Diary of a Caregiver: Sun-Downing

This is the 4th entry in a series that chronicles my grandfather’s journey with bladder cancer. The following are actual emails or messages in our family’s closed Facebook group where we communicate to each other his progress.


It was crucial to have someone with Grandpa and to communicate with each other as we switched shifts, just like the nurses did. He needed someone to advocate for him. We asked questions, we wrote notes, we asked about alternatives and worst-case scenarios. We never let a doctor leave the room without fully understanding what was discussed. We became fluent in “doctor speak.”

Throughout my own health issues, I have realized it’s called the “practice” of medicine for a reason. Doctors have flaws just like us. It’s ok to ask questions, to ask for a second opinion or to ask for time to think about news that was just delivered. It’s not ok to nod and say ok to a doctor if you don’t understand or have concerns. You are your own best advocate.

Our family had to be his voice

In Grandpa’s case, our family had to be his voice. If we weren’t proactive, we wouldn’t be successful in caring for him when he eventually came home. While this was exhausting and draining, the family worked well together.

He increasingly became confused. Although he was 81, prior to the cystectomy, he did not have severe dementia or Alzheimer’s disease. Correcting him as he told stories that didn’t make any sense only frustrated him more. We learned to just let him carry on and ask questions to keep him engaged. Each time he woke up, he was either totally in the present moment or would start talking nonsense. In this state, he couldn’t advocate for himself, so we had to do it for him.

7 days post-surgery

From me, October 24, 2016
It seems that at night Grandpa is getting very agitated and more confused. It's likely something called Sundowner's Syndrome.

Neurology came in this morning and he passed the basic neuro test (like follow my finger with your eyes, squeeze my hands, etc). He was given 3 words to remember but couldn't recall them 5 minutes later. But Aunt Laurie said she couldn't remember them either! Neuro will continue to check on him since the confusion comes and goes.
He hasn't been out of bed since Wed, so they are going to try to get him at least to sit in a chair for a little bit to build up his strength.

The urologist said this morning that Grandpa is healing well and everything seems to be functioning as normal, so that's good news. They previously talked about putting a drain back in to get out the fluid building up in his belly, but that doesn't seem to be an issue anymore. Again, a positive!

Aunt Laurie will be there for the next few days, but if anyone wants to visit even just for a few hours that would give her a break.

From Aunt Laurie
First, the neurologist was a bit concerned that his white blood cell count looks like an infection is still there. He recommended a urine culture. Second, Grandpa starting sun-downing as of 5 pm and his blood pressure went up. The medicine that has worked in the past to lower his blood pressure did not work tonight. He will be monitored more closely tonight to make sure it doesn’t get worse. They are going to give him something to help him sleep tonight.

8 days post-surgery

From me, October 25, 2016
Aunt Laurie and I have been hanging with Grandpa today. He was cleared to be moved to the rehab facility in Charles Town. His condition was not considered dire enough to require an ambulance transport and we were expected to drive him back to WV to admit him to rehab. Not an ideal situation considering he’s not been completely without incident since surgery.

Around noon, he became lightheaded and very dizzy with even the slightest movement. He quickly became belligerent and uncooperative...a sign something is not ok. His blood pressure spiked, he was dehydrated, and his heart rate increased.

Aunt Laurie and I were very concerned that we were not equipped to help him during a 90-minute car ride. We lobbied hard for an ambulance transfer even looking into paying out of pocket for a private ambulance to transport him.

As we straightened out details, Grandpa improved with medication and water. Of course, when the doctor came in, he was happy as a clam! At the same time the case manager had procured a carriage to escort him to rehab. A huge relief. They just arrived, so we're on our way to WV.

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