“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!