Month: August 2021

Why I do what I do?

August 25, 2021

You are going right along and everything is going okay. Then, all of a sudden…Bam! Something happens. The something may be a decline in health, it may be an increased need of your time when you don’t have the time to give, the something may even be that your job is now requiring more of your time and energy. 

You may be the “hands-on” caregiver. You may be the one that is making sure your loved one has a caregiver. You may be the one scheduling all of the appointments, taking care of the house and other chores along with your own stuff.

Are you a caregiver?

Are you a caregiver? Sometimes people do not view themselves as a caregiver if they are not providing the “hands-on” care. If you are seeing to the care of your loved one in any way, you are a caregiver. Being a caregiver will take a toll on you, your health and your relationships. Does that mean that you don’t do it? Of course not. It means that you need to be aware of the common stressors and strains that you will experience.

Being a caregiver is not easy. Being a caregiver can be rewarding. Being a caregiver can provide special and cherished times with your loved one. Being a caregiver can be maddening and fill you with anger, rage, resentment, guilt, and numbness. Being a caregiver can put you on autopilot. Being a caregiver can make you ignore your own health and needs.

I will share my experience with family caregiving for my mom

My mama was a smart, funny and encouraging person. She was a schoolteacher. She was independent. She loved God and her family. She was also stubborn and never complained. Her name was Alice and if she was the one that caught you doing something you were not supposed to be doing, she was the one that busted your butt. Growing up with her was fun and secure. My brother and I were taught how to think for ourselves, make decisions and accept the consequences from both our parents. I enjoyed talking with her on a new level as I grew up, graduated college and started my career as a pharmacist.

It was about 1988 or 1989 when I received a knock at my door one early morning. I had no idea who would be knocking at my door before 7:00 a.m. It was my mom, who lived an hour away from me. She was stopping by to tell me she was on her way to U.T. hospital for an MRI, that she may have had a stroke. My mind begins racing and I know I have to be at the pharmacy at 9:00. I took a quick shower and followed her to U.T. She was just matter of fact about the whole thing and I wanted answers. This is my mama! Of course, I knew we would not have the answers that day. She seemed fine and so I went on to work.

Two weeks later I go with her and daddy to the neurologist. When she came out, she handed me a pamphlet that stated Multiple Sclerosis. We had done a few neurological cases in pharmacy school, but MS was not one of them. Remember, this was pre-computer days. I did not know enough about MS but I would find out. I got permission to use the Medical Library at the hospital and did my research. Apparently, not a lot was known back then as all I could find about MS was one paragraph that basically stated “we don’t know and life expectancy was not thought to be affected.” That did not sit well with me and so I began to try and find out more information and mama let me go with her to her neurologists’ appointments. The neurologist was very good and helped me understand more and more. We would discuss treatment options and things to try.

Mama did well and kept on teaching. I met an amazing partner with 3 boys and we became a family. Life was good. In the early 1990’s mama began to have some concerning issues with numbness and weakness with her legs. She was more tired. By this time a new drug had been released and she began taking injections of Betaseron®. That helped for awhile and we all go back to our daily lives. The boys are in school and in sports. I am working 12 hour shifts and every other weekend.

Research before computers

The pharmacy became computerized in the early 1990’s and I could do some more research. Nothing like it is today, but I could access some papers form medical researchers. Inflammation and heat seemed to be the culprits demyelinating nerves of the brain and spinal column. I had a probable cause and now I am on to finding the ways to decrease inflammation in the body. We new about free radicals and inflammation damage when I was in pharmacy school, we just did not have medications to decrease them. Later, we learned that anti-oxidants would bind up the free radicals. But, the damn inflammation. It is very difficult for medications to cross the blood brain barrier (BBB). Yes, we could treat arthritis inflammation with non-steroidal anti-inflammatories (NSAIDs), but those medications did not seem to help the type of inflammation that MS patients experience. We continue with vitamins (for free radicals) and NSAIDs for her arthritis.

Early 2000s mama retired early and daddy kept working. She was using a cane and walker and soon she got a motorized scooter. Daddy had the house modified for a roll-in shower and he was determined to keep her at home. We all were, if possible. Mama began falling and it became evident that she would need someone at home with her. Daddy retired early. My brother and I were working and raising families. He was two hours away and I was an hour away. My parents were on a trip to see my brother and she had some kind of episode and was out of it, My brother is a physician and he took them to the hospital for tests. It appears she has had a ministroke. Mama has been a closet or rather bathroom smoker forever. Daddy finally quit smoking but he did the chewing tobacco and snuff for a long time before he finally quit all of it. She would not quit. I hated any and all smoking. It was very irritating to me and I would cough and cough and the smell was horrible too. Did she quit smoking? Nope. It took a little while longer and a diagnosis of beginning emphysema for that. But she did quit.

I needed caregiver support, but I didn’t know it

I am getting summoned down to the house more and seeing changes that I cannot blame only on the MS. Depression, and MS side effects here we go. The person that was my mama was no longer there. And, she would not be coming back. Mama is ready to divorce daddy and daddy doesn’t know how much more he can take. Oh hell. Now what? I suggest that daddy take her to a psychiatrist. Nope, he does not believe in that and is not going to take her. He told me that I could come and take her. I am stuck. I have to work and I have the boys and their stuff. My brother is building his solo practice and is raising his family. This shit show goes on for three months and it is getting bad. I make an appointment and somehow get daddy to take her. She is started on some anti-depressants and sleeping medication. Has she told anyone that she is not sleeping? No, of course not. When I would call, it was always “I’m fine or I am doing good,” I know that generation does not complain. I get it, I am just the kid and I am ten years old in their eyes. Never mind that I am a pharmacist. My brother experienced the same thing with them and he is a doctor. It was their business and they were fine. How do you suggest things to get them to act became the new game?

A couple of months after beginning her antidepressant medication and actually sleeping mama became more like her old self. There were things she could no longer do. Pay bills, do the taxes, do crossword puzzles (may have been due to some eyesight problems). You will find out as I did that, they are very good at covering things up and they will even help cover for each other. You may find them smiling and nodding more when they are covering up a hearing loss. They won’t like to talk on the phone or especially a cellphone (they really can’t hear very well.) The house is not as clean as it once was. The sinks or counter tops are dirty or have crumbs everywhere. They cannot see as well and they miss those things. Weird bruises? They may be off balance and bumping in to walls or things and maybe even falling.

I know, we chased a rabbit or two there. Anyway, mama needed to be in the hospital for a couple of days for an infusion of steroids. I was with her and stayed. The nurses were trying to get her to help them to move her up in the bed. I told them that she can’t she has MS and her legs don’t work. All they said was, “Oh, we don’t have her chart yet.” The hell you say, you mean you haven’t read it yet. I will be your worst nightmare at the hospital if you are not doing your job. I have a medical background and I know what should be going on and what should be happening. I know the questions to ask and I will be a pest.

I am not a honds-on family caregiver

It was during this hospital stay that I realized that I am not a “hands-on” caregiver. I love my mama more than anything and I will see to it that she has what she needs and who she needs to help her. It was eye opening to me that I could not do the “hands-on” stuff. I thought that I could do it all and help mama with whatever needed to be done. Maybe, I could do what needed to be done…if it had to be done, but it was not going to be easy for me and I was not good at it.

Seeing that what needs to be done gets done is what I am good at. Figuring out stuff is what I am good at. Figuring out who needs to do what is what I am good at. Basically, I am a great health care manager.

With that realization I try to get daddy to get some in-home care help. Nope, he is not having it. They do finally get home health a few times a week because she needed to have a catheter. She was mis-catheterized once. They placed the tubing vaginally instead of uretherally. Daddy took care of that problem and changed home health companies. Never be afraid to ask questions or demand competence.

Things are going smoothly once again. Mama and daddy are getting out and about. Coming for visits to my house and my brother’s house. It is 2005 by now and mama has been telling everyone that called that her birthday month is coming up. No, not day, her birthday month and what all she wants for presents. It was her 65th birthday July 16. We had a party for her at my house with dinner and cake. Presents too. It was a great day and she had fun.

A few weeks later, I am at work on a Sunday and I get a call from daddy. Now, mama does the calling and daddy will get on the phone to talk a little but he is not the one to make the calls. Already my hackles are up. My mind goes into emergency mode before he has said anything. He says, “Pat, mama’s kidneys have shut down and they are taking her to Parkwest hospital.”  He will let me know something when he knows something. There is nothing to do so stay at work. I did stay at work knowing that we closed at six. I take off for the hospital after work and she is in the critical care unit (CCU). They will be using dialysis to take the load off of her system to see if her kidneys will start filtering again. My brother is there by the time I arrive. We get a plan to visit and all go home. Daddy comes back up on Monday and stays all day at the hospital. We get to visit 15 minutes every four hours. He won’t leave the hospital. I finally convince him to stay at my house as it is only 20 minutes away. He goes every day for the first visit and does not come home until the last visit is over. I visit on my off days and I close the pharmacy early on my work days so I can make that last visit of the night. She seems to be getting a little better and at night the staff is more lenient on letting my brother and me looking at the lab results and records.

It is in reading those records that you see what is really going on. What the reality may be unless things dramatically change for the better. It is the first time that I saw that my mama was in the late stages of MS. That she was really weak and in danger. I am in full compartmentalized health care mode. I am searching and researching for what to do. I know that a nephrologist is in charge, but I have to do something…I cannot just be still and wait. Of course, the nephrologist is doing all the right things, but still, I wonder. I find myself being the medical person, not the daughter. If I am the daughter, then I must feel all the feelings and emotions that will rise up. The thoughts of her not making it and leaving us. What would my daddy do? What would I do? Nope, not going there. Stuff it down, soldier on. Facts, figures, what to do if this does not work is where my focus is. I hate waiting! I hate not knowing! I can’t deal with the hurt, the scaredness, or helping my dad deal with losing his wife and my mom. I still have to work and be on top of my game there or someone could die. My boys still need to go to school, go to practice and games.

Mama took a turn for the worse

Here is where things get fuzzy as far as timing of things. Mama knew about what was going on in the world with Hurricane Katrina. She slept a lot and we were told that she may have to go on a ventilator so she would not have to work so hard to breathe. This was Friday night at the last visit and my dad, my brother and myself were there at that visit. We all had plans to meet there on Saturday. We get home and my dad goes to bed. About 15 minutes later, the phone rings and it is the hospital. Mama has coded. I go get daddy, call my brother and we head back to the hospital. I hit the button to CCU and enter. They try to get us to go into a room. I am not having any of that and daddy tells them he is going to stay with me. They get daddy a chair and I go to mama’s room. There is this big male nurse up on her bed just pounding on her chest with CPR. I see my mama’s face and I know that she is gone. I tell them to stop, she has had enough. They did and stated to let them get her cleaned up for us to visit with her. I go back and tell daddy. About that time my brother enters the CCU area. Our eyes lock and I shake my head no. So, we wait to see her. Daddy sits beside her and holds her hand. My brother is on the other side, standing beside the bed. I am across the room leaning on the air conditioner. I don’t know how I feel. I see her and I see daddy with her and for the first time in a long time, I can see that he truly did love her. It wasn’t just a “have to deal with this because we are married.” The things he said and the way he talked about her. Daddy was always good about jokingly pestering mama and aggravating her, but to actually speak about feelings and emotions, no way. I mean, they were still taking showers together when I was a senior in high school. He always called her Jake and she called him Heavy. If they were mad at each other, they would use Alice or Jack and do the silent treatment for a few days. 

We met on Saturday or Sunday to do the obituary and set the time for the service. It was Labor Day weekend 2005. They had already pre-planned and pre-paid for their funerals. It was great. You sure do not feel like making all of those decisions. We had the receiving of friends and service on Labor Day evening and internment the next morning, I think. I get the days mixed up because she died shortly after midnight.

Here we are at the receiving of friends and quite a few people show up. We would talk about the past and the “trouble” she would cause and get in to. Reminisce and tell funny stories. Later on, when I went back to work, one of my techs who came to the funeral said, “I don’t know how to say this, but your mom’s funeral wasn’t sad.” She had never been to a funeral that wasn’t sad. No, it wasn’t a sad funeral. She was loved. She was missed and she is still missed. I have no doubt that she is in Heaven and she is fine. We are the ones that are sad and miss her.

I had begun grieving before mama died, but I didn’t know it.

I didn’t realize it at the time, but I had begun grieving the loss of my mama after her MS diagnosis and during her decline. We only had to deal with a hospital crisis for a week and I know the stress and anxiety that I dealt with regarding needing to be at the hospital, needing to be at work and needing to be at home for my family. You can do it all for a short time, but not for long. You will have to choose and that is okay. Someone or something is going to get slighted for a while. The big problems arise when the others in your life feel left out, ignored or let down. In other words, their needs are not being met and their tank is empty. Oh crap! You feel that your tank has been empty and you have nothing left to give. You can barely keep doing your job, much less what you need to do at your own home. Teamwork and sharing are a good thing. Taking time out for yourself to relax and recharge is a good thing. 

I believe that what caused my mom’s death was either of two NSAID medications that were pulled from the market. Vioxx® and Bextra®. Can I prove it. No, but I do believe they hastened my mother’s death. I understand all about medications, approval and the last phase of testing is when it is released to the general public. Now we know to monitor kidney function earlier. I don’t want another family to have to go through what we went through.

My why – Why I do what I do?

I started my consulting business to help folks have options, to double check on their medications, and treatment plans. To prevent the preventable. Now we have the genetic testing to see if a medication will work for you or not. We know that the families of patients with chronic health conditions such as Alzheimer’s disease. Parkinson’s disease. MS, Migraine, Chronic pain, Fibromyalgia, Depression, and Arthritis need to be heard, understood and find things that work for them. When you are in the big middle of things, you cannot think logically you are just too stressed. Sometimes you have to make a decision based on what you would regret the least. Are you frustrated, angry and just plain mad? Maybe, I can help and there are solutions. 

Imagine what your life and the life of your loved one would look like if you were a better equipped manager for your loved one’s health care needs. How much less stress you would be under. How much more energy you would have to do the things that you want to do. If you want a plan of action to improve your life and the life of your loved one let’s chat. I won’t know if I can help you unless we talk. If I am the right one for you, I will tell you and if I am not the right one for your needs, I will try to point you in the right direction.


Contact Information

865-684-8771 (leave a message if I am unable to answer)

What are the top 3 misdiagnoses categories?

    • Vascular events (any condition that affects your circulatory system) – Heart attack, stroke, Peripheral artery disease, Renal artery disease, Aneurysms, DVT’s, Pulmonary embolism, and more.
    • Infections – diagnosing a viral infection when it is really a bacterial infection and of course, vice versa. Treatments are different.  Lyme disease. Chlamydia, Urinary tract infections, Parasitic infections, etc.
    • Cancers – Breast cancer, Lymphoma, Colon cancer, Lung cancer, and Skin cancers are the most common.

Something isn’t right and you know something isn’t right

You know your body and how you are. When you know something isn’t right with you, go and get checked. You are your own best advocate. It is okay to research your symptoms. It is also okay to know when you don’t know and need professional help. If you don’t know where to start, start with your primary care doctor, Misdiagnoses happen. Missed diagnoses happen. Medical errors happen. Diagnostic errors happen. Get that second opinion or third opinion. Make sure that you and your physician are looking at the same set of clues and symptoms. We all have our own unknown biases. The ways that we view things and the ways that we describe things. I may describe a pain as constant and sometimes sharp. You may describe is as the worst pain you have had inn your life.  It all relates to what we have experienced before.

Ask questions, speak up and stay after it

Ask questions, write your signs and symptoms down with clarification of when, why and what makes it better or worse. All of these clues will help in the diagnosis. Remember, it is the practice of medicine and not the absolutes of medicine. There are no absolutes. Differential diagnosis is better for all of us. We start out with what it might be and start ruling stuff out. Sometimes, that takes a little time. Uncommon conditions pose a problem and you need an expert that can put things together and figure out a plan of action. Plus, they need to be able to recognize when they have misdiagnosed something and work towards a better diagnosis.

Work with your healthcare provider

The best thing you can do is to have a physician that will work with you, listen to you and discuss options with you. If you do not have that, you need to fire your current doctor and find one who will work with you. Other things you can do is to be prepared when you go in for the office visit. Do not make your doctor guess what the hell is going on. It is your responsibility to provide them with all of the clues that you can to help them make a more accurate diagnosis. What started first. You may not be able to put it all together from the beginning, but you will be close. Ask your doctor what they think it is and why they think that? Ask, “What else it could be?” If your doctor shuts you down, then maybe it is time to find a new doctor. After the visit, you need to be aware of how you are doing. Are you better? Are you getting better, worse or the same? Don’t just assume that the treatment isn’t working, if you do not improve. You may have the right treatment for a disease, but you just don’t happen to have that disease. You were misdiagnosed. Get back in for a visit with your doctor. If you don’t tell them the medication is not working, they won’t know to look for something else. They are not mind readers and to them “no news is good news.” A side note – A missed diagnosis is also called a failure to diagnoses or a delayed diagnosis. It means that the doctor or other health professional did not realize a medical condition that a patient presented with signs and symptoms of. So, do you or a loved one have a dementia or is it malnutrition, dehydration, mood disorder or substance abuse problem? Could it be NPH (normal pressure hydrocephalus)? Ask questions and keep asking until you get a good science-based answer. Rule out the things that you can and understand that you may not like the answer but you do have a good solid answer.

Are my prescription meds helping me, hurting me or doing nothing at all?

If you need steady state medications (dosages that last 24 hours around the clock), to effectively control your condition and you take it half the time or miss doses, guess what? You have caused your own treatment failure. Everything has been going well and then …Bam! You feel like crap and you don’t know why. What has happened? Is your medication helping you, hurting you or just plain not working for you anymore? How many of you have wondered if your medication is hurting you or if it is really helping you? Quite a few, I am sure. You are right to consider those possibilities, because it happens more than you think.

Can your body become used to the medication?

Your body becomes tolerant to the medication and you no longer get the same benefits or results. You may have added another medication that is interfering with the medication. You can be sure that something has changed. But what? That takes some digging. It happens quite a lot in folks that are taking medications for depression, anxiety, diabetes, Parkinson’s disease, chronic pain, fibromyalgia, asthma or COPD.  What is happening? Why is it happening?

Do your regimen correctly

Well, one thing that happens is that folks with chronic health conditions get sloppy when using their regular medications. They do not take it as they are supposed to. Sometimes, it is defiance and sometimes they forget. Did you know that there is a proper way to use mouth and nasal inhalers to get the benefits of the medication? You cannot just squirt all willy-nilly.

Is it the right medication for your needs?

Another thing that happens is the medication is not the right medication for you. You either metabolize it too quickly, too slowly or not at all. This happens a lot with antidepressants, pain medications and antiseizure medications. If you have had a treatment failure with any of these types of medications, I would suggest getting a genetics test. Full discloser – I do offer those tests for $595.00. All I need is an order from your physician, physician’s assistant or nurse practitioner stating a treatment failure or multiple tries with their NPI number and I can order you a test. Contact me if you want more information. 865-684-8771 or Your body may have become tolerant to the medication and you need a change.

What you eat and drink may alter the absorption

A new medication has been introduced that is causing the current medication to have problems. It may even be a food that is causing metabolism problems. A new health condition may be the culprit. Even your own lifestyle decisions may be impacting the medication. Lifestyle factors include your diet, alcohol intake, recreational drug use, physical activity or the lack of physical activity. Even medication overload can be the culprit. Medication overload includes too many medications and too much of a dose. Your chronic health condition has progressed and gotten worse.

Is it the appropriate medication for your needs?

Another thing to consider is – Are you on the appropriate medication to begin with? Do you have an appropriate diagnosis? Remember, it is the practice of medicine and there are not absolutes. We do see mistakes in diagnosing. It is not always the doctor’s fault. Some things act and look like other conditions and diseases. So, it is very important to rule out what can be ruled out as a cause.

Time is of the essence when this information is needed…What is it?

Imagine you or someone that you love had an emergency which required a trip to the hospital. When you get there, you will be asked a lot of important questions. One of the most important is a CURRENT Medications List. What are you taking? What strength? How are you taking it? Hopefully, they will also ask you, Why are you taking that?

Why are you taking this medicine?

The “why” is important because sometimes medications are used for off-label or other than their intended indications. For example, Seroquel® (quetiapine) which has indications for Bipolar disorder and Schizophrenia, may be used for sleep. Do you have a current medications list? Where is it? How easily can emergency personnel find it? Have a written or hard copy in your wallet that is updated every 6 months or every time your medications change. I would also include your over-the-counter medications as well as supplements and herbal products. Yes, I know. You think that you will remember all of that, but trust me you will not remember everything during a stressful situation. Cortisol will hijack your brain and you will be physiologically unable to recall everything that you are taking for 30 minutes to an hour or longer.

Medication misuse and abuse

Medication misuse and abuse happens all the time and it causes 1 in 5 Emergency department visits. The most commonly misused medications are Opioids (pain medications), Central Nervous System (CNS) depressants (used for tranquilizers, anxiety, sleep) and Stimulants (ADHD medications). These are not the only ones, just the most common.


    • Taking a medicine that was prescribed for someone else
    • Taking a larger dose than you are supposed to
    • Taking the medicine in a different way than you are supposed to. This might be crushing tablets and then snorting or injecting them.
    • Using the medicine for another purpose, such as getting high


Prescription drug abuse is the use of a prescription medication in a way not intended by the prescribing doctor. Prescription drug abuse or problematic use includes everything from taking a friend’s prescription painkiller for your backache to snorting or injecting ground-up pills to get high. Drug abuse may become ongoing and compulsive, despite the negative consequences. When will you write out and place your list in your wallet? Write it on your calendar. What gets written down, gets done. Pat