard for me to look beyond sometimes when there seems to be one thing after another assaulting us.
We are extremely fortunate to be here, to be together, to have each other as we learn to live this new life.
Where is That Damn Tunnel?
"Comments: This family has been under much stress related to PTSD, job, etc. However, they feel that they are just now getting appropriate services in place and are beginning to see a light at the end of the tunnel."
--Notes signed by social worker in June 2008
August 7, 2011 will be six years from the day Sean left in support of Operation Iraqi Freedom.
March 25, 2011 will mark the five year anniversary of Sean's injury.
On May 10th it will be four years since Sean returned home.
No wonder we're exhausted and feel like there is no end in sight. . . .
January brought numerous appointments, trips, and frustrations. Sean had 12 appointments this month, all but two were out of town. We don't have anything to complain about when it comes to the quality of care provided by the VA doctors Sean is currently seeing. Our case worker is outstanding. Staff is friendly and helpful. However, in the VA system only certain healthcare needs can be met by our local CBOC (Community Based Outpatient Clinic). For other needs, we are referred to the VAMC (VA Medical Center) in Sioux Falls.
The travel time is overwhelming (we have put 20,000 miles on since July!!), especially given winter driving conditions and that Sean can't drive. Over the years it has taken much time away from our children at home and created extra problems there as well. It has made it impossible for me to work.
Another issue we find is that many doctors do not work for the VA full time, so it makes coordinating appointments difficult. We may have an appointment on Monday with one provider, but cannot see another until Tuesday or Friday as he is only at the VA two days a week. Or, after rearranging an appointment to coincide with another trip, a nurse will call with a schedule change from the other doctor and we are back at square one. It's also frustrating that we drive six hours round trip for a 20 minute appointment as in the case of Sean's recheck following sinus surgery.
It seems our best case scenario would be outsourcing the routine things like sinus surgery and colonoscopy to local providers. For the VA, however, it is more cost-effective to have appointments in-house. We could go on our own to private providers and submit through insurance, but we have found that using civilian providers without access to Sean's full medical history creates a monster of its own.
We have been traveling weekly for his PTSD therapy since June. Sean works well with Dr. CV and I'm able to sit in on their sessions, so we will continue to travel as the benefits outweight the inconvenience. For February and March they are trying V-Tel (via television screens) so we will meet with her from Aberdeen instead of in Sioux Falls. It is extremely convenient, however, it lacks the more personal face-to-face feeling. She will be taking some time off in April and we will reevaluate at that time. We will continue to travel to see her if necessary because their working relationship is so important to his healing.
Sean has an OEF/OIF peer support group that meets monthly in Sioux Falls. He enjoys this group as it is a place where he feels he can contribute with advice for newly injured vets.
There is finally a psychiatrist traveling to Aberdeen who will see Sean on a monthly basis. Nine months have passed since the VA ended their contract with Dr. K and this is the first psychiatrist Sean has seen since. Scary considering the number of medications he takes that can only be prescribed by his psychiatrist. Sean and Dr. R seemed to bond right away, so while the VA is still looking for a permanent psychiatrist at the CBOC, Sean wants to continue to see Dr. R even if it means traveling to Sioux Falls or using V-Tel. I am willing to travel for these appointments as I believe finding someone Sean connects with is a key factor in his success.
In the last month we have visited the emergency room three times for stabbing eye pain and once because he fell and hit his head on the floor.
Sean received a CPAP (Continuous Positive Airway Pressure) machine for his sleep apnea following his sleep studies. The first two or three nights I don't think either of us got any sleep as he was constantly adjusting and readjusting the machine and facial mask. I think the snoring would have been more restful (for me anyway). When he uses it and can leave it alone, he does sleep without snoring and appears more rested.
Lately, Sean has had difficulty filling his weekly medication containers. He used to have a system for filling and keeping pills straight. I have strongly encouraged this as it's critically important for him to know what medications he takes and when in the event that I am not here to help. Recently I have noticed he frequently misses his afternoon medications, even though he tells me he took them. He is also struggling to take his medications at a regular time. I have started filling his pill containers again and have gone back to reminding him three times a day to take his pills.
I have used Cozi to set up daily and weekly schedules and reminders. We print Sean a weekly schedule and I also have reminders sent to his phone via text message. This would be a wonderful system if he remembered to check his schedule, carry his phone, or read his text messages. I am now thinking I will need to incorporate a morning meeting where we cover the day's plans and hopefully work to a point where he can get through the day with minimal reminders. He wants to be independent. He wants to get more out of his day, especially with his cycling schedule now in place.
I recently ordered some books about veterans with TBI and PTSD to hopefully broaden my understanding and feel less alone. One thing that eats at me is while his behavior and symptoms might be normal, it's not normal compared to how he used to be. As one dear friend in a similar situation said to me, "He is not the man I married." OH WOW!! I have thought that so many many times, and feel tremendous guilt that I can think that way about my husband, but it is so true. The man I married wasn't angry or selfish or needy. He didn't blow up over minor things or say things to hurt. He did not put himself above the rest of us. The toll these years has taken on our family and our marriage is immense. I know we won't ever "go back" to the way it was, but I wonder if we will "go forward?"
Somedays, it feels like we are stuck in a relentless game of Whack-A-Mole because something is always popping up--appointments, kids, on and on and on. . . .
Is anyone out out there to shine a light at the end of this tunnel? It's pretty dark in here.
--Notes signed by social worker in June 2008
August 7, 2011 will be six years from the day Sean left in support of Operation Iraqi Freedom.
March 25, 2011 will mark the five year anniversary of Sean's injury.
On May 10th it will be four years since Sean returned home.
No wonder we're exhausted and feel like there is no end in sight. . . .
January brought numerous appointments, trips, and frustrations. Sean had 12 appointments this month, all but two were out of town. We don't have anything to complain about when it comes to the quality of care provided by the VA doctors Sean is currently seeing. Our case worker is outstanding. Staff is friendly and helpful. However, in the VA system only certain healthcare needs can be met by our local CBOC (Community Based Outpatient Clinic). For other needs, we are referred to the VAMC (VA Medical Center) in Sioux Falls.
The travel time is overwhelming (we have put 20,000 miles on since July!!), especially given winter driving conditions and that Sean can't drive. Over the years it has taken much time away from our children at home and created extra problems there as well. It has made it impossible for me to work.
Another issue we find is that many doctors do not work for the VA full time, so it makes coordinating appointments difficult. We may have an appointment on Monday with one provider, but cannot see another until Tuesday or Friday as he is only at the VA two days a week. Or, after rearranging an appointment to coincide with another trip, a nurse will call with a schedule change from the other doctor and we are back at square one. It's also frustrating that we drive six hours round trip for a 20 minute appointment as in the case of Sean's recheck following sinus surgery.
It seems our best case scenario would be outsourcing the routine things like sinus surgery and colonoscopy to local providers. For the VA, however, it is more cost-effective to have appointments in-house. We could go on our own to private providers and submit through insurance, but we have found that using civilian providers without access to Sean's full medical history creates a monster of its own.
We have been traveling weekly for his PTSD therapy since June. Sean works well with Dr. CV and I'm able to sit in on their sessions, so we will continue to travel as the benefits outweight the inconvenience. For February and March they are trying V-Tel (via television screens) so we will meet with her from Aberdeen instead of in Sioux Falls. It is extremely convenient, however, it lacks the more personal face-to-face feeling. She will be taking some time off in April and we will reevaluate at that time. We will continue to travel to see her if necessary because their working relationship is so important to his healing.
Sean has an OEF/OIF peer support group that meets monthly in Sioux Falls. He enjoys this group as it is a place where he feels he can contribute with advice for newly injured vets.
There is finally a psychiatrist traveling to Aberdeen who will see Sean on a monthly basis. Nine months have passed since the VA ended their contract with Dr. K and this is the first psychiatrist Sean has seen since. Scary considering the number of medications he takes that can only be prescribed by his psychiatrist. Sean and Dr. R seemed to bond right away, so while the VA is still looking for a permanent psychiatrist at the CBOC, Sean wants to continue to see Dr. R even if it means traveling to Sioux Falls or using V-Tel. I am willing to travel for these appointments as I believe finding someone Sean connects with is a key factor in his success.
In the last month we have visited the emergency room three times for stabbing eye pain and once because he fell and hit his head on the floor.
Sean received a CPAP (Continuous Positive Airway Pressure) machine for his sleep apnea following his sleep studies. The first two or three nights I don't think either of us got any sleep as he was constantly adjusting and readjusting the machine and facial mask. I think the snoring would have been more restful (for me anyway). When he uses it and can leave it alone, he does sleep without snoring and appears more rested.
Lately, Sean has had difficulty filling his weekly medication containers. He used to have a system for filling and keeping pills straight. I have strongly encouraged this as it's critically important for him to know what medications he takes and when in the event that I am not here to help. Recently I have noticed he frequently misses his afternoon medications, even though he tells me he took them. He is also struggling to take his medications at a regular time. I have started filling his pill containers again and have gone back to reminding him three times a day to take his pills.
I have used Cozi to set up daily and weekly schedules and reminders. We print Sean a weekly schedule and I also have reminders sent to his phone via text message. This would be a wonderful system if he remembered to check his schedule, carry his phone, or read his text messages. I am now thinking I will need to incorporate a morning meeting where we cover the day's plans and hopefully work to a point where he can get through the day with minimal reminders. He wants to be independent. He wants to get more out of his day, especially with his cycling schedule now in place.
I recently ordered some books about veterans with TBI and PTSD to hopefully broaden my understanding and feel less alone. One thing that eats at me is while his behavior and symptoms might be normal, it's not normal compared to how he used to be. As one dear friend in a similar situation said to me, "He is not the man I married." OH WOW!! I have thought that so many many times, and feel tremendous guilt that I can think that way about my husband, but it is so true. The man I married wasn't angry or selfish or needy. He didn't blow up over minor things or say things to hurt. He did not put himself above the rest of us. The toll these years has taken on our family and our marriage is immense. I know we won't ever "go back" to the way it was, but I wonder if we will "go forward?"
Somedays, it feels like we are stuck in a relentless game of Whack-A-Mole because something is always popping up--appointments, kids, on and on and on. . . .
Is anyone out out there to shine a light at the end of this tunnel? It's pretty dark in here.
Thursday, March 10, 2011
Caregivers of Veterans--Serving on the Homefront
Caregivers of Veterans – Serving on the Homefront
Report of Study Findings
November, 2010
They count on you 24 hours a day, so you are never able to relax because you are always worried about them.—Focus Group 6
It’s really affected our son tremendously...he’s been depressed and had severe anxiety...there needs to be a resource that we can be able to reach out to other people, especially for the kids so that they understand that they’re not alone...I’ve heard my kids say several times, “Nobody else gets it. Nobody else understands what I’m going through, especially at school.”—Interviewee #26
Impact of Caregiving
Perhaps because of their increased burden of care, caregivers of veterans report a greater impact of caregiving on their lives than caregivers in general do. Moreover, the caregivers of veterans who have PTSD, TBI, or mental illness such as depression or anxiety are even more likely to suffer many impacts of caregiving—on health, emotional stress, feelings of isolation, the caregiver’s marriage and children, and finances. The heightened impact of providing care to a veteran is manifest in a number of ways. Overall, twice as many caregivers of veterans consider their caregiving situation to be highly stressful than do caregivers of adults nationwide (68% vs. 31%) and three times as many say there is a high degree of physical strain (40% vs. 14%). Of those who are currently married, separated, or divorced, three‑quarters say caregiving or the veteran’s condition placed a strain on their marriage (74%). Among the 30% who have children under the age of 18 in the household, two‑thirds report having spent less time with their children than they would like (69%) and 57% report that their children or grandchildren had emotional or school problems as a result of their caregiving or the veteran’s condition.
Providing care to a veteran with a service‑related condition has widespread impacts on the caregiver’s health. Large proportions report increased stress or anxiety (88%) or sleep deprivation (77%). Healthy behaviors—such as exercising, eating habits, and going to one’s own doctor and dentist appointments on
schedule—decline for roughly six in ten, and similar proportions have weight gain/loss or experience depression.
Of the caregivers of veterans who were employed at some point while serving as a caregiver, a large share experience employment changes that result in a loss of income or benefits. Six in ten (62%) cut back the number of hours in their regular schedule. Half (47%) stopped work entirely or took early retirement, while fewer than one in ten nationally reported either of these impacts. Half of caregivers of veterans feel a high
degree of financial hardship (50%), compared to 13% nationally.
The conditions for which veterans need care differ greatly from the typical care recipient population. Large proportions of caregivers of veterans say the veteran has mental illness such as depression or anxiety (70%) or post traumatic stress disorder (PTSD) (60%), whereas nationally, mental or emotional health problems are reported by only 28%. Other top conditions reported by caregivers of veterans include traumatic brain injury (TBI) (29%), diabetes (28%), and paralysis or spinal cord injury (20%).
Of note, eight in ten caregivers (80%) report their veteran has two or more of the ten specific conditions asked about, and two‑thirds (67%) name additional conditions such as bone, joint, or limb problems (24%), hearing or ear problems (12%), heart conditions (9%), neuropathy/nerve issues (9%), etc. Thus, strategies to inform, educate, and support caregivers must address multiple needs.
Caregiving Challenges
The top challenges faced by caregivers of veterans—each experienced by at least two‑thirds of caregivers—are:
Recommendations
1. Provide Training and Information for Common Veteran Conditions
The friends and family that I had before the incident don’t understand…his mom said to me recently, “He’s not in the hospital anymore. I don’t understand what’s so difficult for you guys. He’s all better, right? If he was sick, they would have kept him in the hospital.” Uh‑huh, yeah...I barely have the energy to keep my family afloat as it is. I do not have the energy to have to convince you that your son is damaged beyond repair.—Interviewee #14
The best way to describe it would be that you know something is attainable. You know that a program is out there, but you’re in a maze. You just can’t figure out how to get there and at every turn somebody says no...I would call the VA locally, and they wouldn’t know anything about it. They would tell me that I must be wrong because that doesn’t exist. I would quote the regulation that it exists under, and they would say, “I have to look into it,” and then you wouldn’t hear from them for six months.—Caregiver #29
Report of Study Findings
November, 2010
They count on you 24 hours a day, so you are never able to relax because you are always worried about them.—Focus Group 6
It’s really affected our son tremendously...he’s been depressed and had severe anxiety...there needs to be a resource that we can be able to reach out to other people, especially for the kids so that they understand that they’re not alone...I’ve heard my kids say several times, “Nobody else gets it. Nobody else understands what I’m going through, especially at school.”—Interviewee #26
Impact of Caregiving
Perhaps because of their increased burden of care, caregivers of veterans report a greater impact of caregiving on their lives than caregivers in general do. Moreover, the caregivers of veterans who have PTSD, TBI, or mental illness such as depression or anxiety are even more likely to suffer many impacts of caregiving—on health, emotional stress, feelings of isolation, the caregiver’s marriage and children, and finances. The heightened impact of providing care to a veteran is manifest in a number of ways. Overall, twice as many caregivers of veterans consider their caregiving situation to be highly stressful than do caregivers of adults nationwide (68% vs. 31%) and three times as many say there is a high degree of physical strain (40% vs. 14%). Of those who are currently married, separated, or divorced, three‑quarters say caregiving or the veteran’s condition placed a strain on their marriage (74%). Among the 30% who have children under the age of 18 in the household, two‑thirds report having spent less time with their children than they would like (69%) and 57% report that their children or grandchildren had emotional or school problems as a result of their caregiving or the veteran’s condition.
Providing care to a veteran with a service‑related condition has widespread impacts on the caregiver’s health. Large proportions report increased stress or anxiety (88%) or sleep deprivation (77%). Healthy behaviors—such as exercising, eating habits, and going to one’s own doctor and dentist appointments on
schedule—decline for roughly six in ten, and similar proportions have weight gain/loss or experience depression.
Of the caregivers of veterans who were employed at some point while serving as a caregiver, a large share experience employment changes that result in a loss of income or benefits. Six in ten (62%) cut back the number of hours in their regular schedule. Half (47%) stopped work entirely or took early retirement, while fewer than one in ten nationally reported either of these impacts. Half of caregivers of veterans feel a high
degree of financial hardship (50%), compared to 13% nationally.
The conditions for which veterans need care differ greatly from the typical care recipient population. Large proportions of caregivers of veterans say the veteran has mental illness such as depression or anxiety (70%) or post traumatic stress disorder (PTSD) (60%), whereas nationally, mental or emotional health problems are reported by only 28%. Other top conditions reported by caregivers of veterans include traumatic brain injury (TBI) (29%), diabetes (28%), and paralysis or spinal cord injury (20%).
Of note, eight in ten caregivers (80%) report their veteran has two or more of the ten specific conditions asked about, and two‑thirds (67%) name additional conditions such as bone, joint, or limb problems (24%), hearing or ear problems (12%), heart conditions (9%), neuropathy/nerve issues (9%), etc. Thus, strategies to inform, educate, and support caregivers must address multiple needs.
Caregiving Challenges
The top challenges faced by caregivers of veterans—each experienced by at least two‑thirds of caregivers—are:
- Not knowing what to expect medically with the veteran’s condition
- Not being aware of Department of Veterans Affairs (VA) services that could help
- Not knowing how to address PTSD or mental illness
- Difficulty getting through bureaucracies in order to obtain services
- Not knowing where to obtain financial assistance
- Not knowing where to turn to arrange a break from caregiving
- Not knowing where to obtain specialized care
Recommendations
1. Provide Training and Information for Common Veteran Conditions
- Create condition‑specific caregiver information packets and training, and provide them to caregivers when they first take on their caregiving role.
- Offer a toll‑free 24‑hour phone line with support, information, and referrals.
- Develop a central website for caregiver support groups, forums, and blogs.
- Establish a caregiver peer mentoring program.
- Ensure that all caregivers receive a directory of VA programs and services as well as other governmental and community caregiver resources.
- Teach caregivers about advocacy resources and methods.
- Create a list of financial assistance resources available to veterans and their caregivers.
- Direct caregivers to legal assistance.
- Facilitate caregiver searches for specialized care facilities.
- Develop programs that connect caregivers of veterans with volunteers.
- Help caregivers find respite care.
- Improve veteran transportation services.
- Package existing information in a way clearly meant for family caregivers, with “family” defined broadly to include those who are neither spouses nor parents of the veteran.
- Review existing materials to ensure that they meet caregivers’ needs, involving caregivers in the review process.
- Improve methods for connecting caregivers to existing information.
- Periodically sensitize health providers about the important role that caregivers play in providing care to veterans.
- Ensure that caregivers are shown how to properly administer medical treatments, care, or medications.
- Empower care managers to provide services for the caregivers themselves.
- Help caregivers plan for veterans’ transitions.
- Explain veterans’ condition to other family members.
The friends and family that I had before the incident don’t understand…his mom said to me recently, “He’s not in the hospital anymore. I don’t understand what’s so difficult for you guys. He’s all better, right? If he was sick, they would have kept him in the hospital.” Uh‑huh, yeah...I barely have the energy to keep my family afloat as it is. I do not have the energy to have to convince you that your son is damaged beyond repair.—Interviewee #14
The best way to describe it would be that you know something is attainable. You know that a program is out there, but you’re in a maze. You just can’t figure out how to get there and at every turn somebody says no...I would call the VA locally, and they wouldn’t know anything about it. They would tell me that I must be wrong because that doesn’t exist. I would quote the regulation that it exists under, and they would say, “I have to look into it,” and then you wouldn’t hear from them for six months.—Caregiver #29
I'll get you, my pretty, and your little dog, too!
You have no power here! Begone, before somebody drops a house on you, too!
One week in mid-January I spent several hours on the phone with Dr. A who called to gather more information on Sean's case for the MEB. We talked at length about Sean's abdominal problems, PTSD, TBI, and every other symptom under the sun. Finally, Dr. A told me that the information in Sean's records and the information I was giving him correlate, but it does not go with what he was asked to put in his report. Wait. What? What he was ASKED to put in his report does not match the information in the health records or information I am giving him? I wonder why my faith in this system is shaken.
Dr. D who sits on the PEB board at Ft. Lewis, WA was not happy with the ophthalmology report in Sean’s packet. The examining ophthalmologist at Ft. Riley, Dr. P, retired prior to writing his report so the new ophthalmologist wrote a report based on the notes left behind. Also, somewhere in Sean’s file someone wrote “no light perception” and although we know that’s not true, Dr. D wanted it re-tested. Dr. D was also not happy with the neuro ophthalmologist report we had done last spring by Dr. S in Minot because he is not a military neuro ophthalmologist.
We traveled to Ft. Riley the last week in January where Sean had an examination by ophthalmologist Dr. B for more than three hours. Sean was also scheduled for a mental health evaluation later that day “just in case” they didn’t like the results of the eye exam. After we reported to Mental Health, we saw Dr. B come down and consult with psychologist Dr. M. We were then told that before they proceeded with the mental health evaluation Sean would need to go to Madigan Army Medical Center at Ft. Lewis, WA for an examination by a military neuro ophthalmologist. After that is completed, we will need to return to Ft. Riley for the mental health portion.
Sean is extremely upset that the military will not accept the report from the neuro ophthalmologist he saw last year and that they continue to make him reprove his disabilities. It is also disheartening that although Senator Johnson's office made a formal request for this to be our last trip to Kansas, we may still have to return.
In approximately 3 weeks we will reach the 1 year mark since Sean's first MEB examination and his paperwork and tests will start to outdate. We are working with our FRC, Rosa Hamilton, and Tonya Peterson of Senator Johnson’s office to get things resolved as quickly as possible. Sean is very frustrated that the military is trying to dismiss his vision loss and blame it on his mental health. In my opinion, if his blindness is psychological (which I doubt) then the military and VA have spent three years doing nothing about it. . . that's service.
How long can they drag this out? How many times do they need to evaluate so they can get the information they need to make a diagnosis. . . .the diagnosis they want vs one that is accurate?
It's been over a year since we testified on "Seamless Transition" and were promised that things would be resolved. Hmm. . .
In better news, the VA finally increased his PTSD rating due to the number of medications he is on to manage symptoms and they also finally acknowledge his TBI instead of lumping it in with headaches. They still did not grant a permanent and total rating for the vision and want to re-evaluate in the future.
One week in mid-January I spent several hours on the phone with Dr. A who called to gather more information on Sean's case for the MEB. We talked at length about Sean's abdominal problems, PTSD, TBI, and every other symptom under the sun. Finally, Dr. A told me that the information in Sean's records and the information I was giving him correlate, but it does not go with what he was asked to put in his report. Wait. What? What he was ASKED to put in his report does not match the information in the health records or information I am giving him? I wonder why my faith in this system is shaken.
Dr. D who sits on the PEB board at Ft. Lewis, WA was not happy with the ophthalmology report in Sean’s packet. The examining ophthalmologist at Ft. Riley, Dr. P, retired prior to writing his report so the new ophthalmologist wrote a report based on the notes left behind. Also, somewhere in Sean’s file someone wrote “no light perception” and although we know that’s not true, Dr. D wanted it re-tested. Dr. D was also not happy with the neuro ophthalmologist report we had done last spring by Dr. S in Minot because he is not a military neuro ophthalmologist.
We traveled to Ft. Riley the last week in January where Sean had an examination by ophthalmologist Dr. B for more than three hours. Sean was also scheduled for a mental health evaluation later that day “just in case” they didn’t like the results of the eye exam. After we reported to Mental Health, we saw Dr. B come down and consult with psychologist Dr. M. We were then told that before they proceeded with the mental health evaluation Sean would need to go to Madigan Army Medical Center at Ft. Lewis, WA for an examination by a military neuro ophthalmologist. After that is completed, we will need to return to Ft. Riley for the mental health portion.
Sean is extremely upset that the military will not accept the report from the neuro ophthalmologist he saw last year and that they continue to make him reprove his disabilities. It is also disheartening that although Senator Johnson's office made a formal request for this to be our last trip to Kansas, we may still have to return.
In approximately 3 weeks we will reach the 1 year mark since Sean's first MEB examination and his paperwork and tests will start to outdate. We are working with our FRC, Rosa Hamilton, and Tonya Peterson of Senator Johnson’s office to get things resolved as quickly as possible. Sean is very frustrated that the military is trying to dismiss his vision loss and blame it on his mental health. In my opinion, if his blindness is psychological (which I doubt) then the military and VA have spent three years doing nothing about it. . . that's service.
How long can they drag this out? How many times do they need to evaluate so they can get the information they need to make a diagnosis. . . .the diagnosis they want vs one that is accurate?
It's been over a year since we testified on "Seamless Transition" and were promised that things would be resolved. Hmm. . .
In better news, the VA finally increased his PTSD rating due to the number of medications he is on to manage symptoms and they also finally acknowledge his TBI instead of lumping it in with headaches. They still did not grant a permanent and total rating for the vision and want to re-evaluate in the future.
Cycling
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| Sean on his stationary training bike |
Resignation
With a heavy heart I turned in my resignation just before Christmas. After spending most of a year home with Sean and traveling weekly for appointments I could see that returning to a classroom of 25 first graders was not going to work into our plan. The demands of running a classroom all day, correcting papers and writing plans at night and on weekends, and the uncertainties surrounding Sean's needs do not mesh well.
After the deed was done, I felt much better. Letting go so I can move forward. Due to other circumstances in our lives I have not even had sufficient time to tutor as I had during the fall. It is the right decision. Yet I find myself repeating it over and over to convince myself. Our family must come first, and this move will allow me to be more proactive for Sean.
Additionally, My father had a stroke after his last surgery and will not be able to have any additional procedures. I wanted to be sure my time was free to help him when he leaves the nursing home.
Now that I have had time to adjust, I must admit that having the time at 10:00 AM on a school day to type this while sitting on my couch in my pajamas and knowing I won't have recess duty--it's 3 degress this morning--reinforces that I have indeed made the right choice.
After the deed was done, I felt much better. Letting go so I can move forward. Due to other circumstances in our lives I have not even had sufficient time to tutor as I had during the fall. It is the right decision. Yet I find myself repeating it over and over to convince myself. Our family must come first, and this move will allow me to be more proactive for Sean.
Additionally, My father had a stroke after his last surgery and will not be able to have any additional procedures. I wanted to be sure my time was free to help him when he leaves the nursing home.
Now that I have had time to adjust, I must admit that having the time at 10:00 AM on a school day to type this while sitting on my couch in my pajamas and knowing I won't have recess duty--it's 3 degress this morning--reinforces that I have indeed made the right choice.
Reflections and Resolutions
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| Jordan, Sean, Melissa, Erin, and Keeley Christmas 2010 |
I would like us to focus on the quality of the life we have, the day to day living and enjoying, finding happiness in the little moments, peace in the quiet times, acceptance during the difficult ones.
We have reached a point (long ago, actually) where there is no real treatment for Sean's medical issues. He will continue counseling for PTSD, and will work with the doctors to make medication changes where necessary. Barring any changes in his condition, we do not need to continually seek out medical opinions. It is what it is. Perhaps that will bring us peace.
That being said, he still has upcoming sinus surgery and sleep studies. The army has not completed the medical board, so there will be more appointments. However, we will not seek additional care except when he has changes in his condition.
Knowing what I know about the upcoming months as I write this (keep reading, you'll see) it makes me laugh! But when I started this post right after Christmas I thought I was on the right track.
Someday. . . .
Canadian Embassy
Only three months behind, not too bad all things considered. I wish I could say, "How much has changed!" But. . . we can get to that later.
The first week in December Sean and I visited the Candian Embassy in Washington, D.C. How in the world do two little South Dakotans wind up at the Canadian Embassy? Last July Sean attended a USABA cycling clinic in Colorado Springs where he was paired with his tandem cycling pilot Jeff Tracey. We met up with Jeff and his wife Katie at their home in Arlington, VA during the BVA Convention in D.C. in August. Katie works for the Canadian Emabassy in D.C. (Katie, I apologize that I don't remember your position.) So. . . when the Embassy announced the Partners in Defence: Battlefield and Long-Term Casualty Care health forum, it was suggested that Sean attend as a guest of the BVA as an OIF veteran.
Tuesday evening we were invited to dinner at the Embassy hosted by Deborah Lyons, Deputy Head of Mission. Ironically, Sean's placecard read Staff Sergeant (ret.) Sean Johnson--it takes the Canadian armed forces to retire him!
Following the meal, Sean was presented with a coin symbolizing the partnership between Canadian and American armed forces. Challenge coins are used as rewards or awards for outstanding service or performance of duty. The coins presented to American service members by the Canadian military are serialized. Sean's coin is number 253 of 750 to represent his date of injury 25 March 2006.
The forum on Wednesday was filled with technoligies available for casualty treatment on and off the battlefield, PTSD treatment, and long-term care including tele-health/e-health technology allowing daily remote contact between patients and their care team.
Anthony Principi, former US Secretary of Veterans Affairs, was the keynote speaker during the luncheon. We shared a table with him and with Art Wu, Subcommittee on Oversight and Investigations for the Department of Veterans Affairs. Sean was definitely impressed by the company surrounding him.
Initially, I was invited by Lieutenant Colonel Doug Martin to participate on a Q/A panel during the afternoon sessions which later became an invitation to speak and tell our story prior to the panel. I'm used to speaking to six and seven year olds, so an audience of 50 intelligent adults and experts was frightening to say the least. I highlighted the gaps, the misses, the problems we have found acquiring timely and proper medical and mental health care, the strain on the family, loss of jobs, frustrations.
What I took away from this experience was a renewed sense of hope and desire to make a difference, not just in our daily lives, but for those in similar circumstances. Just the other night I spoke with a friend whose husband also has a TBI, PTSD, and has lost an eye and we laughed and cried together over the parallels in our lives. I want to help others like us.
LT COL Martin proposed hosting a seminar for families and caregivers, the part that's left out. He invited me to participate when he gets the idea pulled together. I would be thrilled to participate and include the caregivers I know.
The words that resonnated with me most were spoken by Captain James Dunne (paraphrased) a person with a mild TBI can have a conversation and seem perfectly normal. But you can leave him in the grocery store and he won't be able to find his way out. We find that all the time! Yet friends, family members, and even doctors will say he seems fine, or he doesn't act or talk like he has a brain injury. But I say, spend a week at my house. Live with him. The moment to moment struggles he has have altered his life, and ours, immensely. Ironically, the good days make the bad days seem that much worse.
On Thursday Tom Zampieri took us around to meet with staff from the offices of Senator Isakson, Senator Akaka, Senator Johnson, and Congressman Walz. We also met with Martin Herbert Staff Director, Subcommittee on Oversight and Investigations for the House Veterans Affairs Committee. These meetings gave us the opportunity to express our concerns regarding transitioning veterans from DoD to VA, the Caregiver Bill, and the Vision Center of Excellence.
While in DC we stayed with our good friend Christina Hitchcock. She welcomed us into her beautiful home, drove us around the city, and relaxed with us at the end of the day. It was a wonderful break from hotel living and gave us a chance to visit and catch up. We talked at length about how we can incorporate more for the caregivers into the BVA. She inspires me to pursue my goal (yet a baby in my mind) of turning things around for veterans' families.
It was an awe inspiring trip for two midwestern kids!
The first week in December Sean and I visited the Candian Embassy in Washington, D.C. How in the world do two little South Dakotans wind up at the Canadian Embassy? Last July Sean attended a USABA cycling clinic in Colorado Springs where he was paired with his tandem cycling pilot Jeff Tracey. We met up with Jeff and his wife Katie at their home in Arlington, VA during the BVA Convention in D.C. in August. Katie works for the Canadian Emabassy in D.C. (Katie, I apologize that I don't remember your position.) So. . . when the Embassy announced the Partners in Defence: Battlefield and Long-Term Casualty Care health forum, it was suggested that Sean attend as a guest of the BVA as an OIF veteran.
Tuesday evening we were invited to dinner at the Embassy hosted by Deborah Lyons, Deputy Head of Mission. Ironically, Sean's placecard read Staff Sergeant (ret.) Sean Johnson--it takes the Canadian armed forces to retire him!
Following the meal, Sean was presented with a coin symbolizing the partnership between Canadian and American armed forces. Challenge coins are used as rewards or awards for outstanding service or performance of duty. The coins presented to American service members by the Canadian military are serialized. Sean's coin is number 253 of 750 to represent his date of injury 25 March 2006.
 |
The forum on Wednesday was filled with technoligies available for casualty treatment on and off the battlefield, PTSD treatment, and long-term care including tele-health/e-health technology allowing daily remote contact between patients and their care team.
Anthony Principi, former US Secretary of Veterans Affairs, was the keynote speaker during the luncheon. We shared a table with him and with Art Wu, Subcommittee on Oversight and Investigations for the Department of Veterans Affairs. Sean was definitely impressed by the company surrounding him.
Initially, I was invited by Lieutenant Colonel Doug Martin to participate on a Q/A panel during the afternoon sessions which later became an invitation to speak and tell our story prior to the panel. I'm used to speaking to six and seven year olds, so an audience of 50 intelligent adults and experts was frightening to say the least. I highlighted the gaps, the misses, the problems we have found acquiring timely and proper medical and mental health care, the strain on the family, loss of jobs, frustrations.
What I took away from this experience was a renewed sense of hope and desire to make a difference, not just in our daily lives, but for those in similar circumstances. Just the other night I spoke with a friend whose husband also has a TBI, PTSD, and has lost an eye and we laughed and cried together over the parallels in our lives. I want to help others like us.
LT COL Martin proposed hosting a seminar for families and caregivers, the part that's left out. He invited me to participate when he gets the idea pulled together. I would be thrilled to participate and include the caregivers I know.
The words that resonnated with me most were spoken by Captain James Dunne (paraphrased) a person with a mild TBI can have a conversation and seem perfectly normal. But you can leave him in the grocery store and he won't be able to find his way out. We find that all the time! Yet friends, family members, and even doctors will say he seems fine, or he doesn't act or talk like he has a brain injury. But I say, spend a week at my house. Live with him. The moment to moment struggles he has have altered his life, and ours, immensely. Ironically, the good days make the bad days seem that much worse.
On Thursday Tom Zampieri took us around to meet with staff from the offices of Senator Isakson, Senator Akaka, Senator Johnson, and Congressman Walz. We also met with Martin Herbert Staff Director, Subcommittee on Oversight and Investigations for the House Veterans Affairs Committee. These meetings gave us the opportunity to express our concerns regarding transitioning veterans from DoD to VA, the Caregiver Bill, and the Vision Center of Excellence.
While in DC we stayed with our good friend Christina Hitchcock. She welcomed us into her beautiful home, drove us around the city, and relaxed with us at the end of the day. It was a wonderful break from hotel living and gave us a chance to visit and catch up. We talked at length about how we can incorporate more for the caregivers into the BVA. She inspires me to pursue my goal (yet a baby in my mind) of turning things around for veterans' families.
It was an awe inspiring trip for two midwestern kids!
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| Canadian Embassy |
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| Embassy balcony with view of Capitol |
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| Melissa, Sean, Tom Miller, Tom Zampieri |
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| View of Capitol from the Embassy |
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| Sean and Jeff Tracey |
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| Sean and Tom Zampieri in the Cannon House Office Building (the rotunda where many news crews film their interviews) |
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| Outside the Capitol |
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| Sean with Anthony Principi, former US Secretary of Veterans Affairs |
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| Sean with Art Wu Subcommittee on Oversight and Investigations for the Department of Veterans Affairs |
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