The Mirror Reflects on Delirium, Encephalopathy, Dementia and Alzheimer’s

I probably could have added some other words to describe these, such as crazy. It is not politically correct to use that word, but when someone has any of these ailments it is how they feel. Sometimes their loved one’s feel the same having to deal with them during any of these. While they are all different ailments, they all have something in common. The person who has any of these becomes disoriented. When true reality and what is happening in the mind cross paths it leaves mixed up reality. With each of these there are similar symptoms.

I know more than I care to admit about all of the above. I did not look up the definition for each, as from what I have seen they are similar. Below are some of the symptoms of what I have witnessed of each lumped together:

Generalized or complete confusion. Not knowing what is happening, if it is real or in the mind, they may realize it or they may not know it is happening. They may forget who a person they have known most of their life is. They may think the person they have known most of their life is someone else. This could be someone they love or someone they do not like. If reading or watching TV, what they have read or seen may mix with the real world and they think that what they have read or seen is in their world. They may hallucinate. They may get angry, wanting to fight. They may get scared, afraid of everything, even themselves. They may not know who they are. They may not know where they are, what day or year it is. They may not know anything. Sometimes they revert back to childhood ways, which they usually do not realize. They may say things that they normally would not. Some of the things they say may be racial, sexual or somehow inappropriate. For the caregiver this symptom is extremely frustrating, because when you try to tell someone who does not know them, they will think the person always acts like that and you are just saying something to not anger or insult them.

To someone who is suffering from any of the disease’s I mentioned above and is aware they are having these symptoms, it must be scary. To not know what is real or what is in the mind. Sometimes when the person comes out of an episode, they are left with the feeling that whatever they thought while having the episode is still present or took place in some way. They must fear whether they can tell the difference between what is real and what they perceived or have felt is real. Most will act like everything is normal when they come out of an episode for fear of judgement, people questioning their sanity or even themselves questioning their sanity. Many people who suffer from these illnesses will come out of an episode and remember every detail, no matter how small. While their mind tells them it was not real, another part of the mind thinks it is because of the detail. It becomes a battle for the person to know what is real and what is not. Even then, some will think that whatever happened in their episode really did happen, that it was not a hallucination or dream but will keep it to themselves.

For those who suffer from any of the above and are not aware ever, it must still be scary. People they knew or trusted, they no longer know, yet alone trust. Everyone becomes a stranger. Reality is something so far removed they do not know what it is. They too try to act normal, as though they are aware. They may think they are living in the past and everyone and thing they see is somehow connected to that past or that everything/everyone has no connection. This is especially true, from my experience with Alzheimer’s. My grandmother on my father’s side had it. I would go to visit her once a week, she always told me it was nice for a stranger to come visit her. She always wanted to go home, even though she was in her home. The home she wanted was the home in her memories, no longer there. She seemed completely unaware that she had any mental type problem, she too tried to hide how she felt as though that would make everything okay. In the end she had to go to a skilled nursing facility that handled Alzheimer’s. She ultimately died from a stroke, but she was given very good care up until the end.

My grandfather on my mother’s side had dementia, though everyone said he was senile. He came to live with us after my grandmother died, before he had become swallowed by dementia. With dementia came many of the symptoms listed above. Because I was younger and had not seen anyone with these symptoms, it could be at times embarrassing when he was around my friends. They did not understand either, but always showed concern and were kind to him. He did not want to go to a nursing home. My mother would call an ambulance every few days as he thought he was dying and wanted to get to the hospital. Finally the hospital told my mother she had to put him in a nursing home as every time my grandfather had her call EMS someone else might be in critical condition and they needed to take care of those in need, not those who wanted to be at the hospital. It was arranged that the next time she called for an ambulance they would take him to the nursing home and tell him it was a hospital and he would stay. At first he was very happy there, but when he found out it was a nursing home, he refused to get out of bed and died not long after. My mother felt guilty until the day she died that she had put her father in a nursing home. But she had no choice. It is hard to tell someone who has a loved one that suffers from any of the ailments above that end up having to put their loved one into a skilled nursing facility or nursing home, that it is for the best. For my grandfather, it was. It may not be for everyone who suffers from these illnesses, but for some it is the only choice.

My father had cancer that was not curable. He was given 2 to 3 months to live after it was diagnosed. My mother brought in hospice about a week before he died, while caring for him herself most of the time. He died 2 months after the diagnosis. My siblings do not like that hospice was brought in. They feel guilt. As for my mother, she would develop dementia nine years later. She too would say inappropriate things, things she would never say if she were in her right mind. She would have been embarrassed if she had realized the things she said. It was hard. She had other health issues. My siblings wanted to bring her home from the nursing home that she was in after a fall. While on my last visit, I must have sounded cruel when I told them the rest of her life would be going from nursing home to the hospital and back. That they knew very little about health issues and they could not give her the care she needed. The words would come back to haunt me, as last February I realized that my husband’s life would be going from home to hospital until he died. The one common thread we all have is, we wanted to take care of our loved ones alone, at home.

My husband suffered from all of the symptom I listed at times. While he had a touch of this when he first became ill, the antibiotics he was given helped take the symptoms away in a day or two. When it first started for real, he was at a skilled nursing facility for rehabilitation after surgery for a 2 or 3 week stay. The nurses all said he had “institutional delirium” or the medication was causing his delirium. I did not think either were his problem. I did think that both made the problem worse. I called one of his specialists and they saw him the next day. They too knew something else was wrong. It was discovered he had an overactive thyroid that was causing the delirium. But there were other tests done. A CT scan, PET scan, MRI, EEG and a few more. Each of these showed signs of early onset dementia and early onset Alzheimer’s. The teams of doctors did not think those were his problems luckily. After the overactive thyroid was handled and he came home, he was normal, he was on prednisone. When his thyroid went back to normal, the prednisone was tapered. That is when the encephalopathy and delirium truly took hold. I could not leave him alone. There were times he tried to escape, thinking he was not in his home. He was truly experiencing everything I listed above and more. There were many trips to the ER. In the ER some doctors did not know him and quickly diagnosed dementia and Alzheimer’s. Luckily his regular doctors did not. Though it was not his normal doctors that realized what helped these episodes. After one of his many visits to the ER I realized that each time we arrived they gave him one shot of a type of prednisone and he became normal. After one hospitalization he was sent home on a higher dose of prednisone meant to taper off. When I began the taper he became confused again. I gave him the higher dose the next day and he was back to normal. So I called the doctor. He was sent to a neurologist who ran over 1,000 tests. This neurologist was not going to just give up and give an easy (wrong) diagnosis, thankfully. He promised me he would never give up and would find out what was causing these problems. My husband had a post traumatic stress autoimmune disease from his illness. His body no longer knew what was healthy and what was not. Luckily it was controlled with prednisone, but prednisone is not meant to be taken at large doses for a long time. There are other medications and they found one that worked after a few tries, though the prednisone was not tapered. Even though the medication worked, it did not all the time. The neurologist explained, in illness or during stress he would have episodes. My husband remembered most if not all of his episodes, when I would bring it up, he always told me he wanted to tell me when he was better everything he had felt and thought were real, that it was beyond comprehension. I never got to hear what he wanted to tell me, but I have a feeling I know most of it. My husband died before the prednisone taper could begin. He also had become very ill. He was back in the hospital when the doctor told me he needed to go to a Hospice Home. While my husband agreed and knew he was going, it was still hard. I was the one who always cared for him and I knew he would have preferred to be home. I must say that hospice gave him much better care than I ever could. Yet there still is that nagging feeling for not bringing him home, for letting him go to the Hospice Home. I slept there in a couch that turned into a bed or the recliner beside his bed for most of the 7 nights he was there. I knew he was dying, but he had beat death so many times in the past few years. The hope was in me he would beat death once again. It was not until I returned home after his funeral that I felt a twinge of guilt for not bringing him home. But the reality and rational part of my brain knows he had the best care he could have. Not having to care for him gave time for moments that I will remember for life. His days were still mostly confused, but he had moments of clarity in between, those are the ones that bring a smile to my face. Though I do not feel guilt, I still have sad feelings my husband ended up at Hospice. One other thing I still feel, the need to fight for him. I spent so much time fighting for him when he could not, it is a feeling that does not go away. It makes me feel useless, even though I know it not to be true. I used all my energy to learn how to fight for him, while forgetting how to care for myself. Now, I must learn to care for myself again. I was always independent, now I must find that part of me again and put it to use rebuilding my life. I do not like to tell my husband’s life story, I think it was his to tell. He did not care, he thought telling others might help. So I have not broken any confidence he put in me.

One of the hardest parts in dealing with a loved one who has any of these symptoms is, as their advocate you are making decisions on your own. You cannot ask them what they want. You cannot commiserate in bad times or rejoice in happiness together. You are alone. Even if you have family to help, you are still alone. You want to have the ability to snap your fingers and have things go back to normal. In my case, my husband was able to become normal but still had episodes. Even in his normal periods, he was not quite himself. I think some of that was fear or what he would say or do. I wonder when the person afflicted with one of these illnesses looks in the mirror do they see reality or do they see an alternate reality? Or maybe something else, maybe nothing. I would like to say I found a way to handle this, to some degree I did. But since I am being honest, it was much harder than I could ever explain. One thing I did know to do was to find something in the room, whether it be a sign, clock or just the wall color and have my husband look at it over and over, then tell me where he was. This helped when on rare occasions I came home and he would call not knowing where he was. Sometimes this happened at home. It seemed effective. That I was able to care for him during these periods surprised even the doctors and nurses. I wish I could give advice on how to handle someone with one of these ailments, but we all deal with things differently. I am just trying to shed light on what the caregiver may feel.

This too was started earlier to be finished sooner than now. I wanted to give some specifics of what both the caregiver and loved one might go through with these symptoms and ailments. That prednisone worked for my husband does not mean it would work for someone else. What I am trying to convey is not to give up. To continue to fight if you think the diagnosis is wrong. It may be correct, but all other illnesses should be ruled out first. Do everything you can to learn of the illness to help. Make sure to take care of yourself.  Forgive yourself for what you cannot do. If you come to the point where your loved one needs skilled nursing or hospice, you should not feel bad. My only reason for this blog is if I can help one person to have it a little easier and get the correct diagnosis, it is worth reliving some painful moments.


Uncontrollable Confusion shows in the Mirror

I am lost. I am confused. I am sad. I am alone. I am at a loss as to what I am supposed to be doing with my life. How life even goes on when the one you love has died? These seem to be all emotions I cannot control, rather they are out of control or uncontrollable. These emotions hit me when least expected or when one would think they are expected. Sometimes they do not hit me when I would think they would, which leads to more confusion.

It seems that instead of life getting easier as time goes by, it has gotten harder. It may not actually be harder, it may just seem that way. Especially on days that I am feeling sad and confused. I will probably have many days that are sad for now, so I need to find a way to control how I feel and not be confused and sad. I have no special reason for feeling this way today, at least none I can think of. There is always the chance this is an anniversary of some bad news my husband I received but cannot remember, as there were many days we were given bad news. I made it out the front door and did some grocery shopping as once again there is a chance of snow in the south. At least that I am not confused about, I cannot drive in the snow and I have no control over the weather.

Making it out the front door should make me feel as if I have achieved something, even if it is minor. But it did not. It only made me more confused and not in control. I had a hard time getting out the front door, but pushed myself. Once on the road driving, it felt as if every stop sign, street sign or light were telling me to turn around and go back to the safety of my home. I continued on, with a feeling of dread, not panic, just a feeling as though I were not wanting to be out, that something bad was going to happen. I made sure to go to the two stores I had planned to and when one did not have what I needed I even drove out of my way to another store. Driving home, I noticed the gas tank was half full, ever since my husband had been ill I try to keep the tank full. So, even with the dreadful feeling, I stopped to get gas. This really should have felt like an accomplishment. That I pushed myself to do normal things when I did not feel normal at all. It did not make me feel any better. My guess would be I was not really ready to go out today so that anything I might normally have considered an accomplishment did not feel like one.

I have always been controlling. At least over what I can control. I cannot control panic attacks, but I have learned to manage them. I cannot control whether someone lives or dies, but I have always known that, it is only now harder to accept. There are many things I cannot control, but there are more things I can. By controlling the way I live my life, I can in some ways control the panic, control the circumstances that bring it. But I am talking about a different control in my life. It is more far-reaching and hard to explain. It is this control that is uncontrollable. I do not understand why, but with each day I find myself being further away from the controlled. This is causing confusion. I have been controlling my whole life. To suddenly not be able to control without any reason is where the confusion comes into play. I wondered if I am examining my past too much that it is leading to this feeling, but do not think that is the problem. I need to go through my past in order to be in the present and move towards the future. I think these feelings are coming from something else, but do not know what, that even if my husband were still alive I would be having some of these feelings. Not all of course, just some.

On days when I am sad, such as today I wonder if I will spend the rest of my life grieving. Yes, I used the word grieving, not mourning. I do not like the word and it does not really explain how I feel, but today it seems more fitting. As I mentioned it sounds pitiful, today I felt pitiful. I miss my husband. He will never be back. I have to live with this. I do not know how. I am trying to find out how, but so far, I only feel more alone with each passing day. I know the call from the hospice counselor last week set off new emotions of despair and loneliness. I need to get over these feeling. I need to regain control of my life, as much of it as I can. I need to stop being confused, at least as much as possible. I need to give myself permission to be okay with the fact that I am confused and uncontrollable at times. I also need to be sure that I do not stay in a state of confusion, that though I allow myself to feel that way, I try to get to exactly what is causing it. If I can control it, then I need to. If I cannot control it, I need to find a way to live with it in a calm, accepting way. I have my work cut out for myself. I only hope I am up to doing the work.

My Husband in the Mirror

This will be a long story about my husband. It is not my story to tell. At least that is how I have always felt. My husband would tell me to tell his story to anyone, especially if it could help so that no one ever has to go through what he endured. Knowing he had no problem with me telling his story does not make me feel more comfortable telling it, so I will try to censor what I write while keeping the main detail in. I will tell you this is a long story even with the censoring. I will tell of what happened trying to leave out his emotions.

I think most that have read this assume that my husband’s illness was cancer. I am always vague as I write about it. I know if I read my writings I would think he had cancer. He did not have cancer. I am going to start with his previous health issues that in the end helped lead to his death, but had he not gotten his illness, he would probably still be alive. The illness is something anyone can catch, so if you want to skip the first part to get to the illness that is understandable. If reading about illnesses bothers you, you might want to skip the whole post.

Let me start with this. He was born with a heart defect. At the time, there were no surgeries to fix it, most babies died from it. For those who lived, which were few, at the time little was known about it. He lived a full life with little effects from the abnormality, he had occasional tachycardia, which is basically a fast heart beat, but medication kept it under control most of the time.  Nine years ago he became ill with pneumonia or at least that was the diagnosis at the local hospital on admission. Because he had some symptoms from his heart, a cardiologist was sent in. That is the first time we met a doctor who actually knew a little about the defect. He advised us that we should go to a large university hospital about 30 miles from home, as they had doctors that specialized in heart defects. He also told us the only cure for my husband’s heart which was beginning to weaken, was a heart transplant.

After going to these specialists, which there were a team of, we found out so much information that we had not known about the defect. While it was true the only cure was a heart transplant, that would only be necessary should his heart become to weak or enlarged to pump on its own. Though this was a large hospital with many patients that traveled from around the world to see these doctors, they only had three patients that had what my husband had. None was as old as my husband, who was not that old. As well as none that had gone as long as he had without serious complications. Many tests were run. Medications changed to keep the heart healthy. A defibrillator was implanted in 2006, at that point he was told his heart was growing weaker and he could no longer work. He liked working, he was a boss. He like being in control of the workplace. After he stopped working, his life did not end, rather we had time to enjoy things we had previously skipped over, as we had both been working. I stopped working too as now my husband needed me a little more. After the defibrillator was implanted his heart grew a little stronger, but was still weak. He had tests done to see where he was on a scale of needing a transplant. He was pretty close, but with proper care and medication the hope was that he would be able to avoid having one, at least put it off as long as possible. Things became somewhat normal.

This is where the illness starts. In January of 2012. my husband told me his foot hurt. I looked at it there was no redness, it looked fine and we both thought he must have bumped it on something to cause it to hurt. Upon awakening the next morning, he told me he was in unbearable pain, I looked at it and he now had a bump on his foot. Still thinking he probably bumped it, but knowing the importance of his health, we went to his family doctor (they are now called Primary Care, but I will refer to him as family doctor) who is not affiliated with the university hospital. His family doctor sent him for X-Rays. He called shortly after we returned home to say that something looked wrong and he had pulled strings with a local orthopedic surgeon to see him the next day. At the orthopedic surgeons office we were told all the bones had blown out in his foot, a broken foot. A hard cast was placed on his foot and we were told not to travel. A good thing, as we had planned to travel the next day. This was on a Friday.

On Sunday night, my husband had the chills. I took his temperature several times, but no fever. He had been in bed most of the day. He was having a hard time moving his leg with the cast on it. In the middle of the night he woke me and asked if I could move his foot as it hurt. When I did, I could feel he was warm. Now he had 104.7 temperature. He did not want to go to the ER, so we waited until the doctor opened early in the morning. At the doctor’s office he still had the same temp. but his blood pressure was 44/29. This was so low the doctor wanted an ambulance to take him less than a half mile to the local hospital. My husband said he was able to go by car. When we got to the ER, they were waiting for him with a wheel chair and helped him in, rushed him to a cardiac emergency room. One doctor took me aside to ask my husbands medical conditions, medications, etc. Another took my husband aside to ask him basic questions, such as what his name was, what year it was. While we were talking to the doctors they were drawing blood and starting IV’s and administering medications. While I was talking to the cardiologist that was questioning me, I asked if he could call a certain cardiologist at the university hospital as I thought that doctor would want him at the university hospital. The look of relief on the cardiologist face when he called and was told to have him brought there right away was one I will not forget. He thought he was dealing with heart problems and it was out of his league. I will be forever grateful to the doctor at the university hospital that said for my husband to be transported there. In the mean time, my husband got done with his questions and I went to sit with him. He told me something odd happened, he knew all the answers to the questions asked but he was not sure they were right. While we waited for the ambulance, which was not long, my husband quickly faded, he soon thought we had just put a man on the moon, that Kennedy was President, the year was 1968. The ambulance came and he was rushed to the ICU (it was still called that at the time) on the cardiac floor of the hospital.

Within minutes they removed the cast on his foot. The foot was infected. A wound care specialist that is not normally in the hospital at that time happened to be there. He is one of their best. He immediately took my husband who by now was delirious and had no idea who anyone was to surgery to clean out the foot. When he returned, he asked me to get the X-Rays from the local doctor as something did not look right. I was very worried but I remember him telling me that if all went well, after several more cleanings of the foot, he would rebuild it. He then added if we were lucky. I was too worried and stressed to ask what he meant. I would soon find out. I went home and slept as by this time it was very late. I woke early and got his X-Rays. When I arrived back at the hospital, they took one look at the X-Rays and said “this probably changes everything”. Once again, I did not ask what they meant. My husband’s mind was back to normal and he felt better. He was worried but okay for the most part.

Then the call came from the local hospital. He had MRSA. Now everything really did change. The only thing I knew about it was that mainly healthy people get it, but I also knew most people have it on their skin but it rarely enters the blood to cause problems. Now I knew why the doctor seeing the X-Ray had said it changed everything, as it appeared to be a serious infection of the bone, not just from the cast. My husband was already on an antibiotic that kills MRSA, so they were still on plan to do more cleanings. My husband arrived there on a Monday, by Sunday he was on his third or fourth cleaning. When he arrived back to the room, he told me when he woke up from the anesthesia one of the doctors mentioned amputation. I told him it must be the medication and he was confused. He was not. Shortly after the doctor came to talk to me (and my husband) about the need for immediate amputation of his foot. We were told if the MRSA traveled to his defibrillator, it would have to be removed and he would not survive that surgery. The amputation needed to be done the next day. I trusted the doctors I knew, but I had yet to get to know this doctor, so I told him not so fast, I needed to check with others. I happen to be lucky to know doctors at some of the top hospitals in the country. Some are relatives. Upon calling the first to say what had happened the response was “this was what we expected”. Everyone agreed the amputation was needed.

I want to stop talking about his illness for one moment. There is a stigma attached to MRSA. People, friends are afraid of catching it. They start to disappear from your life. My husband understood their fears. I did too. In fact I was afraid of catching it from him. I was told the chance was small, if at all. Besides that, the hospital puts a yellow warning on the door with a yellow cart of supplies beside it. No one is to enter the room without putting on the isolation gear. It must be removed before leaving the room. This is to keep others safe. I also would like to point out that my husband could have done nothing to have caught this disease. The disease does not discriminate. For those who think the cast was the reason for the MRSA, it may have been but it is unlikely to have been. As mentioned it is on our skin, any cut or tear in the skin allows it in, most times it can be dealt with easily, others that are more progressive need more serious treatments. It is estimated that 70% of the medical community have it colonized in their noses. This does not mean they have the disease or will spread it, it just shows how prevalent the disease actually is. Now, back to his reflection in the mirror.

After the calls and before the surgery, I also found out that one of the top infectious disease doctors was currently at this hospital, he was doing research and though his program was full, he had decided to take my husband in as part of it, the research was to kill MRSA so it would not return as it often does. Everyone agreed how lucky we were that this had happened at this hospital. The surgery was performed. I waited and worried. He pulled through fine. He had no pain, no phantom feelings. A man came to see him, he acted like he knew my husband, after talking for a while, he said “I forgot to introduce myself” and then he lifted his pant legs. He was a double amputee. He wanted to show my husband that life can go on, it does not have to end because of a loss of a limb. He used no cane or crutch to walk. He also explained not everyone has the same results, that most need a cane. This really improved my husband’s spirit. It did not last long. Since the top doctor for MRSA was very knowledgeable, he knew it would travel through my husband’s body. He knew how it would travel. After the surgery and the next two days they performed tests to see if any infection had gotten on the defibrillator.

On the second day, I heard the words I did not want to. It had spread and the defibrillator had to come out. How, I asked, if he were not going to survive? I asked to speak with my husband’s main cardiologist who was nowhere near the hospital. He came within fifteen minutes to sit and talk with me. He never pulled punches, telling what needed to be done, I appreciated that in him. He told me my husband did not have a good chance of surviving the surgery, but without it he would definitely die. He had a chance of surviving was the best he could offer, he told me. He also said it needed to be done immediately. I knew he was one of, if not the best, so I trusted him. That night a surgeon came in to explain the surgery. She pulled no punches either. Telling how dangerous the surgery was, that she had lost 2 patients, but not directly from the surgery. I was told by someone later she has one of the best records for this surgery, most have deaths associated with the surgery. Making matters more complicated was my husband’s heart defect.

The next morning, even though most surgeries are not performed on that day, the doctor we saw the previous night had assembled a group of surgeons that also specialized in the removal. Things went smoothly and she was happy to inform me after the surgery that none of the infection had gotten to his heart, as that would have been fatal. Once again, we were back in the room, tests were still being performed as they knew where it might travel. Two days later my husband complained to me before any of the Fellows or Doctors came in that he could not see right. I immediately got the doctor. After a quick exam, a retina specialist was brought to the room. After examination, we were told his retina had become detached as the MRSA had gotten into his eye. Injections of antibiotics were put in his eye and for two days they came every day to examine it. It was not helping, now my husband needed retina surgery to re-attach the retina.

This MRSA was spreading so quick, everyone was worried. The specialist who was doing research was not the infectious disease doctor that came to the room each day, he just was kept informed while informing her. My husband started to experience pain in the hip of his other leg. More tests. His femur had broken and MRSA was in the break, not in the bone but in the space between. My husband had stopped wanting to eat by this point, he was refusing to sit up or have any physical therapy. He was becoming weaker by the moment. One night when I decided to go home to sleep upon returning the next morning there was a crash cart in front of his room. Everyone was rushing in and out. To say I was scared and worried is an understatement. It ended up not being anything serious, the telemetry showed him as flat-lining. Not one machine, but three. This was because of the heart defect, it was picking up the information wrong. But the femur was still of concern. As mentioned he had many teams of doctors. More than half the teams wanted to hold off on the surgery, while the others wanted it to be performed immediately. The doctor that would be performing the surgery did not want to at that point either. My husband had grown so weak. Though we knew the antibiotics would not reach the MRSA in between the bone we did know by keeping him on the right antibiotic it would most likely not spread anymore. The decision on if he should have the surgery was placed with me. After asking many questions, I felt my husband needed to get stronger before anything else was done. Maybe the medication would get in between the bone and cure it, but if it did not it would not kill him. Plus he would be monitored for any changes in his blood. It had been three months since he first arrived at the hospital. Now he was going to a rehab facility, a fancy name for a nursing home even though he was still young and we associate nursing home with the elderly. He would be there for at least a month we were told. Again, he would be in isolation. Which to him was fine, no other patients in his room.

I will not get into the rehab or much that took place during that month. He continued getting the antibiotic. He was doing better. After the month and a quick stay overnight at the local hospital for a blood transfusion,  he was able to come home. The fourth day he was home he had an appointment with infectious disease. I drove him, he was examined and blood was drawn for tests. MRSA tests take up to five days to come back whether negative or positive. Three nights after the appointment, a Sunday night at 11:30, his doctor called. We had become friends so she felt comfortable calling at that time. The MRSA and tests that showed how it was spreading were bad, I needed to get him back to the ER at the university hospital immediately. He had been home seven days and now had to go back to the hospital. When the surgeon opened up where his femur was broken, she told me she had never seen so much infection before. The top of the femur was removed. Normally something could be put in to help walk when he began rehab for walking. Because he had MRSA and in the future it would be history of MRSA, he could not have any metal put into his leg. The first thing MRSA does is search for metal. So now he had severe pain from this missing part of his leg. The remaining part of the femur would eventually move up and rub against the hip-joint with any movement causing worse pain. Another month in the hospital then back to a rehab facility.

While I sat with him in rehab facility, I noticed he twitched, was confused, sweating while the air conditioner was set so cold even nurses put on sweaters under their isolation gowns before entering his room. He was not himself. I called infectious disease, she arranged for an ambulance to bring him to her office. She saw it right away too. Another ambulance took him from her office to ER, even though it was walking distance, time was important she felt. CT scans, MRI, so many tests I do not even remember them all. Nothing could be found in the ER so he was admitted. The cardiologist noticed something and had a Doppler Ultrasound brought to his room. He was in type 2 hyperthyroidism, very far in. A new doctor was added, an endocrinologist. Steroids were started to cool off the thyroid. At this point his body started to attack itself. It no longer knew what was healthy and what was not. We did not know this at the time, we just knew he was in hyperthyroidism. In addition many of the medications used to keep him alive were also taking their toll and if possible they were being changed. More time in the hospital, more time in rehab. He got out of rehab fittingly on July 4th. Independence Day.

Only, there would be no independence. While he had gotten stronger he still had a long way to go. He was out of the hospital for two weeks when he went into renal failure. Back into the hospital for a few days. Now he needed new doctors. Nephrologist and urologist. More appointments with more doctors. At this point we were going to at least 3 different doctor appointments a week. All on different days. After seeing his orthopedic surgeon and being told he could have his prosthetic leg made, we now had a orthopedist and a prosthetist. More doctors, more appointments. He still had an oil bubble in his eye holding the retina in place. When it was put in, it was put in with the knowledge that a cataract would grow. When the oil bubble would be removed, they would remove the cataract. So now we had a retina specialist and a cataract specialist. Since he had been put on prednisone, the cataract had started to grow and seeing became harder, so the surgery to remove it was scheduled. It had to be canceled because he was in the hospital with another ailment when the surgery was to take place. This surgery was scheduled and canceled many times. I have to say the doctor was very patient through all this, he was world renown, patients waited months to see him, yet each time it was thought it would be safe to have the surgery he would cancel other appointments for a surgery that would last about 3 hours. The cataract specialist would be able to get in and out fast it was the retina that now had scar tissue under that had to be scraped out and another bubble would have to be put in. As I said, the body was attacking itself.

He was in and out of the hospital for his heart often towards the end of 2012 and throughout 2013 and 2014. The cardiologists were surprised at how well his heart had held up through this all they told me in 2012. At first it was planned to insert another defibrillator at the end of 2012, but after the surgery on his femur and his risk of getting MRSA again seemed higher it was decided he would have to live without one, as he could not possibly survive having another implanted only to have it removed. While he was in and out for his heart, it was generally nothing serious with the heart. There were other hospitalizations for other issues, renal failure, urinary tract infections, other ailments and in January 2014 the flu.

He went for physical therapy to learn to walk with his prosthesis. On his second appointment he was able to walk about 30+ feet, sit a moment and walk again. He like the therapy. This brought another new doctor, actually two, as they were needed to help him up. He was getting stronger. He was happy. He thought he would drive again soon. Then he got a wound on his foot. No more therapy. Now it was back to the wound specialist. This would become something that happened often, getting wounds that would not heal. Many thought from all the things wrong with him he was a diabetic, but he was not. In fact his sugar was remarkably low for someone who ate so many sweets.

But it was not just the heart. His thyroid had cooled off, so it was decided to taper the prednisone. That is when the episodes of confusion and delirium started. Now, a neurologist was brought in. I asked him not to give up on my husband and write it off as something easy, like early onset dementia, which his MRI showed but I knew from the doctors it was not dementia rather because of the heart defect his brain had not gotten enough oxygen and was affected, getting smaller. He never did. He agreed it was not dementia. He ran countless tests. At this point we had no idea what it could be. The neurologist thought he knew immediately as his symptoms fit three diseases. All tests came back negative for those diseases. At this point, we were sent to a memory specialist, another type of neurologist. The two doctors put their heads together and found he had an auto-immune disease. It was a post traumatic stress disease. This is when the realization that his body could not tell good cells from bad cells was discovered. One of the first signs was the hyperthyroidism. The good news was it responded to prednisone, the bad news, the prednisone was weakening his already weak bones. This was not diagnosed until August of 2013. He lived his life in his head. He could not tell reality from reality TV, or if he were reading something, it became his reality. He thought he could walk, that he still had his leg. It must have been so hard on him to go from such a sharp mind to one of confusion. Sometimes he was unaware of the confusion, the times he was aware of it were very scary times for him. While it was hard on me to deal with this, I cannot for one moment imagine the demons he faced with this disorder.

Before a medication could be found to try to help with the auto immune disorder, he was back in the hospital for congestive heart failure, his body had filled with fluid. He lost 25 pounds in 2 days after IV’s of diuretics. He was already on a pill form, but he needed more. After he had lost what appeared to be all the extra fluid, the cardiologists wanted to perform a cardiac catheterization. He did not want this. I asked him if he wanted to return in a week or two for more hospitalization because he had not gotten all the fluid off. At that point he agreed to it. All was fine the doctor was actually happy that his heart still seemed to have not taken a bad hit from all that had happened. He was released from the hospital.

He woke the next morning, telling me he was cold. I took his temperature, 104.7 again. Another ambulance ride for him to the hospital. First diagnosis, septic shock. The next after the blood cultures had time to grow, MRSA had returned. More antibiotics, though he took a maintenance one, he needed stronger ones. He was allowed to go home and I administered the IV’s. I had done this for his UTI and some other infections he had gotten. Once again he went into renal failure. The medications had to be changed. By October 2013 the MRSA was gone, but as we were always told, it has to be at least a year before you are considered cured and you can always get it again. This last time the MRSA was not as aggressive. The first bout with it the doctors said the DNA of the MRSA was one of the most aggressive they had seen. Talking with some doctors from other hospitals, I was told with the first bout he would not have survived at any other hospital.

The end of 2013 held more hospital stays. It was decided he needed another doctor, a same day heart failure doctor. He would administer an IV of diuretics once a week so that my husband did not have to be hospitalized as often. A drug had been found after several failed ones, that worked with his episodes of confusion. It was not a cure-all, he still had episodes, but not as many, he remained on the prednisone and was going to start tapering off at the end on 2014. As mentioned January 1st 2014 started off with my husband being brought by ambulance once again. He was in heart failure, lung failure, as well as other things. The first thing they did was test him for the flu in ICU. He had the flu vaccine. He also had the flu. He had another 2 stays in the hospital in January. At this point his heart was failing and we knew it was just a matter of time.

For those wondering why he did not have a heart transplant at this time, it is a complex reason, but to put it simply, he would not have survived the surgery most likely, but also he could not rehabilitate. To give a heart to someone they must be able to rehabilitate. The need for organ transplants is high, I completely agree with how it is decided who gets an organ. If someone was in need and could do the physical therapy needed, etc., it makes sense they should be given the heart. As for artificial hearts/pumps, they contain metal, had they tried to put one on him, he probably would not survive surgery, but if he did, he would have MRSA again and the heart/pump would need to be removed. He had a chance at recovering somewhat, with any of the above he would have died sooner rather than later. I am not trying to make this complex, but if I were reading it I would be thinking, why did they not do a heart transplant? I wanted to explain.

At a visit to the same day heart failure clinic in March, my husband asked the doctor how long he had left. The doctor told him six months to two years. Some depended on my husband. He was only allowed 1.5 liters of water, which is about a small bottle and a half a day. This was hard for him. He drank water all the time. The neurologist explained the water was affecting his mind too. His brain was swelling from the water increasing his confusion. At the Hospice Home I would learn it is common for those dying to want to drink a lot of water. They said it was sad they did not drink anything with nutrients. All thy wanted was water. But I am getting ahead of myself here.

In June he fell at home. I called the ambulance. I was prepared for the long drive to the hospital, following them. They told us he did not have to go, they checked him over a little and he seemed fine. They said if he wanted to go they would take him, if not he could always call back and they would take him. He decided not to go. A week later he had not moved from his hospital bed at home. I could not help him sit, I canceled many appointments. I decided he needed to go to the ER. They looked him over, took X-Rays and other tests. Nothing broken, so they sent him home by ambulance. The following week he still could not move without severe pain. I called his cardiologist. He told me if I had him brought in, I would have to agree to send him to rehab when he was done at the hospital. He said though I had taken great care of him, he needed therapy to get stronger. I asked my husband, he agreed he needed the therapy and while he wanted to be home, he told me he knew it would be for the best. Little did we know that would be the beginning of the end.

The doctor found large pockets of fluid on him from the falls. Tests showed they were not infections. Tests also showed his heart was at its end. When the doctor mentioned palliative care, I thought he meant nursing home. I should have expected different from the tears in his eyes as he talked and that he sent a pastor to talk with me. When I met with the people who set it up, they told me he would have to go to a Hospice Home. I knew what hospice was. It is not always for those who are near death. I did not know what the Hospice Home was. It was a place that was like someone’s home where your loved ones are taken care of till they die. People are rarely sent there if they are expected to live longer then two weeks. My husband was there one week. During that week, we laughed, we joked, we made the most of each moment. Some times he was out of it, while others he slept all day. But he was given excellent care. Care I would not have been able to give alone, He was not in pain and he had only a little fear. There was no MRSA in his body. When he died after one week, I went into shock. But this is not about me. It is about my husband.. He would want to warn people to be sure to have anything looked at that was not normal. To stay ahead with your health. To live life to the fullest.

To close this I will add, we had some of the best doctors and nurses. We became friends with all of them. They were always so kind, giving cell phones numbers, checking to see how everything was going if we were not at the clinics or hospital for a week, meeting for a snack while we were at the clinics. Everyone was kind and compassionate. When my husband was moved to the Hospice Home, most everyone I had contact with messaged me. I could tell they had written these, as I had gotten to know them so well. Even if they had asked someone else to message me, it still would have been kind, but they did not, they wrote from their hearts to me. I do not think many do this. So my advice would be if you have to be at the hospital, try to treat the doctors, nurses, nurses aids, all involved with health care as you would want to be treated. I am sure they appreciate it. I know I appreciated all of them. I also know some of these friendships will continue in my life. It is not often we see so much compassion. I am extremely grateful for all everyone did to keep my husband alive as long as they were able to. I am also grateful that I felt I was dealing with equals, friends. If you have this happen do not take it for granted. There are many patients and caregivers just looking for someone to listen. These people, my friends, all went above and beyond just listening. I will forever remember the kindness shown.