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.


Anger and Other Emotions Reflect in the Mirror

Yesterday I wrote of cooking for one. While it is true I have thought of this and everything I wrote about it is accurate, it is not what I meant to write. I was angry yesterday. I have always said sleep on it when I am angry, as anything said in anger might be regretted. So rather than write about my anger I wrote fluff, something not really of importance to my moving forward. Today I will try to write of my anger and other emotions I felt yesterday.

I was trying to get ready to walk out the door, while still caring for my ailing pet when a counselor from Hospice called. They called one week after my husband died, then 3 months later, this was my next 3 month call. The man is very nice that calls. It seems he understands a lot of what I am going through. He also seems to feel as I do, that the printed papers I get from Hospice do not apply to me, most if not all of the time. While normally I would not mind talking to him, it had taken most of my courage to just get ready to walk out the door. On top of that my pet seemed so ill and was looking at me as if I should stay. I needed to go to the post office so putting it off another day was not possible. I was just about to walk out the door feeling guilt about leaving my pet when he called. So I was angry.

I know I could have been rude or told him I was busy, instead I felt obligated to talk to him. I told him of my pets impending death and how everything about the way he was dying was similar to what my husband went through. The lost weight, the weakening, the unwillingness to eat and having to try to use an oral IV to give him some food. These are all things that I went through with my husband. He told me most people tell him that smells remind them of the person they loved who has died. He told me he found it to be more images of the person dying that brought the sadness. He also told me of his pet who died last spring and how he had gone through a lot of what I was going through, how hard it was for him and his wife, that they still were sad almost a year later. This man understood. I know many do not. They feel as if a pet can be replaced and will be forgotten, but that is not so. I remember every pet I have had, as well as how they lived and died. Having someone understand how I feel helps, as there are only a few in my life that understand how losing my pet can be upsetting and I have not really talked in-depth to them. In talking with him, it brought comfort but it also brought up other emotions.

The biggest emotion yesterday was anger. When my husband and I were told he needed to go to a Hospice Home, we both knew it meant he was dying, though we also felt he beat the odds and had lived before there was still optimism by my husband and myself that he would beat the odds again. That optimism faded when we got to the Hospice Home. Once my husband was admitted to the Hospice Home, he was taken off all the medications that kept him alive. The only medications he was given were an antibiotic so MRSA would not return and endanger others, as well as tranquilizers and pain medications. There was also a lidoderm patch that they were not going to give him due to expense and they did not have it. I brought 2 boxes in for them to put them on as they offered some relief. By taking him off of his medications, this probably made his death come sooner. This is where the anger comes in. I am not angry with Hospice and to some extent it is not true anger, but it is with myself. Had I known his medications would be stopped I may have brought him home and he may have lived a week or two longer. There are moments when I think of him asking me if he were dying and that he did not want to die. He knew when he went to Hospice that he was going there to die, I am sure he must have felt afraid, wanted reassurance. I never lied to my husband and did not lie when he asked if he were dying. I did not tell him he was dying though. He had stopped eating. I told him that if he did not start eating he would die. It was not a lie, it was just not telling the whole truth. A truth I, myself could not accept.

Then I think of having him if he had died in the house. That would not have been easy to deal with either. I also think of how well Hospice treated my husband. Treatment that though I tried my hardest I could not give that level of care. Wounds he had that he was seeing a would specialist for, healed in 2 or 3 days due to their constant care. They made sure if any pain was shown he was immediately given something. The same with the panic and fear he was feeling, they gave him tranquilizers before he could even ask when they noticed how he appeared. So though there is this sense of anger, there is also this sense on thanks for caring for him so well.

But it was not just anger. There were many emotions that sprung into my mind. Sadness that my husband is gone forever and that my pet is dying soon. Sadness that the life I knew is now gone. Anger that I have to start a new life. Maybe it is not anger, if might just be uncertainty or some other emotion, but for now I will call it anger, it is not something I want to do. It is something I have to do. Irritation that though this man, the counselor is nice, I have to talk with him every 3 months. To be honest I could tell him not to call and he would not, but I know I need a little help even if I do not want it. Sadness that this counselor is correct in saying it is images that bring the most sadness. With every little thing, such as last night every time I tried to turn the lights off my pet cried, though my husband did not cry, he did not want the lights off at night. Each image with my pet or any image alone can cause this sadness. It is an overwhelming sadness. A feeling of despair. That there is no hope of a normal life.That in some ways there will never be a life, just an existence. Being a realist I know there is life ahead, but at moments of insecurity the realist seems to hide and the fear and emotions take over.

There were so many emotions yesterday that I cannot even begin to cover them all. I must say most of the feelings are still present. I also must say I feel no guilt over anything that happened. Though there is anger, it is not true anger. It is most likely an emotion I do not have a name for. I know I will deal with many emotions, not just now but most likely for the rest of my life. I know many will be sad. I also know that though sadness sometimes never leaves, happiness and sadness can live together. That though I am sad I will still experience happiness. That the happiness will most likely outweigh the sadness. But for now, I am angry.

Boundaries in the Mirror

One of the last times I called 911 for an ambulance to bring my husband to the hospital two women came to the front door while I was standing waiting for the ambulance. I would suspect I was short-tempered with them, which is expected with the stress I felt at that moment. I told them they had to leave as they were in the middle of my driveway and an ambulance would be there any moment to take my husband to the emergency room. I also told them I had no time for them. They apologized and asked if they could visit at another time. I told them yes, but please hurry and leave. They left, the ambulance arrived and it was off to the hospital. With all that was happening so quickly with my husband’s health failing, I forgot about the two women.

About 4 months after he died these two women rang my doorbell. I was expecting family in a few hours, this would be the first time I allowed anyone to visit since my husband had died. The women explained that they had been there over the summer and I seemed very stressed and this was the first time that they had been able to get back to my neighborhood. They asked about my husband and I told them he died. They offered condolences and said they would pray for him. Then they asked if they could come in. I was thinking “no way” but said “okay but only for a few minutes as I am expecting family”. I was lucky, they had other appointments that day so we only talked, I should say I only talked briefly. They asked if they could return in the future. Once again I thought “no way” instead I told them they could return.

My family visited for five days. I thought it would be an uncomfortable visit. It turned out to be fine. Though many things we planned I was not up to, we did go out some. The reason I say the visit was fine is my family does not know of my panic attacks and my fear to walk out the door. My explanation for not doing all they wanted was the weather, which they understood. The morning after they left, while I was still sleeping I heard the doorbell ring again. I thought maybe it was a package or something else of that type. No, it was the two women wanting to visit. I explained, I was sleeping and was not up to a visit. I also explained it would probably be a little longer until I was up to visits. They apologized for waking me and wished me a good day.

The following Saturday, in the midst of a severe migraine, the doorbell rang again. Once again it was these two women. Again I told them I was not up to it. For the next several weeks they probably stopped by my house at least once a week, though a few times it was twice. Each time I told them I was not up to visits. The last time they rang the doorbell, which was last Saturday, I told them nicely that it would be a few weeks if not months before I was up to visiting. They told me to have a nice day and left. I thought, finally, some freedom from that doorbell and these two women. It was not to be.

This morning before the doorbell rang, I saw them walking up my stairs. I have windows on each side of my door, so they could see I was sitting there. I had no time or I would have gone in the other room and not answered the door. They also came at a bad time as I was looking at my ailing pet, thinking of my husband who had died, there were tears in my eyes but they were probably from something other than crying, an allergy most likely. I did not bother wiping the tears when I answered the door. They noticed the tears, but still wanted to come in and visit. I tried to hide my anger as I told them that on Saturday I had told them I was not up to visits. That I would not even allow neighbors to visit. I told them I was struggling, not only dealing with my husband’s death, I now had my pet who was dying. Surprisingly the women said my pets impending death must bring a lot of memories of my husband’s dying and what I went through before he died. I did not expect anyone to understand how my pets illness brings up what I went through. I still did not allow them in. In fact I tried to tell them nicely that I did not want any visits for at least two months, maybe longer. They were quite kind and said that mourning (they did not say grief) takes not only time, but time alone. I was surprised they understood my need to be alone as well as my need to look at the past, one even said it is best to look at the past so we do not repeat what we did not like about it in the future. It was nice to have someone understand that. Still I did not let them in. I know I need more contact with people, but I am working towards that. As for these two women, they are very nice but they need to learn to respect boundaries.

I did not mention who these women were as most people would draw judgement on them. They are Jehovah Witnesses. I am not. I had a very good friend that was. Our friendship was not based on religion but how we had so many things in common as well as our mutual respect for the other. Religion was never brought up by her unless she was going to an assembly and she would tell me what days she would be gone. I sometimes asked her about her religion. She would answer my questions. I am always curious about other religions and had never understood this one. My friend gave me explanations for her reasons to be a Jehovah Witness and a little about their beliefs. I sometimes joked with her about the knocking on doors. She did not like to do it, but did it once a year as it was part of her religion and service. When a Jehovah Witness comes to my door, I think of her. I would hope no one was ever rude and slammed the door in her face. She was very kind and sensitive. That would have hurt her immensely, though she understood why people did this. This is why I talk to these two women, out of respect for my friend.

I talk about my friend in the past tense. This is because I lost contact with her about 8 or 9 years ago. Shortly after my husband became ill, I looked to see if she was on Facebook. She was not, but her husband and children are. I messaged her husband to tell her I said hello, he asked for my phone number. I messaged back the number but told how my husband was so ill and all my time was spent caring for him. That I would like her to call, but I might not always be available. I never heard from her. Upon telling two who knew her well, they both said she must have died as she would have definitely called. I then went back to Facebook and looked at all the pictures her husband and children had posted. She is only in one, it is an old picture her son posted, someone asked who she was and he replied his mother. No other comments. She had two bouts with cancer, I see her son is battling cancer now. My only conclusion in seeing these things are that she most likely is dead. I was going to contact her husband again or her son or daughter, but realized I am not up to being friends with anyone at this time. So I have put it off until I am more sure of myself. I may not contact them even at that point as I do not want to bring up memories they might have already dealt with.

As for the two women that keep ringing my doorbell, I think they now understand I need time and will not bother me for a while. These two women also made me think of boundaries. When to say no. They obviously had not been respecting my boundaries or at the least did not understand. I know at times I have crossed boundaries thinking I am helping. Or I have crossed them with my husband’s doctors in order to talk with them when I wanted to, not at their convenience. My whole life I have crossed boundaries. I have spent a lot of time at race tracks or shops where the cars are built. To me being at a track or shop is more enjoyable than going to a spa. I know I crossed boundaries, used my looks to gain access to places others only dream of going. When I was younger someone very intelligent told me it was not fair I used my looks to get what I wanted. I replied one day my looks will fade, their intelligence would not, so I was using what I had before it was gone. I now see I was crossing boundaries. Would I cross them again? Most likely, but I think these two women have taught me a little. I will think twice and make sure it is not at the cost of someone else if I decide to cross a boundary.

No Perfection in Mirrors

When someone tells me that something in their life is perfect, my initial thought is they are lying or at least embellishing the truth, exaggerating. After hearing of such perfection I also wonder if the person thinks they are fooling me or themselves? It is my opinion that no one or relationship is perfect. There are some things that can be perfect, but it is not a person or emotion. While some may come close perfection, in my eyes and in the eyes of others they are most likely not perfect. Let me give some examples.

When it comes to appearances, many look at models or magazines to see how they should look. These people have makeup artists, are airbrushed to look perfect or at the least perfect. Photoshop allows a person to change their appearance to look perfect to them, it may or may not to others, but still it is not the real person, it has been altered. You can surround yourself with many friends, appearing to be most popular, perfect friend, but there is most likely someone else with more friends. Also, true friends rather than fair weather friends can be part of that equation. Relationships that appear perfect, behind closed doors show they are not perfect. Unless one has just started a relationship, then it feels perfect, but after the newness wears off, reality sets in and it is similar to other imperfect relationships. Perfectionists most often find these imperfections easy to accept, it is the other, harder parts of life that they strive to be perfect.

Yet there are examples of perfection. A baseball game can be a perfect game but in the history of baseball there have not been many. A bowler can bowl a perfect game. Announcers calling a race may say the driver drove a perfect race, but that is an opinion, as all drivers think most of their races have been perfect, whether they won or lost. You can get a perfect score on a test. You can get puzzle pieces to fit perfectly, as they belong there. While some of these rely on skill, some rely of being lucky. I am sure there are many things that can possibly called perfect, but they rely on more than just one thing or relationship.

My husband and I had a good marriage. Not a perfect marriage, but good. We had ups and downs throughout the years, which I suspect most couples do. There is saying not to go to sleep angry. I did not believe in that. It took a while for my husband to go to bed with anger. I am a person who when mad, will say things I regret and cannot take back. I will never apologize for what I said. I might say I was sorry I had said it, but I was not taking back what was said as in that moment of anger I was speaking the truth. This is a harsh side of myself that my husband learned he did not want to see or hear. He also learned that anything he said in anger I would at some time in the future use against him. After a year or two or maybe more, my husband realized it was better to leave things unsaid and go to bed mad. When we woke up, we usually realized whatever we had been arguing about was insignificant and would just forget we had argued. There were times that we remembered and were still angry, but not so angry that we would say things we regretted. Being able to do this I think is one of the reasons our marriage lasted and would still be strong if he had not died. Through his illness we still argued on occasion, over very minor things. Since they were so minor and neither of us had said anything we regretted it was easy to go forth as though we had not argued. In the last months of my husband’s life I made a conscious effort not to argue. At first it was not easy, but as he grew weaker I did not want to argue anymore, I just wanted to be with him in our imperfect marriage, taking in each moment as they came. Though those looking from the outside often commented how perfect we were, until near the end I would always reply that nothing is perfect. If asked the secret to my husbands and my happiness and what appeared perfect marriage, I would reply it was not perfect, they just saw it that way. When my husband became near death, in the last week, I changed my reply that our marriage was perfect for us, which made my husband happy.

I am reminded of a man I worked with. He was always talking about his “perfect marriage”. After hearing this non-stop for what seemed to be an eternity, I finally asked if he had just gotten married. He replied he had been married close to ten years. I then replied that he was a liar, no one has a perfect marriage. At this point he lost his temper and threw a stress ball he was squeezing across the room. I told my husband how the man got on my nerves. My husband agreed as he had some that worked for him or above him that had the same attitude. My husband and I agreed there is no perfect marriage, rather you learn ways to make it better and be together often or as some others do, go your own way but not forgetting you are married. By that I do not mean cheating, I mean the spouses live different lives, they go to events with friends, not their spouses. Each spouse has their own life but they still come together at the end of the day. The last description was not our marriage, ours was to learn what each other liked and try to find things we could at least have an interest in. We wanted to be together, not apart. But what worked for us does not mean it will work for others. But back to the man with his perfect marriage.

At an event for the place I worked for, high on the top floor of the second tallest building in the city, this man was there alone. I had my imperfect husband with me. He knew this was the man with the perfect marriage. We walked over to him, I kindly introduced my husband including the word imperfect, my husband puffed out his chest like a rooster, quite proud of his imperfection. I asked the man where his wife was (leaving out the word perfect that he always used to describe her). He gave a lame excuse for why she was not there. I did not rub it in, my husband may have in a small way. On the top floor we could look down to where my husband worked. He managed many. He also was the person that would make a final decision on whether the customer or business would pay for a problem. Most never met him, his decisions were based on what his employees told him. He had a lot of power in his job that many were unaware of. I rarely talked to my co-workers of what my husband did for a living, so this man with the perfect marriage did not know. The man still feeling superior asked my husband what he did for a living. My husband pointed to the building far below and said “I am in charge of every decision made there. I hope that for your sake if you have a need for a decision made that I am unaware that it is you when I make my decision. I do not make positive decisions for people who proclaim they are perfect or are in perfect relationships.” My husband then said he was joking, but I knew my husband, he was not joking.That is not to say my husband would have treated this man differently if the need arose, rather he wanted the man to know that he had power over him. We then walked off to our table. The man stood there, still holding his head high as though he were perfect, but I also could see a little chink in his armor, my husband had gotten his message across. At the end of the evening my husband took my arm and we walked over to this man, my husband shook his hand and told him it had been a pleasure meeting him. He added one more thing, that he was proud of his imperfections and was proud of our imperfect marriage. He also told him he hoped one day the man would find imperfections so he could have a happy life. I was proud of my husband that night. Though he was powerful, the people I worked with were of equal if not more far-reaching power. He held his own with people in a totally different environment, if not surpassing all at the party. I would have expected nothing less from him, knowing him as well as I did. Though he was not perfect, his behavior to me that night was.

I bring up this story to show that those who proclaim so-called perfections or perfect relationships rarely have them, if at all. As for the people who acknowledge that they are not perfect and their relationships are not perfect, they probably come a lot closer to the impossible perfection the others seek. Once again, I want to point out I am not talking about perfectionism, which is a whole different subject. I am pointing out the people who want to fool you into thinking they are perfect are most likely the least perfect. I have seen people crumble when they are in the presence of the person whom thinks they are perfect. Ignore these perfect people if you can, learn to love your imperfections, they are what help define you and make you normal.  As for my husbands and my marriage, it may not have been perfect. But if asked when my husband was alive he always replied “it was perfect for him”. I would agree always and say that for an imperfect marriage, it was just the one I wanted.

No Mirrors Please

I am not ready to look into the mirror. That I know for sure. There is nothing else I know for sure. I wish I could say I did or that I was coming close to knowing, but it seems my ability to have my feet planted firmly on the ground is far in the distance. Maybe like objects in the mirror it is actually closer. But it does not feel that way. Too many memories cloud the future. So I am writing about the past so it stays there, in the past, not gone but a memory. If I can keep the past as memories maybe the future will be closer or at least the present.

While in the emergency room one time with my husband one time, I got up to use the rest room. While washing my hands I glanced up and saw my reflection. I looked terrible. It was as if a stranger were reflecting back at me. I glanced again, horror! It was the same if not worse than the first glance. Not that I cared what others thought, but it did cross my mind that others were seeing me like this. I did not want that but soon realized I had no control over it. I wanted the control to change how I looked and appeared to others. I wanted to be able to hold my head high as though everything was under control. But it was not.

I always brought a laptop and kindle to the emergency room or the hospital room. I always posted where I was. This was a signal to those who know myself and my husband well. If I updated my status to being at the hospital, it meant he was sick, but all was under control. If I tagged my husband as being with me, it was a signal that all was not okay, that my husband was not doing well. Arriving back from the rest room, my husband was asleep, most likely from medications. I took out my laptop. I posted we were in the ER. Then I put a comment, which I normally do not. I posted that I looked like crap and if anyone took a picture of me I would tackle them and break their camera or phone. On Facebook, this was met with humor from my friends. Some commenting that I would not only tackle and break camera, but probably break the person’s neck. There were many comments like that. Apparently everyone seemed to know I looked terrible and I was ready to do battle with anyone brave enough to take my picture. Some liked the post, which I thought was strange. Were they happy I looked like crap? More than likely they were just acknowledging they saw the post.

Facebook and Twitter became my friends at the hospital. They also became my friends at home. That may sound strange. I was with my husband who was my best friend. I had become friends and was with the nurses and doctors. I have family and friends. But, for some reason, turning on the computer and communicating on Facebook or Twitter, without really telling anyone what was wrong, helped me to deal. I was going to say escape. But there was no escaping. It was a way to skirt the real issues that were happening, not hide or avoid, but put them to the side. On these social media sites I could be my former self. I did not have to tell anyone how my life had become. I could joke with others as though all was right in the world. I could feel normal. All the while, my world was spinning out of control. But no one could see that through the computer.

When my husband was home, some mornings I would be secretly angry with him. After I helped him to get up and into the living room, the first thing he did was turn on his laptop. I know I sometimes gave him a nasty look. He would ask what was wrong. I would reply nothing. But in my head, I would be thinking of all I had to do before I could turn on the computer, if I had time to turn it on at all. I wanted to shout at him that he was not allowed to turn his computer on until I had a chance to get his medications and everything else he needed. I never did, as I knew that it was my problem to deal with, not his. I did not grow resentful. I learned to accept it. At some point, he would turn his laptop on and never look at it, or look but not see. This did not make me feel better. It just seemed unfair that I was exhausting every bit of energy I had to care for him, but he had time to do something I wanted to. I then started to wonder about how dependent I had grown to social media. I would intentionally stay off the computer at times. Unless, my husband was in the hospital. Then it was my connection to the world outside and I was on it most of the day or night, when my husband was asleep and sleep was something I could not find for myself.

After that time in the emergency room, I learned easily how to wash my hands without glancing at the mirror. I could even put contact lenses in without seeing my whole face. I would glance at my eyes only when putting them in, therefore, I did not see my face. When brushing my hair, I looked only at my hair. Anything that required a mirror, I found a way to see what was needed without seeing my whole face. Looking back, I do not know why this was so important. Probably because of my need to control.

As for social media. Sometimes I am on non-stop. Other times days go by and when I log in, I see countless photos I have been tagged in. They are not photos of me, rather photos friends no I will like. I also see many private messages. Once you read a message, the person who sent it can see what time you read it. I always feel obligated to answer these messages as most are from friends that are good friends. I do not want them to think I am ignoring them. So I end up looking at the photos, I look at the news-feed to see what friends are up to. I do not like or comment on anything or read the messages. I am just looking at life outside my life. Sometimes there is a little bit of envy, seeing that everyone is going about living their lives and their lives are very nice. Many of my friends are in jobs that pay well, so their houses reflect things I once had or most likely will never have. I ignore those feelings, as they are just a result of the sadness I feel. I am happy for my friends even if one of my initial thoughts may be of envy. They worked hard for what they have, they should enjoy it. Sometimes when I see one of my friends has bought their third or fourth Ferrari or Lamborghini, I think how excessive this is. How many families just one of their cars would feed in a world full on hunger? Could that money be used for research to find cures for illnesses? Then I think, they need these cars for the work they are in. Maybe not as many as they own. But who am I to say. After all, my husband was the dreamer. If he had won the lottery or come into a large sum of money, he would have been just like them only his purchases would not be from the need for his work, it would be for his enjoyment. Our garage would be filled with the same cars. It is then I realize I am not envious, nor do I think they should spend less or on causes they already donate to. I realize I am just missing my husband. Nothing more, nothing less.