Setting Boundaries when Caring for your Dying Parent

"I don't check my email very often so can you just call me with the updates each day?"  I sat at the end of my mother's hospital bed, dumfounded on how to respond.   I was spending up to 2 hours a day calling each person who wanted an update on my mother and felt obligated to do so since these were people who obviously cared for my mother deeply.  They were her friends, siblings and cousins.  People who were praying for her and hoping for her and people who had volunteered to help with her caregiving.  I owed it to them to at least let her know how she was doing, right?

Wrong.

My obligation was to care for my mother and if I was busy updating all these people two things were going to occur...  1) I wasn't going to care for my mother as well as I could and 2) I was going to drive myself into sickness myself.  Neither was a good situation.

So I learned to be firm.  When people asked such things I would just let them know that we were sending out updates via email (and later we started to use caringbridge.com to send out updates) and they could follow that and if they didn't check email then they should find a buddy who did and that buddy could update them.  I was busy taking care of Mom.

I have to admit I felt guilty being so firm about it but people took it well and eventually I learned that it was the best route to take.  We even put a notice on her caringbridge site that thanked people for their well wishes but that we would most likely not be responding to email or voicemails as our focus was on her health and our well being during this life crisis.

There were other boundaries to set too that at times made me feel inhospitable and mean.  When friends had overstayed their visit and I knew my Mom needed to sleep I plainly told them it was time to go -- it was naptime.  I had lots of people in and out of my house to help care for my Mom and I was and am STILL grateful for all their help -- it helped me lead a somewhat normal life and my Mom felt SO loved and appreciated.   However, sometimes it was too much and I needed to protect some of our family life.  There was more than once occasion where I told someone that I needed their help and was glad they were making a trek from other states to visit, but they needed to find another place to stay.  I didn't have the energy or fortitude to be nice to an overnight guest.  I didn't want to worry about changing sheets or if they wanted coffee in the morning in our coffee-less home.

I also had to set boundaries with my time.  I felt guilty when people would come from out of state to visit and the second they arrived, I shot out the door to go to work or sometimes to just get some time for myself.   But that's why they were there.  To help and spend time with my mother ... not for me to entertain them or to see me.  So I needed to get over my guilt so I could better care for my mother when they were not around.

I truly did feel blessed to know people cared and it did make my Mom feel better too but we needed those boundaries and you probably do too.  If you feel mean setting them, refer them to this post and maybe it will help explain.

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