Week two is a blur now. It was chaos. We were completely unorganized and not ready for things to change on a day by day basis.
We were writing down meds on scraps of paper and notepads all over the house. Hospice had fedex'ed in a whole bunch of new medications and supplies.
An important point to note and another recurring theme ... Mom is a retired RN.
Each new hospice person that walked into the house would say - ahh so this is the retired RN -- with a knowing glance.
This meant that every new medication was up for discussion and research and plotting and planning.
Initially this was ok. Mom had her reasons and she was lucid and concerned.
But it delayed her getting started on much needed, longer acting pain medications.
The up and down cycle of the percosets is not conducive to long term pain management.
We finally talked her into trying a long term (3 days) low dose (25mg) fentanyl patch for pain. The patch was started on my wife's shift. Mom and she had a good laugh as the two of them tried to figure out how to get this tiny, little, sticky, clear patch out of its packaging and onto mom's arm. Laughing is good. We are thankful for the times we have been able to laugh this month.
Unfortunately, a day later her pain, nausea and dizziness had us contacting the on-call nurse late Sunday night on August 8th. This is a great thing about Hospice. They will send a nurse if you need one. Anytime.
It was a hellish night ... mom was curled up in bed as we all waited in the kitchen, we paced, we drank coffee, we drank wine - we would have smoked if anyone had cigarettes, damn I miss the 80's sometimes.
At some point while waiting for the nurse we had the bright idea to remove the pain patch. This helped tremendously.
An RN finally arrived around midnight. She did an on the spot foley cath to relieve pressure and got Dr's orders to switch pain meds.
That was when we first started taking shifts spending the night over there.
We also came up with a plan to spend most days over there as well, with my ever-patient wife and I sharing the day / night shift initially.
We were so not prepared for so much to happen so fast. We were just trying to keep up.
On the 9th I designed (the first of many versions) a simple excel template to chart medications and symptoms. This made it easier for us to change shifts and keep track of the ever changing medications.
By the 11th, when her regular RN came for her scheduled visit she walked in and took one look at her and put mom on Continuous Care**. This was to help get her symptoms under control and to have an nurse on site while we started new meds.
That evening, with nurses staying the night, we started mom on Methadone.
Having overnight nurses also allowed us to come home and get some sleep... at least for a couple nights, while during the day my technically-employed-wife and I were able to work right from mom's spare room. (we both work for wonderfully family oriented supportive companies.)
By the 13th - her methadone was upped to 5MGs/q8. Zophran was added as a scheduled med as well to control nausea.
**Continuous Care is when hospice identifies a medical need to have 24 hour care in the home lead by a nursing staff.