The Long Rays of Sunset

There is a moment when the sun is heading for the horizon. The sun’s rays seem to burst in every direction or the sun looks like a huge ball slowly descending into a vast emptiness. It is clear that in a very short time, the ability to see it will be gone. Moment by moment, the sinking continues and as you stare at this glorious array, it disappears from view.

You are aware that this setting is on the verge of completion, but there is very little to indicate  the length of time that it takes to occur. So, you stand very still and you watch intently and in the process of trying to catch the very moment of “Sunset”, time stands still.

That is how it feels right now. Many things are happening, but it seems that time is standing still and only the losses are signs that the moment is upon us.

In the past 72 hours, my husband has gone from being able to perform the basics of life, i.e. personal hygiene, feed himself, clothe himself and decide what he wants to have for entertainment to loosing control of his legs and this afternoon, he can only stay in bed…

He mentioned on Monday that his ability to balance himself as he walks was becoming a little troubling. Tuesday morning, he was up before I was and was in the kitchen getting ice out of the freezer when I heard a heart sinking thud. He had fallen.

I went running into the kitchen to find him on the kitchen floor. His knees had given way and he was unable to stand so he fell on his knees and pushed himself onto the floor. As I tried to assess his injuries, he said that he was beginning to feel his legs again. I helped him up into a kitchen chair and pushed him to the table so that he could steady himself.

I was trying to stay calm so I fixed the coffee and asked if he thought that he might enjoy a cup. As he sat there drinking the coffee, he began to cry. We embraced each other and cried the tears that we tried so hard to hide from each other…I told him that we were a team and that we would face this new challenge together, just like always…I told him that I would call the hospice nurses and see if we could get a walker. I suggested that this might steady him and give him something to help with his balance. I thought that the walker was the ticket and we waited for the hospice nurse to deliver it to us. 

In the mean time, we walked to the recliner in the living room. In a house this size, it isn’t a great distance from room to room. He managed this walk without difficulty, but he chose to stay in the recliner or to rest in bed most of the day.

About 4:30 P.M., the nurse delivered the walker and I thought that we had a better chance of not repeating the mornings adventure.

My son had come early in the morning and was with us most of the day. Around 5 P.M., my husband wanted to go to the bathroom. He said that it was the perfect time to take the new walker for a “spin”.

As I helped him from the bed to his feet, he grasped the walker like a “pro” and as we were trying to navigate the bedroom doorway, his legs gave away again. This time, I was behind him and laid him down as gently as I could, but this wedged me and my husband between the doorway and the bed. Neither of us could move enough to help ourselves.

Thankfully, my grandson was on the front porch playing on the computer. I began yelling for my grandson to go get his father so as to help us. Seven year olds are great at yelling and he was able to get his dad into the house in short order.

My son literally picked up my husband from off of the floor and placed him in the recliner. This is my son who has the traumatic brain injury. Who fights his own battle for quality of life. This is my Marine, my warrior child who has said, “My misfortune shall be my Fortune.” I am amazed by him.

I watched as he lovingly cared for his step father. From the outset of this journey, both my son and daughter in law have been with us every step of the way.

My son has always been a support. After my husband’s surgery, my son gently performed basic nursing care. (The Marine Corp teaches all of its members basic emergency medicine for battle injuries) He has a wonderful bedside manner because he has a wonderful caring heart.

As my son and I lifted my husband into the bathroom, it was becoming clear that my ability to care for my husband alone was becoming an impossibility.  When my husband goes down on the floor, he has to have some ability to control his extremities or I am unable to manage.

My son and I got my husband back to bed and I immediately called the hospice nurse for a bedside commode. I thought that I could manage my husband the few feet from the bed to the recliner if we didn’t have to walk the length of the house to the bathroom.

The rest of the evening went well. My husband was so very tired from the events of the day that he went to sleep around 9:30 P.M. and I stayed awake until 2:30 AM, Wednesday morning, keeping watch over him.

At around 5:30 A.M, I awoke to find him sitting on the bed. He wanted to use the beside commode. I said that I was coming and to wait for me.

The next few minutes were like a nightmare that seems to never end. As I approached him, he seemed to loose consciousness and he fell forward. He didn’t put his hands up to break his fall and his face scooted along the carpet leaving a rug burn that was bleeding. His neck and body was pushed up against the wall.

I am sorry to say, but I burst into tears. I tried to rearrange him so as to relieve the obvious pressure on his head and neck. He was unresponsive to me. My first thoughts were that he had died. But, I was wrong.

I was able to reach the phone to call for help. My son was here in about 20 minutes. By the time my son was able to get here, my husband had regained consciousness and control of his legs. Together, we were able to get him up to the beside commode. There we waited for my son.

My training told me that this was a neurological kind of episode or a cardiac interruption of blood flow to the brain. No matter, either one is directly tied to the disease process of cancer.

Those in the healthcare field call this the dying phase. It is when the body is deterioating at a rate that the disease controls. There is nothing that can gauge its progress and the goal is to makes everything as comfortable as possible.

The rest of the day Wednesday went well with my son’s help. His strength, in every way, is invaluable to us. His physical strength is so necessary right now. My son has stayed with us at the expense of his wife and children for the past few nights. No matter what I say, he is not willing to leave us.

Somewhere in the memories of my mother’s cancer battle, I knew these days would come. I know that I was frightened of them from the first when the doctor said the word, “Cancer”. It was this part of the journey that I dreaded.

 I knew this part of the journey would be rocky and very difficult in every way. This part of the path challenges the physical stamina, the mind, and it slowly breaks the heart.  But, no matter what I thought I knew about the days that approach this horizon, the reality is that they are so much more difficult than what I remember.

This morning, I went to Road’s site, “The Price of Love”. He has a song posted there that is so true of our present situation and of our walk towards this sunset. Right now, this song has captured the place that we find ourselves on this long journey….It is called, “Everybody Hurts”.

Yes, It hurts right now. It hurts in places that I didn’t know existed.  And I know that this part of the journey requires a dogged determination for putting one step in front of the other. It must be walked no matter the fatigue, the heart ache or the fear.

These is no stopping the advance toward the setting sun. I must echo my son in living my misfortune. And, somehow, it must become my fortune, my treasure of great riches that must sustain me for the rest of my life. These are the last of the precious days to live and to love him.

I have a few more steps to take with him and I will find a way to walk them. And as the song say, “Hold on.” That is what I am doing. I am holding on until that time that there is nothing left to hold…until those last rays of this sunset journey are gone…

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Gathering

For months now, I needed to gather all of the winter clothes and put them into the storage totes so that I have a place for the summer clothes. When you live in a house with 2 closets, total, this is a rite of passage of the seasons.

I have washed all of the sweaters, coats and the fleece things. I have made sure that they dried completely so to prevent any mold or mildew and now for the true challenge, where to store the totes???

I have a storage trailer, but what was once my husband’s task is now mine and I don’t have the upper body strength to lift and carry these heavy laden totes down to the trailer that is stored in the barn. I will wait to see if my son will help.

While gathering my husband’s winter things, I began wondering who would be the ones that needs these clothes and who is that size that I can give them too. I caught myself and felt like I was betraying my husband in some sort of way because I was concluding that he would not be here to wear these clothes when winter returns this year.

I know that it is the practical side of me, but it still felt like I was betraying his living. That is the reality, though. He will not be here and he and I know it.

Yesterday, his oldest daughter called and said that she felt the need to spend time with her father. I told her that if she wanted time with him, now was the time. Not next week or this weekend, but now.

I don’t know where we are all going to sleep, but that doesn’t matter. She needs to come and she needs these days to say her “Goodbyes”.

Her brother was here last month while my husband was in the hospital. He needed to be here. He needed to see for himself the state of his father’s condition.

Somehow, words can never convey the actuality of the present. It takes eyes to see and ears to hear so that the mind and heart comprehends the reality of the moment. Anything else allows the mind to fly away to the daily details of life. When you are in his presence, there is no escaping what this cancer is doing to someone that they love.

These are hard times for his children. Their time with their father was restricted by divorce from an early age. My husband’s son has had the most time as he was 7 years old when his parent’s divorced. His sister was only 18 months old when the marriage ended and she has no memory as a child of living with her father on a daily basis.

That doesn’t seem to matter. She has always been a “Daddy’s Girl” and she has grieved for the loss of her father from the time of a small child. Her life was greatly impacted by not having him living with her.

She did live with us when she turned 18 years old. She was needing her father’s love and protection as she stepped out into young womanhood. I think every girl needs their father most when they are embarking on adulthood.

When she dated, she brought every boy home to meet her father. She decided if this guy didn’t have the courage to meet her dad, then he wasn’t enough of a man for her…pretty good reasoning for a girl of 18.

So now, she will be here for these last days. She will drink up his presence and it must be enough for a lifetime. She needs to be here and, more than words can express, she wants to be here.

It is the time of gathering. Gathering of things, gathering of people…there have been many in the past week that find their way here. Many are from our life as business owners, former employees, old friends, extended family, all from his life and our life together.

They felt it in their heart that it was time to come and see him. A time to come and be in his presence and without words, tell him that they love him. The tears are not far from their eyes and when I walk them to their cars, the tears are no longer held back. The sorrow is there. My husband’s life has impacted theirs and they had to come.

It is good because my husband wants to be cremated. There will most likely not be a viewing except for the immediate family…There will be a memorial service here and one where his family lives. The second where his family resides because his parents are not able to travel and I do not have enough room for everyone to stay overnight. The house is just too small.

So, let the gathering begin and continue until all who need to be here, who need to be in his presence, who need to say their final “fairwell”, come…Soon, it will be too late.

I think back and remember my husband always said that if the effort could not be made during the life of the living so that the person could enjoy the moment, why bother after the person is gone. For his sensibilities, the effort was only valued when the person was still on this earth. Everything done after their passing is done for those who are left behind and the person is already carrying on with his new life…That was his viewpoint…and it is mine.

Let the gathering begin. Let the goodbyes be said and let him be here to enjoy the moment…

Approaching The Sunset

It is quiet and I have a few more moments at the computer. My husband was having a lot of pain and the IV pain medication wasn’t helping. I gave him some Phenergan to potentiate the pain medication and he is sleeping.

I go in once an hour to check on him. Sometimes I wake him to make sure that he can come out of this deep sleep. I seem to not be able to help myself. He is in such a deep sleep that it looks like he isn’t breathing. When this happens, my heart stops for a moment and then I go to his side and brush his hair  from his face. He stirs and my heart begins beating again.

Last night, I had to give him Zofran. It is a drug that stops vomiting. He slumped over in the recliner and I woke him so that he could lie down in bed. He grunted and said, ” Am I still here? “. I responded with, “Were you going somewhere?” He replied, “No, I just was a little surprised that I woke up this time.”

I don’t think he was joking. He was making a statement of fact. He looks at the unknown just as I do and he is surprised that he hasn’t left us yet. Somehow, he knows that the time isn’t far off. I helped him to bed and he slept. He didn’t wake up until around noon.

He started looking more pale in the late afternoon. I could tell that his pain level was rising and he was feeling weak and tired. He was so tired that when daughter called, he didn’t want to talk. He was feeling really bad…

And so it goes. Another day and then it is night. It is the night that seems so long and hard. I never know what to expect.

Like I said earlier, last night he was sick to his stomach at around 9 P.M. and I gave him medicine for nausea. He woke me again at 3 A.M. He was sick again and I gave him more medicine. There are nights that seem to draw out forever. Last night was one of them.

Our life is full of uncertainty. At first, it seemed that the uncertainty pertained to years…then months…now it is days and nights.

I wish that I could do more for him. He is still able to be up and about but he no longer finds little projects to do. He sits in the recliner most of the day. His big event is going outside and sitting under the tree. Soon, he tires and his pain starts to build, so he goes back indoors to sit in the recliner some more.

The look in his eyes is hollow and he rarely smiles. There are not many things that cause him to rally from his “fog”. There are moments, but they are few and far between. I can’t tell what he is thinking. I could always in the past, but he is shutting me out now. He is just staring at nothing most of the time. That is the fog of the pain medicine.

We are approaching the twilight now…the suns rays are fading and so is he.

I am grateful that we are in a quiet place. It has its moments of peace and contentment. I wish I knew what was coming next, but most likely, I really don’t want to know. I would be anticipating it and I would not find those small moments of peace or contentment because I would be fearing what lies ahead.

I went in to see if he was still sleeping. He looks so unlike the man that I knew. I miss the man he was. I miss this lifeforce that contained the essence of the man. I know that he misses it as well. The next time I see it, it will be in another form, a different reality than what I know now.

He is sleeping, but he is slipping away. Moment by moment, minute by minute. Day by day he walks closer to the sunset and I can’t go with him…I truly miss him and I will miss him for a very long time to come….

Another Embarks On This Journey Called Cancer

Lately, it seems that the incidents of cancer are popping up all over. Our doctor made a comment not too long ago about the increase in new cancer as a diagnosis in his patient population.

Yesterday, when I went in to grab a few things at the closest convience store, the lady that works there has become a new aquaintence and she has voiced support for me and my husband over the past year. As I was paying for my milk and other things, she asked me if I could do her a favour. I responded that I would do whatever I could.

She asked if I would write down questions that she needed to ask her doctor. This coming Thursday she is going for her first visit with an OB/GYN oncologist and she wanted to make sure she asked the right questions that would produce the most information.

I was stunned. She was diagnosed sometime while my husband was in the hospital and I was unaware that she was told that she had cancer. Another one in our age group has cancer! Another one without insurance to cover this catastrophic illness. Earlier this month, my cousin buried her husband. He died of a rare form of cancer of the kidney…She is a widow at 48 and so it goes. It seems that my generation is being plagued by this terrible disease. The numbers keep growing.

So, this afternoon, I must sit down and try to figure out the best questions for her to ask her oncologists…Oh, Lord, God, I need Your help.

I know what I would be asking, but what if that isn’t what she wants to know? I think that I will write out a guideline that will help her form her own questions and that way, she will still be the one asking the questions. I also will tell her that I may be able to help in deciphering all of the medical jargon that goes along with doctors and cancer treatments.

 

It saddens me greatly that this wonderful lady must begin this frightening journey. It is long and arduous. It is full of ups and downs, twists and turn. That is just the emotional part of this journey. Then there is the physical… 

 It is like walking in a rocky place without the benefit of moonlight…                                                   

 

I really hate cancer, I truly do hate this thief that kills, steals and destroys!!!!

” If I Don’t See You Again, It Has Been An Honor “

I have just come inside after trying to mow our acre lawn. I seem to have lost a part of the exhaust on the old Bolens mower and it seems to have overheated and blown a head gasket. At least, that is my best guess as it blows white smoke from under the hood…

I stopped mowing when it started to belch out the smoke and when I raised the hood, oil was thrown all over the exhaust. When I opened the breather, it was full of oil…most likely, head gasket…it is going to be a long summer.

I started the LawnBoy push mower to try and finish up, but I finally gave up. I am really tired after today’s events and my allergies are having a fit. What a disappointment.

I was looking forward to mowing until sunset…around 9:30 PM. I do a lot of thinking while I ride the old lawn tractor. I needed to do some thinking this evening. I needed to ponder on what our family doctor said to my husband today.

Usually, on Wednesday, after his usual patients, our family doctor has us come in to do a little talking and then he takes my husband through some peaceful imagining and sometimes, he lays his hands on my husband abdomen.

Early on, we learned of our physician’s commitment to holistic healing and we have enjoyed this 45 to hour time that is used to block out the events of the week and look ahead to whatever comes into our lives. Today when our doctor saw him, the first question that he asked my husband was how much he weighed.

My husband told him and then he looked on the chart and saw that he had lost over 20 pounds since he last weighed in at the office. That was about 2 weeks ago. That is a lot of loss in a short time. It seems to be advancing and the loss of weight tells most of us that the cancer is winning the battle.

My husband enjoyed today’s session immensely and he got up off of the table to feeling like a new person. His energy level was increased, he felt a sense of well being and he was renewed. His fatigue seemed to be gone. That was amazing.

Our doctor informed us that he would be gone for two weeks and then he said, ” I expect you to be here when I return, but, if I don’t see you again, it has been an honor” and he put out his hand to shake my husband’s…

I wasn’t surprised by this statement. I think that my husband will be here when our doctor returns, but I also see why our doctor wanted to say this to him. There is no guarantee that he will be here. The time is getting closer for my husband’s journey on Cancer Road to end.

My husband complains that he is so tired and he is short of breath when he moves around too much. He doesn’t have the will to push himself to do things as he has always done in the past. This kind of fatigue is beyond just being tired. It is an absence of life force, it is an emptying and a lack of replenishment of life…

My husband has said a few things that lets me know that he is aware that he cannot continue on much longer. He sees his face in the mirror and he doesn’t recognize the man that is standing there. His eyes look so big and open now. He sees that his muscle mass is dwindling.

It doesn’t make it easier to see this and make these kinds of realizations. He wants to live and he wants to be a part of his children and grand children’s lives. He knows that all, but my oldest grandson, are too young to remember him when they grow up. He wants them to remember him, not from photos or from stories; he wants them to have their own memories. But, most likely, they will not.

Our time with our family doctor has been such a blessing. This young doctor has a wonderful heart and he does practice the healing arts and not just the science. He truly cares for my husband. That bond has grown over the months and it was clear that saying this to my husband struck a deep cord within his heart.

There are no words to express our gratitude towards this remarkable young man. He has been a great part of this journey and he has played one of the most important roles in my husband’s survival…I truly hope God blesses him as he has blessed us…

As for the next few days, I will have to push mow this monstrous lawn. Summer is just beginning and that is a lot of pushing and shoving….maybe, I will plant wildflowers and place signs along the road for people to not mow, native wildflowers growing…

False Alarm..Or Was It?

Last night was one of the most difficult nights that we have had since arriving back home. I can honestly say that my stress level went off of the chart, not once, but twice and I have been trying to recover from the intensity of this stress all day.

I don’t know where to begin to try and describe all of the events that took place from noon yesterday until 6 AM this morning. I don’t know if I have the energy to recount all of the events. I know that I don’t.

I do know that my husband had a partial bowel blockage yesterday afternoon and that he and I had to re engineer the tubing for the PEG tube because the design was contributing to the problem.

I do know that without careful monitoring of the PEG tube and taking action on a timely basis that my husband would have been totally blocked and we would have been in an emergency situation.

I do know that the pain pump set off a false alarm and no one knows why it decided to scream at 2 AM for no apparent reason. But, because of the alarm, I set into motion a multitude of activity that woke up at least 4 people, including the hospice doctor, and disturbed their sleep, all because this alarm malfunctioned. I felt terrible about that, but as I see the remaining events of the night, I realize that something next to a miracle occurred.

That is because the hospice nurse was here when my husband seemed to have a total bowel blockage. Thank God, I was not alone when everything took place. I had another pair of hands that helped me with him and I was not alone to face all of this.

As I try to evaluate the events and actions of those 24 hours, I don’t know how to take into account that help was here, right at the crucial moment, when it was needed most. Help was here based on a totally different set of circumstances than what actually occurred. It is like having a prayer answered before you knew that you needed to pray.

Only an All Knowing God could set off a set of unrelated events so that help would be here at the precise moment that I needed it most. I don’t have another explanation for it, especially when the pump malfunctioned and nothing has been found to explain why it would sound an alarm at that time of the morning.

I am still trying to process everything that happened. It really shook me up. Every muscle in my body aches from the tension that was coursing through me. I refused to take my blood pressure. That would have only made me more stressed, I am sure.

I am resting and I am reflecting on all that happened. My only conclusion is that it is very peculiar.

 

Father’s Day

This Father’s Day has begun with a cool morning breeze and memories of Father’s Days past.

He is up and walking around the yard. The dog and two cats follow him as if he were the leader of this parade. He is quietly contemplating something. Maybe, he is praying or just enjoying the feel of the grass on his tender feet. Maybe he is thinking about firing up the Harley.

He is looking so thin. His face is more gaunt and his skin has a yellow tint to its naturally dark tone. His knees look like those in the pictures of people who are starving in Africa. As my eyes cover the rest of his frame, they rest on the protrusion of his abdomen…It is hard to realize that the man that I am watching is 55 years old. He looks like he is 70.

I am shocked by his weight loss over the past few weeks. But, it is hard to maintain weight when all you are allowed is liquids and clear ones at that. It is hard to pack calories into water or juice that goes through you in such a short time…That is not considering the fact that most of the fluids do not get to pass through the body, but find an escape through a tube that is anchored in the stomach…

There are moments that I wonder how can this be?  It is in these moments that I step out of the circumstance and I look at us as if I were an old acquaintance that has not been in contact for several years. I am shocked by what I see. It is incredulous to comprehend that this is our life and I wonder just who are these people that look familiar, but are strangers? I don’t recognize them.

The next moment I slip back into my skin and I see us. I see two people who are weathered and worn down by all of the pains and problems of the past few years. I see sadness and a little hope. I see pain and a glint of joy. I feel comfort and feel a little anxiety over the future.  I know that if God doesn’t allow a miracle, this is his last Father’s Day.

He has come inside and he is setting in his recliner listening to the Christian TV Station. He is without pain this morning and I can see that he is thinking. I would guess that he is thinking about the motorcycle in the garage. He would be thinking that It would be a great day to ride the Harley. I doubt that he is strong enough to keep it up on two wheels…but that is what he is wanting. That is his Father’s Days wish. He wants to ride.

He wants just one more time when he is in control of the throttle. One more time that he can point the bike  toward the sun and see where the road takes him…One more time to feel the wind in his hair and enjoy the feeling of freedom that only a ride on a motorcycle can bring…one more time to let all of the fears, cares and worries blow through him so that he can be free of them…even cancer can’t follow him on the motorcycle…

Yes, his thoughts are of his children and grandchildren. He spent yesterday with his daughter and her 2 little ones. He enjoyed watching them and holding the 2 month old.

Watching my grandsons and his run, jump, hunt worms and play games caused him to remember the days when he and his cousins did the same at his grandmother’s house. It seemed to satisfy him that he was able to replicate this memory for the next generation…it was a sweet moment, a lovely memory made.

Memories made with pictures of him with his daughter and grandsons…a quiet day to celebrate his fatherhood. A few living footprints that declare that he lived. It is another Father’s Day and most likely his last.

Reflections in the Shadows

It is 11:37 on Friday night and my husband and I were on the kitchen floor looking at the condenser, the evaporator coils and the compressor of our 15 year old refrigerator that isn’t working quite right. My major thought was, “Not now, don’t pooped out on me now. I don’t have the money to replace you because I need everything I have for funeral expenses.”

So, I use all of my weakened strength to push and pull this big side by side refrigerator out from the wall. I leave to get the sweeper and when I return, my husband is getting on the floor to “take a look” and determine what may be the problem.

In spite of my protests, he continues on to spread out on the floor with his over sized abdomen and he assumes the position of repairman and Mr. Fix It  just like always. I know just how difficult this is for his tired and wasted body. I watch him juggle the tubes and take extra precaution so as to not pull the PEG tube ( It can be easily dislodged from its placement ) and to not drop the IV pump that sends a steady supply of potent pain killer into his pain racked body…There is no stopping him because this is what he has always done.

The refrigerator had set on thick carpeting for the 6 years that we were away and it sucked up every bit of animal fur as well as dust bunnies…all of these things kill appliances. But the grime wasn’t the problem. In spite of it, the old ice box had kept the milk cold, the jello jiggling and prevented spoiling of many left overs. Now, at this time of night and in this kind of warm weather it was going to quit on us…and there he sat,  trying to clear a spot so as to see what was working and what was not.

We did basic Home Repair 101 by checking the power source and sure enough,  when we tested the surge protector, it was clear that it had failed and not the appliance. That was a huge relief. I don’t know if we were just lucky by finding the problem so early and before anything could spoil or if we are just that good at spotting trouble before it gets too far, but we both breathed a sigh of relief when we learned it was the surge protector.

For both of us, the absolutely last thing that either one of us needed was to be wrestling with a huge refrigerator and with deep dirt. He, because of his body’s limitations, and me, because of my asthma. No matter, there was nothing stopping him and if he was going to sacrifice his comfort and willingly experience pain, then I would follow him and treat my asthma symptoms all night, if need be. As I have posted before, we are a team…

As I approached the refrigerator with the vacuum, he looked up at me and said, ” Have I told you that I love you today?” I smiled and went on with what I was doing. As I was chasing the dirt and dust with the hose attachment, I thought about how many, ” I love you..s” that I heard for the past 17 years. I could not begin to count how many times. The number rivals the stars.

Early on in our relationship, he told me how he didn’t want to miss a day of telling me that he loved me and if he couldn’t remember doing it by the end of the day, he would ask the same question, ” Have I told you…”.

While the roar of the vacuum made conversation impossible, I pondered further on the things that I would miss. I wondered if I heard his love expressed in words enough for a life time. I began to wonder how would it feel to live my life without hearing, “I love you.” ?  Will I ever hear it said again by someone else or will I even allow someone to ever say those words to me? Will I even desire to share my life with another man again? If I thought for a minute that I wanted to find another husband, are there enough men out there?  I don’t know.

As I poked and proded the stubborn grime, I pictured myself at 11:37 PM on a Friday night worrying over an appliance. It is just me and our little dog. There is no one to ask for their opinion as to what may be wrong. I saw myself tug at this old fridge pushing and pulling it away from the wall without any help and wishing that I had this man, who is presently setting in the midst of this mess, to ask what he thought was wrong.  Or wishing that I could hear his voice asking for my opinion as to the problem.

I saw myself earlier on that Friday evening wondering if it is worth the effort to cook anything for supper and opting for a peanut butter sandwhich because I didn’t see the need to make a mess for one person to eat a small meal.

I saw myself take the sandwich into the living room and our little dog following after me as if to beg for a bite of my “supper”. I saw the TV playing and there was only one lamp to light the room of shadows. I saw myself going through the motions of living without the companionship that I craved. I would remember that I had it for too short of time and loosing it to the thief called, “Cancer”. Later, I would try to find a way to go to sleep or find a way to block out the unending lonliness.

 I feel myself sitting on the couch, trying not to think about the weekend days that held nothing for me to anticipate, no planned pleasure or outing, just sitting on the couch waiting for the hours to pass until I could return to work on Monday. I could see myself trying to will these hours of lonliness to pass more quickly. It seemed to be a long time until Monday.

It isn’t a hard stretch for me to imagine this scenario because this was what it was like immediately after my divorce and I still remember the emptiness and the lonliness. I still remember the pain of coming home at the end of a work day to a dark and empty house with no one to greet me or ask me about my day. No one to call to say that they would be late coming home and what about supper. No one to get concerned if I didn’t arrive home in a timely manner. I still remember how that felt and I fear that it will feel as badly as I remember it.

In those early divorce years, I experienced a precusor as to what life is like when you loose someone that you loved. I realize that no matter how painful that time in my life felt, it will pale in comparison with the loss of the love of my life. I thought that if I felt like I almost didn’t survive the lonliness that divorce brought to me, how in the world am I going to survive living life when every part of me is bleeding from the tearing asunder what God put together? How will I be able to function effectively while in the throes of depression. Depression almost swallowed me whole after the painful loss of divorce.

At least, in divorce, I had lost that feeling of deep love that once lived but finally died. I mourned for the loss of the life that I had known and not the loss of the person who was in that life. If I grieved so hard over a marriage that was bad on its best day, how would I survive life without the love of the man who made the worst day wonderful? How will I be able to work and concentrate so as to earn a living and be competent and effective in whatever job I find?  How raw will my emotions become when death brings a multiplied suffering such as this? I don’t know? 

The cure for the loss of companionship is to find another to share your life. I don’t know if I want to find another someone to share my life again. I don’t know if my heart can trust someone that I just met or will I ever find the same trust as I found in my husband’s heart? I don’t know if I am enough of a gambler to risk finding a companion, a friend or even a lover. Can there really be another mate who was made just for me? I don’t know. My mind cannot conceive that being a reality. In all of my questioning and confusion at this moment, I definately know that I do not want to go through loosing another love by divorce or death. I don’t know if I could survive loosing another mate. Once in a lifetime is more than plenty.

My life with my husband has been full of great love, wonderful experiences and happy memories that only this depth of love can create. This life also had many emotional wounds, difficult trials with children and the atrocities brought about by mental illness. To repeat anyone of those experiences would be beyond my ability to cope. Sorting through the family dynamics alone is enough for me to say, ” No, Thank You.”

I don’t know if it is possible to love another person in the manner in which they deserve to be loved. How can I ever open my heart up again. How can I ever be totally commited to someone else? I doubt that I could ever rightly love another man again. It would not be fair to them. My husband would always be there.

All of this thinking takes me to a place of contemplation about my “Golden Years” as a widow. A widow that cannot rely on anyone else and one that must be self sufficient for the rest of her  life. I do not have a retirement or pension. All of those plans were lost in the bankruptcy of 2003. I will have to work and hopefully have a little income from Social Security for the rest of my life. Working will be much more than a means to an income and independence. It must be a tool that will cause me to not stay inside myself. It will be a necessity to pull me through the grief and mourning that surely follows such a devastating loss…

When I think of my family helping me, I know that my son and daughter in law will be very supportive, but I do not want to be the “third wheel” or the “Obligation”.  To put it succinctly, I do not want to be a burden or live life through my children and grandchildren. I still want to live my own God given and appointed life. Good or bad, I need my identity and self sufficiency. I need that more than consolation, pity or sympathy.

I think I need to stop here. If I stare too deeply into the reflection of these coming shadows, I become too fearful and the multitude of ” What If’s” overwhelm my senses. I close my eyes tightly so as to not see anymore. I am tired and I can’t see how all of this ends. I have endured this reflection to its limit and I do not care to peer into this pool of shadows any longer this evening. I reflected and I saw enough…

Cheating Update

About 5 hours after my last posting about my husband’s cheating on his liquid diet and possibly obstructing his PEG tube with a dehydrated onion, the irrigation seems to have been successful…It is draining quite well at present, but he hasn’t taken in as much today as he normally should.

He has been upset most of the day. I don’t think he is as upset with me as much as he is with himself and with the feeling of being cheated out of the last of life’s simple pleasures, i.e. food.

After we both calmed down, we sat and talked about the emotional impact with which this journey is presenting. We both feel more tension because his condition is failing. He seems so anxious about the tubes, both IV and PEG. Because he has watched the procedures performed, he thinks that he knows more than I do. In a few areas, he has more experience, but he doesn’t know the reasons why they are performed in the manner in which they are.

I understand the reasoning, I just have not had my hands on the equipment and so I am learning how to perform the procedures and by now, I am quite adapt with them. His level of confidence in me is growing, but again, the reasons for his anxiety seems much deeper.

The elderly know the fear of loosing control over their life. It is a terrible thing to loose independence. They know that they are physically unable or they are mentally impaired and cannot carry out the everyday duties that are required for self sufficiency. In my husband’s situation, the anxiety  loosing control over the things he has done all of his life. The things that make him the man that he is…

He is not able to drive because of the potent pain medication that he is taking…he has been a professional driver since he was 18 years old.

 We had a big argument over him driving the first day he came home from the hospital. He told me that he was going to fire up the Harley and take it for a drive. Of course, I said that he was absolutely not going to do anything such thing. He proceeded to tell me that he was. I then told him that I didn’t care that if he got on the bike and totally wrecked it and killed himself, but he could also take out an unsuspecting family and that is a different matter entirely. I told him that he could ride, but he had to be stronger than he was at that particular moment. He was so very weak and after realizing this, he relented.

Little by little, everything thing that has made him the unique person that he is seems to be slipping away. He has always loved food and he loves to cook for people. He loves having big dinners with family and friends in the house.

He is a very good cook; much better than I am. He truly loves it and better yet, he loves to eat. Since the bowel obstructions, his ability to enjoy cooking and eating has dwindled down to clear liquids. He feels deprived.

I try my best to not eat in front of him. I content myself with clear liquids as well. No one likes to eat alone and I will not make him feel deprived and isolated. I find times at night or when he is napping to sneak a sandwich or a few vegetables.

Of course, he is concerned that I continue to loose weight. My kids and step children voice their concern, but I know that I am still a few pounds over my BMI and I don’t feel badly, so I am not concerned. My daughter in law has threatened me if I do not take these mammoth vitamins that she brought me. I have faithfully taken them and I think that I am fairly healthy. But my face is showing the stress. My husband and I both look ill. I know that will change in time, but for now, I believe that I am doing well with all that I am living with.

The other things that my husband has loved and lost are those things associated with being a married man. Our ability to express our love for each other physically has been gone for a while now. This man is a vital and sensual man. He has always been a very loving man and we miss each other terribly…there is no substitue for this and the loss is felt deeply by both of us…The power of touch for the sick and infirm is so important. The art of massage and the laying on of hands have a healing effect in themselves, but the touch of love on a person’s body transcends any words or deeds for the expression of intimacy. That is lost to us and he and I grieve over the loss.

Other losses are with things that everyone take for granted…the ability to track income or pay bills, going about moving things or making simple repairs that most husbands find on their ” Honey Do List”. He has always been good to put things up or fix plumbing problems. I rarely had to ask twice for something to be fixed and most of the time, I never had to ask the first time.

As things are presently, it is quite a change for me. Now, I am responsible for all of the yard chores, taking out the trash, taking care of the maintenance and washing the vehicles. It is the small kindnesses that he always did for me that I miss. After my divorce, even before my divorce, I was self sufficient. I knew not to ask or wait to get things done around the house. When we married, I never asked him to do anything for me, I fixed it or I paid to have it fixed. It took 5 years of marriage before I finally allowed him to do things for me. My pain of loss is that I will be returning to  those empty days when no one cared to do them for me.

For 13 years, he and I worked side by side in business and at home, our time was spent doing things as a team. It didn’t matter if it was hanging wallpaper, or  helping work on the vehicles; whatever it was, we did it as one.

Each week, it seems that he is loosing something that defined him as a man.  He has always been a proud man and he has been a wonderful husband to me…. I may know how to do something, but I usually do not have the physical strength to do the task. 

I see the pain on his face as he watches me struggle with the jar of pickles. He knows that he isn’t able to open them for me. A look of shame creeps over his expression and it tears my heart out. It is heart wrenching for him to watch me and know that I will struggle with these simples tasks after he leaves and my heart breaks.  As I watch this proud, self taught, survivor of a man become a shell of himself, I mourn the loss for him and for myself.

We both suffer in this journey. He in his body and me in my heart….and both in our spirits…this is a slow path and a painful one.

Cheated is how we feel. We are too old to be young and too young to be old, but cancer is hastening our aging. He is leaving me and I  feel cheated to be left in my old age without a spouse who knew me when I was young and pretty…He feels cheated that he remembers and still sees me as I was that 17 years old and feels guilty to leave me at a time when a woman needs the man that has those memories. On days like today, the losses seems so unfair and our hearts hurt with injustice.

Cheated is a good word that sums up this day. We started out with a physical condition that began because he could not resist temptation and he cheated on his diet. At the end of the day, his condition is no worse, but the realization of being cheated is so acute that It cuts both ways into our souls.

The only justice that cheating has is for a miracle of healing to manifest so that he could cheat death…I can’t think of a better entity that deserves to be cheated….

Cheating…

It is dawn (around 5 AM) and we are up…normally, I fail to see many sunrises. I am a sunset person as most of you know…but we are awake and it isn’t by choice.

I have just spent the last few hours trying to clear my husband’s PEG tube. It is the tube that was surgically placed in the stomach so that he would not have to have the NG tube down his nose all of the time. And, right now, I am scared and mad as hell.

It seems that my husband added dehydrated onions to his clear diet last evening. That means that these bits of onions swell up and return to a solid piece when they are in liquid….and at 4:30 AM, he woke me up to tell me that the PEG tube isn’t draining and he feels a lot of pressure.

I didn’t know that he “doctored” his soup. I think that he did it when he knew that I wasn’t around. I know that he wants food and he feels so deprived because he can’t eat anything solid. Clear liquids leave a lot to be desired if you have been someone who loved to eat. I can understand that in my head, but cheating like this can be disastrous and I am angry.

I irrigated the tubing and it was definitely plugged with something. When I saw the onion bits return through the tube, my husband confessed his crime. That only made me angrier. I told him that if this thing plugs, there will be a pain that makes all of the other pains look like a walk in the park. I know that frightened him, but I also know that what I said is true…and I know all that was done to get this tube in place and it is all undone over an ONION….

I feel so guilty when I get upset with him. I feel so bad because I know that he feels that this cancer is robbing him of everything that he loves. But, I am still his wife and his nurse and I am afraid for him and the pain that he has caused himself over the sake of “flavor”.

In some ways, ignorance is bliss, but this time, ignorance has the potential to harm him so. It isn’t because he didn’t know in his head that eating things would cause problems. He was instructed. I have instructed him and told him what would happen. It just isn’t real to him until now. Now, may be too late to save the PEG tube.

If this tube fails, he will have to have his NG tube down his nose and I don’t know if they can remove it again. The other risk is that the tumors have grown and closed off the way to the surface of the abdomen and in that case, there is no other options….but if it is an onion problem, then he will have to bear the guilt of hurting himself and me…

I can see him outside walking in the morning mist. I know that my words have hurt him and they also scare him…I know that he is praying and asking God’s forgiveness. I also know that he is trying to walk around to stimulate movement in the digestive track.

Cheating seems so minor at the time. It was too great of a temptation to pass up. But, as in all things, cheating costs a greater price than what is discerned at the time. Ask Eve.

I know that I am thinking of myself, too. I know that if this tube fails, that his care escalates to a higher level. It isn’t that I can’t care for him at that level, it is just more time and more work for me. It is a selfish point of view, but it goes to my desire to keep things at a minimum as along as possible.

We would be at this point at a later date. The tumors can grow and block the tube’s way to the surface of the abdomen and we would have to go to the NG tube to decompress the bowel, but we didn’t have to go there just yet. We could have more time that is unencumbered by all of the tubes and equipment. We could keep things as normal as possible for a little longer.

Now, his grandson, who is coming here for Father’s day will be afraid of him. That tears at his heart.

I don’t know what to do. I have done all that the hospice nurse would do for him…I irrigated the tube with Coke so that the carbonation and the acid would dissolve as much as possible. I hope that he doesn’t become nauseated. That is a sure sign that the PEG tube is closed and will not function….

Time will tell. I can’t go back to sleep now. I will have to keep watch and make sure that I can get to the doctor quickly. I am praying that he will not have to pay the price for cheating. I am praying that God will forgive my anger and my selfishness. But most of all, I am praying that the tube will become unplugged and this worry and frustration will lift off of me and my husband…