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.

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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.

Uncertain Insecurities Looking Back at Me from Mirror

 

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I am secure. That is a loaded statement. I am secure about some things. That makes a little more sense. There are things I am certain I am secure about. There are also things I know I am not secure about. My uncertainty and insecurity came into my life three days ago. It involved something I have always been secure about and like to think I still am.

I am a mostly independent woman. I know I can do most things that need to be done myself, that I do not need to count on anyone to do things for me. I can use a chainsaw with skill, as well as shoot a gun with accuracy. I can mow and trim a lawn. Many things people consider a “man’s” job, I know how to do. Growing up, my father did not want me to be dependent on anyone. My mother wanted me to cook and clean, but I think in that area I am not as talented or skilled. I can cook, bake and clean but these skills have never been something I was proud to be able to do. But back to the present. Three days ago I would have said I am an independent woman. What changed? Life. And the weather.

I was watching the news when the weather came on, they were talking of a storm that was going to hit the southeast. We might get snow, some sleet and possibly freezing rain. I already know I do not know how to drive in any of this weather. I learned to drive in the south. It rarely snowed and when it did everything closed down. But in recent years more people from the north have migrated to the south, changing the way businesses operate. Now instead of closing most are open. Some of this is not entirely from people from other areas moving here, some is just a product of progress. At one time the city had only a handful of snowplows, now they have many. Not as many as the north where there is more snow, but they have increased. When my husband was healthy he drove me anywhere I needed to go in the snow. But I have nowhere to go, so I do not need to drive in the snow. I would have liked to run to the grocery store, but I had my chance the day before knowing then there was a possibility of bad weather. When I chose not to walk out the door, I chose to get by on whatever I have here, which to be honest is a lot since it is so hard to walk out the front door to begin with.

My insecurities set in a little later. I remembered last year we had both a snow storm and an ice storm. The ice storm was cruel, it brought down beautiful trees that have stood tall through the years. Power, Internet and cable were out. Even cell phones had problems. My cell phones had no service (I had two), my husband had a different carrier and had service but it was bad due to all the ice. My house has gas logs so we were able to use the logs to heat the house, which it did well, some rooms were too warm. I also have emergency lighting and many flashlights as well as candles. When the storm took out all the power last year, the first thing my husband said was to light the candles. This only caused the house to smell and I had to open the back door allowing the cold in to get rid of the smoke from the candles. But we made it through, laughing at the adventure of living without power.

This time I was going to be alone. I know last year my husband was the one who was insecure about not having power. I was the strong one, the one who told him we would make it through a few days. I know I could have done it alone last year as I was more secure than I feel now. I did not realize how uncertain I was about my security until I emailed a few family members that I might be losing power, phone service, etc. and they should not worry about me as I have food, emergency lighting and gas logs. As I wrote these emails trying to calm the fears of everyone that worries about my being alone, it started to sink in that I would be alone.

Alone in the cold. Alone in the dark. Alone in the house. Alone. I realize this sounds ridiculous as I am alone all the time now. But for some reason, I started to feel very insecure and uncertain. As if I were not sure I could be alone during an ice storm that brings down power lines. It was an odd feeling. I have always been secure about certain things as well as being independent, able to take control of any situation. This was a new feeling, not a wanted one. I have enough fear and panic I do not need to add anything new to the list. As I thought about it, I realized that I would handle it the way I always had. That anything that in the past might have been a certainty will now seem to be less so. That I am more insecure then I thought. I also realize that this will pass. When the time comes and I have to go through another potentially bad storm I will become more secure.

In the end, there was snow, sleet and freezing rain. Not enough to bring down power lines or cause any interruption of anything that is taken for granted. I know this will not always be the case and that there will be things out of my control and that I must be secure through what ever life throws at me as I was in the past. It was just a wake-up call. That there will be times when I face uncertainties and insecurities. I also know that while I felt insecure and uncertain, had the power gone out I would have made it through and come out stronger for having done so. There is another storm headed this way for the weekend. This one will most likely be ice. I will probably feel a little insecure, but that is normal. Making it through the storm will only make me more secure. Being alone is a learning experience for me. It seems some of the most minor things bring the most insecurity. Though I will conquer the uncertainty of insecurity, it may linger a little. Lingering is find, I just do not want those emotions to move in with me.

My Mirror Shows No Cooking

I have a mirror behind my stove. I do not look in it. I take care not to look at it, other than when it needs to be cleaned. Lately the only time I look in it is to clean it. I have stopped cooking for now.

I asked someone I know whose husband died 2 years ago if she cooks. I thought she was going to tell me I was crazy and that she cooks all the time. This woman is known for her cooking. She has always loved to cook and is proud of her cooking. I was even a little embarrassed when I asked her. Her response shocked me. She does not cook anymore. If family is coming by she will cook but for the most part she never cooks. She said she makes sandwiches for dinner most nights, if she is out she eats out.

So it seems I am not alone in not cooking. I cannot say I have asked other widows. I know I could but they are not people who love to cook. I also know one eats out all the time, but she ate out when her husband was alive too. It is something so simple to cook, but the idea of cooking for one just does not make sense. Even cookbooks have “Cooking for Two” recipes. I do not recall seeing “Cooking for One”. That sounds pretty sad, as though you can find no one else in your life to cook for.

I have tried to cook 2 or 3 times since my husband died. The first time I made a large quantity of spaghetti sauce. I froze individual containers with just enough for another dinner. I probably had 7 containers, I say had, as I threw them out. They were taking up room in my freezer that could hold the easy to make frozen dinners already made. But even those sometimes seem to be too much to cook. I remember when I would microwave a dinner it took 3 or 4 minutes, now they take 8 or 9 minutes. I do not understand why they take longer, I can only assume for safety. Many nights I just have ice cream for dinner. It is easy and tastes good. I know this is not healthy and if I do not watch myself I will put on weight most likely. But for now, I am not up to cooking.

I look at all these little things in my life that have changed and wonder why I am concerned whether I cook or not. I think it is because it is part of a life I knew. I am not saying cooking was a favorite thing to do, but I did it every night. I need to examine these little things such as cooking a little closer. Decide if I want to carry them into my new life. Though I am not fond of cooking I do think I need to start cooking again, mostly for my health. I do not know when I will start cooking, but I do know that I have at least decided that cooking should stay in my life as I struggle to decide what belongs and what does not. One thing down, a million others to go.

The Mirror Shows Lost Life and Purpose

I noticed as I drove to the store yesterday, I passed many ambulances. With each ambulance I thought of all the times EMS came to my home because my husband had taken a turn for the worse. Which of course, makes me sad, not just because my husband has died, but the life that I had become accustomed to is gone too. It is hard to be a caregiver and at times I thought I was pushed to my limits, but after a while it became who I am or I should say who I was. Though there were times I probably thought I was at my breaking point, unable to go another day as a caregiver, those moments passed. I loved my husband and being his caregiver gave me a purpose for life. Helping others while I was at the hospital only reinforced this need to be helpful, to be a caregiver. Now my husband is gone, my little pet is still clinging to life, so I am his caregiver for now but I can tell not for much longer. Being a caregiver for a pet is different. I thought I had found a purpose in life being a caregiver. I did, but that time is now over. Though I can still volunteer if I were up to it, I do not think I can go through all that is required again. I am not ruling out taking care of relatives, I am talking about those I do not know or have no connection to. I do not think I can show the compassion and care needed to be a caregiver to anyone other than a relative or close friend. I would like to say that I will never have to, but I have family that are older than I am, as well as younger who are ill. I would be able to show family the same care I showed my husband if needed. Back to the ambulances for now.

It is odd, I probably know most of the people in these ambulances, they have been in my home, but I recognize no one. I know many live near by. They have always been kind. That is really all I know of them. My husband was always taken to a large, university hospital in another county. He was only taken to a local hospital if our county was low on ambulances or they did not think they could drive that far and keep my husband alive. So while they came into my house often and I went into the ER as they brought my husband in, I really do not know any. The same cannot be said for the ambulances from the university hospital. Whether they be the helicopter pilots and nurses or the large ambulance drivers and nurses, I came to know them all. If they are in this county and see my car, they will often turn their lights on, flash headlights, etc. to get my attention, waving the whole time. When my husband was alive, the helicopters would fly lower near our home and then go higher after passing it, as my husband always sat out on the back porch it was their way to say hello. These people became my friends in the last few years.

The nurses in the hospital as well as all the assistants and other personnel all became friends too. When parking my car, the valets all knew me, they knew my husband. If I passed one driving down the road they would wave. While at the hospital they always took time to talk with me no matter how busy they were, they showed concern and compassion. The nurses always asked if I needed anything and brought it if I did. They let me wander the halls and get things out of the supply closets without questioning me. Each time my husband was in the hospital, if a nurse I had become friends with were in another wing, they would come to say hello to me. The same can be said for all the doctors too. They went out of their way to talk with me if I had a question. If they saw me walk by while they were with a patient, they would sometimes excuse themselves to come out to talk with me. They spent more time talking with myself and my husband than most of their other patients. I know who has children, how old they are, what their hobbies are. I know more about all these people then most of the friends in my life. The hospital had become my home.

Sometimes I feel as if my calling to be a caregiver is gone and I have no purpose left in life. It also feels sometimes as if I have lost my home since I am no longer at the hospital each day. In addition it feels like all my friends that I made at the hospital are now gone, though I know this is not true. If I were to drive to the hospital and visit with everyone I became friends with I know they would still treat me the same, as a friend. But I am afraid of how I will react if I go back to the place I spent so much time with my husband, knowing that it is the place that kept him alive until there was nothing left to keep alive. When he was moved to Hospice.

When my husband died, I lost the man I loved. But I also lost all the things I listed above that became my life. I now need to find a new purpose in life. As for friends, I have other friends and my hospital friends are still there, but I am not ready to be a friend to anyone. I go on each day with a sad excuse of a life, having no purpose. I know this will stop and I will move on with life one day. I just do not know when that day will come. Will it take me by surprise? Or will I see it coming? Will I find a new purpose in life or will life alone be all I need? I have no answers. Today is another sad day for me. My pet is getting worse and I fear each time I check on him he will be dead. I am trying to be with him as much as possible, to make sure he is comfortable. I always say no one should die alone, yet that is something that is done alone. I guess I should say, everyone should have someone who loves them by their side as they leave life. At any rate, though I am sad today, I know this too will pass. If my pet dies I will be sad tomorrow. If he is still alive maybe tomorrow will be a better day. Most of us have bad days, today was one of mine. As a realist I know I will always have a bad day occasionally but I also know those days will pass and I will have happy days, that my happy days outweigh the bad. The knowledge that happiness awaits, even though I do not know when it will arrive, is what keeps me going and pushes me to find all the things I do not want in my life when the day arrives. So I will say good night to the bad day knowing that tomorrow is a new day. Each new day brings the chance for happiness. I sure could use some happiness, but I want to make sure I am done with all the work of getting rid of what is not wanted in my life first. Life is too short to waste time on things unwanted. Life should be enjoyed to the fullest when possible. One day when I write this, it will be a day of happiness, having found a purpose and a new life. Not forgetting my old life, learning to live with it, while I am also learning to live my new life minus what I do not like about the old life.

Yet Another Type of Acceptance in the Mirror

There must be many more types of acceptance than I previously thought. I have written about two that were similar yet different. This one is different as well. This acceptance has to do with myself. More specifically how I am dealing with the death of my husband. How I am moving or not moving forward. How slow or fast this process is. How much I should rush myself and how much I should slow down. How I intend to do these things. How I am accepting everything. But I am not talking of just my acceptance, I am also talking about the acceptance or nonacceptance of others that makes this unasked for journey I am on much harder. I normally do not care what others think of me, but this is not only about me, it is about how I am dealing with the death of my husband and how it is perceived, accepted or not accepted.

It seems many want to give me their opinion on how I should be dealing with all that has happened. I am not allowing visitors, but I did allow two family members to visit during November and then December, each time for only a few days. As far as most that know me, including the two I let visit, they can only guess how I feel and am dealing from phone calls. I try to sound upbeat on the phone. I tried to be upbeat during those two visits. If I were to sound sad or show sadness it would only make others feel badly for me as none live close by. They would want to be near to cheer me up. I would not want that even if they did live close by. I put makeup on during the visits, part of the makeup was not actual makeup, rather it was to appear as if I am happy, a smile on my face, standing tall, head held high. I think I have fooled them as they think I am doing better than expected. I do something similar with phone calls, act as if everything is fine, joke about things, when a sad subject is brought up I think of other things in my mind so I do not sound sad. Once again I think this has worked as if these people thought I were not doing well, they would drive to see me, try to help me heal, which is not what I want. This is a journey or drive I must do on my own. I need to come out of this knowing I have done all I could to become whomever I turn out to be, my new self. I do not want the mirror to reflect what others want me to be, rather it should reflect who I have become. Now on to this different acceptance.

There are varying opinions on how I should be moving forward. It seems that to some, my behavior is accepted as normal after the death of a spouse. In some ways these people who accept what I am going through make it hard for me to push myself to move forward. If I tell them a little of how I am feeling (not mentioning panic attacks or anything other than my life without my husband), they immediately tell me I need more time. They tell me to take all the time I need to mourn, not to rush myself. That I will know when I am ready to move on. They know all I have been through. They know how taking care of my husband was a 24 hour a day job, with little if any time left for myself. They know that though I knew my husband’s death was inevitable, it was still a shock and I am now left alone. They are kind and caring in telling me how it will take time to get used to a life without my husband. They accept me.

I have a different group of people who think I have spent too much time mourning and should already have moved on with my life. They do not accept that it should take time to mourn and learn to live a life alone. Much as with those who accept my not moving forward make it hard, these people who do not accept my mourning make it harder. They do not accept the fact that I have not moved forward, they want to tell me how far I should be by now. These people seem to have a cold, uncaring attitude, as though my life with my husband should just be thrown out and it is easy to start over. No matter what I say they do not accept it. Instead I get lectures or examples of people they know who had a death of a spouse and were out and about, happy a week or two after their spouse’s death. I wonder how these examples of people who are thrown in my face truly felt about their spouses. If their spouse meant that much, how can it be so easy to forget them? Maybe they do not forget, just move forward and not think. I then wonder how they think by telling me of someone who has moved on will help me. It does not, it is hurtful to hear these things. It makes me feel less of myself that these people do not accept how hard this is for me. It also makes me wonder if I am taking too long to learn to live without my husband.

This acceptance is different from wanting acceptance of others. It is wanting acceptance from myself. By having two groups of people with different opinions of me, it makes it harder for me to accept that I am having a harder time then I tell others. With the group that do not accept, if I tell them something honest, that makes me sad, they tell me I am being dramatic, looking for pity. I have already said I do not want to be pitied. By telling this group anything I am just trying to buy myself time. Time to move forward without facing their nonacceptance. I need to stop telling this group of people anything, but that is really not an option. If it were possible I would cut these people out of my life for now, if not forever. I do not need to be judged every step of the way towards my new life alone. I am not a suicidal person, if I were this group would surely drive me to the thought of ending it all. I have been tempted to tell one of them on countless occasions that I am ready to give up and join my husband in death, but I know this is not true and this person probably does not care as much as they say. Or they would hear it as my looking for pity. I have to learn to accept this group as they will be in my life for the foreseeable future. Whether they accept how I am dealing has to be their problem. I need to accept this and just work on myself.

It has been a little over six months and though I have made progress, I feel as if I have not made enough. But then I ask myself, just how much is enough? I know there are more areas to work on. I know that neither group of people listed above are really my main problem. I know it adds to my problems, but it is not the cause. I am learning a lot about myself I thought I already knew in looking at what the mirror reflects. I need to keep learning. I also need to go back to the person I have always been, the one who does not care what others think of me. I need to accept myself for who I am. As for the others, it is their problem if the cannot accept any part of what I am going through. Most of all I need to accept that however fast or slow I move forward is acceptable, as long as I am moving forward.