On the battlegrounds in the mountainous terrains of Afghanistan, American soldiers had waged a mighty struggle to avoid constant ambush. At home, primary caregivers could find themselves facing a similar struggle whenever they open their doors to the services of home health agencies.  Always try to establish open lines of communications with visiting nurses. If you don’t, your whole family could become embattled in a horrible experience that they will not soon forget.

During the course of providing in-home care for end-of-life seniors, many home health staff members will more than likely be knocking on your door. Families need them to perform skilled and non-skilled duties as they assist caregivers in providing quality healthcare to their ailing seniors.  Often they will feel just like extended family members. Therefore, you should strive to make an effort to coexist. For many years, they will play an important role in the lives of your whole family.

One of the best ways of achieving that is to establish and maintain a respectable level of professionalism. Even if they are like family, 

it will be wise to keep an employee–employer relationship between the both of you. Know that you, as primary caregiver, will be dealing with an array of unpredictable personalities.   And sometimes those personalities will clash with you because of incompatibility. Opinions will differ. Tempers will flare. Arguments will certainly ensue. You inevitably will run into nurses who will challenge your care giving advice, knowledge, authority, and possibly your rights as primary caregiver.  So, always communicate your senior’s routine behavioral patterns to cut down on them giving misguided advice and always establish your authority.

When nurses visit your seniors, the first thing they do is scrutinize their physical appearance. They look for open sores. They look for unusual behaviors. They take vitals. Sometimes vitals can show tell tale signs that something is amiss—especially when temperatures are elevated. Then they give unsolicited advice or opinions about what they medically think might be going on with your seniors.  For the most part, this is what they all do.  Ordinarily, there is nothing wrong with that.

You can help them in their assessments if you initially show them past vital readings or histories of your senior’s daily behaviors and patterns.  Make sure that each visiting nurse knows that there is a certain level of diminished quality that your senior exhibits everyday. If your mom is moving a particular way, tell the nurse that this is your mom normal movement. Or, if your senior is making some audible wheezing noise, tell the nurse that this is your mom’s regular behavior,  and that a doctor had already seen her about that.  Sometimes, a nurse could come into your home and catch your mom simply having a “bad day”.   A new nurse may panic from observing your senior being in some type of temporary distress with which only you may be familiar.  So, they really need to know about any unique behaviors beforehand.  That way your knowledge and medical opinions will not be questioned or challenged by a overly duty-bounded nurse who may overreact on what she sees or thinks she is seeing.

After all, is it not you—as primary caregiver—who are living with your senior everyday?  Most likely, you know more about your senior’s minute behaviors than that visiting nurse does. Therefore, it is incumbent upon you to inform the nurse of your knowledge about your mom’s present and past conditions. Make sure that the nurse knows early on that you are fully aware of any questionable mannerisms that your senior may be exhibiting.

However, when you don’t effectively communicate that, you may easily find yourself dealing with a nurse who has “gone South” with her professionalism, conduct, and authority. The both of you may end up in a heated discussion. And because she is a nurse, she may decide to retaliate on you for defying her medical opinions, advice or authority.

As long as it is within your expertise and jurisdiction, tell them upfront that you as primary caregivers will have the ultimate say-so on any rash decisions she might seek to impose on your loved one.  I say this because the lines of authority over who will be  making  definitive decisions for your senior can easily get blurred as visiting nurses come into your home with too much attitude, authority and ego.

These types of nurses can overstep their boundaries of who really is in charge. Challenging them about a particular matter or another can trigger them to overstep their roles and cross lines.  And it can get nasty real quickly. So, primary caregivers must be ready to prove their position, knowledge and authority in their own household. Make sure that nurses are aware of your senior’s daily “Borderline” behaviors and past vitals. This can help prevent power struggles later. It can also prevent your authority from possibly getting usurped.

“Good morning, Mr Williams! How’s your mom doing?” The arriving nurse greets me as she steps into our home for her morning visit.

“Good morning.  She fine.  She hadn’t been too long awaken.  But, she’s ok. Follow me, please”

“That’s good”, she says as she walks into my mom’s room.  She begins unpacking her medical instruments from her black tote bag.

—Ms. McCray, how are you doing?  She chimes in a pleasant tone.  I’m gonna take your vitals this morning.  Ok?.”

I stayed in the room with the nurse. Some caregivers leave.  But, I never leave our mom unattended.  Besides, I always have questions that I ask the nurse concerning my mom.  All in all, I had been expecting business as usually. As the nurse began pulling on my mom’s arms to wrap her blood pressure cuff around her arm, I scooted over closer to the bed to offer my assistance. My mom has contractures. And too many times have I witnessed anxious nurses become impatient from my mom’s natural reflexes to resist them pulling on her arm. Some nurses have a tendency to pull a little too quickly and roughly in their efforts to unfold stiff arms due to rushing. So, I usually step in and loosen up my mom’s arms in a more patient and gentler fashion. I always offer my help when home health began taking vitals.

Well, it didn’t take too long. Blood pressure, temperature, respiration, and heart rate were in her “normal range”.  Suddenly, the nurse stops and focuses on my mom’s chest. She just stood there looking at her. She appeared concerned.

“What’s wrong”, I asked

“—Mr. Williams, why does she pauses in her breathing like that?” She questioned me with an authoritative tone.

“Oh, that nothing to be concern with. Umm, she’s does that on occasions. It’s ok. Her doctor knows about it.”, I responded.

“Hmm…. I don’t know—maybe we ought to call EMS and have her go to the emergency room so that they can check it out”, she pressed.

“Ma am, I really don’t think that’s necessary. She’s been to the doctor last month and they already know about this. They told us to just keep an eye on it.  Actually, she’s been doing this–more or less–for a lot of years. It’s really not something of an urgent nature at this point. Certainly, it’s not an emergency. This is something that’s normal for her.”

But, the nurse would not let go of it.  She kept persisting that I take my mom to the ER.  Soon voices began raising. Unfortunately an argument ensued. We exchanged words. It got uncivilized.  I then told her that I did not prefer any longer her services. I told her that I wanted another nurse for my mom. Did I have a right to do this? Absolutely.  It’s stated in their policies: If primary caregivers do not get along with any nurse, they can request other nurses. I simply exercised my rights.  The nurse then finished gathering her medical instruments, put them in her black bag and hung it over her shoulder. She stormed out of the room, down the hall, and through the front door.  Needless to say, she was incensed.

I had unavoidably insulted her by challenging her medical opinion as a nurse. In her eyes, I became this “big bad man” who now stood in the way of her imagined crusade to save an elderly person who was in some urgent need. Of course she had been entitled to her unofficial opinion. I was entitled to mine.

So, after she hopped into her car and drove down the street, I immediately called her supervisor and told her about the incidence between us. I told her that I did not want her to visit our home again. They said ok. Well, certainly there was a disagreement in her assessment of my mom’s breathing pattern.  Still, I was not going to have my mom go through that whole ER experience unless it had been absolutely necessary. That was my call.

Later that morning, after I calmed down, I then called my mom’s regular doctor and told her about what had happened.  She was dismayed over my story. She told us that we had every right to refuse to take our mom to the ER. Apparently, the nurse did not think so.

Well, I thought it was all over until…  That next morning there was a knock at the door. We were not expecting anyone. As a matter of fact, we were still moving around the house doing our routine chores. I peeked out the front door window to see who it was. A man and woman were standing there with this air of “government agency” emanating from them. Slowly, I opened the door. I asked them who they were. They told me that they were social workers. They said that someone reported us about some issues concerning our mom. So, I told them to come in and have a seat on the couch. I told them that I needed a minute to straightening a little in my mom’s room.

Instead, the two workers impolitely imposed themselves into my mother’s room as they continued to follow me. They acted as if I were trying to hide something. Again, I told them to wait a few minutes. But they kept walking. I had no choice but to allow them to barge on into her bedroom. I thought to myself: Last I checked this was still America—where government agencies could not just force themselves on families like that in their own homes. …I guess not.

Even though we asked them who had called on us, they never answered us. They continued visibly searching around the rooms, assessing the environment, and examining our mother. I pointed towards my mom’s tracking charts hanging on the walls of my mom’s room used to track her daily progress. Then, I showed them our daily journals which we kept on the night table. I pulled back the sheet from over her and showed them the condition of my mom’s already healed bed wounds. They saw how healthy her skin looked.

After, they finished performing their assessments, they walked back out into the living room with sheepish smiles on their faces. They knew then they were on a fake call. The three of us sat down and I guess they were ready to give me their professional opinions on what they observed.

“Mr. Williams,…  I have to tell you that, out of ninety percent of all the homes we have visited, the way you two are taking care of your mother is outstanding”, the male said. They appeared to be apologetic in some way. They could not believe the exceptional way in which we were taking care of our mother. They didn’t apologize, but they did say that they didn’t know why they were called here.  They said that they did not know why anyone would call (DFCS) on us.  I asked them again,  “Do you know who did that?“ Again, they avoided my question.

So, I volunteered that I already knew who did it. I told them about the disagreement between the home health nurse and me. There was an awkward silence in the room. They looked at each other. The lady finally said that they could not give out that information.

“Mr. Williams, I would just drop it.  Just leave it alone”, said the other. Then they left.

Needless to say, I was upset and felt somewhat violated. Their intrusive and pushy tactics were similar to a Russian spy movie, “They’re coming to take her away”.  And certainly I had been even more upset about the nurse calling these people on me.  I knew that it was done either out of spite, for some false crusade to “save“ my mom, or to cover her unprofessional behavior in order to save her job. Who would truly know the nurse’s real motive.  I could have filed a complaint if I were into revenge.

Yet, I guess I had decided that I would take the advice of the social workers and not say much for fear of making matters worse for my mom. I thought to myself that if the agents had seen that we had everything in order, surely the home health nurse should have seen that as well. Yet, she still sought to initiate questionable actions against our whole family by calling DFCS on us.

Besides, we had already addressed that issue some months ago.  At one time we  did think that she might need a breathing machine. I had asked her doctor to order a portable pulse oximetry to monitor her O2 saturation. It stayed on her for a whole week. We attached it to her finger and transmitted to their office daily stored readings. After the test had been done, they determined that she was getting a sufficient amount of oxygen in her body. So we had already addressed that matter. And her doctor knew that.

This is what primary caregivers must expect when so many different visiting nurses come into your home. Anyone of them can overstep their authority and try to usurp the rights of a family caregiver who may be quite knowledgeable and thorough in her own rights.  Sure. I can understand completely that some caregivers and homes need to be scrutinized for negligence. But, that was not our situation. I had been my mom’s caregiver for many years. I learned a great deal of knowledge during the course of that journey. When I saw something unusual concerning her health, I immediately addressed it. That nurse saw the above standard manner in which we took care of our mom.  More disrespectful had been the fact that she didn’t listen to or believe me when I told her that my mom’s doctor knew about this.

Unfortunately, it didn’t matter to her that I knew my mom’s daily borderline physical mannerisms. Every senior has her own readings. No two are ever the same.  What’s normal for one may not be normal for another—especially for an end-of-life senior living at home.  And as long as these seniors stayed within their “borderline”, they are considered stable.  I tried to tell the nurse that. However, it fell on deaf ears.  Her emotions became the “boss of her”. Her thirst for revenge had to to be quenched.

And it didn’t end there. Two days later we were told that the home health agency booted our mom off their program. The agency apparently took her side. —No big surprise.  I’m sure they wanted to cut all ties with us to avoid any forthcoming lawsuits. When DFCS did not pursue any further actions, they knew that they possibly might be in a little hot water. So, they penalized our mom by disrupting the continuity of her much needed home health services.  After all, she did have a foley that needed to be changed.  Where was the agency’s moral and/or contractual duty to fulfill their obligation to their patient?  Frankly, my mom’s quality health care became secondary to their unprofessional and immature actions.  So, we ended up signing with another agency.  This nurse got away with a type of perjury.   Where was protective services for our family?  So sad.

And through the years, our mom’s irregular breathing pattern generally stayed around the same. How’s that for throwing sick people under the bus?

So, as primary caregiver, it is important that you make known to every visiting home health nurse who enters your household that you are fully aware of your seniors daily goings-on. Never hesitate to point out to every nurse any irregular or unusual conduct or behavioral patterns. Also, show her your mom’s average vitals readings. A below normal BP reading may not be abnormal to her. Each senior has his own range and own normalcy.  However, if your senior’s readings begin falling outside of her range, then some type of further action can be taken. In short, always know your senior’s “borderline”.

“In hospitals, we see them everywhere.   Senior doctors in white coats–males and females–with trainees in tow. We see them marching up and down the shiny tiled halls of our medical facilities.  They barely have time to talk to you as they rush in and out of hospital rooms with plastic clipboards and pens in hand.   Are these people potentially “medical terminators” waiting to pass judgment on our loved one’s life expectancy?   Once before, I’ve  had them threaten  me to take away my mom.   Are they part of some  secret “death panel”?

It’s common knowledge now that terminally ill people can live for an indeterminate amount of time.  And for the most part, family members are choosing to care for their end of life seniors at home.  Many are not relinquishing this family obligation at the doorsteps of hospice or nursing homes.  More important, they are not allowing an assembled panel of doctors to bully them into “pulling the plug” on their seniors.  And why should they?  Families now have choices. They can assemble a team of family members and medical professionals to assist them in providing quality health care.  This support enables them to sustain the lives of gravely ill seniors for many years.  How can anyone deny them that continuation of family closeness and unity?

This is indeed a win-win situation. Families have their loved ones with them at home. And the government is not “footing” the entire medical support for dying patients.  However, family members must be aware that every time their seniors take a visit to the hospital, a death panel could be crouched behind the scenes poised with gang-type coercion to convince them to sever in home caregiving for their loved ones. So, don’t be caught off guard in your moment of sorrow, fear and fatigue.  Be prepared when they come calling.

That evening at the hospital, mom had been given her round of intravenous antibiotics.  It had been four days now.  And at 10:00 am, I had caught wind of good news about her being discharged soon.  Still, I couldn’t be certain. Things are never certain at hospitals.  It would all depend on her.  Well, I had been ready to go home.  I’m sure she was too.  So that was good news for me to hear of the possibility of her being discharged that day.  I felt that I could finally exhale.  My low grade anxieties and apprehension would be a thing of the past. Mom would be going home.

I had been quietly, but impatiently, sitting in that much uncomfortable hospital chair next to mom’s bed. I was watching a cooking channel on TV.  Come to think of it.  I was rather hungry.  I had spent the night at the hospital. I had not yet eaten.  My sister would be there soon to relieve me.  Meanwhile, I had been relegated to official clock watcher. Suddenly a nurse spritely walked into the room with a big smile on her face.  She asked me had I slept well last night. I told her yes—even though I really hadn’t.  Those green hospital chairs are brutal on your back.  If anything they needed to give me a couple of those $15.00 Tylenols for free.  I certainly would have greatly appreciated that.

Soon after I had taken a big yawn, she told me that my mom’s doctor had wanted to talk to me later. I really didn’t feel like talking to anyone. My mind had been back at home with mom resting comfortably in her own bed. Besides, she had been in there because of a UTI that had been allowed to go untreated for too long due to a flawed testing procedures and processes by medical agencies. After the nurse finished checking mom’s vitals, she left.

Shortly after, a group of doctors and trainees entered the room–six of them. The female doctor told me to follow them into a conference room. Little hairs started standing up on the nape of my neck. I felt something else had been behind their ready smiles and cordial countenances. So I turned off the cooking channel and followed them. Little did I know that it would be I who would be served up for the main course that morning.

No sooner after I sat down, their demeanor changed.  A difference between day and night. It was almost as if I were facing a firing squad. There they were.  The six of them seated in front of me armed with their loaded ink pens and smoldering thoughts.  My body, waiting for the first impact, became tense.  Whatever the punishment, please let it be swift, I said to my myself.  Would I, at least, be offered my last meal?   I still had not eaten.

“—Mr. Williams, what do you want with a brain dead old woman? There is no more that you can do for her.” one of the six doctors swiftly fired off at me without any warning. Her direct and unvarnished starting question had been a tall glass of iced water dashed into my face. There was absolutely no tact whatsoever in her delivery.  I had realized then that these doctors were a team of bullies. They wanted me to give up on my mom. They wanted me to allow them to remove her feeding tube like Marie Schiavo. They wanted me to give her to hospice.  Once there, they would quietly allow her to fade into the sunset from starvation.  And they were trying to accomplish this by intimidation and verbal coercion—not by legal mandate.  They strove to convince me into being a willing accomplice into doing something I had been uncomfortable in doing.  If I were not awake then,  certainly I was now.  I had to be firm.

“Uh…ma’am, I don’t believe that.  She is not a vegetable.  She’s not a puppy at the humane society waiting to be euthanized.  My mom shows us everyday that she still has valued brain activity.  She does that in subtle ways. One blink for yes. Two for no. She may not show that to you when she is in this hospital, but we see it at home.”,  I countered. …I paused as I struggled to fight back tears. Up until then, no one had ever been that calloused to me about my mom’s condition. I had been taught to have faith and believe that God performs miracles.  Besides, we were doing a great job of caring for her at home. She was not in that category where one week or even two years from now, she would die.  It saddened me to hear them tell me that my mom was “brain dead”.  It also made me somewhat angry.  I hoped that they would end this.

But, they persisted. One doctor would ask me a line of questions, and as soon as I answered those, another one would shoot off a volley of questioning.  Certainly, I would earn my battle pay before this day was done. “Mr. Williams, all she is going do is end up back in the hospital again.  She is not going to get any better”, the African American nurse barked as she intently peered at me over the rims of her glasses. I did everything I could to hold my composure. I long since learned that it would not be in my best interest to get too upset and start raising my voice in these hospitals. That would be playing into their hands.  So I calmly told them that as long as I am the primary caregiver and power of attorney, I will not allow my mom to be hijacked by Hospice or a nursing home to die.

For a while, the exchanges went back and forth. Thirty minutes had past.  It seemed longer.  I turned to the male doctor and told him, “Sir, I have read about how much abuse that go on in those nursing homes. And many bed bound patients who can not talk are absentmindedly neglected. Terminally ill seniors don’t live as long in those places. Besides, my mom told me that she did not want us to put her in a nursing home.  And as her son and primary caregiver, I’m going to honor her wishes.”

…There was a brief quiet in the room.  One of them loudly exhaled.  They began conferring among each other in hush tones. Then the lead doctor said, “Ok Mr. Williams, We understand. Your mother will be discharged to go home today. We will assign home health to come to your house for a few days to assist you in the “transitional period”, he said with a smile on his face.  “Would a week be ok?”  He offered.  “Sure-sure, that would be fine!”,  I managed.  We all stood.  We shook hands.  That’s was it.

As we all filed out of the room, they hastened down the hall in lock step in one way.   I jaunted back toward my mom’s room in the opposite direction.  I had been so elated that mom would be going home today.

Back in her room, sitting in that non-therapeutic green chair again,  I switched on the TV.  The cooking channel had still been on, but I had lost my appetite for watching.  So, I changed channels.  Still in the back of my mind I couldn’t help but ponder the fact that I had stared the hospital ‘s secret “Death Panel” squarely in the face and didn’t blank.  Sadly, it would not be the last time I would have to confront this issue—but in a different form.  Only the faces would change.  And certainly it would not be for to protect the innocent.  I shuttered.

“In America, much controversy has been stirred up concerning possible “Death Panels” at hospitals. In 2009, Sarah Palin falsely accused Obama for proposing legislation for “Death Panels” at hospitals. Instead he was only trying to have the federal government foot the bill for the discussions hospital would need to have with family members about end-of-life issues.”

Now of course, hospitals do not have a separate department designated as such.  That would be too obvious.  So  most likely you will not find grim lettering painted on a door labeled “Death Panels”.  However, make no mistake, that panel is there. It is potentially there anytime a group of doctors team together to discuss your senior’s last knock on death’s door.  When you think about it, there has to be some form of medical officials who are responsible for assessing terminally ill patients in order to determine who “Live And Let Die”.   And if you, the primary caregiver, know in your heart that your loved one still has quality life worth fighting for, have faith.  Do not allow some doctors to bully you into giving up on your senior.  Preparing an Advanced Directive can help prevent this.  Meanwhile, stay alert.  No one knows when it will be their time to face the “Death Panel”.

—Ok, cue the music, “When you were young and your heart was an open book…”

ON  WINGS OF EMOTIONS: THE BACK STORY

The month is early May.  It’s 1:00 pm in the afternoon. Outside is nice and moderate with a gentle cool breeze in the air. I’m sitting in one of those plastic green lawn chairs on my front porch filling in crossword puzzles.  On our block on the westside of town, it can get awfully peaceful and quiet.  No screaming kids. No “hoopties” pacing up and down the street with loud music. Nobody mowing grass. Finally, I get a chance to just relax and recharge my batteries. Today had been one of mom’s better days. When I had left her bedroom , she had been resting comfortably. I couldn’t ask for anything more. Or could I?

In the dark recesses of my mind, …I’m crying. I wiped a tear from the corner of my eye with my finger. I slowly lowered my head as I briefly peered up at my neighbor’s house from across the street. I hoped no one had been watching. I began smiling as the whole scene made me feel a little embarrassed. Why was I crying? Hmm… I guess subconsciously I may have been lamenting about my poor old mom lying in that prison of a bed with all her life crippling maladies. When I thought about it, how could I feel happy or relaxed. My whole demeanor became more and more awash in deep sorrow. I tugged on the neck portion of my tee-shirt and wiped dry the corners of my eyes.

—Overhead a black crow loudly calls as it flies just over the top of the house. Its noisy cries jarred me back to reality. I then craned my head back towards the front screen door. Did I hear a noise from inside the house….?  I imagined that it might be my mother.  So, I quickly jump up from my chair, threw the crossword puzzle on the porch, and rushed back into the house to check on her.  My pace had quickened; my heart was racing.

But, after I turned the corner and dashed into her bedroom, all had been quiet. I let out a big sigh of relief.  Yep.  She was resting comfortably.  I guess I was just hearing things…again.  No rest for the weary, I softly chuckled.

Yet, I didn’t walk back out the room.  I just stood there, staring at her with this melancholy gaze. I wanted to touch her head and give her a light peck on the forehead.  But I didn’t want to awaken her.  She needed her rest.  So I just continued to stand there…watching and softly crying, even more.  Only this time I didn’t wipe away the tears.  No one could see me.  I kept saying to myself how unfair life can be.  “Why her, God?  Why?”  She didn’t deserve this, I whispered to myself as I shook my head in empathy.  I emitted a deep sigh.

The daily physical duties of a caregiver can be endless. Depending on your senior’s present situation at the time, you can log many miles trying to keep up with the demands of the day. Most often you will not even have time to do or think about much else for yourself. When taking on the challenges of an “end of life” senior at home, it’s all about the spiritual, the physical and the emotional.

Even though you are locked onto an emotional carousel of sorrow, empathy, anger, fear and self doubt, you can’t allow yourself the luxury of those emotions for too long. Spending too much time languishing on those feelings causes you to miss out on something more significant, something more precious that you might need to be focusing on at that moment. And that is gratitude and appreciation.

You see, amidst the pain and stark reality of your senior lying there so debilitated, you must not miss out on your moments of gratitude. Sure, your senior is not the way you want them to be. But, if you don’t learn how to fight through the sorrow, you will miss out on what you do have right there in front of you.

You should never miss out on those rare and golden opportunities to appreciate the good moments that you and your senior are sharing together.

When taking care of someone who is living with a host of illnesses in their body, things can get real ugly, real fast.  Next thing you know, she could find herself back in the hospital.  Your mom, once again, could be hooked up to medical tubes and being subjected to heavy handed Patient Care Techs jerking and shoving too roughly on her as schedules and time limits are the orders of the day.

So, thank God for what you have now, and treasure those golden moments. You never knows what it could be like next year, next month, next week, or even the next hour from now. Remember, there will always be time for crying later on…

Every ride to the Emergency department by EMS is not the same. There really is a difference between taking a speedy ride on a red light special than it is on the scenic route through the historic district. Not knowing the difference between urgency and emergency can cost you in time, pain, and money.

First, falling off a ten foot latter with a bump on your head might not be that alarming. But, what if you broke a rib? You look down and see a slight protruding under your shirt. However no skin is broken. Well, that might not be an emergency.

These days, many emergency rooms are short on doctors and beds.So after you do arrive to the emergency department, you might get stuck on a gurney pushed up next to a wall. A little girl who has a nail which had been driven through her hand might be more important. Or a gunshot victim with loud moans and groans will certainly go to the head of the operating room. Sad truth is when you get to the emergency room there may be others there who may need more attention. So you look at your watch and it’s nearly two hours later since you first arrived. You’re still waiting for a doctor.

Certainly, the wait time is bad enough, but what is worst is the pain. Having a protruding rib underneath your skin is not a pretty sight to behold. It’s ugly and it’s painful. However, you can’t take anything for the pain because that might complicate the x-rays. It also might interfere with other medications they may need to give you. So you will have to just bite the bullet and “man up”. Pain can be more magnified when you are waiting on a gurney next to a wall at the emergency department.

Finally, a nurse approaches you and she rolls you into one of the examination rooms.  She ask you a few questions. She even begin drawing some blood. She sets up an IV. Next she tells you that a doctor will be with you as soon as possible. And then you wait some more.

Over two hours later, a doctor finally walks in to talk to you. They need to perform some x-rays. This doesn’t take too long. The doctor tells you that the rib will have to be reset. So, they begin prepping you for an operation. They tell you that everything will be alright.

The next thing you know, you’re in the twilight zone. You are flat on your back and you’re looking up at the bright lights on the ceiling as they roll you into one of the operating rooms. The procedure doesn’t take that long.  And now you find yourself in the recovery room.  Some cute nurse is telling you to wake up now.  You don’t feel any pain because of the strong pain medication which they gave you.  So your recovery goes well.

Finally, you are back home. Two weeks pass really quickly. Thank goodness you had great insurance coverage. The operation will be paid for in full. And for the first time you noticed that you are feeling hardly any pain until your wife walks into your room with a letter from EMS. You open it up and make a surprising discovery as you slowly read the words on a billing statement. You begin to groan again.  You reach for your pain medication on the night table.

Why didn’t you know this, you tell yourself?  Little did you know that you were charged 200.00 for that nice scenic ride to the ER that morning by EMS two weeks ago. But, no one told you!  It’s not your fault right?  Certainly this is a rip off.  But, it might not be.  Most insurance plans do not cover EMS’s charge for non-emergency transport.  Suddenly, you begin feeling sharp pains—not in your side,  but in your wallet. You reach for your pain pills as you recall the whole ugly experience.

First, it seemed that you waited forever before they got to you, then you suffered through a lot of pain because you couldn’t take pain pills until they saw you, and now you have learned an expensive lesson. There is a big difference between urgency and emergency, not only at the ER, but to EMS as well.

“Like the Black Russian Terrier,  a caregiver must always defend and protect his/her decision to be able to continue providing home care for his senior. Everyday you will look back and question yourself about your efforts that you put forth everyday.  You will often scrutinize your ability to hold up under the many future challenges that certainly will come your way.   Even when frequent failings of medical agencies nudge you to question yourself, you must persist.  As long as you have  “adequate support” that you can rely on in your hour of need, you should always believe in yourself.    ….even when that “adequate support” comes into question.”

Two days had already passed after we had taken our mom to the ER.  She had been admitted by this time and she was getting successive rounds of intravenous antibiotics.  She would be in here for about two more days. For now, all I could do was put my life on hold as I waited for her temperature to lower.  Only then would she be discharged to go back home. So I waited…

Sitting in the green uncomfortable chair next to my mom’s hospital bed, I kept telling myself that we should not have been here in the first place.  We count on our medical team to assist us in facilitating our needs when we need them the most.  Yet, our little family had been put through a trying ordeal due to no fault of our own. There had been this inefficient chain of procedures among home health, doctors, nurses, lab, and urine samples.  It had been a flawed process that would endanger our mom’s wellbeing and unnecessarily disrupt our whole family’s sense of peace and state of order.

We were once again victims of an imperfect medical system that we would continue to face many times in the future.

But, all I could think about had been the past.   I turned up the volume of the hospital’s wall tv.  I really didn’t want to relive how this whole ugly incident transpired serval day ago.  It began with me calling her doctor about a routine UTI and rising body temperatures.  It had not risen over a hundred yet. We would continue to record so many hours apart temp readings into our daily journal.   It would not be too long before we had begun noticing that her average daily temperature (borderline) had changed.

Understand that rising temperatures could mean many things—warm clothing, hot rooms.   So, we simply went through our routine checking system.  We needed to check her urine.  So,  I drove to the drugstore and bought an over the counter AZO urine test kit.  Soon after dipping it into a small plastic container half full of her urine, the small test strip turned purple.  To us, that meant nitrites and Leukocytes (white blood cells) were elevated.  An infection converts nitrates into nitrites.  Her system most likely had been fighting off some germ.  So we called her doctor at the clinic.  Frankly, we generally knew what it had been.  Before we had gone through this without question.  We call her doctor to report it.

—“Well, who told you she has a UTI?”  Some nurse had questioned me in condescending tones over the phone.  Many times,  I never knew whom I would be speaking to over the phone.  I would ask for the correct departments.  Still, I often would get disrespected as a male caregiver no matter how extensive my medical knowledge had been concerning my mom’s health.  Nevertheless, I had grown somewhat use to it. But, I would be lying if I had told you that it didn’t often frustrate me to encounter it repeatedly.   At the very least I was not surprised by it.

“Ma’am, I bought one of those AZO urine test kits. The test strip changed to a purple color. That’s an indication of an infection. I’ve done it many times before and I have never been wrong.  Besides she has chronic utis anyway.  Her doctor should know of her unique situation here at home.

“Well, I’m gonna have to talk to her doctor about it first. We’ll call you back later, she said. Then she hung up the phone.

A couple of days later, homehealth finally arrived.  They had to take their own test and run it to the lab.  So, the nurse promptly went through the procedure of collecting a urine sample with an in/out catheter.   I noticed how much she had been rushing herself through the steps.  There were other patients visits on her list for that day, she had mentioned.   I became cautious of her not taking her time and following proper procedure.   Quickly she conveniently collected the first stream of urine from the catheter tube.  Then she gathered all of her medical items, stuffed them into her large black tote bag and left.

Three days had passed since the sample had been taken.  I had been pacing  and not sleeping as well the whole time.  I had begun losing a little weight from the stress.  Undoubtedly, the lab probably had not begun testing  the urine sample until after the day of the nurse’s visit.  She had mentioned that her day would be long. Therefore, she probably would not have made a special trip to take my mom’s urine sample back across town to the lab before tending to her other patients on this side of town for that day. So, dropping off urine samples would be her last stop.   This meant my mom’s sample would not even be tested until the next day.

Meanwhile our mom had been weathering mild to moderate pain from the UTI.  We would give her acetaminophen. But we didn’t want to give her too much as this would be counterproductive.   So, we would give her the AZO yeast infection pills for pain.  Then we would continue to call back to the clinic for word on the lab results.  However, they would tell us that it had not come back yet. The next day I would call again.

I resented having to be put in this position of somewhat being a pest.  Their call backs were terrible.  In the past, they would already have labs results in hand  and medicines waiting at the drugstore,  but they would forget to call to tell us.   We would be waiting at the house full of apprehension for hours, or waiting another day—for nothing.   Her doctor knew that she had a weakened immune system.  He knew how sick she was. He knew that she was a terminal senior being cared for at home.   So when they did not return calls in a prompt manner, you better believe that I would keep calling them.  I had to be persistent.

Another day had passed.  It had been late in the day and still no calls from them.   She needed antibiotics and she would not get any until the lab results returned.  I even called the drugstore to check if her medicine had been called in by her doctor.   Like I said, sometimes medicines would already be at the drugstore and her doctor would forget to call to tell us.

Interestingly, doctors will not order any type of antibiotics until after a three day or more waiting period.  This wait time is needed for the dominant bacteria to grow out in cultures. The wait time might not be so good for my mom,however.  After waiting for so many days already,  I can’t tell you how uncomfortable my mom was at this point.  I really didn’t want to increase the milligrams of pain medication. I stayed with the amount that I had been giving her.

Becoming increasingly more irritated, I called again. “Ma’am, has the test results come back from the lab?”.  I know she detected the urgency in my voice.

“—Oh, yeah, they returned yesterday. The home health nurse will have to come back out to get another urine sample. The first one had sediments in it.  I have the lab print out right here.  It says….wait a minute–yeah, it says that the test was not conclusive because the batch was contaminated.  So sir, we’ll have to get home health back out there as soon as we can.” Then she hung up.

I couldn’t believe what I had just heard. That meant doctors would not write up any antibiotics until readable cultures drew out which antibiotic would be most effective against whichever germ that was most dominate in her system. So, I immediately took another temperature reading. It had spiked to over a hundred degrees.  And even with the pain meds or fever reducing Tylenols we had been giving her, the temperatures were steadily rising.  She couldn’t wait any longer. So we ended up taking her to the emergency room. No way would I wait for homehealth to come do another urine sample.  It’s funny how they will tell you to call them first before taking your senior to the ER.

I would imagine some would try to make the case for us to put her in a nursing home. They would point fingers at my caregiving efforts.  However, I refused to do that because of incompetence on the part of doctors and home health, or a flawed system. This was certainly not our fault. It had been inefficiency and the inept urine collection process of her HMO and Home Health agency.  So, how was the system flawed, you may ask?

This was the present process:

1. Caregiver calls Home health

2. Home health calls her doctor for urine sampling orders.

3. Two days later, HH visits home to collect urine sample

4. Wait three more days for culture to grow out.

5. Next day, Clinic calls in meds at drug store.

6. Caregiver waits until drugstore receive call and mix meds.

7. Caregiver drives to drugstore to pick up medicine.

By the time we go through all that,  it often is too late.  That is a 6-10 days waiting time period since the first call of telling them about the infection.  With us, it might had been longer.

And it would had been even longer if she had waited for home health to come back out to collect another urine sample  All nurses do not perform up to standards.  The HH nurse had been in a rush.  She should know that the first stream of urine has sediments in it.  The second stream is the one free of contaminates.   That’s the mistake she made.  So, I ask you. Did she know that?   Or, was she so much in a hurry that she simply did not care?  Again, we couldn’t wait any longer.  So, this is how she ended up in the hospital.

THIS IS A BETTER  SYSTEM:

(1) A more efficient process would be to train and allow primary caregivers to collect urine samples themselves at home, if possible.  “Clean catches” are easier.

(2) Allow the caregivers to transport the samples to the labs themselves when confronted with huge time delays.

(3) Doctors should prescribe a general antibiotic (bactrim) for seniors to take until the urine cultures bear out which germs that are dominate.

(4) The doctor then can switch the bactrim for the more effective and stronger antibiotic like Sulfamethoxazole  or Cipro for example.

(5) Waiting inordinate amounts of time for antibiotics because of negligence, indifference or egos is not providing quality healthcare.  Correct this.

Our home care efforts did not fail our mother that day.  It was the medical agencies which we had in place to better enhance and expedite the quality of her health care that did.   We didn’t get better healthcare that day.  Instead we got needless delays,  a careless home health nurse, and attitudes from short patience clinic receptionists.

So how can our medical agencies gain the trust of family members to provide total care for their seniors when they many times allow faulty processes to continue putting lives at risk.   Leaving her in the hands of a nursing home could be like leaving the chickens in the den with the foxes.

Please understand that every home health, and HMO are not the same.  But, on average, this is what you get.  Again, Russian roulette is never a safe bet when rolling the dice when your ailing seniors health are on  the line.   You don’t know who’s been naughty and who’s been nice.   You sometimes can not accurately determine which agency is better by their records.   Records can be altered.  And agencies’ histories can be swept under the rug.

Consequently, every caregiver who has decided to provide home care to a terminally ill senior should know that she has made the right choice when you consider all the rampant and negligent goings-on in our wonderful medical facilities.   If your senior has no other choice but to be placed in a nursing home,  please choose wisely.  You may end  up having to choose between the lesser of two evils.   Godspeed!

“Many devoted caregivers give so much of their lives intensely involved in providing specialized care to an “end of life” senior.  Sadly, they often fail to adequately prepare themselves for the long and winding journey through the grieving process after their loved ones have passed away.   Can they find themselves as they search for true healing?”

As we get older, we learn to contemplate  death more.   We soon realize that it’s not a cartoon.  And it is not something that only happens across town.  The reality of dying then becomes more tangible to us. This is why when we lose a loved one who had been so close to us in our lives, we are forced to personalize death.  It then begins shaping our thoughts about how we feel about ourselves. The world in which we once perceived it to be is not the same to us.  The idea of endings become more concrete.

Yet, the only thing different is the fact that someone whom we loved very much is gone. Truth is:   Our view of the world depends on others.  It depends on our perception of it and how we feel about it at that time. So, how do we really feel about ourselves after losing a loved one?  In the aftermath, can we effectively cope with our new identities within us? …because it is all about us, isn’t it?

For many, death is a topic that can have different meanings to us at different times of our lives. As very small kids, we have a tendency to not place too much significance on it. Why should we? Our lives are just beginning. Playing, being loved, and looking for acceptance are our main desires. Have you every noticed that after very small tots lose parents to untimely deaths, they appear to adjust better with their lost than many adults? Maybe they hardly recall the deep parent-child experience after it had been prematurely cut off at that age.

Even though there may have been a significant amount of closeness in the short term, they still recover sooner that adults. Many times that lasting bond formed by closeness and frequent interaction never gets a chance to imprint enough on the child’s brain to cause long-term grieving.

However, when individuals develop a sort of symbiotic relationship between each other–whether families or other companions–the grieving process then becomes much more difficult. We know only too well that every death does not affect us in the same manner. So when we lose those psychological anchors in our lives, we become lost at sea. Were not we more secure than not when that person had been alive and around us when we needed them? Our world had more meaning. …And now they are gone.

Sadly, we have lost more than just a parent or significant other. We have lost our friend, our confidant, our protagonist, our sense of security, and our psychological support. This is why mother–daughter, son–mother, father–daughter and father–son relationships often can be everlasting. …even in death. And frankly, we might not be ready or willing to let go of that right now. The closeness which you both shared between each other still exists. The spirit talks when no one else can hear it. Death does not dissolve those types of relationships.

This is why no one should ever put their expectations on someone’s “healing time” after they have lost someone. Some of us never get over a death. Someone telling you to, “just get over it” , is never on the same page—friend or foe. Are we wrong? Who can truly say? There are no rules in the grieving process. Like I said, some of us never recover from losses.

Still, we have to go on with our physical lives. We still have to get up in the morning. Sometimes all we can hope for is to keep putting one foot in front of the other. We can always find convenient distraction like work, exercise, meditation or socializing to get our minds off of things. And although we may be still harboring grief, we can still actually move on to attain great material wealth or other personal achievements. But, are we just sticking band-aids on our symptoms? Are we merely finding substitutes?  How many of us are truly spiritually healing ourselves from our loseses? Grief stricken individuals should always strive to distinguish between real healing and substitutes. We certainly have heard of people dying from grief! The invisible wounds are always the toughest ones to heal, aren’t they.  We can be such good actors can’t we.

So which is more important–our external or internal healing? What real significance or healing do we benefit from if we are spending the rest of our lives nursing invisible wounds? But, the will to survive will always be there—no matter how faint. As human beings we are biologically hardwired to “survive”. …even if it is many times just window dressing. The bible says, “what good is a man who gains the world, but loses his soul?” So is this nearly the same for someone who has lost such a vital part of themselves?  Getting lost in personal accomplishments is not a healthy indicator of real healing from loss. How many “walking dead” are out there? Sometimes we zone out and spend a lifetime of psychologically beating up on ourselves—or others. We know it’s not wholesome. But, for now, its convenient.

So, no one should question or place their expectations on others who have lost a loved one. There are no time limits on how one grieves or copes with their loss. Understand that, the physical life continues with or without us.  And people will either understand you or see you as being deficient in some way. Very few will show genuine understanding, compassion or patience. Although there tends to be a sort of kinship between those who are walking down that dark path of pain and isolation.

So, absolutely, it is normal for you–if not for others–to take all the time you need to heal in your own way. It’s ok to spend sometimes an inordinate amount of time alone in quiet reflection. It’s ok to talk to lost loved ones in private. And, it’s ok to cry sometimes–still.  Besides, there are hoards of people who are running around town, smiling, laughing, and dancing the night away with miles between them and true spiritual healing. So what‘s the difference? “…If there’s a smile on my face, it’s only there child to fool the public…”—Tears of a Clown

Just know that the public is on it’s own time. And we do not have to dance to their music. We certainly don’t  have to embrace all of the obvious disingenuousness in the world. We do, however, have to participate within it. Even before, were not we doing that all along?  We were participating in a world with families, friends and strangers who really didn’t quite know us anyway. So, we are back to where we started from— at the beginning. Remember:  we still need to find ourselves. Who are we?   We are not alone.

My alarm rings!
And through my bedroom window, I scorn a fading moon
No! This day has not begun.
I am sleeping, barely creeping.
Just another morning.

Ring louder; ring!
My calling, calling, I dare to ignore–too soon.
For the race has not been run.
Still, I’m keeping;  still keeping.
Just another morning.

I am king.   Listen…
I rule a most quiet domain, my darkened room.
I curse the laughing sun.
Shine my crown,  as I lie weeping, weeping.
Just another morning.

….by  elvis

A terrifying race to the emergency department by EMS can be an all too familiar scenario for “end of life” dementia seniors living at home. This is why family members should always stay close to their seniors. Those who are providing primary care for them should never allow themselves to get separated after EMS roll their seniors through those metal doors outside in the back area of the ER. They will need to be there to answer questions, sign various forms and offer support–especially when these seniors cannot talk.  So, don’t permit yourselves to get so caught up in all the confusion that you end up in the ER waiting section. If you do, you could find yourself in a heartbreaking situation.

Long wait times at hospitals’ emergency waiting rooms continue to be a thorny issue in the paws of frustrated Americans. The reasons are still the same: overcrowding, confusion, beds shortages, fewer doctors. In 2011, CNN Medical producer, Sabriya Rice’s article “Don’t die waiting in the ER” pointed out real life experiences as a result of excessive wait times in emergency waiting rooms. Still, there are those who would claim that wait times have improved since the Government Accountability Office reported in 2009 that it had more than doubled. However, when you have a critically ailing seniors who has been rushed by EMS through the back doors of the emergency department, do not allow the ER’s waiting room receptionist to detain you. Your loved one could find herself alone on a blue light special fighting the fight of her life.

…It happened to us that day

Our mom began the morning not feeling well. That was nothing too unusual; it had happened at other times. Ordinarily she would clear up later on in the day. But not this time. Today, she needed something more than we could give her. So we ended up calling 9-11.

After EMS arrived, we quickly explained her symptoms. Soon they had her strapped on their yellow gurney and already loading her into the transport vehicle. We had already pre-packed her necessary items into our ER readiness bag. My sister and I were ready as well. So we briskly walked out the front door. My sister asked to sit up front with them. They refused. Strangely, that would be the first time that happened. Other EMS drivers had always allowed her to sit up front with them. So, we both stood next to our vehicle as we waited for them to leave. But, they appeared to be waiting—a bit longer than usual. Maybe they were running an IV or something. Normally, one would be sitting in the driver’s seat. The other would be in the back with our mom. Man, did they seemed to be taking an awful long time, I thought.

…Something was wrong

We then noticed that the whole truck had been slightly rocking back and forth. No one told us anything. It was eerily quiet—except for the soft squeaking of the rocking truck. We were just standing there watching in horror. I began getting this sinking feeling in the pit of my stomach. Why are not they leaving, I kept asking myself? I began pacing about the EMS truck. I would occasionally take small peeks into their semi-tinted windows to get a closer glimpse of my mom. I began to cry. My sister had this look of disbelief. No one had to tell us that they were performing CPR. Over 15 minutes, or so, had passed. Still they were waiting.

Then, out of no where, their supervisior suddenly crept up in a red sedan. He had parked several yards behind the truck. He hopped out, raced toward the EMS vehicle and entered. I never saw who he was. He came up on us so unannounced. My sister did, however. Seconds later, with red lights flashing and sirens wailing, off they went.

Both my sister and I rushed back toward our vehicle. I followed in hot pursuit. Racing down the highway with speeds reaching up to 80 mph, the EMS vehicle seemed to outpace us. Soon they were out of sight. I assumed that they were already there. I could only hope.

Minutes later, we rolled up towards the EMS parking section at the back entrance of the ER. That’s when we saw the truck. The rear doors were wide opened. We didn’t see our mom. We had assumed that they must had just rolled her into the ER. I quickly rode in the area, parked and began to hop out to look in their truck when a female EMS driver rushed up towards us.

“Sir, you can’t park there.“

I anxiously asked her could my sister accompany my mom through those back doors. The EMS driver refused. She told us that we had to find appropriate parking. Yet, all the front parking had been taken. So, we ended up searching for parking in the hospital’s 4-5 story garage parking. It seemed like forever. “Where was valet parking when you needed it?” I quipped to my sister. I tried to lighten the mood.

We finally hurried back down to the outside back area of the ER. We had made another attempt to enter from there. Again, we were denied. Some hospital staffer–I couldn’t tell you who–told my sister and I that we had to go to the front waiting room. We pleaded with him that our mother had just been transported through those back doors. I told him that I was the primary caregiver. “She is 87 years old and can not speak“, I explained. We told him that we had always before gone through those doors to accompany her because of her degenerative condition. He still refused. I knew that at this time those who were working on my mom would probably be wondering where her family were. Why were hospital people placing more concern with rules and policy than with the human element? Instead, we were being directed toward the dreaded waiting room.

So, my sister and I scampered through the front sliding glass doors and rushed up to the receptionist. We tried explaining our unique situation. We told her that we needed two of those white sticky authorization passes to enter the ER as soon as possible. We told her that our mom had just been brought back there and that she had been in a state of extreme emergency. We told her that the doctors would need us there to give them critical information. So what do you think happened? You guessed it. We were told to wait.

Well, I couldn’t sit. So, I began pacing. We both did. We had been put on routine status. It had been no surprise. We knew that this would happen—reluctant victims of the ER’s waiting room epidemic.

More than thirty minutes had passed. It seemed longer. We continued to check with the front desk receptionist for any word on the condition of our mother.

“No. Nothing yet, sir.“

So I paced some more. My throat became dry. Finally, Some older and thin lady wearing glasses walked through the doors from the main area and told us that we could enter. We hurried, almost running, through those doors. The old lady led us at the door of the resuscitation room. We looked through the window and saw her surrounded by a team of ER techs. They were alternating between applying chest compressions and forcing air in her lungs with the air squeeze bag.

But, it was too late.   …She had already passed.

So as they ambled out the room in single file with unemotional looks on their faces, one of them told us that we could go in to see her. The hospital Chaplain seemed to appeared from nowhere to join us in prayer. Soon he too had left. We then said our last words, just the three of us. It was over.

We never got the chance to encourage her to hang on, and that she would make it through this too. We never got a chance to look into her eyes for the last time to tell her goodbye. We never got a chance to say, “I love you, mom.”

This is my message: caregivers, family members and seniors can easily become separated by those ER waiting rooms. This happens more often when they are transported by EMS. It would have been entirely different if we had gone through the front. Either way, never allow yourselves to get separated from your seniors. Insist on entering with her through whichever doors that EMS take her through.

Remember, if your senior is wheeled into the ER through that back entrance where EMS trucks unload, the receptionist will not see your elderly person go through there. No matter how much you try pleading with her, she can only ask you to have a seat and wait. To her, your urgent concerns would only be business as usual.

So, if you are providing caregiving for an “end of life” senior and need to call 9-11 because she is in a really bad state of sickness, I would suggest you pray for your senior at home before she gets to the hospital. Tell her how much you love her then. Because if you get held up in that ER waiting room, it may be the last time you ever get to see your senior…alive.

UNEASY RIDER:  THE BACK STORY

“As a primary caregiver, your life will always be a neverending saga when living with a love one who has dementia.  Even at the early stages, there must always be a constant vigilance….”

*************************

It had been 9:00am that morning.  A bright yellow sun now nestled in light-blue skies beckoned us.  Our windows were half opened.  So, the sweet aromas of a brand new day rushed in—filling our nostrils with the inspiration of new beginnings.

Already we had been driving around the city for two hours now, my mother and I.   On occasions we would get up early in the morning and drive around–especially when she had been feeling restless.  And since her Dementia, we had been taking these early morning drives more often than not.

These rides seem to calm her.  And this morning, I noticed that her disposition had been vacillating between long bouts of quiet calmness and short  spells of anxieties.  I thought that I would try to break the pattern some by reminiscing about “old times” that we had shared as a family.  She would laugh.  So would I.  For that brief moment, I had back my mom.

“Mother..you ready to go home?”

“No.  Let’s keep ridin’.  I’m not ready to go home yet. —We got enough gas?”

“Yep.”  I would reply.

Then came the quietness, again.  However, it didn’t last long because she seem to begin tensing up and pointing at various vehicles that we would pass on the road.  She appeared to be more interested in the red ones. Somehow they seemed to conjured up something frightening to her.  With dementia there are no rhyme or reasons.  I also noticed in the corner of my eye that she was becoming more agitated.

“—Elvis,  let’s go somewhere else.  I don’t like it over here”, she said in haste as I would literally hear her rapidly breathing.  I noticed her moving around in her seat more. She was nervously rubbing together her hands as if she were trying to warm them.

“You want to go home now?”  I would keep checking.

“No, no,  let’s just keep driving” she contested.

“Ok, mother…”

So I took a turn on the highway.  She loved riding on the freeway.  I thought that it would be more serene and even less traffic—especially at this time of morning.  Most everyone had gone to work. The “rush hour” madness had past.  I would veer into the slower right lane and take the scenic route.

The steady drone of the engine became somewhat hypnotic.  My eyes kept closing and opening.  And the steady jerk of my bobbing head would not be the strong coffee that I needed to keep my attention on the road.   We had been riding for hours now.  I had been getting sleepy.   My mom had been unusually quiet I had noticed.   Her anxiety interruptions had been my snooze control.

–Then she grabbed the passenger side door handle and swung open the door.  Immediately, I awakened.  I could hear the loud and steady sounds of my tires grinding on pavement—almost like a strong rush of wind in a scary storm.

—Mother, shut the door!”, I yelled.   But she appeared to be trying to get out of the car.  I also noticed that she had unbuckled her seatbelt.   I gripped tightly the steering wheel with my left hand.  With my right,  I grasped her left arm.   The sickening gravelly sound of tires on pavement seem to get louder.

Quickly I pulled over and stopped the car.  It was only then that I had been able to  lean over and completely shut and lock the door.   I really can’t say whether I left it open or whether she unlocked it herself.

So, we just sat there for a few minutes.  I had to catch my breath.  Certainly I was awake.   I looked at her and she seem to have composed herself and not be any the worse for wear.  How could I really say anything to her.  It was not her fault.  It was the dementia.   I told her that everything was ok.  So I asked her again.

“Mother, are you ready to go home now?  I’ll cook you a nice lunch, ok.”

“yeah, I’m ready…” , she resigned.

“I love you, Mom.”

“I love you too, son”….

The advent of catheters

have leaped the tallest building by enhancing our quality of life.  However, who could have predicted the kryptonite of their overuse? When employed judiciously catheters  provide quality healthcare.   In the early 1930s, Dr. Frederic E. B. Foley improved the functionality of catheters by designing a latex retaining balloon near the tip of the tube. That made it possible for indwelling catheters to stay in the bladder without the need of external taping or strapping.   Interestingly, he did not invent the first catheter although we reference his name when asking for one.   Much earlier have they been implemented and have been very much in demand.

Even today

Hospitals rely on them for providing a convenient option for collecting and monitoring urine from attached and enclosed plastic collection bags. I’m sure this offered a more sanitary means than having patients’ urine drained in open buckets as they were at one time. Even home health agencies came to prefer them when providing caregiving services for those who may have complications with their bladders.  And certainly fast-paced Emergency room staffers reached for them when dealing with ailing seniors for quick urine analyses.  For short-term use, catheters are invaluable health care devices.

Unfortunately 

The problem arose when they were worn for an extended periods of time.  How can something so useful raise so many questions from patients and some medical circles concerning their implementation and long-term use? Make no mistake. They are great for temporary usage. However, catheters are notorious for presenting more than its share of maintenance problems, chronic infections, and being conveniently taken advantage of for monetary gains by the healthcare industry. Thus, we are quickly learning that Indwelling Catheterization for long term use has become a blessing and curse to many patients.

Indwelling Catheterization is really tough

on ailing seniors who have kidney stones. Funny thing is: doctors rarely tell you this. The prevailing advice and practice are that by drinking copious amounts of cranberry juice, it will help prevent urinary tract infections. Ascorbic acid and proanthocyanidins (active ingredient) in the juice have been known to prevent bacteria from bonding to cells in the urinary tract. Dutch studies have cast doubts on its efficacy. All in all, very few doctors or nurses will inform you of the fact that cranberry juice creates kidney stones. Large and small calcium oxalate stones find difficult passage through the urinary tract with catheter tubes blocking their exit out the urethra.

We experienced this

first hand when our mother’s Foley tube became blocked by stones around 2:45am early one Saturday morning. I tried repeatedly dislodging it by flushing distilled water through the small exterior port on the tube with a plastic syringe half-filled with sterile water. It failed. Many times in the past, I had unclogged them with ease. But, not today. So later on that morning, I called her home health supervisor to tell her about the blockage. I informed her that several hours after the blockage, our mom’s urine output had been unusually low, according to our daily desk journal. She told me to give her extra water. I replied that I had already given her 8ozs earlier through her gastric feeding tube.  And I had expressed my concern about giving her more due to the possibility of an over extended bladder.  I then began to doubt her medical advice.

So, once again I told her that our mom had not produced her normal urine output for that time of day. How would her urine properly drain in the plastic collection bag if it had been blocked, I reasoned? Then, the supervisor told me either to wait until Monday for a nurse to unblock/replace it or for us to take her to the Emergency room. I began feeling pangs of frustration and fear. I couldn’t believe that we had to wait out the rest of Saturday and Sunday for a nurse. Our mom could not eat solids. That meant we had to pour more liquid nutrition and water through her feeding tube. Surely, her bladder would become overly inflated without it being sufficiently drained. A healthy bladder can hold up to 16 ounces of urine comfortably for 2-5 hours.

Should I call the ER?

I certainly would not wait until Monday for the nurse’s visit. But, I really did not want to take our mom through that ER process. Rough handling, long waiting, and being subjected to unnecessary procedures had been something that I wanted to avoid–if possible. Besides, it was quite frigid that morning. I also knew that a Foley blockage (according to EMS) had been considered an urgency, not an emergency. My mom’s insurance would only pay for emergency transport. So, since I didn’t have $200.00, I thought of other options. Again I phoned her Supervisor and brought up the possibility of me deflating the balloon and carefully sliding out the Foley myself. This would allow mom to urinate on her own. She agreed. So that’s what I did. Shortly afterwards, she began urinating. I called the supervisor and told her. Then she reminded me to tell the visiting nurse who was scheduled on Monday to simply give her a new Foley. My sister and I were relieved. So was our mom. The small crisis had passed. …Or had it?

Monday arrived.

Around 10:00am, the nurse rang our doorbell (“for whom the bell tolls”). She entered my mom’s room. Immediately she noticed that the Foley had been missing. After we explained to her what had happened, she became furious that I had taken out the Foley myself. It made little difference even after I told her that I had discussed the issue beforehand with her supervisor. I repeatedly told the nurse that the supervisor approved of what I did. Still she denounced my actions. So, she took out her pen and wrote me up for violating policy. Two days later, my mom had been booted from their agency. We ended up searching for a substitute. Policies before patients had been her rule.

The whole incident

had been quite interesting.  My sister and I both knew that the Foley should not had been left in our mom for as long as it had been in the first place. Frankly, all the visiting nurses were doing was making numerous visits to unclog and replace dirty bags. This is why I feel that indwelling catheterization is a great device to have for short periods—when feasible. When they are there for other questionable reasons, it places unnecessary burdens on the patient and the family with too many maintenance issues when the tube become frequently blocked by kidney stones. And if you run into a situation like we did, you may find yourself searching for another home health agency. Eventually, we took her off Foleys all together. She did quite well without them for the rest of her years—with less infectious outbreaks.

Even at hospitals,

Indwelling catheter can cause their share of problems. It had been reported by HealthlineNews that 1.7 million Americans developed hospital-acquired infections (HAI) each year. And of that number an amazing 99,000 die of HAIs annually. However, doctor’s offices and nursing homes are the main culprits. 3/4 of those infection begin there. The economic burden to the U.S. may be as high as $45 billion per year. According to OxfordJornal.org, up to 25 % of all hospitalized patients have urinary catheters inserted during their time there. Nearly every visit my mom took to the hospital doctors required that she wore a catheter. And most often they stayed on longer than they should had. It became the rule instead of the exception. The sad truth is: most urinary catheters are commonly left in place even when they are no longer needed.

So while they are left in place

A host of deadly bacteria are passed on to unsuspecting patients. According to an article at emedicine.medscape, enteric pathogens like E. Coli are the most common culprits. However, Enterococcus, Pseudomonas, Staphylococcus aureus, coagulase-negative staphylococci, Enterobacter, and yeast infections are not far behind on the list. Proteus and Pseudomonas species are the organisms most commonly associated with biofilm growth on catheters. Unfortunately, Many patients become infected by various deadly bacteria–especial ailing seniors–because of catheter insertions.

What I don’t understand

is why do not more hospitals place extra urgency on dealing with these kinds of infections and death? It has been found that hardly any effective actions are forthcoming to prevent these hospital-borne fatalities. According to OxfordJournal.org, a national study to examine the current practices used by hospitals to prevent hospital-acquired UTIs had been made. And even though there existed a huge connection between urinary catheters and subsequent UTIs, the study bore out that no prominent plan had been widely used to prevent hospital-acquired UTIs. Hospitals are still dragging their feet.

And why shouldn’t they?

There is a huge amount of money to be made dispensing these medical products. Costs are even higher these days as most medical agencies have switched from latex catheters to expensive silicone. Home health take in quite a bit of money maintaining indwelling Foleys on seniors at home. It becomes quite expensive when these agencies make home visits to provide maintenance. With my mother, those tubes deteriorated in no time at all. They became kinked, blocked, gummy, discolored, smelly and cracked. They also leaked and occasionally needed reinsertion from inadvertently pulled out tubes. These agencies also got a premium every month from selling them to us. Medical agencies can “rack up” a ton of money replacing and servicing these medical devices—especially for “end of life“ seniors. Certainly Foleys are “cash cows” for them. No wonder there is scant urgency in addressing the matter in spite of lives being “on the line. Catheters continue to be a hot item because there is much money to be made from their usage. Sadly, greed may be greater than need.

Through the years

Catheters have been a Godsend in the short run. They provide easy access and convenience when urine samples are needed for analyses and monitoring. They also are great clock savers for time conscious nurses who are assigned caregiving duties for bed bound seniors who are incontinent.  Who has time to keep changing soiled underwear—right?  And of course when hospitals perform surgeries, catheterization is almost a necessity for controlling bodily functions under anesthesia.  Foleys are worth their weight in urine. 

Consequently

The medical field have grown overly dependent on the various benefits of catheters.  This over dependence has now, however, become a growing danger to many unsuspecting patients–especially ailing seniors. They are risking their health and lives for convenience. Studies have shown that long-term use of indwelling catheters presents far too many maintenance problems and deadly infections. Also, who can deny that profit-minded healthcare agencies find them opportunistic cash sources from selling them or from providing numerous home visits when they need to be serviced. Sadly, the long-term use of indwelling catheterization has become a medical product of inherently diminishing returns