Paul's Heart

Life As A Dad, And A Survivor

Caregivers… Where Would We Be Without Them?

November is National Caregiver Month.

There are two main participants in a battle with cancer (or any serious illness really – but for my experience and this post, I am referring to cancer), patient and caregiver.  The patient is the obvious.  But when we think of caregiver, we often gravitate to the definition as either the doctor or the nurse.  But there are so many others who willingly, and unwillingly take on the role of providing care and comfort for someone battling an awful disease.

It takes a special person to take on the role of caregiver, no matter what the capacity, especially when it comes to a loved one fighting one of the major killers.  When I battled my own cancer, Hodgkin’s Disease, I chose my oncologist simply on the fact that he treated and cured my grandmother of her breast cancer.  That was good enough for me until I got to learn his bedside manner, or should I say lack of any.  He was a good doctor, do not get me wrong.  But I just could not feel that he cared about me.

It was my social worker who pointed out something that I had not taken into consideration.  Stop and think, this man has to deal with death every day.  Some of his patience survive, and some do not.  He has to “disconnect” emotionally from each patient because he cannot afford to be emotionally distracted or crushed when something goes wrong.  From that day on, I developed a totally different appreciation for his care.

My oncology nurse Brenda, there was no better caregiver.  She took care of me as if I were her son, with the care, comfort, and consolation.  My social workers, Ilona and John provided the emotional support I needed.  Yes, I was surrounded by caregivers.  That was their job.

I will be the first to admit, I am a horrible caregiver.  I am a much better patient because as a patient, I can guarantee that I am going to take charge and get through whatever crisis I am dealing with.  But as a caregiver, I must push the patient to do what I feel that they can do, what I need them to do.  And if they cannot, I feel as much pain as they do, and then take on the guilt as if I have let them down.

When I completed my treatments, I made the decision to give back, by counseling cancer patients and their families.  I definitely did not plan for my first patient to be a child, who had a fatal diagnosis of the cancer that I had beaten.  While I had been trained for that situation, for it to have been my first patient, was the most difficult loss I had ever faced.  I soon realized how my oncologist must have felt with each of his patients.  You can see this whole story on the page “Jennifer’s Story”.

My first caregiver was my first ex-wife.  She was there right from the beginning, when I told her I had cancer.  That is right, when I told her.  She could not bear to be with me, when I faced the diagnosis.  Nor could she handle being with me for my treatments and when I got so sick from the side effects.  Please understand, I could not hold her reactions against her.  She clearly was not able to handle the role that she had been thrown into.  That does not make her an awful person.

But decades later, I would be the one thrown into the caregiver role, along with my brother.  Again, neither of us had volunteered for it, but it was something that we both knew we had to accept.  We each had responsibilities, my brother the financial aspects, and me, medical support.  Together, we had to get our dad through his diagnosis with lung cancer.  What we did not expect was the nightmare that followed his surgery, two strokes that left his cognitive ability in question.  Were it not for both my brother and I being in his hospital room with him, the doctors would never have known that he had suffered those two strokes.  A simple mozzarella cheese stick mistaken as a carrot led my brother and I to realize something was wrong.  My dad swore that “the carrot” was so soft, yet chewy, and there was no convincing him any different.  My dad likes to laugh and has a pretty good sense of humor, but not that type to mess around with his care, especially after having half of his lung removed.

There were a lot of difficult decisions that my brother and I had to make.  My father would not be able to take care of himself as he often had dillusions.  He also could not care for his wife who he had cared for, for the last several decades as the result of an auto accident.  We had to care for both of them.  We had to figure out, who was going to watch them, where they would live.  And in my dad’s case, what about the cancer treatments yet.

The hard part for my dad to accept, being a proud man, was having to rely on someone else.  Especially when it came to driving.  He was not going to be able to drive for a long time, until his eyesight and judgment could be confirmed.  This would result in us seeing his temper and frustration, because anything we offered to the doctor impeded his progress and eventually regaining his driving privileges.  So as you can guess, in spite of my brother and my efforts to get him through and recovered, there would definitely be times that we felt what we were doing was thankless.  We knew that it was not, but it did not spare our feelings knowing that.

And that is the price that comes with being a caregiver.  Being a caregiver often means having to make the difficult decisions when the patient cannot.  Caregivers often have to be the driving force encouraging their loved one to fight harder.  Caregivers are the first ones to shed the tears when the doctor comes out of the operating room, “we did everything we could…”

None of us want to ever have to be a patient or a caregiver, but when we have no choice, the majority of us will rise to the occasion.  Parents of a three year old boy will leave no stone unturned to find a cure for their son’s cancer.  A collection by co-workers to let their “friend” know that they have not been forgotten.  A mother having to ride a roller coaster celebrating the defeat of cancer, just to face another major setback, leaving her entire world turned upside down, but all of her thoughts are put into getting her son to come home.

The role of caregiver is performed by many, in any capacity, meeting any need.  It is important that we realize and recognize the valuable role that these special people play in our lives.  We do not ask for the illness, and they do not ask to have to deal with the illness.  But we take on our roles, hopefully with minimal negative feelings, and we get the job done.  We recover, not just the patient, but the caregiver as well.

So tonight, I raise a glass and thank everyone who has taken on the role of caregiver, the most selfless and thankless, but most important aspect of getting us through our toughest ordeals.

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