So it was that Dennis applied for disability benefits from the VA based on the PTSD symptoms. The official documents were filed by Frank and we went on about our business -- thinking there was no chance of any benefits but at least we had put forth the facts.
It was about 5 months later that Dennis received a letter from the VA administration stating that his case was being reviewed. A short time later, he was scheduled for a psychiatric evaluation at Michael DeBakey Medical Facility in Houston. During that evaluation, Dennis had limited ability to give specifics about his experiences in Viet Nam. The interview did not last long. As we left that appointment, I was more than sure that his appeal would be declined. There was not enough information. The psychiatrist did however do a great job of evaluating what was happening with his current mental state and its connection to military.
Then six months later we received a letter. Dennis was awarded 50% disability and full medical benefits. In addition, he would start receiving a monthly allotment for disability. It was a total shock - surprise - unexpected! But at the time, it was timely as the medical needs were increasing for testing and monitoring the condition.
A series of initial appointments kept us traveling from one clinic to another in the huge medical complex. It was like working through a maze. Dennis was in unfamiliar settings with complete strangers as doctors. Looking back, it was stressful and disorienting for him. The pharmaceutical benefits were a huge help. Maintenance medications were prescribed and mailed to us at no cost. Extensive testing had not been updated for over 6 years so the new baseline was a help to doctors.
I remember going into a neurologist appointment. This cute little doctor came into the room. She was soft spoke and gentle in her introduction to Dennis. She took all the necessary information and then excused herself: "I will be back in just a few minutes. I need to go confer with our supervising neurologist regarding this case." So we waited - not so patiently for Dennis. Finally the door came open. The young doctor declared that she had someone with her that she thought I would know.
There he was..... Dr. K (This was the neurologist that I met on the plane traveling back from the Alzheimer's Action Summit in Washington, DC. Dr. K was returning from a neurologist hearing in the Senate. We struck a conversation discussing the terrible traffic getting to the airport. One thing led to another and we started discussing Alzheimer's and Dennis. He went into detail sharing his experiences and findings in the research. I came to find out that he was working with Dr. D at Baylor College of Medicine in her research program AND the neurology department at VA DeBakey. He had some suggestions for future treatment. I asked how I could get an appointment with him for Dennis. He was taking no patients at the time.)
Dr K shook Denny's hand. He told me he knew this case had to be me because of the story we shared on the plane. He said he was personally going to take over Denny's case. He changed a few meds adding some and taking away others. He gave me his personal cell phone number and assured me he would be available if needed.
There are no words to describe this encounter. God's plan was perfect!! As always... Meeting Dr. K on that plane was no accident. Him coming into that exam room was 'divine intervention'. Dennis now had one of the very best doctors available to monitor his progression into the more complicated and dangerous parts of the disease.
And so it was that we had the VA benefits for a few months before realizing that Dennis could no longer tolerate the medical maze of the VA. So when the next VA letter came ... there was no longer a concern for the facility benefits. Skimming the letter I saw the word ERROR. Goodness gracious what did this mean? I don't remember the exact wording but basically they were cancelling the benefits effective in like 60 days. At that point it was all a blur and my greatest fear was paying back any benefits he had already received.
I contacted the VA Liaison to report the new status. He assured me he would appeal at my request. I said I wasn't concerned of an appeal but wanted reassurance that I would not have pay back the previously awarded benefits. I did return the checks for the next two months but no further request was made by the VA ... the case was closed about six weeks before Denny's passing.
Monday, December 3, 2012
Institute for Living
After the violent episode that Thanksgiving weekend, I started networking to find specialized help with management of the drugs being prescribed. At the time, I could find only one reputable program at the Mainland Medical Center, Texas City. It was not a geriatric psych unit but a well established dementia unit, Institute for Living, with a qualified team of professionals needed to assess and manage overall treatment and monitoring.
When I contacted the Institute, I was advised they would take Dennis if a spot was available AFTER all the legal action had been resolved. So after completing the judicial requirements with the case, I moved forward with our plans to have Dennis admitted to the Institute. I had been advised that the stay could take up to 21 days. Dennis was definitely not wanting to go to the hospital but I explained that after what happened with the police, we wanted to make sure his medicines were balanced properly.
The way the program was set up, we had to admit through the emergency room. Our son Scott and my brother Doug went with Dennis and me. That process alone made the admissions difficult. Dennis never liked hospitals and an emergency room is a lot of hurry and wait and wait and wait. The longer we waited, the more agitated he became. The three of us did our best to keep him distracted and calm. But by the time we got to the unit -- his patience with the whole thing was gone. He wanted no part of the admission process or staying there. With his increased agressive tone, a code gray was called. About four men appeared standing close by and then it happened -- Dennis began screaming and saying he wasn't stayin and to get him out of that place. He moved towards me -- then the team of male attendants apprehended him in a struggle. Scott sheltered me.. quickly taking me by the arm through the nearest exit while I could hear Dennis screaming in the background. Once we were clear of the unit and in a secure area an explosion of sorrow came over me. Scott kept saying it would be okay .. Dad would be okay .. and reassured me this was the right thing to do. Within about 10 minutes a male nurse came to let me know Dennis had calmed and he was begging to speak to me. He promised them he would not become violent again. When I walked into his room, he looked like a lost frightened child. He was begging his "mother" to take him home. I kept telling him how much I love him and that he would be okay. But I explained that his medicines were all messed up and the doctors were going to help so he could go back home. With a sad look, a hug, a kiss and the words I love you, I had to turn and walk away.
The first 7 days of his admission, I could not visit him. I could only call and check on how things were going. I found out that for the first four days they had to call the code GRAY for him several times. It was so bad he was frightening the other patients so they moved him to a more distant a room. The head nurse, Mike, (with 30 years psych experience) shared that he saw more PTSD than Alzheimer's symptoms during those days. I explained that the Alzheimer's had taken him back to memories of Viet Nam. He had become obsessed reliving those days and would talk in dreams as if he were there. We had noticed that any time he saw someone with a military hat on, he would go to that person and salute them... saying welcome back. Of course the strangers were always kind and accomodating when we nodded and 'apology' and hurried on our way.
Soon the neurologist told me about a Liason with the Veterans Administration (an advocate) who would come to the hospital and help apply for VA benefits...possibly using the PTSD actions.. for some medical and financial assistance. Frank was a great gentleman who did come to the hospital with his little laptop and printer. He got all the information he needed and filled out the affidavit that was later filed on Dennis' behalf. Even though he did not think anything would be approved -- he wanted to make a good faith effort to apply. (More on this later)...
For the next 14 (of 21) days, I traveled to Texas City for visiting hours. At times I would find Dennis so sedated he could barely communicate. Other times he would be sitting on the side of his bed (with everything packed daily) waiting for me to pick him up. With each visit, I tried to personalize his 'bare' room with family pictures, magazines and personal items from the grandkids. With staff reports weekly to update his progress, I found allies in finding the right 'cocktail' of drugs to help this gentle and spiritual man continue living his life with the highest quality possible. I would come in at times to find Dennis in the nurse's station eating snacks for the holidays. I asked if he should be there and they all said ... "sure we have adopted him." He was settled with them and felt safe.
What I realized after it was all behind ---- that the program would heavily drug Dennis in the beginning then slowly, very slowly make adjustments that best fit his condition while maintaining quality life. With scans, it was determined Dennis had a good amount of damage to the frontal lobe where aggression is controlled. We got answers and a professional team who coached us and supported us for continued management in the home.
We celebrated our family Christmas that year without Dennis. He would return home shortly after that celebration. With adjustments to previously prescribed medicines -- there was an additional anxiety medication to help keep agitation and aggression at a bare minimum. I was given instructions to be proactive with this medicine. I could plan for those times when there would be more stimulation and activity in our daily lives -- by giving a preventitive dose of medicine.
[Making the decision to take Dennis to this highly specialized medical unit was purely mine (with support from our kids). In fact, when we were in the ER at Mainland Medical, our personal physician called to check on Dennis. I explained we were admitting for complete evaluation. He was more than a little upset with me. We had difficult words and he certainly let me know he did not approve of that decision. That was upsetting to me because I believed it would give us a different set of eyes and a more current evaluation of the physical and mental progression of the disease. When the conversation ended, Scott assured me under no uncertain terms that this was indeed our decision and not to be concerned with that call.]
Faith, hope and love was all that carried me through those 21 days of treatment. I had faith the Institute would be current and specialized to control any future aggression. I had hope that I would be able to continue keeping Dennis at home with me (our doctor had advised against that). And love Dennis and our family regarding safety helped me stay with a decision that was extremely difficult. Just letting go of the day-to-day care was a huge step for me. In the end, I had to rely on God's love and sheltering comfort to see us through just another step in this journey.
When I contacted the Institute, I was advised they would take Dennis if a spot was available AFTER all the legal action had been resolved. So after completing the judicial requirements with the case, I moved forward with our plans to have Dennis admitted to the Institute. I had been advised that the stay could take up to 21 days. Dennis was definitely not wanting to go to the hospital but I explained that after what happened with the police, we wanted to make sure his medicines were balanced properly.
The way the program was set up, we had to admit through the emergency room. Our son Scott and my brother Doug went with Dennis and me. That process alone made the admissions difficult. Dennis never liked hospitals and an emergency room is a lot of hurry and wait and wait and wait. The longer we waited, the more agitated he became. The three of us did our best to keep him distracted and calm. But by the time we got to the unit -- his patience with the whole thing was gone. He wanted no part of the admission process or staying there. With his increased agressive tone, a code gray was called. About four men appeared standing close by and then it happened -- Dennis began screaming and saying he wasn't stayin and to get him out of that place. He moved towards me -- then the team of male attendants apprehended him in a struggle. Scott sheltered me.. quickly taking me by the arm through the nearest exit while I could hear Dennis screaming in the background. Once we were clear of the unit and in a secure area an explosion of sorrow came over me. Scott kept saying it would be okay .. Dad would be okay .. and reassured me this was the right thing to do. Within about 10 minutes a male nurse came to let me know Dennis had calmed and he was begging to speak to me. He promised them he would not become violent again. When I walked into his room, he looked like a lost frightened child. He was begging his "mother" to take him home. I kept telling him how much I love him and that he would be okay. But I explained that his medicines were all messed up and the doctors were going to help so he could go back home. With a sad look, a hug, a kiss and the words I love you, I had to turn and walk away.
The first 7 days of his admission, I could not visit him. I could only call and check on how things were going. I found out that for the first four days they had to call the code GRAY for him several times. It was so bad he was frightening the other patients so they moved him to a more distant a room. The head nurse, Mike, (with 30 years psych experience) shared that he saw more PTSD than Alzheimer's symptoms during those days. I explained that the Alzheimer's had taken him back to memories of Viet Nam. He had become obsessed reliving those days and would talk in dreams as if he were there. We had noticed that any time he saw someone with a military hat on, he would go to that person and salute them... saying welcome back. Of course the strangers were always kind and accomodating when we nodded and 'apology' and hurried on our way.
Soon the neurologist told me about a Liason with the Veterans Administration (an advocate) who would come to the hospital and help apply for VA benefits...possibly using the PTSD actions.. for some medical and financial assistance. Frank was a great gentleman who did come to the hospital with his little laptop and printer. He got all the information he needed and filled out the affidavit that was later filed on Dennis' behalf. Even though he did not think anything would be approved -- he wanted to make a good faith effort to apply. (More on this later)...
For the next 14 (of 21) days, I traveled to Texas City for visiting hours. At times I would find Dennis so sedated he could barely communicate. Other times he would be sitting on the side of his bed (with everything packed daily) waiting for me to pick him up. With each visit, I tried to personalize his 'bare' room with family pictures, magazines and personal items from the grandkids. With staff reports weekly to update his progress, I found allies in finding the right 'cocktail' of drugs to help this gentle and spiritual man continue living his life with the highest quality possible. I would come in at times to find Dennis in the nurse's station eating snacks for the holidays. I asked if he should be there and they all said ... "sure we have adopted him." He was settled with them and felt safe.
What I realized after it was all behind ---- that the program would heavily drug Dennis in the beginning then slowly, very slowly make adjustments that best fit his condition while maintaining quality life. With scans, it was determined Dennis had a good amount of damage to the frontal lobe where aggression is controlled. We got answers and a professional team who coached us and supported us for continued management in the home.
We celebrated our family Christmas that year without Dennis. He would return home shortly after that celebration. With adjustments to previously prescribed medicines -- there was an additional anxiety medication to help keep agitation and aggression at a bare minimum. I was given instructions to be proactive with this medicine. I could plan for those times when there would be more stimulation and activity in our daily lives -- by giving a preventitive dose of medicine.
[Making the decision to take Dennis to this highly specialized medical unit was purely mine (with support from our kids). In fact, when we were in the ER at Mainland Medical, our personal physician called to check on Dennis. I explained we were admitting for complete evaluation. He was more than a little upset with me. We had difficult words and he certainly let me know he did not approve of that decision. That was upsetting to me because I believed it would give us a different set of eyes and a more current evaluation of the physical and mental progression of the disease. When the conversation ended, Scott assured me under no uncertain terms that this was indeed our decision and not to be concerned with that call.]
Faith, hope and love was all that carried me through those 21 days of treatment. I had faith the Institute would be current and specialized to control any future aggression. I had hope that I would be able to continue keeping Dennis at home with me (our doctor had advised against that). And love Dennis and our family regarding safety helped me stay with a decision that was extremely difficult. Just letting go of the day-to-day care was a huge step for me. In the end, I had to rely on God's love and sheltering comfort to see us through just another step in this journey.
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