Difficult Changes for the Advocate
Sometimes, things get worse. Sometimes it's not obvious. Sometimes it falls on you to make that call. In this blog, I will be talking about two kinds of difficult changes that an advocate will likely have to make at some point in their practice: Progressing concerns over time, and weather or not medicines are working properly.
They weren’t that bad the last time I saw them …
It is that time of year. We go to visit our close family members for more than three hours. Maybe you haven’t seen them for a few months or even since last year. Sure, everyone is on their best behavior, for a while, but “For a while,” is the key. These get-togethers can be a good time to stealthily check things out and observe. This is not the time to be rapid fire questioning or even prying at all. Just look, listen and observe. It is troubling when our loved ones begin to lose their independence due to a health condition or aging. It becomes a big stressor for us when we realize what is happening. No matter how hard it is to look for possible issues, it will be even harder to ignore the problem and be unprepared when you are needed the most.
Covering up and hiding things can be done for a few hours. The conversations are general; the house is clean (in the living room, dining room and probably kitchen). What about the rest of the house? What do the cars look like?
When you haven’t seen someone every week, you are more aware of subtle details that are amiss. Holidays, family dynamics, travel, cleaning, cooking, pressures at work, etc. are stressful. Even if it is a happy loving family gathering, it can still be stressful.
Here are some things to look out for when you see your loved ones:
Physical health changes –
Have they lost weight?
Have there been any changes to their medications?
Are they taking their medications correctly?
Are they walking differently?
Are they hesitant to get up and walk?
Does it seem they are unsteady or have a fear of falling?
Do you notice any cuts or bruises on forearms or legs especially?
Behavior changes –
Have they lost interest in things they used to enjoy?
Have sleep patterns changed? Napping more, less or sleeping more or less
Do they seem to be sad or angry? They may deny it, but how do they act?
Are they repeating the same stories?
Are they giving money to things or people that they have not done before?
Are they bathing regularly?
Are they wearing the same clothes day after day?
Are they losing track of time?
Are they showing an increase in agitation?
Are you noticing verbally or physically abusive behaviors?
Environmental Changes –
Is there a lot of unopened mail laying around?
Is there more clutter than you remember before?
Do you see spoiled food or past expiration date food in the refrigerator?
Are there any small things undone? (Burnt out light bulbs, laundry overflowing, crumbs or grime on counter tops?)
Are there any new dings or scratches on the car?
Is the yardwork being kept up?
Does the cookware have burn marks in it or on the outside?
Is the exterior of the house being maintained? (Gutters, spigots, painting, etc.)
Cognition, Memory or Judgement Changes –
Getting lost while walking or driving?
Trouble finding the right words?
Unable to complete sentences?
Unable to recall names of familiar people or objects?
Unless they are in immediate danger, do not make a fuss. Plan for a time to meet later and talk. When you meet, express your concerns and your observations. Know that they will probably become defensive; don’t take it personally. Re-state your observations and how all of you can work together for solutions.
It is unlikely that your aging family members are going to share things with you unprompted. They may not lie, but they are keeping secrets, and spouses will cover for each other. What one may no longer be able to do or handle the other one will step in and handle it.
When coming up with a plan, high on the priority list will be an eyesight check-up and a hearing test. They may not be able to clean as well, because they cannot see as well. They may have fights or spats because they cannot hear each other and neither of them understands what is wrong with the other. Hearing also affects their balance.
Some secrets that they may keep –
They are falling sometimes
They are in pain
They are short on money
They go on spending sprees
They are drinking more
Someone is financially abusing them
Someone is physically or emotionally abusing them
These conversations can be very awkward and they may deny that anything is wrong. Tread lightly. You want them to trust you to help and not to blame them or hurt them further by how you act towards them. Ask them if you can talk about XYZ. Share an article with them about it happening to someone else and ask their opinion and insight. If they refuse to talk or share with you then you may want to find someone else that they will talk to. Some people to turn to could be Their doctor, pastor, a friend of theirs, or someone else they will be comfortable talking with.
You may not get anywhere with them. They may close up and say no to your help. You can’t make them take it; you can only try to direct them towards help.
Are These Meds Working? How Can I Be Sure?
Have you ever wondered if a medication is helping, hurting, or even working at all? Have you ever wondered if an abnormal reaction or side effect is occurring?
What is pharmacogenomics?
The United States National Library of Medicine defines Pharmacogenomics as the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
Basically, your genes affect how and if certain medications are metabolized in your body, which is important because you need a medication to do its job well.
Some drugs, called prodrugs, are inactive when taken, and then they are metabolized into the active form later to provide benefits. If you cannot metabolize that medication into its active form, It will be like taking water. It won’t do anything because your body cannot activate it properly. If you take a medication and your body rapidly metabolizes it too quickly, you will not get the benefits of the effective therapeutic dose because you are burning through it too quickly. But if you metabolize the medication very slowly it can build up inside your body and cause more and more problems along with more intense side effects. Most medications are metabolized in the liver and excreted through the kidneys.
Many things come into play when it comes to pharmacogenomics—Metabolism, liver, kidneys, liver enzymes, excretion rates, inactive and active metabolites, metabolism rates, phases of metabolism, blood flow, changes in liver volume, etc. What I want you to know is that you can find out how you metabolize certain medications and you and your doctor can decide what medications are best for you and your particular needs. You can also find out if you need more or less of a certain medication. Doing the test once gives you the information that you can use for the rest of your life.
The 5 different types of metabolizer
A “Poor Metabolizer” for a medicine will process that medicine very slowly. The medicine might not work if it is processed slowly, or it could put them at risk for side-effects.
An “Intermediate Metabolizer” for a medicine will process that drug slowly, but not as slowly as a poor metabolizer. This means that the normal amount (or dosage) of certain medicines may not work for them, or may cause side-effects.
A “Normal Metabolizer” for a medicine usually benefits from the normal amount (or dosage) of the medicine. This means the metabolizer status does not put them at increased risk for side-effects.
A “Rapid Metabolizer” or “Ultrarapid Metabolizer” for a medicine can process the medicine very quickly. A medicine might not work if it is processed very quickly, or it could put the person at risk for side-effects.
My own experience with pain medications
My own experience with pain medications has led me to encourage others to take this test. I had arthroscopic shoulder surgery in the early 1990’s. They sent me home with Percocet® (Oxycodone and acetaminophen) and Phenergan® (promethazine). I get home, apply ice, and take my medications. I am out like a light in about 45 minutes. Now, I had never had any type of pain medications before and I don’t remember having any anti-nausea medications as an adult. After two hours, I am apparently whining in my sleep. I woke up hurting, and so sleepy. The promethazine is kicking my ass and I cannot wake up. The pain is fairly intense. Over the next 24 hours I am taking my pain medications as directed and only taking half of the promethazine. I do believe that the only thing that was helping me was being knocked out by the promethazine. I called my doctor and told him that the Percocet® was not working. He told me that was the strongest that they have. I know that’s a lie, I am a pharmacist. I understand that doctors are concerned about drug seekers, but hell, I just had surgery the previous day. He called in Tylenol#3 (acetaminophen and codeine). I took that and guess what? It did not work either!
I knew that I was screwed and would have to deal with this on my own. I iced, I breathed deeply and I took a half a tablet of promethazine every 8 hours and Ibuprofen 800mg every four hours. At that point I thought that I would never ever want another surgery in my lifetime! After about 5 days that felt like a year, I could finally stand it and moved on to physical therapy. I cannot imagine what I would have gone through if I had anything other than an arthroscopic surgery.
As a pharmacist, I know that not every medication works for every person. We all know that; we just don’t always know why. We knew it had to be something inside our body make-up, but what? We knew that when Ultram® (tramadol) came out that it worked for some people and it did not work for others. I believed people when they told me that certain medications were not working for them, and I would have them ask their doctor to try X, Y, or Z. Just because something is “supposed” to work does not mean that it does work for all people.
Funny how when we don’t really have the understanding, it can be hard to believe it could be happening. We doubt the person and not the medication. Well, no more! Now we know that some medications are impacted by our genes. I now know that I cannot metabolize Percocet®. My body cannot metabolize Tylenol#3® nor can it metabolize tramadol. They are pro-drugs which means they need to be converted into the active form inside the body in order to work. So, I was effectively taking sugar pills for my body. I have a genetic “defect” for CYP-2D6. Now I know what will work for me and the dosage that I will need. I have the tests to prove it for all the skeptical physicians worried about drug seekers. My primary care physician has a copy of it in my records and now I tell them to call him for the results if they want.
Funny how when we don’t really have the understanding, it can be hard to believe it could be happening. We doubt the person and not the medication. Well, no more! Now we know that some medications are impacted by our genes.
So, if you are going to have a planned surgery and you don’t know what pain meds work for you, it might be worth it to have this test. Only you can decide what is of value to you. It was valuable information for me and I can use it the rest of my life. No more waiting and hoping. No more wondering for months on end. No more wasting money and time.
Have you been diagnosed with depression? Have you started on medication? Hopefully, your doctor told you to take it at the same time each day, do not miss doses and give it 3 months. You do. It doesn’t seem to have helped very much, maybe a little. You return to your doctor and he or she takes you off of that medication and you begin again with another medication for 3 months. Nope, this one is not helping and you are now dealing with sexual arousal dysfunction. You return a third time, maybe or you stop going back and just suffer. You are 6 months down the road with no real results to speak of. Six months of your life that you will never get back. You tell me, what is that worth to you and your family?
Are you a chronic pain patient that wants the best quality of life possible? Let’s find the medications that will work for you and not wipe you out. Let’s find the right combination to help you to get back to living. I know that you will not be pain free, but you have every right to expect it to be manageable.
Everyone deserves the best quality of life possible for them.