BORDERLINE HEALTHCARE: THE BACKSTORY

13 MARCH 2015

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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.

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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.

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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.

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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”.

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