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?

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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….

 

Shades of Frustration …

Our emotions are such a vital component of this journey. The diagnosis generates the beginning of the roller coater ride of thought and feelings. After the initial shock and the search for hope in the prognosis, you begin to search more for an indicator of sorts to point you toward a way to manage  your inner life of feelings, emotions and the role they play. It would be nice to have a manual of some sort for help in recognizing the signs of overload, exhaustion, and frustration.

I am sure there is a self help book dedicated to this sort of thing, but going to a bookstore to find such an “animal” just is not on the list of priorities when this journey is fresh and this journey is nothing but a flurry of activity generated by test, procedures, and doctor visits. Yet, it would be nice to have a brochure or pamphlet similar in design to what is handed out when you begin a new medication or when you have a new apparatus such as a continual pump etc.  A short overview as to  what can be expected concerning the emotional impact would be so helpful as well as a guideline to help identify the different forms of negative feelings. Just a clue as to their effect on the patient’s physical, emotional and spiritual health and what is their effect on the spouse or caregiver would be appreciated.

Abbreviated information to help in knowing what is close to “normal” for the fears that grip you in the night would bring assurances. Or a few suggestions as to where to look for a little joy or a ray of hope at the beginning of the journey would be nice with a side note as to where you can go to find a few moments of that feeling called “relief” would calm the deluge.

One of the more difficult and pestering emotions that seems to show up on a daily basis is called “Frustration”. It is the nicer term for the controlled emotions of fear and anger. Frustration seems to have shades or degrees of intensity and it seems to have an unlimited source. It is found in the mundane as well as the dramatic. It isn’t confined to just our perspective.

While My husband’s son was here for a few days after our ceremony, he decided that he would spend the day with his dad by running “errands”. It was a welcome relief for me to not have to do the running around and I could have a few hours at home.

The first stop was the family physician’s office for a blood draw. My husband’s medication dosage is based on the results. Each week, we go in and have the blood work done then later in the day, the doctor’s office calls with the adjustments. Because of it being the height of the cold and flu season and my husband’s compromised immunity, I sent masks with both my husband and my stepson.

The next stop was to the pharmacy for the monthly refills of medication and then onto the local WalMart (which I find a major challenge on a good day) to pick up a few things  for supper.

Those few hours with just me and the dog in a quiet house without any demands were relished and greatly appreciated. For me, there is nothing like having the house all to myself that recharges my emotional batteries.  I have always  thoroughly enjoyed the personal solitude that this experience brings. I suppose it is the way I am made. No complaints, here.Please don’t misunderstand, I do not consider anything that I do for him a burden or imposition.

When my husband and stepson returned, I saw a look of wear and tear on my stepsons’s face. It is the recognizible look of worn frustration. I asked him what had happened. He  proceeded to tell me about the long wait at the doctor’s and having to listening to the guy next to him cough up a lung. Then he said that the pharmacy was a crowded with lines as long as an amusement park. He said that the wait there was almost as long as at the doctor’s office. He noted that it appeared as if the entire senior citizens population of of our small town was in that drugstore. He continued on with the same observation at WalMart. He said that everyone in there seemed to have blue hair.

I said that I understood what he was saying because that was a normal “first of the month” occurrence. I explained that his father and I seem to have stepped into a time warp that has propelled us 25 years in our future. Stepson said that his dad made the exact same comment.

I explained that his dad and I never expected to be living like his grandparents at our age. Even though we aren’t even close to the age of Social Security Retirement, being on Social Security Disability made us subject to being a part of the “First of the Month Club”. Explaining further about how the government money hits at the first of the month, we members quickly visit stores. For many of us, food and supplies run low or completely out. Should that happen, you do without…

I pointed out to my stepson that living like this is quite frustrating and we have had to adjust to life on a fixed income. The frustration that we experience isn’t having to live so frugally.  When the doctors said that his father had 6 months to 2 years left on this earth, we chose for me to stay home and care for his father. We chose to absorb every  moment, to seize it, to experience life together as long as we possibly could. 

What was the more aggrivating aspect of living like this was knowing, at this time of our life, we were not suppose to be here . Whatever our sense of normalcy was prior to cancer was totally erased and replaced with living like we are ’70 something. Overnight, we went from being early middle aged to senior citizens… it just feels so weird to be grouped as part of the “Blue Hair Herd”.

Frustration of life circumstance is one of those “normal” emotions after cancer put us onto this road, but there are plenty more forms that it can take. For my husband, the most recent aggravation has become the continuous “follow up” visits scheduled by the oncologist.

Yesterday, we had a “re” scheduled follow up appointment with the oncologist. As the time drew closer to getting ready to leave, I could sense my husband’s frustration building. He was becoming more grumpy and I finally asked him what was bothering him.

He replied that he did not see the necessity to keep going to these “follow up” visits to a physician who has already stated that there is nothing more to offer him in regards to cancer treatment. What was the need to go in and try to be punctual , sit in the waiting room observing that we are the “kids” in regards to the mean age of all of the other patients, wait in a tiny cubicle that is colder than an igloo, make conversation with the doctor about her most recent travels, lay down on the treatment table for her to measure the increased size of the tumors, put clothes back on, say your good byes and go? All of that takes 3-4 hours out of a life that may have a limited amount of hours remaining and all for what????

I couldn’t find one argument as to why he should do this. It didn’t make sense to me either. There was no new drug on the market, no new surgery or surgeon, no new method of administration for the chemo drugs, nothing, nada. Why, indeed!

As I watched the frustration continue to build, he finally said what it was that was frustrating him the most about this appointment.  He said that every day that he went in for his IV Vitamin C treatment, he could feel that no one believed that this vitamin regimen was worth his time. However, this pallative treatment was more benefial of all of the  treatments that he has received in that clinic. He said that the process of building up his body gave him a “quality of life” result and it was the only treatment for which he believed worth his time and effort. He said he could sense that no one in the clinic believed,  had a positive thought or shared in his belief that God could perform a miracle and spare his life. He said that he could feel the negative thoughts disguised in pity and compassion draining his hope when he walked in the door. That unspoken disbelief caused his frustration to build to the point that now, he  has associated frustration with the clinic. He didn’t want to go there unless it was for his high dose Vitamin C IV treatment.

That is all that I needed to hear. I went to the phone and call the doctor’s office to cancel the afternoon appointment. When there was no answer, I left a message stating that he wasn’t coming and if they needed to charge us for the last two missed appointments, go ahead. (There are some doctor’s offices that charge you if you don’t show or if you call to cancel the appointment at the last minute.)

Minutes later, the secretary  returned my call and said that there were no charges for missed appointment. She said that it is understood that cancer patients cannot always make their appointments. Most patients can’t predict how they will feel on the day of appointments and cancelling at the last minute is not a problem. Then she said in a compassionate voice, “He is giving up, isn’t he?”.

I wasn’t expecting that and it stunned me for a moment. I thought to myself, “Quite the contrary. He doesn’t want to hear anymore negative words spoken over him and his condition.” However, I kept that thought to myself and replied that giving up was the farthest thing from his mind.

I explained that he knows that there is nothing new to hear and nothing new to report.  I explained that he doesn’t see the need for follow up appointments and he just doesn’t want to spend the time in the doctor’s office. I said that we would call if he wanted or needed to see the oncologist but there was no need to reschedule this one.

The secretary was very pleasant and said that was fine. She said that she would relay his desires to the office nurse and then onto Doctor. I ended the converstation by saying that we would be calling soon to schedule another Vitamin C IV treatment and we would see them all then…

The look of relief on my husband’s face and the break in the tension in the room was worth the phone conversation. Why encounter just one more “something” to become frustrated over when there is nothing to gain, but frustration? Makes perfect sense to me…

I think that we found one more way to handle the frustration/fear/anger combo. Eliminate those things that work against a positive state of mind, even when it means not seeing your oncologist…

I doubt if we would find a chapter in that non existent emotional manual called frustration, but I think that we are not outside normal bounds by managing frustration in this manner…

What began as a dark, deep shadow, ended up being a lighter shade of frustration for this day…..one more prayer answered….one more day without a the burden of a negative emotion…better yet,we found it!!!!

….ah….relief

 *smile*

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.

Strange Shadows?

Bizarre is the best term for this encounter. It was the last thing that I thought I would experience at that particular place and time. I am left with questions that have no answers, just more questions.

      These questions, so many are about me, about spiritual significance, about emotional and spiritual attachments; strange and bizarre questions about  strange and bizarre shadows or foreshadowing, They  just keep coming.

     All of these questions are based on the experience that I had one night at the hospital while my husband was in ICU. I had returned from home to spend the night with him.

He said that the nighttime was the hardest because in the darkness of night. In those shadows of the night, he questioned his salvation, his ability to survive this illness, or if he will go to heaven should he die.

      I asked him if he had all these thoughts during the day or at night. He said that he had them during the day, but they were worse at night. We decided it would help if I would stay with him at night.

      I returned to the hospital around 11 p.m. and as I was walking toward the automatic doors to the ER entrance, I noticed a woman sitting on a bench next to the doors. As I came closer, I noticed that this woman looked a lot like my husband’s second ex wife. This is the ex that has a certifiable diagnosis of bi polar disorder.

      This woman bears the responsibility for so many pains and sorrows in my husband’s life that she is the last person that he or I would want to see at this particular time. As I got closer, I still could not determine if it was she or not. Of course, if it was her, that would indicate that my husband’s daughter may be in the ER. That thought was disturbing.

     The woman was talking on her cell phone and as I got abreast of her, she gave me one of the most hateful looks that I ever received. The hateful look almost convinced me that it was the ex, but there still were doubts. So, when I got to the  front desk, I looked for a phone. When I located it,  I called the operator and asked for the room number of my husband’s daughter. Of course, there was no patient by that name and I was referred to the ER. I decided against calling there because that would cause me to make a decision as to whether to tell my husband that his daughter was in ER or not. I didn’t want to make that decision. Call me chicken or any other name, it was a responsibility that I didn’t want on my shoulders at that time under those circumstances, I went  up to the ICU. When I arrived in my husband’s room, I asked him to pray with me for protection. We prayed for the angels to come and be a hedge of protection around us and around his room.

      As strange as that sounds, it would make perfect sense if the history with the ex and our lives were known. It definitely is necessary to have protection from this woman and the effects she seems to carry with her…. I wish that I could explain it better than that, but those who know our experiences would know that praying for protection makes total sense.

     The question that came to my mind as I was trying to sort all of this was this, “What does this mean?” As soon as I realized that this question was underlying all of the deducing that I was doing about this woman’s identity, I stopped and realized how strange this question was. It was so removed from what was occuring in our lives this night. Why would I form such a question?

      On the heels of the realialzation that it was strange, I noted that I did not have the usual feelings of dread and in trepidation that usually accompanies being in the ex’s presence. I did not have the cold clamminess or nausea that are common when dealing with the ex or the daughter. Those physical expressions also accompany being in their presence. This was becoming more bizarre as I contemplated the totally situation.

      When I arrived in my husband’s room, I didn’t tell my husband about the woman on the bench. I decided that he didn’t need to stress over whether his daughter may have been in the ER or whether one of his granddaughter’s were there. Even though he has never seen these children, he would have been upset to think that they were that close and he could not see them or their mother. Why add more stress to his state of vulnerability.

      How peculiar to have an encounter like this at that place and at that time! What does it mean?

      There are so many theories as to the cause of cancer. One of those theories is that stress, prolonged hopelessness, post trauma sets the body up for cell mutation and that stress plays a huge part in someone contracting cancer. If that theory holds water, it definitely would lay blame at the feet of the ex wife and daughter. To give you an idea of the stresses, I will list a few of the most stressful:

1.      Being threatened with a knife by your wife.

2.      Sleeping with a gun under your pillow because your wife pulled a butcher knife on you before you went to bed.

3.      Hearing that if a divorce happened that you would never see your daughter again.

4.      Having all of the outstanding marriage debt made as your own personal debt

5.      Declaring bankruptcy

6.      Loosing your job because of all of the many and frequent court hearings

7.      Having the red dot from a laser scope appear over your heart when you came to pick up your daughter

8.      Being hit in the head with the stock of a rifle when you came to pick up your daughter

      That was experienced in a 24-month period of time…. So many more stresses followed over the next 10 years. Twenty years later, he still pays child support taken from his disability check…. injustice lives and finds a home inside his heart and mind.

      I suppose that, in my mind, I find the ex wife responsible for the cancer that lives in his body. Could it be that she represents death, hate, anger etc in his life? Is her presence the symbol or the shadow, forshadowling of his death? These are just a sample of what went through my mind after this incident. “What does this mean?”, still rings in my ears.

 

      How strange are the shadows of night! How great is the torment. of these shadows that are devoid of all light…Strange are the shadows that grow in doubt. Strange and bizarre are their account.

      What does it mean? Who can say? They are strange all the same.

Adding To The Shadows Part 2

The following is an excerpt from a paper that I collaberated with my daughter in law for one of her college Sociology classes. She deserves the credit for writing the paper. I contributed to content from the experience with my husband. It should be noted that my son, the husband of the author, is a traumatic head injury x2 victim. He was injured while serving in the US Marine Corp.

Why does a free society allow insurance providers to dictate patient health care as deemed medically necessary by the attending physician?

     This paper focuses on quality, timeliness, and efficiency of medical care based on the allowable limits that insurance providers impose upon individual healthcare. This topic needs to be researched due to the fact of the rising costs of medical insurance which in turn causes individuals and companies to purchase less than adequate policies. This gives authority to the insurance companies to decide what medical tests, procedures, and doctors that a patient can select and it includes medically necessary pharmaceuticals. This takes personal empowerment from the patients and professional provider and gives the final decisions that were once made by the physicians and places it on  an impersonal enitity such as an insurance provider that does not have adequate medical training, empathy or understanding of patient needs.

     ………we are operating from the perspective that medically necessary healthcare is limited by concrete and immovable requirements as deemed by medical insurance carriers. …… The following passage is from the American Medical Association. This information reflects a case study in which the insurance provider of this patient limited or prevented adequate medical care.

     “Allison is the resident taking care of Renee and is concerned that Renee is not doing well enough to be discharged. Allison would like to keep Renee in the hospital another day to ensure that she remains afebrile on oral antibiotics and that she is able to go 4 hours between treatments. The HMO, however, refuses to authorize additional inpatient care. The HMO has authorized payment for a home nebulizer for Renee, and the administrator for the plan feels that someone of Renee’s age with her history should not require additional inpatient care.” (American Medical Association, 2007).

     There are many resources and personal accounts of individual freedoms being compromised by insurance providers dictating less than adequate or medically necessary healthcare. The following an excerpt is from an online blog of several individuals discussing inadequate healthcare treatment.

     “Insurance companies and pharmaceuticals have barged in and made their camp with our trusted physicians. We are losing out on recommended tests and proper physicals as well as unbiased decisions on prescriptions! Have you been refused tests you know you should be getting? Open up! Don’t stand for it! ( I especially talk for women, as they will be refused the same tests a man gets automatically saying-*it happens to women*, it’s this, or it’s that, and refuse a MRI, or other important testing!-it’s total Bul ****-with a capitol on the *bull*) Are we going to quietly allow these corporations to dictate our healthcare?” (E-thepeople.org, 2003).

References:       American Medical Association, (2007) HMO-Dicated Patient Discharge           Retrived 09-24-2007 @ http://www.ama-assn.org/ama/pub/category/12045.html    E-thepeople.org, (2003). Who is governing Insurance Companies’ Rights to dictate Healthcare. Retrieved 09-24-2007 @ htt/://www.e-thepeople.org/article/31509/view?viewtype=best&skip=10

………Conclusion: Are we as a society going to accept healthcare designed by impersonal insurance dictations or are we going to find the solution by raising our voice? This problem impacts innumberable families on a daily basis because at the end of the day, it is the quality of life that truly matters.

     The subject for the paper was what freedoms have we lost that we once took for granted. The healthcare paper was in response to my daughter in law’s recent days fighting with the insurance company for coverage of a medication for vomiting. My son has intractable migraine like headaches. Some days, he has as many as six/day. Not all headaches cause nausea and vomiting, but those that do exasperate his headache pain to the point that it is unbearable. When that takes place, my son has to be loaded up in the car and driven 20-30 minutes to the local hospital for treatment of IM medications. This 30 minute car ride is where my son screams in pain until he reaches ER.

     The medication that he needs is Zofran sublingual. This medication is the only one that can prevent the kind of episode that I described and the medication is also called “Gold” because of the cost. If my son had cancer, like my husband, the insurance company would have no trouble approving it because it is necessary to control the nausea and vomiting that results from chemotherapy. But, because my son has traumatic brain injury, the insurance company, in their great wisdom, withholds its approval because there are other anti-emetic drugs. They want to ignore that my son has taken all of the alternative anti vomiting drugs and they do not work for him. The Zofran does work.

     As my daughter in law argued with the insurance company, the realization came that 25 years ago, the doctor would have ordered the medication, the insurance company would have paid for it and that would have been that. Since the days of HMO and managed care, the insurance companies have become little gods and approve or deny a persons care.

    As my daughter in law continued to debate and argue the issue, I thought about the intangible aspects that these publicly traded companies can never value. They can never understand the terror that my grandsons endure as they are all in the car racing into the night with their beloved father screaming at the top of his lungs for 30 minutes until they get to the ER. If this Fortune 500 hundred company could see the horrified wide eyes of these two beautiful children, would they be so insistant in denying approval of this drug. What is the cost of “Gold” if it prevents my grandsons the emotional trauma that they will have to overcome in their adult years because they have a family with a 100% service connected disabled and unemployable veteran in their family? How can you give a monetary value to the nightmare that they have already lived through in their young lives????

     Just as my husband waits to see if we can get assistance for the cost of the Xeloda, which will determine if he stays here through the holidays or not, the question begs to be asked, who is in control over his body? Is he, or is it companies who control medicines? Right now, it is not my husband.

      Just something else that adds to our Shadows as we walk toward the sunset…….