Saturday, May 16, 2009

Advocating for my dad shows signs of hope

My dad's orthopedic surgery is scheduled for Monday June 1, 2009. Dad is 75 years old and has had a tough couple of years.

It has taken a bit of time for the reality of the surgery to set in. What this means is that the Duke Clinic doctors believe that dad will live long enough that his ankles could give out before the cancer becomes an imminent problem. Pretty cool.

Colon cancer pretty much sucks. And then when the cancer mets to the liver, you pretty much start questioning if there is a God. I have never questioned the existence of God. I talk to Him every night and ask Him to give dad both strength and peace to plod along.

Dad was diagnosed in Spring 2007 (two weeks after I finished my intensive cancer treatment for breast cancer). I was by myself in the waiting room when dad was having the colonoscopy. One by one every was leaving. It was almost 5:00 pm and the gastroenterologist called me back to see dad.

My immediate thought was that "I wish it were me. I would be able to handle this much better than dad will." I never wanted my dad to suffer, feel lonely or vulnerable. And I have done (and will continue to do ) my best to keep dad moving forward.

In the last two years, I have seen my dad as weak and vulnerable as a baby. But I have also seen my dad handle every surgery, chemo treatment and hospitalization with dignity and gratitude to each and every health care worker along the way.

Dad thanks the young girl who brings him food in the hospital and makes pleasant small talk with the guy who transports him to x-ray. He thanks every nurse and doctor.

I, on the other hand, had a job to do. My role as care-giver is not abdicated to the medical community when he is admitted to a hospital. Your role as care-giver must similarly continue.

What did I have to do when dad was hospitalized? Here are just a few highlights:

(1) At Duke Hospital in Raleigh, I actually had to address the issue of whether a patient sitter (when I am not present) should order Domino's Pizza to dad's room for her to eat as dinner.

My dad was being treated for pneumonia (after spending 3 days at Duke University Hospital in Durham as dad's Duke Clinic oncologist and the DUH hospitalist had a spitting contest about whether dad needed IV antibiotic. Since the Duke Clinic oncologist has no control over patients he admits to DUH, the hospitalist "won" and dad "lost.") The hospitalist discharged dad without any antibiotics (IV or otherwise).

Dad was at Duke Hospital in Raleigh 4 days after the discharge because he could not breathe and the thought of dealing with DUH at that moment made me physically ill.

Anyway, as the patient sitter was eating her pizza in front of my sick dad, she asked dad if he remembered her. Dad replied "yes." The patient sitter literally laughed and challenged my dad by saying "who am I"?

Oh, I had an answer for that one!! Suffice it to say that I left the patient sitter alone in my dad's room long enough to locate the charge nurse and make certain that the afore-mentioned patient sitter was never assigned to my dad again.

As a patient advocate and care-giver (even when you are with the loved one in a hospital), it is your responsibility to make absolutely sure that the patient is safe (both physically and mentally). Under no circumstances should you allow anyone (whether a surgeon or a patient sitter) to mock your patient.

(2) I "fired" each and every hospitalists that treated my dad with cruelty, disrespect or refused to communicate with dad's oncologist.

Once again, you are not at the hospital with the patient to just keep the person company and finish a pair of knitted socks. You are there as an advocate for a vulnerable human being. Be polite and respectful . . . but never ever forget that the most important person in the room is laying in that bed.

(3) I have been on a first name basis with hospital risk management about hospital errors. I am not interested in filing lawsuits for the mistreatment or poor treatment of my dad. I just want to make damn sure it does not happen again.

(4) I have demanded that any medical staff member who physically hits my dad be banned from interacting with him, My dad has never been violent or belligerent. I cannot even believe that frustrated nursing staff would actually hit and slap elderly patients in this country. Frustrated and over-worked nursing staff have also restrained my dad in inappropriate 4 point restraints for no other reason than they did not want him to get out of bed.

There are regulations about the use and limits of use of restraints. No excuses. These are not prisoners.

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I have managed to handle the bad stuff myself because I really want dad to trust his doctors. It was my way of protecting dad.

I don't know whether I have protected dad. But he is at a point in his diagnosis of Stage 4 cancer where the acute medical issue is dad's need for an ankle fusion. That means that dad should live long enough (with the remaining slow growing metastasized lesions) that his doctors are more concerned that his ankle will eventually give out and he will be injured in a fall.

I guess that means that all of the effort in advocating for dad and dragging him to PT and hanging with him during recovery has been . . . worthwhile. I guess I have done an okay job. Pretty cool.

Please advocate for your elderly parents. Don't immediately write them off as demented and/or a nuisance. Your parents are not the same people as you remember when you were a kid (and vice versa). Take care of your parents. Let your parents into your lives. It won't be easy - especially if they are ill. But, the rewards will be worth more than you could ever dream.



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