Category Archives: drugs

Speaking for Your Dying Parent to Medical Staff

IMG_4069As my mother became weaker, it became difficult and exhausting for her to communicate with medical staff. Different doctors would ask the same things over and over. Trying to be polite and also attempting to make sure each doctor had the information they needed to effectively treat her, she tried to answer the best she could. But it was exhausting and exasperating. Breathing and living were difficult some days. Adding repeating yourself repeatedly was beyond difficult and it seemed a waste of energy.

Because I spent so much time with her I had a decent idea of what the answers were but I didn’t want to speak for her and get it wrong. Eventually, a system evolved though.

Doctors would ask questions and I would answer for her but then let them know that if I got it wrong she would correct me. I paused occasionally and turned to her to ask if she agreed. At that point, all it took was a quick nod to confirm. It was much less taxing of her energy and because I had the energy to expand, the doctors got a much more comprehensive answer.

Other tactics to ensure doctors got the answers they needed were:

* carry our own copy of her medical history for reference
* have a quick reference sheet to hand to the doctors that they could keep that included current drugs, brief history, and latest status
* always ask for a copy of the medical records when we left so we could keep a complete history (did you know that you can ask for a cd for yourself each time you get an MRI or CAT scan?)
* utilize the help of nursing staff as they sometimes have more time and are more willing to give info than physicians — make friends with them!
* be nice. This seems like such a common sense thing but medical staff are frequently verbally abused because they are facing frustrated caregivers and patients. Being nice but firm will get you much further than screaming though.

My Mom called me her bulldog and meant it in the most complimentary way. I spoke for her and made sure that she got the care she needed. Its true that the squeaky wheel gets the grease and when you are sick its hard to be squeaky.

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Drug Chart for Caregivers, Doctors and Helpers

As my Mom’s illness progressed, more and more drugs came into our lives.   I started to get an education in medicine I never wanted.   Over and over again I had to tell each new doctor which meds she was on currently and which ones she had been taking.   My Mom tried to keep the drugs straight and take the right ones at the right time but her health was compromised and sometimes her judgment so it was difficult for her.  To further complicate things, many neighbors and friends were helping care for her and they were not familiar with the various drugs and when they should be taken.

I eventually came up with this Excel spreadsheet to help me track them.   I printed one off each time we visited a doctor and handed it to them when we arrived.  I provided a date at the top so there was no confusion about which version was the most up to date.  I also put a copy under her meds in her bedroom so as caregivers came in they knew the most current information.

Doctors loved it.  Don’t assume they know exactly what your loved one is taking.   At some point there will be multiple doctors involved and each are prescribing different items.  Its important your loved one have a primary caregiver who is the central point of information and this chart helped me immensely. By the way, the link is to the last updated chart before her death so it may give you a good idea of potential drugs your loved one may be taking if they have pancreatic cancer. The one shown below is a version modified to fit the space of this blog. Medications that are bold are ones she was taking currently.

Link to Spreadsheet with actual drugs she was taking and a second tab with schedule

Medication dosage What to Take What it is For When
lidoderm patch 5% pain patch as needed 12 hours on, 12 hours off
advil 200 mg pain 1-2 tablets as needed
oxycodone 5 mg pain 1 tablet as needed every 3-6 hours
Coumadin/ warfarin 1 mg blood thinner 3 tablet daily dinner
levothyroxine/ synthroid 112 mcg/175 mcg thryroid 1 x per day morning
omeprazole dr 20mg acid pill 1 per day morning
metoprolol 25 mg irregular heart beat 1/2   per day morning
miralax single dose laxative 1   dose morning
lasix 20 mg diuretic every   other day morning
senokot stool softener 2   x day morning/night
pancrelipase 5000 usp units digestion 1   with each meal
zofran/ ondansetron 4 mg 1st nausea 1   tablet as   needed
glucophage 500 mg 1   tablet twic daily