Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2015”

Managing Meds


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It happens in an instant.  You can spend your entire life, having taken nothing more than vitamins, but with a trip to the emergency room, or a diagnosis of a serious illness, as if you did not have enough to deal with, you will most likely be introduced to the world of prescription medications.  So, now you will not only have to deal with possibly a life-changing situation, but now, you will probably be concerned with side effects from the new medications, as well as learning how to take the many new medicines that will become part of your every day life.  You will have to learn the timing of taking these medications as “absorption” of the drugs is just one of the situations that can have an impact on the effectiveness of the medicines.  There are foods that need to be avoided, and some actually increased.  Times in between taking certain combination medications.  There are many other issues that can impact “when” you take a medicine.  And for someone who has never taken a prescription medication for the long term, even one drug, having to take a regimen of drugs, and scheduling when to take them, simply put, can be overwhelming.

For me, my life turned upside down in 2008 with my heart surgery, a result from radiation damage for my Hodgkin’s Lymphoma back in 1988.  All of a sudden, I was taking 7 prescription drugs, along with several supplements for calcium and vitamin deficiencies.  For the most part, my meds were all single dose per day, except for one of my most critical drugs, for my heart.  That was taken twice a day, but I was having a hard time remembering to take that second dose.  It was determined that I could take a similar drug, with extended release action.  Regardless of the consumption being ideal to the medical world, I took all my pills at the same time, as part of my bedtime ritual, this way I would never forget to take them.  And for me, it has worked.  Again, not the way the doctors would like me to take the meds, but my body has done okay (just) with this method.

But then, one of my medications needed to be increased, and I was forced to once again, go back to having to take a med twice a day.  And having concerns how to remember, I did something I saw only elderly do…

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I bought a pill box organizer.  I was still able to take my pills at night, but to make sure that I remembered to take my pills in the morning, I always had my car keys sitting underneath the box.  There was no way that I would forget.  The system works when someone has all their mental faculties.

But what happens to individuals who have no one to care for them, and yet, must be trusted to remember to not only take their medications on time, and the correct dosages?  And follow all of the other instructions with each prescription?

My father’s situation was not just a typical example, but unfortunately all too common.  A combination of effects from two strokes he suffered during surgery to remove his lung cancer, complicated with cancer cells spreading to his brain, my father, not only completely independent his entire life, but also the caregiver for his wife permanently injured in a car accident, he was unable to monitor, and administer not just his pills, but his wife’s also.

We had hired caregivers, round the clock, but my father was notorious for sending them home.  His attitude was, his house, his rules.   I wanted to kick his pride right in the ass.  But even when the caregivers were there, they were not allowed to administer or even remind him, to take his pills because that was not part of their job description, officially or legally.

So, in the beginning, of this stage of my father’s life, I drove an hour, each direction, just to manage his medications, and my stepmother’s.

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I had to arrange two different boxes, and then somehow, figure a way to make sure that my father did not mix the two up.  I had to take a sheet of paper for each of them, write their name on it, and the name of each drug, dose, and how many times a day on it.  Then fill each container for both.

Within a week, I got a call from my father, that he had extra pills left over from earlier in the day.  I made the drive up to his house, and found out this did not just happen once, but several times.  I had to come up with a different solution.  I could not afford to stay with my dad, nor could I make daily 2-hour trips every day.

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After research, and some assistance from FB family members, I found out about an alarm clock that had multiple settings, just for the purpose of taking medications.  I could program it, and it would go off, reminding the patient to take the medications at that time.  The only thing was, I was relying on my father to remember why the alarm would be going off.  But for now, it was the best solution yet to deal with the mileage that I was putting on my vehicle just for managing his medications.

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Then I learned about something new, courtesy of my father’s pharmacist.  Most chains now have a delivery service.  The pharmacy gets the prescriptions, and prepacks them into the organizer, and then delivers them, normally at no extra cost. I want to make note, I was not trying to get out of the weekly chore or travel of managing my dad’s meds, but I knew as time went on, my father would need our efforts more as his condition got worse.  But for the time being, this system worked well, even my father who was not a big fan of trying something new, liked the idea of having the pills delivered already prepared.  Combined with the alarm settings, the system worked until the time came that my father approached his next level of care.

For those of you reading this post, if you are in this situation, I know how stressful, scary, and intimidating it can be.  I wanted you to see that there are options available to help you if you are thrown into this situation.

Playing The Cancer “Card”


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Imagine, it is hard enough to deal with a cancer diagnosis, struggle through the steps of the staging process, tolerate the brutal side effects, and manage the days after treatments have ended, worried about if the cancer is permanently gone.  For long term survivors like me, who have health issues to deal with, cancer has been the least of our worries.  But as if fighting our own bodies and mindsets were not enough, most of us in our lifetime will hear this phrase at least once, “playing the ‘C’ card, eh?”

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You pretty much have to intimately know the person making the comment to figure out if the words are meant lightly or critically.  Regardless, the insinuation that a cancer patient, or anyone dealing with a serious issue, would use their illness to acquire special favor or assistance.  I know speaking for myself, as I struggled with my cancer, and survival, the last thing  want is anyone to feel sorry for me, and at many times, to assist me or “baby” me.

I wrote in a previous post about co-workers who felt I was getting special favors at work, while I battled my cancer.  I dealt with other co-workers who, just because they saw me walking my neighborhood a week following my open heart surgery, felt I should be back at work.  I have a whole list.  My case is not unique.  We strive so hard to be treated normal, and without pity, that without external signs of what we are dealing with, we are not allowed to feel bad ever without being accused of using the cancer card.

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Unfortunately however, I think our society has become desensitized because of so many who take advantage of systems.  We have all seen it.  A shopping center parking lot, someone is using their parent’s car which just so happens to have a handicap tag on it, and so, feels entitled to use the handicap parking space.  No one will notice, or no one will care, right?  Especially the one illegally using the handicap tag.  And then there are those we feel, who are not justified in even possessing tags like pictured above.  But if there is one thing I have learned, even after witnessing someone with a handicap placard being used on a pick-up truck, with “monster truck” sized wheels, there was a reason that placard was there.

Even Disney has adjusted their policies on allowing those with certain special medical needs while waiting for lines.

There is no scheme involved when a cancer patient or anyone else dealing with a severe health issue, needs to ask for a break, some assistance, some understanding.  This does not mean that we are playing any kind of “card.”  It simply means that today just might not be one of our best days.  And if you were to ever have to go through exactly what I am going through at that particular moment, you would understand that.

Cancer patients have very important needs, especially as far as exposure.  With immune systems challenged to the point of having no immunity system, there are many precautions that need to be taken so as not to be exposed to anyone have the common cold, or being exposed to someone who has refused vaccinations.  Fatigue is another major issue, especially during treatment, and in the weeks, possibly months following treatments, where a person just is not able to keep up.  In spite of having all their hair back, weight back to normal, and other things that remind you of how the person was before cancer, does not mean that there still are not issues being dealt with.

I possess a handicap placard.  And it does occasionally get used in certain circumstances.  Typically weather related when the temperature is too high, or the humidity is also.  The impact on my lungs is severe.  And as opposed to being held hostage inside my home, I do like to get out, and that means that the sooner I can get from my car to a building, and vice versa, the least time I have to spend recovering from gasping from air.  But by simply looking at me, you would never know this, unless you knew me.  There are other issues I deal with, but you only need to know this one example for the purpose of this post.

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So, for those of us, who deal with issues that require us to take extra time, ask for help, or just not be able to do something, it is okay.  And if we are accused of playing a “card”, so be it.  We have nothing to be ashamed.  But for those who feel the need, even in jest, to say “oh, playing the cancer card” or “oh, playing the heart card,” you cannot control how we receive that comment, and depending on what we are dealing with at that moment, we could end up feeling a lot worse.  And I do not think most people want that.

Before It’s Too Late


If there is one lesson that I learned from my late father, it would go along with the expression, “don’t go to bed angry.”

On a December evening, just days before Christmas, my father and stepmother were having a discussion, okay, maybe more of an argument, I believe over auto insurance.  I do not know all of the details of the conversation, but it clearly was not something that was going to end in the next few minutes.  They were pressed for time, with some last minute Christmas shopping.  So with frustrations built up inside, both of them got ready to do that shopping.  My father crossed the very busy street alone, started up the car, and waited for my stepmother to leave the house.

She never made it to the car.  And my father witnessed it all happen.  And for the nearly two decades that followed, my father carried guilt with him of that night, the rest of his life.

Many church-goers have it easy.  Go to church, confess your sins, ask for forgiveness, and move on.  All is good.

Not so for my father.  Already carrying major amounts of guilt for other things in his life, he would never get the chance to make things right with his wife.  She would survive the accident, but there were so many things that my father would never give himself the opportunity to forgive himself for.

He felt that if he would have crossed the street with her as he normally did, he could have prevented the accident.

But worse, with no memory of the accident, and never being able to fully recover from the accident, he would never get the chance to say he was sorry to her, and to have her understand what he was saying to her and why.  My father carried this guilt to his grave almost two decades later.

And so, it is during this time, that I too learned the hard way, never go to bed angry at someone.  You never know if you will ever get the chance to make things right.

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My dad often lamented on things he wished that he could have done differently with my sister and I in our childhood.  He wished that he could have had time back.  And I am sure that tormented him as much as my stepmother’s accident.  The only difference was that my father and I had an opportunity to make things right.

And I wrote it, in the post “My Dad Was Just Like Me” just the other day.

It was a comment that was made to me though after this story came out, that had a strange effect on me.  I generally do not reflect for too long on the things I write, as I am always trying to go on to another post.  But a gentleman said to me, “thank you for your story.”  I responded, “your welcome.  I am glad you enjoyed it.”

The man said, “no, you do not understand.  I have been battling prostate cancer for six years, and it has gotten worse every year, and today I got news that it could not get any worse.”  Again, I offered, “I’m so sorry to hear that.”

He continued, “That’s okay, I expected that this time would come.  But I have to tell my children (adults) of the latest news and I don’t have the best relationship with my son.  Your story put that into perspective for me.  And I want to thank you.”

I gave the man a hug.  It is all I could do.  And I hope that he gets that chance to mend the hurt between he and his son.  I sat for the next ten minutes thinking about this conversation, and where I would be, had things not turned out like they did for my father and I.  And I don’t have to find out either.

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