In this month’s edition of Dear Fellow Caregivers, a wife shares her story of caring for her Navy Veteran husband. When he sustained a serious back injury during active duty, she had no idea the injury would leave him with a rare and troublesome spinal cord condition. His injury was coupled with undiagnosed PTSD. She shares where she is now through her caregiving journey and how the VA Caregiver Support Program helped her along the way.
Dear Fellow Caregivers,
My husband is a Navy Veteran. We have been married for over three decades and are still sweethearts. What a blessing. There has never been any doubt that we would care for each other as we grew old together. We both know that’s the way true love works.
It just never occurred to us that the role of caregiver for the other spouse would come to either of us before retirement was even remotely in view.
My sweetheart sustained a serious back injury during active duty. That injury and the subsequent treatments for it left him with a rare and horrifically painful spinal cord condition. From the first day of the acute onset of his symptoms and intractable pain, we were suddenly thrust into the fight of our lives: Him to withstand the relentless pain, constant falls and devastating changes to every part of his body, and me to find the way to help him, no matter how far we had to go to get it. I became, and will always be, a woman on a mission.
It took seven months and an absolutely miraculous blessing to come in contact with the doctor who finally diagnosed him. I always thought I couldn’t wait for a diagnosis because getting it would reveal how to “fix” him. Although we are eternally grateful to that doctor for her diagnosis and her brilliant efforts to help him, we have learned there is no “fix” for my husband’s condition.
There is also limited help for his constant, intractable pain. His condition is progressive, it has no known cure and very, very few doctors even know anything about it. Thankfully, his condition will not take his life, but many patients with his same condition take their own lives because they can no longer stand the pain.
Additionally, my husband has PTSD. He, and to be quite honest, our entire family suffered with his undiagnosed PTSD for over 20 years. Thankfully, he made the brave decision to “do the work” and, with the help of kind doctors and good medicine, got the tools he needed to start successfully managing his PTSD before he was hit with the incurable diagnosis.
His previous therapy, his faith, medication and some really great doctors and counselors are working together to help him hang on and deal with the devastation this condition has unloaded on every aspect of his life and ours. They were even able to get us couples counseling to help us deal with what his condition and its shock waves have done to both of us and our relationship. Even in the darkest times, there are more blessings to be found.
I joined the Caregiver Support Program (CSP) because it finally dawned on me that I might need some help, too. I also thought I might learn some ways to help my husband and get some tips on how to wade through the VA health care system. I was right. I have gotten all that and more. Priceless information and tips. Good training and comforting camaraderie. I now have people that “get” what I am going through.
I realized I had been so consumed with trying to find help for him and navigate VA (which I knew almost nothing about at first) that I was losing track of me. Other caregivers, Tammy Warren (our local Caregiver Support coordinator), and all the kind folks I have met through CSP have made me realize that I am not alone in my struggles.
I have people who understand the fight I am in to get my Veteran the care he desperately needs and deserves. As I am putting these words together, I am actually in the middle of a battle for his care.
They also gave me the tools to see that I was slipping into depression myself, which led me to do some self-care to try to correct my course. CSP has been another blessing.
Let me whole heartedly encourage you to give CSP a try. I know you don’t think you can squeeze the time out of your already overloaded schedule, but you will be glad you did.
I am hoping you find some little blessing today.
Sincerely,
My Sweetheart’s Caregiver
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Wow! Thank you so much for sharing exactly what I need. I too am a veteran taking care of my war veteran husband who has been suffering from cancer for many years now. He has a very large hernia on his stomach among other complications from surgery, his condition and treatment that is too risky to remove. I am obligated to take care of him and our daughter helps too. It gets overwhelming at times and I would love to have more information on the caregiver program.
we have tried to get in the program for a year and with no luck .We have the three phone interview which was a waste of time. My husband was injured after a surgery at the VA causing him to have blood clot and other issue since 2013. In 2014 he had mini stoke then in 2021 he had a major stoke caused from the blood clots and made he illegal blind and partial used of the right side. Im taking of him and hes 100% and he VA has turned him down what should I do
Judy Freeman
I too, became my husband’s advocate and caregiver. The support I received from the Caregivers Support was a lifeline. The online yoga, meditation and other videos kept me from sinking into despair. This was the most difficult time in our lives. I don’t know how I would have made it through without that support.
I have been with the Caregiver program a little over a year. It has been a godsend. I don’t know how I would get through everything without the support-financial and emotional-from the VA. My husband has Alzheimer’s and we are now to the place where he needs to go into a nursing home since he needs more help than I can give him. If anyone is eligible for the support of the Caregiver program I suggest they apply. You won’t believe how much they will help you, the caregiver.
Our experience with the Care Giver support program was a total waste of time and energy. The horrible interview questions they subjected my veteran husband to were damaging and brought him more pain. The ” offer ” to me of support was nonexistent. I live in a rural area so unless you are in a major city near a VA, don’t waste your time.
Donna Davis
Where do you find out where you can join caregivers support?
I am looking forward to getting the same help from the caregiver program.
My husband suffered from multiple conditions from agent orange+ exposure in Nam for 30 years. I was his caregiver from day one as well as for my mother and my father, a Korean Navy vet. My mother passed in 2015, father passed in 2016 and my spouse in 2021. My father received VA assistance to financially provide for my mother, and funds to take care of medications for him. My spouse was signed up for VA assistance that paid for his medications and provided him basic medical care. I wish I had been informed by VA as their caregiver, that a support system existed. I still struggle with the fact I could not spend time as a daughter/wife, because of the intensity of care and assistance they all needed over the past 10 years. I applied twice to get my husband re-assessed for his disability level to help with medication bills and his care, but only ever received the letter saying we missed a physician’s appointment (that never existed). We were on our own. I still am struggling with getting financially stable, but have been told I make to much from VA and Social Security to receive assistance. I now still find myself angry, depressed, exhausted and longing for that time back. I feel I may even be struggling with PTSD. Our Vietnam vets came home to horrible treatment and suffered the majority of their lives, only to have their lives shortened by their coming to the aide of their country. Their wives and children are struggling too. These veterans and their families continue to be “forgotten”!
I what happened to my post
During COVID I took my husband for his vaccination and was told that I could be eligible also. However, I was turned away because I was not listed as his caregiver. This year it will be 49 years. He has a myriad of health issues, spinal surgery the year after we suddenly, loss our only child(sepsis after five days in the hospital). He woke up and couldn’t lift his left arm. Everything spiraled downhill afterwards. We filed a claim years ago(camp Lejune). That has been an exhaustive battle with no help. We had to leave our beautiful home in Michigan after 36years( the cold weather was agonizing for him) and him not being able to use his arm and limited strength because of the spinal surgery.
I was told to applied for help through the Caregivers Support Program. They turned me down. I received a letter a few months ago, telling me to re-applied. I haven’t … I know I am in the mist of depression, but I can’t help me.
We were also refused, even though my husband has traumatic health issues along with amputations from being blown up in Vietnam. Apparently if the veteran makes any effort to be independent (which is critical for their mental health, to feel like they are contributing SOMETHING to their own care) then the program is not for them. My offer of help consisted of a letter offering help if I wanted to go their facility for support meetings.
Regarding LeJeune, everything I’ve found indicates they will only follow up if you have some rare cancer.
Sorry to be negative but your note really hit me. Please know you are not alone, even if it feels that way.
Thank you so much for sharing your journey with your Sweetheart. I joined the Caregive program two years ago and the knowledge and support of the program and people are priceless. Please take care of yourself.
This is most helpful to know that we r not in this alone. Everyone seems to feel sorry for the veteran which I understand but support from other wives and caregivers is extremely important.
It really makes you feel that u r not alone and have a friend out there that understand both what you and the veteran r going through.