Darkest Before The Dawn…

astronightIf there is any truth to this old adage, then the faint rays of dawn should be on the horizon. The past few weeks have been terribly dark for me. Even in my dreams, troubling imagines and circumstances are indications that I am not coping with my life.

Several nights ago, I dreamed that my family doctor told me that the results of my tests were not good and that I, too, would be leaving this earthly life. My response was not one of fear or dread, but rather, I asked if the doctor could orchestrate my leaving to be at the same time as Dan’s.

In light of my families’ tendency to have prophetic dreams, at first, I was alarmed. But, on further reflection, I realized that my inner person was telling me that my desire to live this life was not strong and that I needed to be proactive about my physical and mental health.

When I began to contemplate all that was in the dream, I recalled the statistics regarding caregivers and depression. Depression is very common in those who have loved and cared for someone until they died. In fact, I don’t know how you can not become depressed as you watch someone who has become a part of you suffer and loose their battle to live.

The article that I read noted that caregivers and spouses of the terminally ill often develop terminal illnesses or develop chronic conditions frequently after the death of their loved one.

I became aware of this while I was caring for Dan. and I began a routine of  walking regularly. I knew that physical exercise helps to balance anxiety of the mind and it releases helpful hormones to the brain.

After Dan died, I would walk Mozie twice a day. Once before I left for work and then on my arrival home. I kept to this routine until on one of these walks, one of my cats was hit by a passing car.

I  realized that this accidental death could have been me or Mozie. Most times, it was dark when I would walk. Even though I had a flashlight with me, I know that I was not easily seen by the motorist. I decided that it was too risky to continue to walk the dog in the dark and I stopped.

Then the cold weather hit. jack-frost-nipping-at-your-nose1

It seems that I have become quite a wimp when it comes to cold weather. I really didn’t want to walk in the cold. It seemed that it took  hours for me to feel my extremities again, so I talked myself out of walking in the cold. 

Now, I am out of the habit and I find all manner of excuses to not do what I know will help my mental and physical health. Inertia has definitely set in. The longer inertia is allowed to stay, the more resistence there is to any kind of movement.

There is one activity that I have not quit doing. It is somewhat  an unconventional  but I believe that it has helped me both physically and emotionally deal with grief.  I attend Sweat Lodges.

I can’t remember if I posted about this on the blog, but attending sweat lodge was a major part of Dan’s inner healing. It put him  in touch with his Native American roots.

Our family doctor suggested that Dan to this and the first sweat that Dan attended, he was not able to complete all of the rounds. I took his place as  his proxy.

It was not an easy sweat because this was the first sweat of the new season and the round that expressed thanksgiving for the new willow saplings for the lodge was quite intense. sweat-lodgeIt was also very warm outside, so this round was not easy for the seasoned veteran of attendants. But, for Dan’s sake, there was nothing that could have prevented me from enduring the heat. After that experience, I knew that I could endure the sweat and I seemed to find a peace during the ceremony.

Since the time of our first sweat, our family doctor completed his study with an elder and he is now able to hold sweats. The elder under which the doctor studied  has taken the elements of the sweat and modified the ceremony to be less specific to the tribe and more universal. Everyone is accepted. The is no restriction or  requirements to observe. You are asked to pray.

After Dan died, our doctor invited me to one of his sweats. I was thankful for the invitation. As I was thinking about attending a sweat on my own, I remembered what my friend, the hospice chaplain, told me about the physical composition of the tears of grief.

She explained that I tears of grief are of a different chemical composistion. She explained that the tears carry away the residue that grief leaves behind in the body.  She wanted to explain this to me because shecould sense that I was refusing to cry. She wanted me to know that tears of grief were made to be released and should I not do this, I was holding within myself toxins that needed to be cleaned from my body.

As I recalled her explaination for tears, I reasoned that the sweat would further help my body by release the toxins that stress and grief manufactured. I also was needing a place where I could moan, lament and cry without worrying about others trying to “fix” me. I need autonomy.

In the hallowed darkness inside the lodge, I am free to allow my grief and pain flow from me. In the midst of  endless tears and drops of sweat, I can feel the toxins and residue of this kind of living are wash from me. In many respects, I as I did when I was baptized.

When the sweat is completed, I feel refreshed and regenerated. Physically, I feel lighter and emotionally, I feel peace. For the short time afterwards, I feel  happiness return and I also enjoy the feast and fellowship that follows the sweat. I feel clean and restored.

For a time after the sweat, I have increased energy and I feel like doing things that I have recently lost interest. The effects of the sweat can last a few weeks before I feel the strain of bereavement return. Then, I begin counting the days until the next sweat.

I attended a sweat this past weekend. Instead of the effects lasting a few weeks, I was returning to the strain after a few short days. I have a couple of months before I can attend the next one and my dream was telling me that I  didn’t have the luxuary of time. I need to counteract this depression, now. I called and made an appointment with my family doctor.

The dream has become the catalyst for me to face  what this pain is costing me.  For some time, now, I knew that I have several symptoms of depression. The one that has plagued me the most is  lack of sleep.

Each night, I fall asleep on the couch around 8:30 in the evening and wake up around 10:30 PM. I know that I must get back to sleep because my alarm clock is set for 3:30 AM. I have to be at the client’s house by 5:30 AM. If I can’t get back to sleep, I will be awake about 20 hours. After a few days of this, I am totally exhausted.

This cycle of sleep deprivation has caused my immune system to be compromised and I can fall victim to every flu virus that comes along.  I cannot afford to miss work and I cannot afford to become chronically ill.

I also noted that I seem to have an increase for minor accidents. Lately, I have pulled muscles in my ribs and arms. I have sprained my ankle and I have fallen more than I usually do. Normally, I don’t find myself so clumsy. But, I know that this kind of thing goes along with depression. Now that I live alone, falling and spraining things are more of a concern. I know that I can have an accident and no one will know until I am able to get to a phone or have another way of communciation. It becomes more of a concern.

Depression can be well disguised when you keep yourself too busy to think. I think that the dream caused me to acknowledge that I need to be wiser than my pride and accept that I need help so as to not be overtaken by this kind of dark of shadow.

After seeing my doctor on Friday, I am to start on an anti depressant this weekend. As I discussed this with him, I expressed that I do not want medication to become a long term kind of treatment. I told him that I do not want something that will keep me from grieving, but rather, I need this medication to be a tool and I want to take this medicine for 6 months to a year period at most.

I won’t be relying on medication alone for this problem. I will be doing the  things that I know will help combat this disorder. I will return to walking for exercise andI will try to eat better. I will also take supplements to help build my immune system.

I also contacted my hospice chaplain friend about a bereavement group that meets at times when I can attend. If there is no group, then I will go back to meeting with her for counseling. I know that this must be a balanced plan.

One of the other tools that has helped me has been writing this blog. You may have noticed that I do not post as often as I have in the past and that I do not respond to comments like I once did. Writing has been my “saving grace”. Now, it is not as fluid. That was also one of my warning signs. Hopefully, the blog will see more attention.

So, now, I begin the uphill climb, up this rugged face of a mountain called depression, toward an emotional recovery. I am not walking an unknown path. Many have struggled with this pain as they try to find life after the death of someone they loved deeply. glorious-sunriseThere is no reason to stay in this dark moment.

I will meet a New Dawn. To accomplish this,  I will need every tool to be successful in this quest.

If it is true that it is darkest before the dawn, then know that, at this moment,  I cannot see my hand in front of my face. But  know this, I shall see the light of a new day dawning…Dan told me that I cannot leave here as yet. I must stay….

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Seeing Beyond The Veil…Part I

four-generation1There are so many mysteries that we can never know while confined to this existence. I have always been fascinated by mysteries and now I have one that has had my attention for the past few days.

As I have written in past posts, my husband’s mother has the diagnosis of Alzheimer’s. I have come to believe that everyone who has memory loss or what was once called “hardening of the arteries” or ” senile dementia” is now given the Alzheimer’s diagnosis….truth is, this condition can only be diagnosed and confirmed by autopsy. I personally believe that it is a pharmaceutical ploy to get people to want their doctors to give them the new drugs in the hope that something can stop the progression of this condition.

I, personally, do not believe that these drugs do anything other than cause terrible side effects for those who suffer from loosing their memory and identity. Both of my “in-laws” have taken the drugs and both have not improved. They also suffered from side effects that compounded their quality of life.

It was last Christmas that my husband and I traveled the 2 hour trip because his mother’s dementia worsened and it seemed a sure bet that she was leaving the hospital and going into a nursing home. On Christmas eve afternoon, Mom’s mind cleared and she knew her surroundings in the present. This avoided the nursing home entry and we all rejoiced to “have her back”. She was released from the hospital that day.

My husband and I were at his parent’s home when she was returned. As she came through the door, she seemed to relapse into the fog of confusion and began to talk about her mother, who has been gone since 1967, and a sister who is in a nursing home in Chicago.

After witnessing this, my husband took out of the house for a walk.  I knew that he went to walk through the tears that had welled up into his eyes. He loved his mother and he just couldn’t bear to see her like this.

This episode didn’t last too long and by the late afternoon, she knew where she was and she was back into the present. This was a Christmas gift that we hoped would last, but it slipped as the days and months progressed.

autumn-mystery1From that time to this, Mom has walked farther down the road of dementia and so has Dad. It is a surreal world that they live in. Many things are a sad comedic situation to watch. Yet, they seem to find contentment that is derived from each other’s presence.

Their journey only deepens into  obscurity. When my husband died, Mom had moments where she could grasp what had happened, but they were only fleeting. When my aunt talked to her after the service, she mentioned me to Mom. She replied, “I don’t believe I know her.” My aunt told her that I was her son’s wife then the conversation turned to something else.  My aunt knew that there was not much more she could say or relate to Mom.

I called a few times after my husband’s passing. It was clear that neither Mom or Dad knew who I was and I tapered off contact. It caused pain upon pain for me and there was nothing that I could do to enrich the quality of their lives.

This past Sunday, Mom fell in the kitchen and broke her leg. The break was severe enough that a total hip replacement was necessary. The effects of anaesthesia on the brains of the demented is devastating. They seems to loose so much ground in the land of reality. So it was with her.

I did not know about her fall, but Tuesday evening, I called my husband’s brother and asked, “What is wrong.” He told me about the situation and that this was definitely the time that Mom would be going into the nursing home. He told me the details and then we said, “Goodbye.”

During the night, I dreamed of my husband. The events in the dream were sketchy, but I definitely knew it was him. It was a dream of him. I was relieved. I needed to dream of him.

When I woke up on Wednesday, I recalled the dream and I felt a need to represent my husband at this moment in the life of his mother. I knew that Dan would be there if he was able and I also knew that he would be there even if he wasn’t able. mom-russell-and-her-new-wig

I called my brother in law and said that I knew the kind of pain that comes when you have to place a parent into a nursing home. I explained how heart wrenching it was on my sister, but she and I made the decision together. We also went to the nursing home and signed the papers together. I told him that this is easier if you don’t have to do it alone. I told him that I would come up and be with him, I would represent his brother and we would walk this event together.  His brother said, with relief in his voice, “Thank you.”

So, on Friday, I drove the 2 hour trip and met my brother in law. He showed me all of the paperwork and told me of Mom’s present condition. He said that she didn’t have any moments of lucidity and that Dad had stayed the night at the hospital because she was so frightened. She is a “sundowner”

That is a term used in the nusring industry to describe those whose dementia worsens at sundown. I have witnessed some to be lucid throughout the day only to slip into the fog of dementia as sunset approached. It is a common effect of the disease.

The doctor said that Mom would be released over this weekend so I wanted to go and see the facility.  While there, I was able to talk to the Director of Nursing. I asked about the training for the nursing assistants regarding a fresh post op hip replacement. I discussed the concern over Mom popping the hip replacement out.  This is common if a patient crosses their legs or if they fail to have proper alignment while they are in bed. I asked if there was enough staff to cover this fresh surgery. I also asked her how this facility was going to deal with the complication that Mom’s dementia presented.

Most dementia patients do not know that they have a broken leg or a condition that prevents them from walking. So, the patient will try to get up and walk to only fall again and exacerbate the original injury. This can lead to a second surgery which, in turn, causes more deterioration of the mental condition.

I asked her how close Mom’s room was to the nursing station and what was their care plan regarding prevention of pressure sores. I finished with the comment that this case would be “a squeaky wheel”. The DON smiled. She understood what I was saying.

“The squeaky wheel gets the grease” is an old saying used in the nursing home industry to categorize patients whose families are always present and have no qualms about complaining about the care that their loved one receives. I purposely wanted her to know that this family and their friends would be coming in to see Mom at all hours of the day and night. I believe that my comment was understood as a forewarning from the family to the facility.

I found that the best way to ensure good care is to let the facility know that we would have no qualms about insisting on good care. Even though I cannot be there often, my husband’s daughter will fill this void. She worked in a nursing facility in her town and she has training in dementia. Ensuring Mom’s care  was another purpose of my 10 hour trip.

After the meeting, I left my brother in law and went to the hospital to see Mom.  Her sister was sitting beside her bed calming her fretfulness. I entered her room expecting her to not know me.

“Hi, Mom.”, I said. I told her my name. The first thing she said was, “Dan is here. I have seen him.” I thought nothing of this. Then she said, “And so is your brother.” She then turned to her sister and asked, “Is the funeral over?”

By that comment, I was convinced that she knew who I was and how I was connected. But what caused me to pause and think was her comment that she saw my brother.

The aunt thought nothing of what she said because the aunt was unaware that Mom knew my brother. Her memory of him would have been from when they lived down here and pastored my church.

My brother was my husband’s employer. My brother was the one who taught my husband how to drive a semi and by doing that, my husband always had employment.

Dan spent a lot of time at my brother’s house. They both loved cars and,  when my brother bought a 1970 purple ‘Cuda that had the highest performing engine that Mo Power ever produced, Dan was the first person that he showed his new car to. That was an honor. My husband and my brother were so very much alike.

For Mom to recognize my brother in her room, it meant that he had to look like he did in 1970…

My brother has been dead for close to 20 years When I entered her room, she saw the two men that I loved most. Both are dead. In her dementia, could she be seeing “behind the veil” that is between this world and the next?

” 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…

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…

 

Advocate

So much has happened. My husband’s hospital stay, holidays, loss of Internet service, catastrophic weather and just the everyday routine of things…all of these things seem to bear down on us and cancer marches on without taking note of anything else but its own agenda.

There have been some wonderful victories that are offset by set backs and the growing realization that his condition has stepped into a new level of deterioration. But, we will take the small victories that keep hope alive.

He is happy to be home and I am relieved to have the support of other nurses with the big relief of being able to reach a doctor on weekends. It has been a huge adjustment to hospice care but we are making the changes with more comfort now that we are in our second week.

The last hospital stay was more than enough to convince both of us that we didn’t want to have to continue going there for intervention for his bowel blockages…The ER visit was the clincher.

In the past, we have always followed the standard protocal which consists of letting him off at the Patient Entrance, I park the vehicle, I rush back to wheel him into the ER Registration area, give the clerk the information they need and then we wait.

It depends on how full the waiting area is, but we usually have to wait from 15 to 30 minutes before the triage nurse takes us back and they go through standard question regarding his history and we explain the complicated and difficult history.

Finally, after about 30 to 45 minutes, my husband goes back to a room and we wait a little longer for the nurse to come in and about another 30 minutes, the doctor comes into the room. An average, from the time we make it to the Patient Entrance to recieving medication for pain, can be 45 minutes to an hour.

All things are subject to what is happening in the ER. If there is a car accident or a small child that is very ill, it can be longer. We are at the mercy of circumstance and other’s illnesses. Cancer victims usually do not rate a high priority with triage. The assumption is that the patient is dying.

By the time my husband decides that he cannot take the pain any longer, he is well past waiting this kind of time to be seen in the ER. We have been through this so many times that we try to consider the waiting factor when we decide to go in to the ER. This last time, we didn’t have that kind of time.

This last obstruction seem to come on him quickly and the pain was at its highest level ever, so the thought of going through the ER protocal was weighing heavily on my mind as I drove into the hospital.

I decided that he couldn’t wait in line as usual. I decided to drive into the ambulance bay to get him into the ER area directly. In the past at this hospital ( I worked here in the past) , this was done especially for  more severely injured patients coming by private cars. The wheel chairs were staged between the outer doors and the double inner doors. I made up my mind that I would go in and get a wheel chair and wheel him directly into the ER. I would then go to the registration desk and get the paper work done.

Registration wasn’t going to be an ordeal because I was going to request that the clerk pull his records from his last hospitalization just 10 days ago. Nothing had changed and it was the same as before. That was the plan.

When I pulled our diesel pick up truck into the ambulance bay, I got out of the truck and went to the outside doors only to find that the doors didn’t open when I stood in front of them.

Thankfully, a maintanence man was standing outside the doors and offered to let me in. That was my first indication that a major change had taken place. I thanked the maintanence man and went into the area where the wheel chairs normally were staged…no wheel chairs.

I entered the inner double doors and walked toward the nurses station. A blond nurse met me and I said that I needed a wheel chair. She replied that they didn’t have any wheel chairs back here.

I must have given her a look that conveyed that she must be a few bricks short of a full load.  I repeated that I needed a wheel chair for my husband.

She said that I needed to follow protocal and go to the opposite side of the hospital. She continued on and said that I needed to go through Patient Entrance. Before she went through the whole speel, I said that I understood, but I needed a wheel chair for my husband now. Again, she reiterated that I needed to go throug protocal and she proceded to go through all the details.

I interrupted her and said that I understood the protocal, but my husband couldn’t walk,  he was in severe pain and I needed a wheel chair. She said that a bed may not be available right now and he would have to go through triage and be evaluated. By this time, I was thinking that if she said the word, ” Protocal ” one more time that I was going to tell her to put this protocal ” where the sun don’t shine”, but instead, I held my composure.

I happened to see the ER doctor that treated my husband the last 3 times he has been admitted through ER. I said to “Nurse Protocal” that this physician had treated my husband and he knew my husband’s condition. I totally ignored her and I began speaking to the doctor directly by telling him that my husband was completely blocked and in terrible pain.  A male nurse who attended my husband on his last visits recognized me and he immediately went to the front of the building and retrieved a wheel chair.

As the doctor and I were continuing our conversation, “Nurse Protocal” interjected a bed may not be available. I interrupted her and said that my husband needed his port accessed and this procedure could be done sitting in a wheel chair. I then began telling her what kind of Huber needle he needed and all of the other things that he received when he was in this situation. She turned on her heels and allowed the doctor and I to finish our conversation.

When the male nurse returned with a wheel chair, I followed him out to the truck to help my husband. As the male nurse and I assisted my husband out of the truck and into the wheel chair, I seemed to slip into my old patterns and told him my husband’s vital, his allergies and his last pain medication. I stated that I would move the vehicle so as to not block the ambulance bay and I would register my husband up front.

By the time that I registered my husband and got back to the ER area, my husband was in a room, his records from the early May visit were there and the orders were being used to get things going. my husband’s port had been accessed and he was receiving his pain medication.

Finally, the pressure was off and I was breathing again. My husband was out of his level 10 pain, he had stopped vomiting and was more comfortable…..

It was a long wait for a room on the usual hospital floor. We were in the ER from 9 PM to 4 AM. During this long wait, Nurse Protocal refused to look in my direction, she totally ignored my husband’s call light or sent someone else into his room when he needed assistance.  You could have frozen ice on her compassion. It was at that moment when I decided that my husband and I didn’t need this kind of hassle any longer. This episode was it….we could manage at home if I could get my hands on the things and medicines that he needed, we were never going through another night like this again.

Even though my husband’s emergency was not of the caliber of “life or death”, it was just as valid of an emergency due to the pain level. I know how triage works and because my husband is a terminal cancer victim, he would have been pushed to the back of the line had there been a more “immediate” emergency enter into the ER. This is not acceptible.

I am my husband’s advocate. I am his voice when he is racked with pain.  Many times, patients such as he can be overlooked because of the cancer.

No one admits to this kind of thing happening, but it does. After this incident, I decided that we would find a better way to deal with this kind of situation. If ER was our only option, I decided that I would make a formal complaint against the ” Protocol” and Nurse Protocal.

That incident was our jumping off point on this journey with home health care/hospice. It was time to avoid this kind of stress and the ends to the means would be a this new route. Not because my husband is in the final stages toward death, but because of this lack of understanding of cancer patients in an ER setting.

I sincerely hope that others in our situation never have to experience those few minutes where I was insisting, in plain English, that I needed a wheel chair. I fully realized that I am my husband’s advocate. I am his voice when others rely on “protocal” over care. When he is at the mercy of an insitution that abides by a chain of command, much like the military, I am the one who will have to “break ranks” and insist that he gets what he needs and not rely on the medical professionals (excluding Nurse Protocal, of course).

It is my voice that has to be heard above the routine hospital roar. Had my request for a wheel chair and immediate care not been heard, I was prepared to enact the scene out of the movie, Terms of Endearment, when Shirley McClaine circled the nurses station yelling at the top of her lungs for her daughter’s pain medication to be given ….it ismy job to get whatever attention my husband needs when he is in crippling pain.For me, in that scenario, there is no one else’s loved one, but mine in that hospital ER. At that moment in time, to me, he was the only patient in the ER.

That is not my usual perspective when we go into healthcare institutions, but it became my position once it was clear that he was going to be overlooked. I can not allow hospital protocal, processes or procedures to take precident over his pain. It becomes their working procedures vs my advocacy for my husband and I will not back down.

For those who are walking in my shoes on this journey of caring for a loved one with cancer, don’t be shy. Be as courteous as you can be (because they will call Security if you become too aggressive), but stand up, be counted for your love one and when all else fails, take your loved one out of that place, call 911 and get them into an ambulance just outside of the hospital ambulance bay if necessary, but by any means, get that cancer victim seen….and out of pain.

Well, that is enough of that adventure. There are others to follow…but this was the beginning of finding our way back home. And with home health and hospice we will never have to go through ER again….

I don’t regret anything I said or anything that I did that night. I will do it again and again and again if I have to….I am his Advocate….

A Painful Conversation Part 2

It is quiet here for the first time in 2 days. Everything seems like a blur since arriving home. We have had family, friends, nurses and, today, the hospice doctor in and out of the house from the moment of arriving home until a few hours ago. I feel fortunate to find these few quiet moments to sit here in front of the computer.

Yesterday, was tough because of my unfamiliarity with portable IV pumps, their connections, the connections to drain tubes and wrangling all of the lines that are feeding into his port. Whew…it seems that I have been walking and on my feet for 24 hours straight.

Yesterday, it seemed that if something could go wrong, it went wrong. At least 3 times, the connectors from the PEG tube to the drainage bag came apart allowing all of the contents to soak the recliner, the wool rug or the bed. It isn’t anyone’s fault but the designers of the equipment. The equipment must have tested well on everyone but us.

When this would happen, my husband would be embarrassed and become irritated with himself, with me, the equipment and anyone or anything of which he could think…I can’t blame him. It was frustrating, but there is no way for a softer plastic to stay attached to a connecting end that is made of smooth harder plastic.

Today, when it came undone again, I said that these episodes had to come to an end, so I got my trusty roll of silk tape and began securing the ends. I even placed a paper towel over the area so that we may have a little bit of warning. If we notice that the paper is getting moist, we have enough time to discover the failure and prevent another soaking…So far, so good.

The doctor visited today and asked what the purpose was for all of this “bandaging” of the tubing and I said that the tubing was staying together one way or another. He smiled. It is just another “fix” with tape. At least it isn’t duct tape. Not this time, at least.

It was a hard day, yesterday, from the leaking of the drainage tubes to the weird curve balls that the IVs would through us. Most of the difficulty was the fact that the IV connections that are used in home health care are different from those used in the hospital. After a few hurried phone calls and simple explainations, I was up to speed. Then there are the pumps…

I am so “old school”. My experience pertains to pre pump days. I know how to time an IV to run at the ordered rate with a watch. Of course, the problem with that is some people have positional placement of the needle in the vein and the fluids can run in faster than desired. “Threading” the line through a small pump with a computer chip that beeps at you for any little thing is “new” to me, but these pumps are old technology to those who are in this field, so I feel like a dinosaur. The only hope for me to show my accomplishment is for the power to fail; I don’t need to prove myself.

There was so much to absorb when we first came home that a lot of the instructions didn’t stick when it came to how to program the pumps, so I either called before I did anything or I waited until the nurse came later today….

Today was much better and both my husband and I felt more at ease especially after our painful conversation. In the early afternoon, my husband was fussing over the IV tubing, his drainage bag, the pumps and how I was mixing the medication for the next bag of fluids. There wasn’t anything wrong; he was being picky. His hypervigilence was getting on my last nerve. Our usual easy going way of relating was being strained to say the least until I finally asked him if all of these concerns about the medication were his job.

He answered no. I said for him to let me do what I need to do and leave all of the tubes alone. He apologized and I apologized to him. Then it struck me that he must be worrying about something in particular, but he doesn’t want to come out with it.

So, I asked him what was bothering him. He asked me if I remembered the night that my favorite aunt  died. We had spent some time with my aunt, uncle and cousins at the end of her battle with colon cancer and we were present the night that she passed away…

Of course, I answered that I did. He asked me if I realized that my aunt was “helped” to pass on. I know that I gave him one of my, “What are you talking about” looks. I asked specifically what he was referring to. He explained that he believed that someone may have given my aunt too much pain medication for the purpose of helping her pass on. He then asked, “You wouldn’t hurt me like that, would you?”

“Good God in Heaven, NO!!!…I would never do anything to hurt you, nor will I allow anyone else to hurt you.” My heart broke. I realized that what I mistook for hypervigilence and doubt in my ability to do the IV medication was really an unspoken and misconceived idea that my aunt died by someone intentionally overmedicating her.

I tried to explain that I didn’t know that anyone did anything to “help” my aunt pass on. I explained that I  cared for patients who passed on after receiving pain medication because the bodyfound relief and in that relief, they found release, but I couldn’t say that I knew anyone who was euthenized.

I asked him how long he has had this fear in the back of his mind and why did he not talk to me about this sooner. He said that this was on his mind since things changed from home health care to hospice. Secretly, he has feared that a form of gentle euthenasia was another name of hospice…

How my heart ached!!! This is a terrible fear to struggle with and it broke my heart that he didn’t feel comfortable enough to plainly speak of it, but now that he had, we could talk openly about this fear and the situation. I told him that I would never knowingly do anything that would harm him or cause him to leave this earth before God says it is time. I also told him that I would never allow anyone to do anything like that to him, either. I assured him that I was his advocate and it is my responsibility to do as he wanted. I reminded him that no one could get to him without coming through me first. No one will ever get passed me, not now, not ever.

As he relaxed in his recliner, he seemed as if a heavy load had been lifted. For the first time since coming home,  he was at peace. Now, it was my turn to feel tense. Ever since the conversation, I have been tormented by his fear and how much this has troubled him.

I knew that he had questions about hospice, but I truly thought that I answered them adequately. How did I fail to comfort him? Was it my own needs that I was thinking of? I know that hospice is the only way that I could get him home and out of those four walls of the hospital room. I know that it is the only way that he will not have to go back into the hospital and it is the only way to avoid another ER drama..(I will write about that drama tomorrow because this post is too long already)

I did not just say words to satisfy his fears. I meant every word that I said to him. I will not allow anyone in the health care profession or family to harm him. He is in charge of his life and God is in charge of his days. I want him to feel safe and secure here at home and with hospice.

Maybe tomorrow I will recover from the emotional stress that this conversation brought me, but as for as this night, I will have to find a way to calm myself down. I don’t want him to see me cry. He must not see me cry. Should he, he will ask why I am crying. How do I tell him that I am crying for his fear, for his vulnerability, for the hours he has agonized over someone hurting him….

I can’t seem to stop crying tonight. Maybe, I just need to cry over the painful conversation and everything else that seems to keep going wrong. No, I don’t need to cry now. Like my mom said, “Crying never changed anything, so why do it?”

You got to love that good ole stoic German stock, huh???

Update, Day 7

I don’t have much time, but I wanted to update everyone on my husband’s condition. I will try to write more about a few things in detail later, but this is where things stand as of today.

Since December of last year, we have gone for consultations about my husband having a “PEG” tube placed in his stomach. This tube is used for several different purposes, but for my husband’s condition, it is to relieve pressure when the bowel obstructs. This tube eliminates the need for him to have a NasoGastric Tube when these episodes occur. It also can be utilized for other things, i.e. medications, feeding, etc.

In December, we saw a specialist and he said that the tumors had bonded to the abdominal wall and there is no place to “anchor” it. We talked to my husband’s original surgeon at IU Med and he said the same thing.

In the past few months, a new doctor who specializes in bariatric surgery came to our local hospital. On my husband’s admission, he consulted on my husband’s case and echoed the same sentiments. Then something happened.

On the third day of my husband’s hospital stay, my cousin, the one who comes and sits all night with my husband and prays, asked me to do him a favor. He asked me to ask our family doctor to have this new doctor to reconsider doing this procedure. So, I left a note on with my husband’s chart for our family doctor.

One of the concerns about this tube placement was that this may allow the cancer tumors to come to the surface and grow on the outside of the abdomen. I stated in my request that we were willing to take this risk.

Frankly, I would not have minded because I have a particular treatment using collaided silver (it is the main component in a powerful ointment used in severe burns) that I would apply to anything that appeared outside and on the surface. I also asked the family doctor to understand that we know that this surgeon may refuse again, but you never know until you ask, and ask again.

I knew that my cousin and his wife specifically felt led to ask this of me. I also knew that they had specifically prayed for the surgeon to consider and reconsider. This was a very specific prayer.

To our “surprise”, on the second consult, the surgeon said that he thought there might be a chance to do this if the procedure was done in conjunction with a real time CT Scan….it was a slight chance, but as in the prayer, he was willing to consider and reconsider.

This particular tube would eliminate my husband ever having another NG tube down his nose and he would not have to go into the hospital when this problem occurred again.

Yesterday, at 11 AM, the procedure was done. The surgeon got the PEG tube placed….my husband is without the NG tube and the tube is functioning wonderfully. I don’t know how to express what a wonderful thing this is.

My husband is going to be able to come home without a NG tube. He will have other tubes, but he will not have to suffer with something down his nose for the rest of is life….

I have more to write about the “small miracles” that I saw in answer to prayers that I know were prayed, but I don’t have time to write about them now…

I suppose the moral of this story is this: We were told “No” 3 times by 3 different doctors and the last one said “No” first. But, with persistence and prayer, something that was impossible or too risky medically, was accomplished.

For those who have cancer, please take a note. No matter how many “No’s”, don’t give up on the first one. Ask, ask, and ask again.

As I look back on two of the most crucial things that were important occurrences for my husband’s survival and for his comfort, the debuking surgery and this tube were accomplished by being persistent in the research and in the asking. Both these life saving and quality of life procedures were first denied or they were said to be impossible…but they were found and they were accomplished because we wouldn’t accept the “No’s”.

Don’t take “No” for an answer if you feel in your heart that there must be a way or that there must be a procedure that is key to your quality of life. I is worth the aggravation to yourself and to the health care provider for you to persevere.

I can’t express to you enough how persistence, dogged determination as well as, intuition and prayer are so important in treating this thing called “Cancer”.

Listen to what your doctor says and also listen to what your body and “gut” tells you. You will never regret preserving and asking to for the doctors to consider and to reconsider when it comes to things that you feel are so important…

Well, enough of that. My husband is possibly coming home today. He will come home on home health and not hospice…I will write more about the why and the what that are involved about these two things, but for now, I must get ready to leave.

My heartfelt thanks to all of you who pray for my husband and I. My heart is overwhelmed by your support, your “hugs”, and your willingness to walk this journey with us…

This blog and the people who meet me here have become one of the greatest comforts and encouragements. The most surprising part of it is that when I began this blog, I thought that I would be writing words and flinging them out in this cyber space. I never imagined the support group and they love that I find here.

I ask with all my heart for God to Bless each one of you as you have deeply blessed my husband and me….

 

In the Shadow of Worry and Fear

I went to a Bible study with my cousin last night. This study is at the church that my cousin attends. I knew several ladies from high school and my cousin is an elder at the church. I accepted the invitation because it would be great to get out of the house and it would mean that I would get to spend time with my cousin.

Imagine my surprise when I learned that the study was going to be about worry and stress. These are two of my daily living companions and I seem to know them so well. By nature, women are the ones who worry more than men. They worry about eveyone but themselves most of the time. And they not only have their worries, but they are worried about whatever you are worried about….what wonderful creatures women are….we worry because we care.

I sat quietly most of the time watching the faces of these women. They were in differnet stages of life, but the majority are in my age group. The kids are grown and we are left with our mates in a house that was once full. I wondered if they were ready for what I brought with me. Was this a group that would handle the shadow of life that I was carrying with me.

It seemed that there was a lady who was waiting for me to come. Her husband was just diagnosed with a rare cancer. I could see the fear in her eyes and I felt so sorry for her because she and her husband are in those first stages of this journey.

The beginning is where everyday is a whirlwind. Trying to keep up with the tests and the preps for the different tests. Keeping up with all of the paper work (I am a lousy secretary. I didn’t take the papers out of the bag. When the bag got full, I just got another bag. I don’t recoment this kind of record keeping) It is that part of the journey where you learn if there are options in treatment.  Being bombarded by all of the facts that are given to you, you feel overwhelmed. You are unable to keep up with all that the medical professionals are spewing out of their mouth. They say things so fast; they must go on down the hall and see the rest of the patients that are waiting in those lonely cubicles called treatment rooms. It is in this stage that you feel like your feet aren’t touching the ground and you are looking for the door that gets you out of this bad dream. Then you realize that you aren’t asleep. This is real.

I suppose that she and her hubby are grateful that they have a firm diagnosis now. They had traveled all over to find someone who could tell them what was wrong.  Now they know. As strange as it sounds, the worst part is not knowing what is wrong.It feels so upside down when you are relieved to be told that it is cancer. But, you do feel relieved.

This lady’s husband has cancer is in the salivary gland. Cancers in the ENT/Ears, nose and throat are very hard to treat. The surgeries are so disfiguring and the chemo is severe. This is what they have to look forward to in the days ahead. But, it is better to know than continue to live with the unknown.

That was one of the major fears that the study talked about; fear of the unknown. That fear is so primevil. Of course, you fear what you don’t know. The dark, the boogie man, heights, being alone all of these things are out of our control and we are afriad.

The leader of the group asked us to think about our greatest fear. My greatest fear is of being alone. Then I thought, “What a oxymoron”. I fear being alone, but I crave solitude. But, solitude is not being alone.

Solitude is a comfort with being alone with yourself. I need that time to recharge my batteries. Most women give and give and rarely take time to give back to themselves. Lately, it is harder to find times of solitude because I am with my husband 24/7. There is nowhere else I want to be. I want every hour, minute, second to be with him. Solitude is where I talk with my God about all of the things that I am afraid of, but we don’t talk about being alone.

Intellectually, I know that I am never alone because He is with me, but I like having someone with skin on to hold me and come in the back door around dinner time. I like having to call someone when I arrive at a destination to say that I got there alright. I need someone to care that my car won’t start or if I have enough covers on me when I sleep…to be without my husband is almost enough to scare me stupid…and yet, I know somehow, I will find a way to live if he should not be here with me….

I don’t talk about this fear because I don’t want my kids to insist that I live with them. I am not afraid to be by myself in a house. I don’t talk about it because I don’t want to face the fact that unless God intervenes, I will be on my own and that is a different kind of alone than just having an empty house.

This kind of being alone is the part where a part of my heart is lost. A part of my mind is gone. It is a part of what makes me delightful is missing and I don’t want to loose that part of me. I am afraid of the changes that being alone will make in me. That is a fear under the unknown category.

I didn’t have to say what my greatest fear was in the group. I was relieved because I am not ready to face that fear… I am still at the stage where if I don’t think too much about it, it will go away. I know that is denial, but I need to stay there just a little longer, OK?

Adding to the Shadows part 3

The journey has been fraught with many difficulties, but the obstacles that I am encountering now are the worst to date. I have had times of anger and frustration with insurances, billing departments and collection agencies yet I have not experienced the draining of internal fortitude that I had this afternoon.

Every milestone that my husband has reached has had a down side. He has reached a major milestone in the fact that he has survived long enough to be on Medicare. Many may not know that it is a great accomplishment to reach that kind of eligibility, but with a diagnosis of 4th stage/terminal, it is. He has outlived the prognosis of the doctors, which were 6 month to 2 years. He has survived 2 years and 4 months. But, along with survival comes eligibility of Medicare and the discontinuance of COBRA with his insurance company through his employer and it sucks.

The cost of COBRA was 1/4 th of his disability benefit. That is costly, yet it covered a $132,000 surgery plus many tests, hospital stays and medicines. Out of his 2 million dollar cap, he has 1.5 million left.  Overall, it has been fairly decent in consideration what 20 percent of that amount would have been….that is what Medicare would have paid and we would have had to pay the rest. That is what I am looking at now. 20 percent of whatever the cost of the treatment. I know that Medicare has negotiated the lowest cost of any treatment, but there is absolutely nothing that isn’t costly with cancer.

I spent this afternoon trying to find a supplemental insurance policy that would help with the outstanding costs that medicare leaves and I have discovered that in our wonderful state of Indiana, no one offers a supplemental plan if you are under the age of 65. That stinks. I talked to people from Texas to the East Coast and they have been consistent with their information, Indiana does not offer supplemental Medicare policies. I have found one possibility, but it is a long shot.

I called a friend in the insurance business this afternoon to see if she had any inside information and she found one company, but the premium was untouchable. We cannot afford to pay the premium. So again, we are on this merry-go-round where we are damned if we do, and damned if we don’t….I finally just cried.

Cried because of the senselessness of this business. No one wants the risk. That is a very true statement. We didn’t want the risk either. At one time, we would have had little worries because we  had adequate insurances in every area, but that disappeared along with the businesses that we owned. We have nothing and we are left with nothing…it is a very dark shadow and it makes me angry that the few things that make him feel good and gives him quality to this meager life he has left is going to be too costly to continue.

I suppose this is just another thing to add to the category of UNFAIR…but life isn’t fair. It is hard. There is no need to rail against the wind, the dark of the shadows or the storms….it just wears you out and that is what I am feeling, worn out….totally worn.

I always thought of myself as a resourceful person and I think that I was at one time, but every resource has its limit and I am coming close to my limit. Today, I spent 7 hours on the phone and to top the day off, I received a bill from a pharmacy to which we never submitted a prescription. It was fitting for this day. How ironic! We are billed for something that we never received and yet, it was so appropriate. This whole experience in the medical world has been about receiving nothing that has benefited his survival.

He has underwent so many things that have left him in pain and anguish only to loose his life all the same. I know that it has helped to prolong his life, but in the end, it is the same as the bill for something we didn’t receive….We are paying for his life and he will still loose it….

There are times I become so weary of this fight!!! I just want to sit down and not get up for a long time. But, that isn’t reality. I think someone described bravery of being scared and going into the fight anyway. I don’t think that I am brave, but it is how I feel sometimes…afraid, but going into the fight anyway. That is the only option left to anyone with cancer.

You have to go into a loosing battle and fight with the understanding that you are not going to win. It doesn’t matter if you don’t want the fight, or that you don’t have a weapon to fight with or any security if you fight and win the battle because the war is lost. It feels very hopeless.

And then I feel angry…just plain pissed off. I am angry at the healthcare system, the hospital system and angry at the fact that this is my life. I waited a long time for him to be in my life and now, he is leaving.

That is this moment. Tomorrow, I will pick up the phone and start all over again. I don’t know what else to do. I will continue to look for a supplemental insurance that we can afford and hope that there is one who will be allowed to operate in Indiana….

I suppose, after a day like today, you get an appreciation for Don Quixote and his impossible dream….

Reflections on the Shadows

On my last posting, I truly thought that my husband was in the hospital without a return home in sight. It was frightening to see him in such pain and to see the questions on the doctors faces. He was a complicated case before this last episode. During this crisis, it was clear that he became more complicated.

The details of this crisis is not unlike others that are facing the end of their journey with cancer. His metastatic cancer mimics late and last stages of ovarian cancer patients. The tumors grow to such a massive size that they crush internal organs. His tumors are sitting, literally, on top of his stomach and small bowel causing obstruction. But, that is not definitive as the cause of this last bout that landed him ICU.

Two days before the hospitalization, he began a new treatment of Xeloda and Avastin. The xeloda is a pill form of 5FU. The cost of this medication alone can land you in ICU with a coronary. It costs $2000/21days or a month supply. The Avastin is a drug that is to cut blood supply to the tumors. That is great, but it cuts blood supply to the bowel, skin etc.

The prevailing consensus is that there was a partial bowel blockage from the tumor and the Avastin/xeloda combination paralyzed the bowel completely. He had an Ilius. An ilius is when the bowel stops functioning and air and gastric fluids are retained in the upper GI. This causes distension and pain. That was the main focus. Two days later, he had both lobes of his lungs to collapse and then pneumonia set in. Oh, I forgot the pulmonary embolis. So to review he had…..

  1. partial bowel blockage
  2. ilius
  3. distention
  4. collapsed lower lobes, bilateral
  5. pneumonia
  6. pulmonary embolis

That should cover it unless there is something that they forgot to mention. That is quite a lot even for  a cancer patient to recover in about six days. In fact, it is quite remarkable that he recovered at all.

For the first 24/48 hours, I didn’t know if he was going to recover and neither did he. He became very angry at himself for trying this new treatment. He mentioned the day before he started the treatment that he had doubts as to whether he should to this treatment at all.  His anger was at himself, but he was taking it out on others around him, me included. After the second day out of ICU, I had enough and told him that it was alright to be angry at himself, but it wasn’t acceptable to be a crank with the staff or me. And it is alright to be upset and scared and frustrated and all of the things that come with feeling ill, but he needed to stop himself from being hard on the staff.

I reminded him that the people that work in the hospital start their career in healthcare because they have a very deep loving and caring heart toward the human race. Without this type of personality in mankind, it would be impossible for anyone to survive illness. Without love and compassion, there would be more of an attitude that lends itself toward, “Let them die and let God sort it out.” Cold, it would be very cold.

These people who are in healthcare have a very difficult job on a good day. They not only contend with sick and often irritable people, but they have to deal with insurance companies, hospital protocols, rules and regulations. These kind of concerns rob caregivers of the emotional fortitude that is necessary in giving good care. It is hard to see to the physical needs of sick people and then have to fight the “establishment” to insure that the patients receive the care they need and deserve. Many times, they must become the advocate for the patient….this is a difficult career.

I suppose I was speaking from my nursing experiences.  I cared for some lovely people who were still kind and caring when they were deathly ill. They were selfless and thoughtful. But then, there were the other patients. These patients seemed to think that they were in a hotel and the nursing staff was room service.

On extremely bad days, the patients would be demanding, the doctors were demanding, the hospital administration was demanding and by the end of your shift, you felt like there wasn’t anything left for you to give. So, your family was robbed of the best of you when you returned home. Usually, those were the days that the kids were demanding and you took it out on your spouse because they wanted something too.

It is a hard job and unfortunately, fewer people are choosing healthcare. The shortages in staff add to the load of those who are doing the job. You are doing not only your responsibilities, but many times, you are doing the job of another person as well. So many in the healthcare world are burning out. Especially, when the general public forget the basic courtesies. A “please” and “thank you” goes a long way on those difficult days.

I know that my husband can become very demanding especially when he is fearful or when the professionals forget to explain procedures. He isn’t the kind of person that you can give an explanation by glossing over the topic and then proceed. He will resist you. That is why I try to be with him. It isn’t just for his benefit, but it is for those who care for him as well. If the ER doctor would have waited until I returned, my husband would have not become so hostile and pulled out the tubes that were just placed. Maybe they thought that they explained things adequately. Most likely, it was a the result of many factors. My husband wasn’t getting enough oxygen to his brain. The last time that happened, he hallucinated and he thought that his nurse, a male nurse, was a drug dealer and that this man was trying to hurt him. It was another time when my husband’s nurse was very glad to see me come through the door.

Trust is also a factor that is overlooked sometimes. Many people have a huge amount of hurt in their lives and trusting other people isn’t something that they can do. Gone are the days when people respected anyone in authority over them. In my parent’s generation, the doctor was never questioned or challenged. If the doctor said it, then it was law and gospel. Today, no one trusts everyone fully. It is also true that no one should ever turn their health decisions over to a doctor. Blind trust should not be given either. There needs to be a balance. If you do not have a basic trust in your doctor, find another one. Every one needs to educate themselves about their illnesses and their treatment. After all, it is YOUR life. Be “picky” about who you turn your life over to…after all, these are just educated people and not “god”. They are due respect for their calling, but everyone needs respect. Life goes a long way down a easy road when there is respect between patient and doctor.

Trust is hard for my husband. He would like to be able to trust more, but he has been so hurt by people and life in general that he doesn’t trust easy. I think that the ER doctor was unknown to him and he did not understand nor did he trust. It was just a bad situation for everyone. But, it is over and we are on stable ground for now, this day, this hour….that is all we can deal with…. the now.