Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Medical Proxies


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I have been hospitalized several times over recent years.  And of course, one of the questions regularly asked is “do you have a living will or medical proxy?”  The purpose of either of these two acts, is to make sure that should a situation arise while in the hospital, that you are no longer able to make a medical decision on your own, for any reason, that your wishes are known before hand, and enforced.

I am not too familiar with each specifically, although I know in recent years, I have had to deal with both.  I do have a living will that was created a few years ago, which specifically stated my wishes as far as my care should I be unable to make the decisions on my own.  It is also expressed as an “advanced directive” such as artificial measures meant to prolong life or other extreme measures when there is no hope.  Note to self, I have since filed for divorce, so I should probably change some of the directives and who carries them out.

A medical proxy on the other hand, is a person who actually and legally makes the medical decisions on the behalf of the patient.  In most cases, the proxy will simply follow the living will, if that directive has been shared with the proxy.

One of the first things, and actually smartest things that my father did, when he was diagnosed with lung cancer, was to make sure that steps were in place, should anything happen to him, that his wife would be cared for, and what little assets he possessed would be protected.  My brother would be given all legal power through what is called a power of attorney, in other words, if my father were unable to make any decisions, or even pay bills, my brother had the legal authority to make those decisions.

The same decision making power medically is given through a medical proxy.  Again, the responsibility to make sure that all medical wishes are followed through.  In my case, my father asked me to take on this task, not jus because of the “what if’s”, but also, he knew that I would be his strongest advocate to explain to him, things that there happening, things that needed to be done, and to make sure that he got the best care.

Both power of attorney and medical proxy can be very frustrating positions.  Under normal circumstances, only one person is selected for either, and just as when only one family member is selected as an executer of a will, feelings can be hurt, and actually complicate the enforcement of important decisions.  Then there is still the time period, when the patient is still fairly in control of their mental faculties, and the patient either complicates efforts or even sabotage efforts.

But when a patient is in need of both a power of attorney and a medical proxy, unless it is a long term medical situation, the only other time that these positions will be in need, are during the stage of life, preparing for death.  Now I want to make sure that I am clear, any comments that I make in this post, are not a reflection of what happened with my father and I or any family members.  I am actually in communication with a couple of friends who are in the very situation right now.  And “Paul’s Heart” is about helping others and so, I decided to write this post.

Anyone who takes on the task of having power of attorney or medical proxy has to be counted on, by the patient, to carry out the wishes and legal needs no matter what.  Feelings of others are bound to be hurt, decisions are going to be questioned, but in the end, having followed what a POA or MP were charged to do is what matters most.  Those two titles are charged with a responsibility to do what the patient is not able to do, and wants met.

Once a patient’s status gets bad enough, that hospice gets involved, the two positions of power of attorney and medical proxy take on even more importance.  Emotions among family and friends are likely to escalate, as only the people involved in the decision making only know all of the facts involved in the care, and legally, this is important to protect the patient’s privacy rights.  Even though everyone could be related, protecting that privacy may have been important enough to the patient.  As the time drawers near, it is important for both of these legal representatives to understand just how important their roles are and that there will inevitably be conflict.

While my brother was my father’s power of attorney, I was my father’s medical proxy.  My father had his reasons for appointing us this way.  And I believe the two of us both agreed.  My father’s decision to ask me was based on the fact of my experience in the cancer world.  But as time went on, and his cancer got worse, my role went from just questions and information, to decisions.  Eventually the decision would have to be reached between my brother and I, to have my father placed with hospice.  With his mother, my stepmother involved, this was going to be the most important decision of all.  For the first time in nearly 40 years, our parents had the possibility of being separated for the rest of their lives unless we could locate a facility that could accommodate the levels of care necessary for each of them.

Once the nursing home was found, and yes, we were able to accommodate both of our parents, next came the hard part, filling out the paperwork, and agreeing with the new level of care that would be given to make our father as comfortable as possible in his final days.  And this would be the most difficult.  Because with hospice involved, and my father’s living directive, it was clear what my father wanted and did not want.  Again, my father knew I would be able to separate the role of proxy and son, emotionally this would be critical.

In a patient’s end of days, the suffering can be immense, and the person in the role of the proxy must do exactly as the patient wants.  There is no room to allow emotions to factor into any decisions for to do that would only increase suffering.  Family dealing with sorrow, in spite of recognizing that death is imminent, a grieving family member will do what is normal and expected, reach out for extraordinary measures to somehow, turn the condition around, from investigating a last minute attempt at a cure, to treating symptoms, which would only prolong the suffering and death.

Hospice gets involved when death is not only certain, but imminent.  There is no chance at cure.  There is no last second miracle coming, and to believe otherwise is cruel to both patient and family member.  And even when it is just comfort that is sought, decisions are actually made to remove medications that at one point were taken daily for daily health, trying to justify to other family members that there is no benefit to continue those medications.  But perhaps even more frustrating, is if a patient, in hospice, were to contract an infection or pneumonia.  There is the likelihood of family not understanding that treatment for the normally acute illness would not be administered because at this stage, there is no desire to draw out and extend the life.  Really no different than if he were to suffer a heart attack or stroke.  The orders are strict, there is to be no attempt to prolong the life which would definitely increase the likelihood of suffering.

The role of proxy is a difficult position to be put in.  I have been in the caregiver role for twenty-five years, but my father was the first time I had been placed in the role of a proxy.  I did what I had to do as I made sure my father’s wishes were honored.

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.

Children Of Divorce


This post is not about my own personal situation, nor will it discuss any details about my personal situation.  Examples listed in this post are just that, examples, which hope to bring awareness and understanding to a difficult situation that many families deal with.

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No one is more aware of the emotional impact on children, from the divorce process itself, than someone who once was a child of a divorced family.  Of course, there are the cynics who will refer to divorce statistics to reinforce and coerce potential suitors of the potential marital future of any suitor.  And then of course, there are those who offer unsolicited judgment in the form of criticism as the only form of support.  A former psych major in college, I can tell you that books, opinions, and statistics pale in comparison and meaning when actually dealing with a child caught in the middle of a divorce.

People need to understand, that using statistics as a way to sway or pressure someone to somehow prove everyone wrong by staying in a bad relationship, or by insinuating that the children have been through enough trauma in their life (for whatever reason), that it should be better for them to continue life in a home of constant stress and turmoil, than go through the divorce process.  Quite the contrary.  To continue to subject children to the typical hostile environment of a bad relationship, married or not, is child abuse.  FLAT OUT CHILD ABUSE if you continue to leave your children in that environment.

It is much better to have the differences between parents separated, to be dealt with between the parents, than to put the children at risk of being emotional collateral damage.  As Dr. Phil states, “it is better for a child to be from a broken home than to live in one.”  Children have amazing hearing when they want to.  They also want to be able to have unrestricted and unsuspect conversations with both parents.  Children are not pawns.

Statistically, yes, I am now second generation divorced.  I proved the statistics correct.  But more powerful than the statistic is that I know what it is like to be a child of a divorced family, and experience means multitudes more than any information provided by books.  I know what my daughters are feeling right now.  I also know and understand what my parents had to deal with.  This should be a good thing and help in protecting the children and keeping the emotional scarring to a minimum.

But there are so many in the world, who have not had any experience with a divorce, other than receiving or observing input provided by bias family members and friends who may or may not have gone through a divorce.  For many, opinions and recommended by nothing more than “bandwagon jumpers”, totally unaware of the complete history of the relationship, and rely solely on, “stick it to him/her.”

Again, I am not referencing my own situation.  I will not discuss those details.  This post is about providing awareness.  Awareness that I am indeed trying to practice what I preach, but to also let others know, who are in the process of a divorce, the children’s well-being need to be considered first and foremost.  Would the children actually be better off if the parents did not get divorced?  How to protect the children from comments not only from within the four walls of their home, but also from mean-spirited playmates?

The potential dangers are of serious concern.  And regardless of my experience as a child of divorce, that does not necessarily mean that I can prevent these things from happening to my children.  But rather, by being aware of them, I know the potential things to keep an eye out for signs.  I refuse to be a parent who claims “I didn’t know”.  So I would like to share with those of you, dealing with divorce and custody things that I have learned or experienced when children are involved.

For most children, having both parents in the home (not being insensitive to those who were brought into family with only one parent), having both mom and dad is all that they have ever known.  Even when the time has come that both parents do separate activities and rarely spend time together as a family, holding hands, kissing, simply cohabitating in the house, the children still see both parents at the same time.  Regardless of the problems, “mom and dad” are still together.  And it is important to make sure that no child ever feels as if they are to blame for the divorce.  And this feeling will develop if not careful to watch conversations around the child.

But when the two parents decide to separate and divorce, it does not take long for a child to figure out that one parent will no longer then be living in the house.  The relationship between mom and dad does not change ironically, because they have been acting in this manner for a long time.  But now the children recognize it.  Unless the children are shown that they will not have to prove loyalty to one parent or another, it will not take long until the children are drawn into the process itself.

My main intent when I left home was to make sure that my daughters understood two things.  Their mom was always going to be their mom, and I was always going to be their dad.  And we made it as positive an experience as I could, that our children would learn that they had two places to call home.

But children, while very intuitive and adaptable, are also capable of making their own opinions, and when you mix children who are about to enter puberty, or are already teenagers, divorce and custody can get very complicated.

As children get older, they already gain independence.  And children who struggle with divorce, have a tendency to grow even more independent.  And that could be understood.  Parents will be taking attention away from their children to deal with the divorce, and children soon learn to rely more on themselves for even the simplest of things.  But there is a reason why we do not let 8 year olds drive cars or legally permit 15 year olds consume alcohol, because they are not capable of making grown up decision.  Yet that is exactly what happens to a child who escalates this independence if not followed closely enough.

Suddenly, those that the children spend the majority of their time with, and not the custodial parent, are the ones who will make lasting impressions as well as enable the hurting child to erroneously make horrific and sometimes tragic decisions.  And it is amazing nonetheless to hear a parent proclaim that they had no idea, when a child’s school grades suffer, bad habits like smoking and underage and unprotected sex occur, and possibly worse, such as issues with legal incidents.

Things to be concerned about and watch for?  Depression, anxiety, smoking and drug use, and sexual activity.  To assume “not my child,” all but seals the deal that they will face those behaviors and activities.

I once kidded with my former spouse, when we first adopted our oldest, that she would constantly come to me first, when picked up from daycare.  After all, my ex was the soft and cushy parent, where as I was known as the strict one.  I explained that it was the security and dependability that she always got when she came to me.  Whereas with a softer parent, decisions are made on emotions, which are neither reliable or dependable.  So it should come as no surprise if either of my daughters should some how now describe me as being unreliable or dependable, because I am no longer with them 100% of the time.  Which is why, I spend each and every day talking to them through Facetime so that daily, they are reminded that  am still a major part of their lives.

It is important that a child knows, that love will never be lost between the parent and the child.  And that is difficult, because their only examples of true love are now in the process of divorce and separation.  And if it can happen to their parents, who is to say it will not happen between parent and child?  Emotional reactions will be determined most likely by their age.  Younger children may have a tendency to regress in behavior while older children may lash out in anger or other harmful behaviors.

Parents have to understand, in dealing with children and divorce, although “grieving” is most often affiliated with death, grieving is actually associated with any kind of loss, and that includes the loss of the family as a unit.  Children are not adults, but they will grieve just as adults.  The important thing to remember is to pay attention to the children even more so than when you did as a family unit.  There is nothing worse than hearing a parent say “I wish I had known” or “I never saw it coming.”

As a child of divorce, I have just told you.

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