My purpose in writing Yelling Through The Rage is for one reason only. I want to help the families and partners of combat veterans gain emotional strength, learn a little more of what is inside a combat warrior’s head and why they do what they do. If my story helps to encourage you to hang in there and get the help you and your family need, I’ve done my job. A human life, no matter how broken, is worthwhile.
MY ARTICLES: In the following links (or linked from the Blog), I will be posting different topics and how they affected me in addition to and how I reacted and handled our specific situations. A few of the topics I will address are; FEAR, anger, RAGE, STRESS, panic attacks, NUMBING, public outbursts, using humor, HIS LAST STEP, PERFECT ME and more. I will also address my feelings as a caregiver in BREATHE. My thoughts, experiences and the manner in which I handled our situations are not to be interpreted as a treatment or solution for you or your family. Please seek help from your local physician or healthcare facility.
Ed, a retired psychiatrist has shared his article on: OVERCOMING ABUSE
Our government and families must not ignore combat warriors or warriors with service connected illnesses. We must be there for them as they struggle to heal from service connected physical injuries and mental illness. It breaks my heart to see the suicides of men and women who traded their private lives to serve in our military only to take their lives to feel peace. I hope our story will encourage other service members and families to get help they need.
We are into a new year already. So far, it is turning out to be a very good one. After 6 years of claims and appeals, my husband received his mobility Van grant! Two days before our 48th anniversary, the white 2015 Toyota Sienna with a new Northstar conversion and only 29,000 miles, was delivered to the VA where it was inspected by driver rehab staff and approved. We had a little out of pocket to pay but it was worth it because it is a Toyota and the widest van made. My husband (Gerry) and I were so excited. I’m 5’6″ and when standing in the wheelchair area (where middle seats were), I only need to tip my head a bit. I opted for the middle area for the wheelchair rather than passenger front seat because it will be easier to guide him in and out. I also opted for the 4 point restraint rather than a big raised V shape restraint plate that I surely would have tripped over at some point. The first thing we did was drive on base and eat lunch. Two days later, we celebrated our 48th anniversary at our favorite restaurant. We have freedom to be together and enjoy things we use to. From rides, to lunches out, mall visits and parks, we intend to go as much as we can. Gerry is not able to transfer so he remains in his power chair the entire time. We are so grateful for those who worked so hard to get all the paper work done so we could enjoy our anniversary dinner. VMI Mobility Center in Phoenix was incredible. If you are in the process of looking for vans, ask for Stacy Fagan at VMI.
Hello again! I’m here to tell you pigs fly and hell froze over! Six years of waiting for claims and appeal and he finally received the grant papers for a van and the papers for house adaptation. Yes, they are nearly 6 years too late but I will definitely try to find a van for $20,000 that the VA can convert. We are looking forward to rides together and drive-threw lunches once in a while. Making the house adaptable for him is sadly a different story. He needs skilled 24/7 care now and I know the VA will not provide that at home. The up side is he has great veteran friends in the nursing home. They enjoy their meals together, the gentlemen’s breakfasts and veterans meetings. I think he knows all the residents by name and is liked by everyone.
Veterans and Families following this blog and Yelling Through The Rage Facebook page. Today was an incredible day. We have finally received unofficial word from DVA that my husband’s 2011 appeal has been completed. The following is a quote from his letter. “Service connection for loss of use of both feet due to severe bilateral lower extremity neuropathy (previous rated separately as peripheral neuropathy of the left and right lower extremities) associated with herbicide exposure granted with a 100% effective 2011. 2. Entitlement to special monthly compensation based on loss of use of both feet granted from 2011. 3. Entitlement to specially adapted housing is established (Appeal Resolved) Entitlement to automobile grant or other conveyance and adaptive equipment is established (Appeal Resolved).” Previously, he was rated 100% from PTSD alone.
I told my husband (G) many years ago, I would fight for him until my dying day to make sure he gets the care he deserves and is entitled to. I’m stubborn that way. Unfortunately, veterans who return home from war with illness or injury must fight a second battle for what should be awarded soon after discharge. During the five years of claim process, for every letter we received from the VA or any other government official, I immediately researched and replied with attachments. I downloaded G’s entire VA health history and requested his records from his tours in Vietnam. I read through every page and flagged ones that contained important information. I spent endless hours for what seems like forever, researching the VA’s procedural files and rating information. I left no stone unturned. As a nurse, my medical knowledge played an important role in understanding what I had to look for and provide in my replies. We used the DAV however, they really didn’t do anything, never knew where his file was and couldn’t answer the questions I asked. My best source of credible information was from a woman I have never met personally. We met via twitter and Facebook. Her husband is service connect with ALS. She continues to point me in the right direction when I get lost. Someday, I hope to meet her in person. Thank you Mary Hahn Ward. Thank you Congresswoman Martha McSally for prodding the Board of Veterans Appeals in Washington to pull G’s claim, wrapped in 4 years of cobwebs, and continue with the process. And then, there are my Facebook family and friends who supported me personally through 5 years of ups and downs with positive thoughts and a lot of love. Lastly, I would like to thank the Academy for recognizing a veteran’s wife with balls! LOL
I wish I could report something good happened, but I cannot. We are still waiting for final decision on his 2011 claim for grants to include home accessibility and a van. He is dependent on the VA vans to pick him up and transport him to his doctor’s appointments. The VA van either forgets to pick him up or is so late, the doctors refuse to see him and tell him to reschedule the appointment. I can’t begin to tell you how angry this makes me. Where are the “changes” that are suppose to be happening with all of the Veterans’ care?
There is one thing new. I have sent a letter to the Navy to request changes to his records to include his service-connected shrapnel injuries incurred from ground mortar attacks and injuries from shrapnel penetrating the helicopter during MedEvac attacks. I also requested that his severe peripheral neuropathy from service-connected Agent Orange be included as well. After all, agent orange IS an injury from war. My last request was for a Purple Heart as proof of validity is in his flight/strike records. Lastly, I have written an OPEN LETTER to candidate Donald Trump because he speaks more of Veteran’s needs than Hillary. I requested he use it in his campaign on behalf of all veterans and their caregivers. If you are able, please help me post the letter to as many websites as possible.
And here we are in a new year. I have posted a video of how severe peripheral neuropathy from Agent Orange affects his ability to take steps. You can see in this photo the muscle loss (atrophy) in his lower legs along with all of the fall injuries. What you can’t see is the nerve (axonal) death. His feet are shiny and there is no leg hair from feet to combat boot height. I shot the photo with the camera pointed down so it is a little misleading as his calf muscles are atrophied as well. VIDEO is on this PAGE.
November 16 2015
Time passes quickly during stressful times. A couple of weeks ago, my husband’s service dog alerted me that something was wrong. It was 3:00 a.m. She was barking first at the back door, then the front door. I think she was trying to alert the firemen who have come to help on several occasions. I found my husband, Gerry, face down on the floor in his room. He had fallen through the side rails of his hospital bed. He was paralyzed. This is what happens when one has severe peripheral neuropathy and a fever. I called 911 and our friendly fire fighters came and dispatched an ambulance. I followed them to the VA hospital and when I arrived, the ER physician was examining Gerry. He had a low-grade fever. They sent blood and urine to the lab. The physician took one look at my face and asked if I was his wife. He guided me to a room and a social worker joined us. We sat down and the doctor told me he could see the strain and stress in my face, that I have had enough and couldn’t handle 24/7 care any longer. I agreed and then the tears came tumbling out. We talked briefly about the process of nursing home placement and costs. It was more than I could take in at one time. Gerry spent 9 days in the hospital with a urinary tract infection and was discharged to a nursing home for 32 days of rehabilitation.
For the first few nursing home days I stayed with him for several hours at a time only to return home and sob. I missed his presence. I felt a failure in his long term care. I spent nights awake. How was I going to afford this? Is the VA going to pay in full for long term care? What happens at the end of his 32-day rehab? Will he be discharged and in my care again? If he stays in the nursing home will he be put on Medicaid? How will I live on the income that is left over after they take part of his VA and Social Security benefits for nursing home care? How was I going to pay my bills, eat, pay for household maintenance, insurance, veterinarian bills, phone bill, utilities and a multitude of other things? Would the nursing home put a lien on our home? So many questions, nearly no answers.
Our daughter suggested, and found, an elder attorney. We made an appointment and she came with me. The visit left me more confused than before. I had wills in place but is that enough? He spoke of quitclaim deed, a new will, living trust, how Medicaid would impact us financially. Today, I’m still asking myself questions as to what I need to do. I wasn’t prepared for all this to happen so quickly. It is a scary, and stressful, situation.
I’m going to take it a day at a time and try to figure out one solution at a time.
September 15 2015
Today has been a very frustrating day for me. I patched walls as I do everyday. I’ve patched holes the size of the palm of my hand, scratches 6-15 inches and dents of all sizes. Several months ago, I had my car doors repaired because my husband thought there was enough space (width) for him to go between the garage wall and my car to enter the house. The chair scratched and dented the entire width of both car doors.
If you read Yelling Through The Rage, I mentioned my husband’s visual spatial deficit and poor judgment. He has some dementia (early Alzheimer’s) not associated with his peripheral neuropathy. Patients with visual spatial impairment have great difficulty localizing objects in two and three dimensional space. They have difficulty judging distance from themselves to objects in space. Stereopsis (binocular depth perception) is often impaired. Basically, he doesn’t know where his body and chair are in space.
The increasing number of power chair accidents are worrisome to me because this house may be my bread and butter some day so I’m really struggling to keep it in top condition. Other than padding the house, I’m at a loss as to what to do. I have padded his chair with a bit of foam, but that doesn’t seem to help at all.
This evening, he was in our U-shaped kitchen and spun his chair around and put six new scratches on our year old refrigerator! I’m an artist. I tape my watercolor paper to 1/2 inch foam boards. Now there’s an idea! I grabbed a few boards, a razor, cut pieces and taped them to the doors of the refrigerator with painter’s tape. Woohoo! Isn’t there a genius out there that could invent an all purpose spray-on padding I could use for walls, appliances and his chair?
I can tell my husband isn’t happy with all the new kitchen art, but I make light of it and quickly turn his focus to golfing with his new stand-up golf machine when the AZ weather cools.
The writing on the fridge door is SUPPOSE to say: You do not KNOW where you are in space. You have poor judgment. I guess I should write another sentence for me that says I miss words when I write, type or speak. This is true.
It’s September already. Another month has slipped past me. Still no news or decision on the VA claim filed in 2011. Yet, deserving Afghanistan veterans are filing claims and receiving decisions in a four month time period. I’m angry because I feel like the VA is waiting for the old soldiers to die off. Picking my husband up off the floor with a hoyer lift on a daily basis because his power chair does not fit through our doorways is extremely frustrating for me but most importantly, physically and emotionally painful for him. This morning an ambulance transported him to the VA hospital because of another fall injury. NO veteran who has a service connected illness, is unable to walk and depends on a power chair for locomotion should have to fight for home accessibility and a transportation vehicle. NO VETERAN.
It is July 18th and we are still waiting to hear from the remanded portion of the VA claim filed in 2011. The judge needed more information for SAH grant and Van grant. If they would just read my husband’s VA medical file, they would have all the information needed to make a decision. Each day we look in the mail box hoping to see it stuffed with a big manilla envelope.
I’ve been spending a lot of time googling mobility vans and found the one of my dreams that would be perfect for transporting my husband and his service dog! It is a Toyota Sienna mobility van and has the most head room of any specialty van. But the price crushes my enthusiasm. Sixty-five thousand dollars? Oh my. 🙁 I can’t remember the last time we went on a trip, even an over night trip! I would love to pack a van and take him and his service dog, Apple, on occassional trips around the state.
Three days ago, I contacted the VA to see if they would consider a different power chair (or seat) for my husband. He needs one that will not only elevate his feet for better circulation but recline for more comfort and quick naps. He has a chair assessment scheduled for the end of August.
There is good news and bad news to report this morning. My husband filed a claim in 2011 for service connection for agent orange, a house adaptation grant and a van grant. All were denied. I filed an immediate appeal and asked it be sent to the Board of Appeals (BVA) in Washington, DC. Even though the Phoenix VA “presumed” he was sprayed based on his records of in country service from ’67-’69 and had one of the diseases on the list from Agent Orange exposure, they denied it. I recently called the BVA and asked how much longer it was going to take and the response was “most likely years”. Ackkkkkkk!!!!!
The good news is, I took action and called Congresswoman Martha McSally’s office. They immediately got on the case making calls to the BVA and alerted me on all conversations. Martha made it her mission to move the appeal forward. It took only two weeks. In the previous couple of years, Sen. John McCain, Congressman Ron Barber, and President Obama did nothing but send a letter.
The good news is his peripheral neuropathy is now service connected…FINALLY! The grants to make our home accessible and the van to transport him were remanded. I have no idea how long that is going to take but at least it wasn’t a denial.
One day in the life of my husband’s peripheral neuropathy from Agent Orange. Just like a man, he saved the chips! Apple, his service dog, thinks he will share. I move the electric Hoyer Lift into the kitchen, roll him on his side and slide the detached seat under him then reconnect the seat and lift. Next I roll the lift to his wheelchair and drop him into it, detach the lift seat, remove and he’s good to go. (Click photos to enlarge)
The cloud of PTSD still lingers in our home, but we are both thankful his medications are still effective, for the most part. G. enjoys when family and friends visit. His power chair is his navigational tool due to loss of use of both feet and legs. And sadly, outings are infrequent do to the lack of a transport vehicle. G. has severe peripheral neuropathy which had it beginnings in Vietnam due to Agent Orange. In 2011 we filed a claim with the VA for house adaptation to accommodate his power chair and for a grant for mobility van. The VA denied the claim stating his peripheral neuropathy was not connected to his service in Vietnam, while his physicians stress that Agent Orange is the cause. All other causes were ruled out by extensive testing. Peripheral neuropathy IS one of the conditions in the VA’s list of service connected illnesses related to Agent Orange. So, I appealed the denial the day after we received notice of their decision (January 2012) and recently called VA appeals for information on the status of the appeal. I was told it could take another 5-10 years before the decision is made. I find this appalling, yet my husband certainly isn’t the only one waiting for the VA to act. It is frustrating for us both when he continuously misses doctor’s appointments at the VA hospital and clinic because the VA shuttle service forgets to pick him up. Stay tuned, and continue to support and help YOUR warrior!
© 2015 Jean A Sumption
BE SURE TO READ MY OTHER ARTICLES (also in top menu) and check back for updates and new articles!!! SEE YOU SOON. Thanks for stopping by. Thank you for your service!
PTSD is not something of which to be ashamed. It doesn’t make one a failure. Anyone can have PTSD. It has nothing to do with whether one is tough or not. There are varying degrees and intensity of PTSD and all should be addressed by a professional. If you or a loved one served in the military in any of the wars and are experiencing symptoms of PTSD, please contact your closest VA, Veteran Center or personal physician. There is help for you and your family. VA hospitals conduct excellent classes for wives of veterans with PTSD and for veterans suffering from PTSD. I’m so thankful for the help we have received from our local VA clinic, Vet Center and VA hospital.
Currently, twenty-two veterans take their life each day.
Help save a warrior. May God bless each of you and watch over our Warriors.