A Day to Cherish

Today has been a good day. Cecil and myself made our way to the grocery store on the bus. Cecil walking slowly with his walker, can't move very fast anymore and so we walk together, very slowly...at a snail's pace really. We wandered around the store picking up this next week or two's groceries, Cecil spotting the fresh cherries in the produce department. Cecil loves cherries, and so do I. I thought about that moment, of Cec's eyes lighting up when he saw the cherries and making a grab for a bag, plunking them in the basket. These are the precious moments I cherish, and will always remember. We made our way back home and Cecil had lunch and then a nice big bowl of cherries. He's gone for a nap now, and will probably sleep most of the evening and then through the night. The lovely cherries beckon to me now, "come and get a bowl". I thank God for this day, and all He has graciously provided in it. May the peace of God surround you always.

Where's the Compassion?

Over the years, these last 13 years to be exact, I have noticed the lack of empathy and compassion that people possess. It has been a long 13 years, and I have had two different careers in that time as well as a few jobs thrown in for good measure. Most of my working/career choices were shaped around my husbands terminal illness. There were many times during the 13 years that he nearly died, slipping into a coma and complications because of the disease. As I worked for 5 years at one job, and another 7 year career at another, the lack of empathy and compassion was apparent. These last few years have been trying to say the least. We have no family to help us or support us, and so it is me and him and God. I have a few friends who support me through these challenging times and I am grateful. I have had several friends over the last 13 years that "gave up" on me, and a few that I de-friended due to their lack of understanding of my situation with my husbands illness. Those de-friended old friends were putting me down and making me feel worse than I already did, so I chose to remove them from my life. I am thankful for the friends I have now that stay with me through the good times and the bad.

Patience and Hope

Tonight, after a trying week, I am sitting back on a break from work thinking about the two things I need to hold on to with all my strength. Patience and hope are absolutely necessary when things go from bad to worse. Looking over the edge of this cliff, knowing that there is always the possibility of going completely over the edge into destruction, I remembered the words patience and hope. When we are hurting and in trouble or our loved ones are hurting, we look for comfort. We look for a quick and easy fix to our solution and sometimes there just isn't any quick answers, or quick help for us. Sometimes we must sit in our pit of destruction and have patience. Hope is very important to have in order to see the way out of that pit, or the path that leads away from the edge of that cliff. We must endure, we must have patience, we must hope. This is how I am dealing with today. I sat for awhile tonight and it dawned on me that I have been here many times before in different times in my life and that things eventually got better for a time. I hold on to that hope with patience and I hope and pray for all who are suffering and discouraged. Do not give up on tomorrow, or the next day, or the next month, or the next year. Hold on to that hope!

My heart breaks for him

Wednesday today. This morning is starting off normal and Cecil just got up to go to the bathroom. He is so sick and my heart breaks for him. He never complains. He has never complained about his situation of living in agony for so many years. I want to break down in tears as I used to many years ago, but now I hold them back, swallowing them up and putting them away for another day.

Present Issues

Cecil has been "toxic" for a couple of days now. He has encephalopathy caused from his liver disease. His liver cannot process much of anything and toxins build up and go through his blood stream to his brain causing anything from mild confusion to complete confusion and sometimes comas. Cecil has had this problem for many years now but it has been getting worse each year as his liver continues to shut down. The pills Cecil takes go through his liver, making the situation very dicey. He needs the pills to survive, but the pills are causing damage as well. This is the main reason why I can't work a full time job. We never know when Cecil will go "toxic". Sometimes he goes two months between episodes and other times he goes "toxic" every other week with major confusion. I can't leave him by himself when he is in that state as he could hurt himself or slip into a coma. When he does go toxic, I have to watch him very carefully to make sure he is okay or if he needs to go in to the hospital. A few years back Cecil had several hospital stays due to the toxic problem, but lately we have managed to keep him out of the hospital. If his toxic cycles were on a schedule, I could call home care and set up regular appointments for them to watch him when I am working, but as we never know when it will happen, it's useless to try and set something like that set up as they need advance notice for care giving. Cec doesn't need to be in hospice yet, and I am so thankful and grateful that he is still home with me. We try to live as normally as possible, and enjoy our time together because we know it is short.

Back to Where it all Started

Tonight I'll take a look back to where it all started. It was summer, 2000 and Cecil was notably tired, and not feeling all that well. He had just turned 55, and had just finished his tour of working up north in the oilfield and tar sand camps in Northern Alberta, Northern British Columbia and the Northwest Territories. He had been Head Chef for many years and enjoyed working in the camps cooking for the oil industry employees. He came back from his winter/spring run and was definitely tired and we noticed that his legs were swelling to an unusually swollen state. I thought it was any number of problems including diabetes and as I am not a doctor, misdiagnosed him completely. Cecil spent his usual summer relaxing and taking it easy and when the following fall/winter came it was time for Cecil to go back up north to work. He worked a month in and came home for a week and went back up north in January and the next time I heard from him he was in a hospital in Peace River, northern Alberta. His company had flown him via helicopter to the hospital there in an emergency and he phoned to tell me that he was being driven by ambulance to Calgary from there. I was upset as we did not know what was wrong with Cecil, and neither did the doctors. Cecil came home and three days later after several tests in hospital went to see his family doctor. I drove Cecil to the appointment but did not go in with him. Cecil came out and got into the car, tears in his eyes and very upset, told me that he was dying. I was shocked. I sat there for a second or two and what blurted out of my mouth was "No!!!" and then, "What a GREAT Valentines Day present!!". I did not plan to say those words, they just came out of my mouth before I could stop them. My whole world was literally upside down. I could not breath and for a few seconds began to hyperventilate. I had been in shock before, experiencing trauma most of my life from one source or another, and I calmed down, took some deep breaths and thought of Cecil sitting in the seat beside me. I grabbed his hand and held it, speaking softly to him. "Did they say how long? Did they say why? What's going on?" I asked him. He said he had liver disease and it was end stage and that they did not know how long he had left. I calmly drove us home, and did my best to stay focused in traffic. That was almost fourteen years ago, February 14th, 2001. I'm not sure what we did for the next few days after that, but I remember being completely inundated with many different emotions at that time. I felt angry, confused, sad, and disoriented for a long time after that. Cecil does not talk about his feelings much but I know it has affected him as well. We have been together for twenty years now, and at the time of his diagnoses we had been together for six years. It was not fair! I have said this over and over in my mind, and to God, and what I have come to know since then is that is absolutely correct. It is not fair, but what is?

An Average Day

Today was an average day I would say. It's a holiday Monday and I work from home so it was quiet, like most of our days. Cecil spent most of the day sleeping. He's in a lot of pain and takes the maximum dosage of morphine allowed and has been for many years. Cecil slept and I sat quietly doing my studies all morning, working on a Bachelor of Ministry, online studies. I made Cecil a small breakfast and then he went to bed, I made him a small lunch and he went back to bed, and I made him a small supper, and he went back to bed. This is our routine for the most part. It is not easy, this life, but some days are definitely better than others, and this has been a good day for both of us.

Tonight I begin to share the journey of living with and coping with the dreaded words, "Terminal Illness". This journey began fourteen years ago on Valentine's Day, February 14, 2001 when my husband told me in the car after his doctor's appointment, that he was dying. This blog has been on my mind for a very long time, as I have hoped through the years to be a help to others who are living with a loved one who is terminally ill. I want to share our day to day experiences as well as to share with you how we have coped the last fourteen years. This blog will be full of emotions, some joy and happiness, as well as some anger and despair. I want to share what it is to mourn inside for fourteen years while I continue to live with and care for my husband, knowing that the end is inevitable for him, as well as all of us. I am very tired tonight so I won't go into details in this post, but I plan to blog here often, if not daily, and it is my hope that this blog will be beneficial to many who stumble across it, that it might help you in your walk and journey here upon this earth as we struggle with the hardships that befall us, the questions that we cannot seem to find the answers to. I hope to help others find some sense of peace in the midst of insanity and grief. My blog will not be for those who are sensitive to sadness and despair, anger and frustration. As with all of my blogs, I speak and write truth, and I don't sugar coat anything for the sake of making it "seem okay" or "seem better". Truth is truth, and reality is reality and for those who are interested, I thank you for reading my blog and I hope you will find something helpful here as well as all of my writings and blogs. Laurie Ann Smith