Death, Shock, Stereotypes, Funerals and Mirrors

I always have said no one should die alone. Recently, I changed that to no one should die without someone who loves them by their side. I changed it because, dying is something we do alone, there is no getting around that fact. I guess it would be fair to say we come into the world alone and we leave the world alone.

When my husband was moved to the Hospice Home, I spent half my nights there. It was close to home and I had been spending most of my nights at the hospital. He was moved there on a Wednesday afternoon and died the following Wednesday a little after twelve noon. The day before he died he never woke up. I had brought him flowers which always made him happy. But he did not see the flowers. He slept and I slept in a recliner that seemed like it was trying to kill me that day. I say that about the recliner as the days leading up to that day, every time the phone rang or I awoke and needed to use the rest room, I would try to get the recliner in an upright position, but always seemed to fall out of the recliner landing on my nose. My husband and I laughed as it seemed the recliner was made for a child, even trying to sit upright I fell out of the recliner, as though I were to heavy for it.

But back to that day. He never woke up, I slept in the recliner most of the day. I was very tired. He started to sound as if he was breathing funny, before I could call the nurse she came in to give him some medication to help him breathe better. His medications were given by IV in the mouth, in his sleep he would open his mouth for the medicines. I was extremely sore and tired so talked with one of the nurses about whether I should spend the night again. She told me she thought he had another week left and that I would need my strength, to go home and get sleep in my own bed. I left and went home. I called several times to ask how he was doing. At one point I was told he had woken up for a little while and was doing okay. They promised to call if anything changed but did not expect any change. The next morning or I should say around noon, I woke up, still very tired. I was about to call my husband or his nurse and ask if he was okay and tell them that I was going to sleep a little longer. As soon as I picked up the phone, my caller ID went off, they were calling me. I did not expect to hear he had taken a turn for the worse and to come right away. I quickly dressed, no shower, no makeup, no mirror. I went to get something for my pet to eat as I knew I would not be home for a while. I also went to the refrigerator to get something to drink so I could take my meds., so I would not panic. It seems like everything fell out of the refrigerator onto the floor. It was ant season, I did not want to come home to ants so I cleaned it. I really did not think my husband was about to die, rather I thought he had taken a turn for the worse. After cleaning the mess, I went to get my keys to the car. I have 3 sets. I could not find any. I tore the house apart, my purse apart. Finally sitting on top of my purse I had just pulled apart, I spotted my keys. I got in the car, it would only take about 5 minutes to get there, that is until for the first time in all the time we have lived here, there was construction on the roads. The 4 lanes were down to one open, but traffic kept being stopped to let the other side through. I had not had a red light in my travels there, that day I hit every light as it turned red.

When I got to Hospice Home, the nurse and two other woman were outside waiting for me. They told me my husband had just died. I wanted to be with my husband, holding his hand when his time came, but I did not know if I would be able to mentally handle it. His dying before I arrived seemed as though it were meant to be. That I would not be able to have handle it. I will never know. I do know that after they told me he had died, they brought me into a room to talk. Shortly after they said he had been cleaned up and asked if I wanted to see him. I was in shock, though still trying to control my emotions as I always do. In fact, while there I heard many people cry out loudly upon the death of a loved one, whether they were there when it happened or arrived shortly after. These people would be crying uncontrollably, I would sometimes see them in the hallway and look the other way, trying to give them privacy, as we each deal with death in our own way, there is no correct way. I did not want to act like these people, not that it was wrong to cry or any shame in their crying, rather since I am always trying to control every aspect of my life I did not want to lose control. In my shock I told them I wanted to see my husband. I do not know why, probably to be sure he was really dead, not that it was a mistake. Looking at him, there was no doubt he was dead, he looked dead. The nurses had seen me taking pictures of some of their statues, outside and many of my husband, they told me to take one of him dead. I thought how strange to take a photo of him dead. But they persisted telling me that I would never get the chance again, that he would be in a coffin the next time I saw him. They told me I could always delete the photo. I took 2 photos, the first one he looked dead so I took the second, he still looked dead. I took no more.

I flew up for his funeral with the same memory card in my camera and took photos looking down from the plane and a few videos of planes landing. While I have always taken pictures of medical helicopters, I had rarely took photos of planes. It was not until someone wanted to see a photo that I saw the pictures of my husband dead. I quickly went by those. When I returned home I forgot to change the memory card and took more pictures. After seeing the pictures of my husband dead several times, I could not delete them, it seemed as though I would be deleting him from my life if I did, I finally changed memory card. I cannot tell someone whether they should take a picture of a loved one dead, as I still am unsure if I should have taken the photos. Maybe some day I will want to look at them, but for now I do not want to see them.

Back to after my husband died. I was in shock. I had to get his clothes to bring back up to Hospice for the funeral directors to dress him in for his flight. I could not find any suit pants that went with his suit jackets, I ended up just finding a pair of dress pants that matched. Shirt, tie, underwear, socks, shoes, all had to be brought. It is odd that even when I donated his clothes, I never found the pants that went to any of his suits, I must have donated them at some earlier time but do not remember. On my way home, a rock from a truck in front of me hit my windshield at the exact spot I look out. It did not break, but it did shatter. The whole day was surreal. It would be no different as I flew up to his funeral. I have mentioned before how people say I am sorry. When I got on the plane I sat next to a pilot that was going to a hub to catch the plane he would be flying. He asked where I was going, I replied calmly to bury my husband. He immediately told me how sorry he was. I told him it was okay. It was not okay, but what does one say? First when people say “I am sorry”, sorry is usually used to apologize for doing something wrong or possibly hurting someone. The pilot had done nothing to be sorry for, I did not know him. After my response he looked at me strange, I guess saying it was okay was strange. I followed it up with, it was expected but still a shock. This seemed to make the pilot more comfortable. As for me, I was lost in the clouds in my mind or just lost.

At the viewing I remember hurrying into the funeral parlor, I could not wait to be with my husband again. Though I dreaded it, I also needed to be with him. I do not know if I expected him to be alive or what. I just know I wanted to be with him. It seemed throughout the viewing and funeral that I seemed to give more comfort than was given to me. My husband would have wanted me to keep it together, I was worried I would not be able to. With having to comfort others it gave no time for me to think of my husband’s death. As I said, everything was surreal, I was in shock. Glancing in the mirror the day of the viewing to put on make-up, I even fooled myself into thinking I looked fine. I know I fooled others, which was what I wanted, but not to fool myself. But I did look fine, a mirror does not show what is inside. I do not know what I looked like inside, I was too confused and still in shock.

There are stereotypes describing how someone who has a loved one die acts or looks, I did not fit any of those. I still do not. I miss my husband more with each passing day, yet to an outsider, even my family, I seem to be pulled together. They think I should be out of the grieving mode and back to living my life because I look normal. Once again, what is inside is so much different then what others see on the outside. I think we need to give people who have a loved one die room, room to rediscover themselves and to allow them all the time they need, no matter what they look like.

This is yet another blog I started to write a few months ago, but did not finish. I do not remember everything I wanted to explain or write, as I had the title and 3 paragraphs. It seems as though I am missing something in this, much as I am missing so much in my life.

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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.

Excuses and More Excuses Staring at me from the Mirror

I started writing this some time ago so it has been edited and finished to catch up to how my life is going. Today I thought I would finish this. Not because my life has gone back to normal, rather there are one or two more blogs I want/need to write. An update on my widow friends. The one whose husband died almost 2 years ago is trying very hard (some might say too hard) to get on with life & make new friends, but still having bad days. The one whose husband died last March just got rid of her husbands clothes and is not ready to move forward yet, though she still has her faith & her church. I am behind them in time and also in my movement towards the future and the normalcy of life. I have no time-table for when I will be normal, I do not think anyone could say when my time will come, or if it will ever come. My only thought is that it would be nice to at least to start to live my life, not just exist in my life.

It has been almost 10 months since my husband died. I have not accomplished much. Yes, I have cleaned the house and donated my husbands clothing & other things. But at some point I got either tired of cleaning or just thought I had done enough for the moment and would start again, later refreshed. At least that is the excuse I told myself. Now, the clutter I cleaned has begun to pile up again. Not as bad, but with nothing to do, my house should be clutter free and spotless clean.

There are many excuses I have been telling myself. Do I tell myself thinking I am somehow fooling myself? That the mirror reflects that these are legitimate excuses? I know some are. But too many excuses I think are coming from my having a hard time getting on with my life without my husband. I need to figure out a way to realize what excuse is legitimate and what excuse is just that, an excuse. An excuse not to live life.

Since I had started writing this, I have been trying to find at least one thing a week that I have been making excuses for and try to accomplish it. I had put off getting routine blood tests for fear of catching the flu…that is a legitimate excuse, even my doctor agreed with me. I am sure there was a part of me that put it off because of the fear I have walking out the door, but the main reason was flu season. I went 2 months ago. All is fine with my blood work. There was a part of me that worried the tests would show I was pre-diabetic, due to not eating correctly and also forgoing dinner for dessert. Luckily this was not the case. That is one example of a small accomplishment even with an excuse thrown in.

I have put off many things with excuses. I am accomplishing getting at least one thing done a week that I have made excuses for. That does not sound like a lot and if I am honest with myself, it is nowhere near enough. It might be the best I can do at this point, or it might just be me, making yet another excuse. But I have to start somewhere. I have to find where legitimate excuses start and excuses I make up start without realizing it. This sounds like another excuse, but this one I think is legitimate, knowing an excuse is legitimate will make me push harder to get past the excuse.

I think just walking out the front door will always be an excuse for me not to go out. To some that might sound stupid. But the fear of panic attacks stop me in my tracks as I try to walk out the door. It seems since my husband died, every day is a hard day to walk out the door. I have had days where I walk out even though the dreadful feeling is alive and well. In the past, when I went out on days like this, I was okay after I got out and to where I needed to go. I am not finding that sense of comfort when I go out on days the fear is alive and well. But I am going anyway. Not all the time, but I am trying. I think my fear of walking out the door is somewhat legitimate, if I have a day where I put off today what can be done tomorrow. But it should only be a day here or there, not my normal routine. I have to forgive myself when I fail, while promising myself I will try harder next time.

My friend who is the widow that is making new friends has been asking me to join the group of women she has become friends with. They go to different places, sometimes each others homes, sometimes to events. I find myself making excuses for not going. She understands, she has been where I am. One of my excuses is that everything is too far away (she lives about an hour & 1/2 away), which is not really a legitimate excuse all the time, it might be at times when it is a holiday weekend or some other reason that would have a lot of traffic on the road. Another excuse, I am not ready to make new friends…if I make new friends they will expect friendship all the time, not just when I am in the mood. My widow friend understands this as she did not want to make friends when her husband had just died, as I mentioned it is only now she is making new friends. Is it a legitimate excuse? I do not know, I only know that I am not ready to make new friends that live far away. I wonder if my excuses are valid.

I have a cousin I have never met that lives about 10 miles away from me. She is more than ten years older than I am. Age is not the problem for me.  Rather, she is a lot like a sibling of mine who calls all the time, worried about me. Though I have never met this cousin, we do email and are friends on Facebook. After I reached out to her (I should not have but did not think it through), my husband was dying at the time, I regretted it. But I knew she had been wanting to meet me and become close as we are the only two that live in the state. The day after I contacted her through Facebook and email, she had emailed me over 6 times as well as at least 6 messages on Facebook. She had our lives planned out. My husband & I would spend all the holidays at her house, go to church together, you name it, she planned it. It took me 2 or 3 weeks to finally tell her my husband was dying and I had no time for her. Now she is still emailing and messaging wanting to meet. She tells me that no one can believe she has a relative so close and has never met her. Yes, I have an excuse for not wanting to meet her. My sibling is so overbearing and this cousin seems to be the same…I am not ready to have 2 people overstepping their bounds with me…and this one would live close, my sibling lives far away. I just am not ready to meet her. Just yesterday she emailed me again that we NEED to go to church together this weekend. I am an adult, I do not need someone to tell me what I need. I know I have to meet her and part of me really wants to. I just have a big problem with someone who wants to rule my life, that includes my sibling. At least with my sibling I can tell her off, but this cousin I do not know well enough, it would hurt her feelings if I were not so nice. Is this excuse valid? I do not know. I do know for now I am not ready to have another overbearing relative in my life. I will meet her one day and we will probably get along well, but for now I am not ready.

Those were a few examples of where I am at in this process called grief. It would be much simpler if there were a rule book on how we grieve, but then again maybe not…it might cause more pain if we do not progress as fast as the rules say. There are many other areas in my life I make excuses for, I need to work on them too. If I am sad, that is legitimate, it is to be expected. But I do think I am making too many excuses and missing out on my life. I do not want to wake up one day and decide to really look in the mirror and see that life has passed me by while I was making excuses. So, I will continue trying to accomplish more, allowing for some excuses, yet pushing myself past other excuses. It is not a big step, but it is a step towards the future without my husband to share with.

The Mirror says Social Media is not a Friend

When my husband became ill, it seemed Facebook and Twitter became my friend. Not a real friend, but I am friends with people on them and during wait times if my husband were having tests. surgery, etc. or on a night I could not sleep I would communicate with my friends through social media. Sometimes when I came home after a few nights slept in the hospital I would turn on the computer and spend hours catching up with my friends. They were my support group, cheering me on to remain strong, that they were there for me if I needed them. I do not know what changed. But social media no longer seems to be my friend.

After my husband died, I initially continued on with social media. One day I did not want to bother with it. One day turned into two, two turned into three and so on. When I finally decided to check Facebook, I had too many messages and notifications to catch up with in one sitting. I was overwhelmed. I probably should have immediately replied to as many as I could then I would not have gotten so far behind. The task of trying to catch up is daunting. I have tried several times, trying to go back to the oldest photo tag or comment posted on my wall as well as messages. Each time I do not accomplish much. Mostly because as I try to catch up with what everyone sees, I keep getting private messages. The messages are from friends I do not want to ignore, but by chatting with them I get further behind. So each time that I have tried, I also have failed. But that is not the only reason I no longer feel social media is not the friend it once was.

At Christmas time everyone was posting photos of their trees and houses decorated, new cars, happy families. Everything was beautiful. I looked around at what I once considered to be beautiful in my home but it did not seem beautiful. My husband was not here. One of my widow friends told me she somehow felt envious of her friends on Facebook, that they were living normal, happy lives while her’s seemed to stop. I knew the feeling. I too felt envious of my friends happy lives, beautiful houses, the exotic locations they were going to, most everything made me feel a twinge of envy that I probably would no longer have the life I had. I was not truly envious, as I was happy for my friends, it is just hard to look at things you are not sure you will ever have again in your own life.

Two weeks ago I decided to bite the bullet and go back on Facebook and attempt to catch up. This time was worse. Some of my friends are religious and tag me in inspirational pictures or quotes. Those are okay as they do not say “just get over it”, rather they are trying to show compassion. It was other friends that posted on their own walls. They had pictures and quotes that all basically said “Just move on with your life, it is not hard”. Those were not the exact words but it seemed many of my friends were posting these type of things. I know they were not meant for me, but for themselves. But I felt as though they were for me. It felt as though everyone were trying to tell me how to live. As I said, I know this was not meant for me but it hit close to home, making me think less of myself.

For a while, I just went on Twitter as only a few know who I am, the others that follow me do not know me. Soon, those who know me started to direct message non-stop. This was not what I wanted either. I know they were all trying to be nice, they care. The problem is I am trying to hide in social media, not be seen. Much like looking in a mirror, I do not want to look but I also do not want to be seen. So I stopped using Twitter too.

So what once was my friend no longer seems to be. If I had to guess it will be again. I need to catch up with my friends on Facebook, even if I do it in a mass message to my closest friends, as not everyone knows what has happened in my life or with my husband’s illness. I do need to spend less time on Twitter when I return, as I go there to look at something for a moment and when I look at the clock hours have passed by. I know it will probably take several attempts with Facebook to become comfortable with it again. But I owe it to the friends who were there for me in the darkest times, who I have not been in touch with since my husband died. I need to let them know I am trying to get on with my life. I need to apologize for what seems like turning my back on them.

For today I answered one private message. It was not from a good friend so it was easy. I will try a little each day or if I am up to it. I need to push myself. Maybe social media is not my friend now. Maybe I will still feel some type of envy or anger with the inspirational “get over it” quotes. But as I get stronger, maybe these things will no longer bother me. They never did before. I am trying to learn to live again, get back to what was my normal but it will be a different normal. There is no way around that, I am not the person I was 7 months ago. I have to start somewhere in every part of my life not just social media or friends.

Mirrors that Define

I have lived in the Northeast and Southeast United States. I was actually born in the north and lived there for several years. I probably should remember more about those early years, but I only remember a little. I moved to the south when I still young. When asked where I am from I always say the town in the south that seemed to be my where I had more formative years. When I was almost 21 years old I moved back to the north.

I moved to the Pocono’s. I found I did not like living there. I planned to move back but met my husband and stayed. I never meant to live there as long as I did but I never thought to move. One year I had a migraine that was extremely bad and my doctor admitted me to the hospital tests and to try to get rid of the migraine. Upon testing they found something in my brain, a white spot. There was a lot more testing done after the initial finding. This was not my first go round being admitted for migraines and having tests done. That was what concerned the doctors, no previous test showed this white spot. My doctor came in on a Thursday and said he was going out of town, that I would not be leaving the hospital soon and another doctor was going to take over until Monday. The next day, a Friday the new doctor came in and told me she felt there was no need for me to be in the hospital as all IV drugs had been stopped so I could go home with the pills I was on.

This was a big mistake. I was given 4 different types of pain medication while I was in severe pain and told to stagger the medications, switching the medications every 2 hours. I was in severe pain. I would fall asleep, awaken and not know how long it had been, which medication I had last taken, but I would guess and take another pill. That I did not overdose on these medications is a miracle. I know I took too many, as I started hallucinating. My husband had gone to the store and returned to find me completely out of it and had the hospital call my doctor where ever he was. He told my husband to take me to a larger hospital, forty-five minutes away that had more resources.

At this bigger hospital more tests were done. Sometimes they would do them in the middle of the night as that was the only time the testing equipment was available. They monitored my medicine. It seemed this migraine had taken my life over and I was in constant pain, no matter what was given. After being there for another week, it was decided to send to me another hospital about 2 hours away. As they were preparing to take me to an ambulance a neurologist asked if I wanted to see what was in my brain. He then showed me this white spot and told me they had come to the conclusion it was an incurable brain tumor. It was very deep in the brain and touching the brain stem. He told me I probably had 3 to 6 months left to live. I was shocked! I did not know what they had found just that they were doing tests to figure out what they saw. I thought it was something minor. So the ride in the ambulance now became even more scary. I had time to think I was dying and it would be soon. I was always told they could not cure my migraines that if I had a brain tumor that caused the headaches, they could cure that. Now I was told even a brain tumor could not be cured.

At this new hospital, which was a university hospital all the Fellows, Interns and Doctors would come in and point and poke at me, always saying out loud how I did not have long to live. The worst part of this was they had decided that I would be taken off of all pain medication so I could live what was left of my life without being in a fog from the pain medications. I thought how crazy that was. I was not in a fog from the medications. Why not let me live my remaining days pain-free? I had no choice though, the doctors had made it for me. I was there a week, given physical therapy lessons that were supposed to help with pain. I was so glad when I was released.

After I returned home, I called around to find out who the best neurologist in the area was. There was one that came highly recommended, he only saw the most difficult to diagnose or treat patients. He agreed to see me. He was over 3 hours away. He was a nice man. He ran many tests. He also told me I was not going to die in 3 to 6 months. That though I had a white spot, it looked more like multiple sclerosis. He ran tests for it but all came back inconclusive. He told me I needed to have an MRI done every 3 months to be sure it did not change. He also put me back on pain medication. He was a humane doctor, he did not see why I should suffer in pain. He is also retired now so if I ever need a good neurologist I will have to search again as finding a good neurologist is hard.

The next few weeks I thought a lot about the misdiagnosis and how I felt. I realized how much I disliked living in the north. We vacationed in the south every spring. I told my husband before our next vacation which was soon that he needed to find a job in the south as I would not be returning to the north. I loved my husband very much, but I also knew I did not want to spend one more day in the north. Knowing I could die made me realize how much I disliked living in the north and I certainly did not want to die there. My husband to his credit, told me to send resumes to places he could work in the south. Part of our vacation was spent with him interviewing. He was offered a job at every place he interviewed. He took the job that was willing to wait while we packed and readied to move to the south.

After he was offered these jobs I had another fear. Be careful what you wish for as it might come true. What if I were wrong and it was just me not where I lived? If I made my husband change jobs and we uprooted our lives only to find out it was not what I wanted. I worried a lot as my husband had accepted the job and I was busy packing. I wondered what we would do if it turned out we did not like living here. I worried my husband, who had never understood the south, would not like living here much as I did not like the north.

I worried for nothing. At first my husband had a hard time dealing with the slower pace of life. He was used to getting things done fast. It did not take long before he grew to love the slow pace of life of the south. To slow down and enjoy each moment, not going fast and planning the next movement. He told me often how he wished we had moved to the south sooner. That we wasted a lot of our lives up north rushing, running to stand still, rather than slowing down and enjoying everything life had to offer. He enjoyed every moment in the south. We were also lucky as there are several large university hospitals all within an hour drive. These hospitals are not like the one I had been in up north which had cold, uncaring doctors. These hospitals care about their patients. My husband would become a patient as time went on and we were very lucky to have the hospital and all the doctors, nurses and everyone who worked there.

I have explained where I have lived and how I felt about each. We all have our own likes and dislikes. I am sure that as much as I dislike the north there are just as many that dislike the south. But this is about how I define myself. I am a southerner. I am defined by where I live. I also let where I live define me. I am also defined by how I feel about where I live. There are many things that define me, but none are as strong as my feelings about living in the south. Some of my family that live in the north think it is stupid to let where I live define me. I do not think they understand. It is not really north vs. south. It is the way of life in the south. The acceptance of others in the south. I can hear some from the north saying they are not accepted in the south. To some extent that is true. When someone first moves to the south, we have to get to know the person. Once we do, if they are nice we like and accept them, no matter where they came from. We also accept them for who they are.

If anyone has been reading this, they know I use a lot of words to say a little. I talk a lot in person too. Up north, I am told I talk to much. Here in the south, talking a lot is what others like about me. Up north I would be told to my face I talk a lot in a negative way. In the south we do not tell people what we do not like about them. In both the north and south we are brought up if we have nothing good to say about something/someone, do not say anything at all. I wonder to myself how people in the north can be taught this yet turn around and point out what they do not like about another or that the person is different. While living in the north I saw this with others all the time. I thought it was cruel and would say so. That of course would lead to my being told I talk too much. Rude, crude and socially unacceptable is what we in the south say when someone decides to tell us what they think, if it is negative.

In this blog, I have generalized. I normally do not do that. There are many nice people who live in the north just as there are some that are not nice that live in the south. I do not like to generalize as there are always exceptions. I am simply pointing out that for whatever reason, when I glance in the mirror, I want a southerner to be what I see. As I move forward exploring what I want my life to be, when I am done, I want to remain a southerner that lives in the south. There are a lot of things I need to change as I move forward, but being a southerner is not one. This is not meant to offend anyone that lives in the north, south, east, west or even a different country, it is only my opinion about myself.

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.

The One Not Seen in the Mirror

My husband and I have a son. He is grown now. He is married and has children. He lives far away now, but when my husband first got sick he lived about 2 and 1/2 hours from the hospital my husband was in. I have not mentioned him, not out of any reason to hide him, rather it seems he is no longer part of my life.

Several years ago, when my husband had his defibrillator surgically inserted, it was considered a serious operation, as my husband was born with an abnormal heart. My husband was in the hospital for 3 weeks for the surgery, was released and was back in the hospital 1 week later for 2 weeks to try a new medication. During that time, our son worked on the road and traveled a lot. He drove past where the exit to the hospital was (it was a 5 minute drive from the exit to the hospital) many times and he never stopped to visit him. We understood, he was trying to make a good living and it was hard to stop after driving for many hours for a short time then have to drive another 2 and 1/2 hours. No one in our family understood. But my husband and I did.

When my husband became sick, our son came to visit often. It was a long ride, he would only be able to stay for a half hour and return home, as he was not traveling with his job any more and had to wake up early for work. When my husband was moved to rehab, he came to visit. He built a ramp so my husband would be able to get into the house. He seemed to be there for me, the times he was around. When he was not around he would call to see if I were doing okay and to check on his father. When we were told my husband did not have long to live (not when he had to go to Hospice, but a few months before), he called to tell me he had not been a very good son to me and he was sorry. He told me he wanted to be there for me if and when his father died.

He flew up to his father’s funeral. He gave an excellent eulogy. There was hardly a dry eye there. He broke down after the eulogy. I was there for him and he was there for me. It was tough to bury someone so young, my husband, his father. He flew home to where he lives, I flew home to where I live. In the first few weeks he called at least once a week. He asked if I was doing okay. I was always afraid to ask him if all was okay with him and his family, as he seemed to always need something or something was wrong. Family started emailing and calling to tell me that my son was in constant contact with them which they found odd after years of him not wanting anything to do with them. They told me he had told them that his father wanted him to be closer to them. They felt he was trying to manipulate them, get money out of them. I know how he manipulates for money as I have mentioned in a past post of someone always looking for money. Yet, I felt he was honestly trying to reach out and be a better family member. I told them so. Soon they were giving him money. About that time his calls stopped.

He last called on January 1st at 2 a.m. I text messaged him on January 31st as it was his anniversary. I did not want to call, as when I call it is always at a bad time I am told. After my text, I got a text from him saying he would call when he got home, that he was working. He never called, there were no more texts. I have emailed him several times, he has not replied to any email. I can only assume when the ATM closed he had no use for me. Which is sad.

Was I a good mother? Only he can answer that. I can say I took him to every baseball, basketball, football, bowling and every other sport or activity he was in. Some were an hour or more drive away. I never complained, I sat in the stands and cheered for him. I took him to movies on the day they opened. I bought him anything he wanted. I did a lot for him. But that does not make me a good mother. I think I was. I could go on to list all the things my husband never did with him that father’s normally do, but this is not about their relationship, it is about ours. Each person has their own feelings about what a parent should be. Maybe in his eyes I was not a good mother. I do know that every family member has said I went above and beyond what most parents would do for their child. They do not know he has not called or emailed or sent a text message.

It is sad to think that he has not made any effort to contact me. As I mentioned we live very far away. I could have become very ill or died and he would not know. I know he is alive from the family that email me of their sending money to him. I would like to say that it does not hurt that he has not made any contact with me, but that is not true. While I like to think of myself as someone who does not get hurt easily, this hurts. He is after all, my son. The one person who I would have thought would always be there for me, if only just to listen.

So on a sad night when I miss my husband so much, I am left sitting here thinking of our son and how he is no longer in contact with me. How maybe if he emailed, I do not need phone calls, an email might bring me some cheer or happiness. Or maybe just a little understanding. As it stands now I have no idea why he stopped calling other than that I am no longer his ATM. If that is all I have ever been to him it is even sadder. I have given most of my life to raise him, what was left was given to my husband to keep him alive. Now I am left with a life. Nothing else, just a life. Alone.