Diary of a Caregiver: A New Normal at Home

Last updated: November 2018

This is the 8th 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.


This entry crams in a lot. There wasn’t as much written correspondence between the family. I’ll fill in the gaps as we go along.

From Grandma, November 30, 2016 – 45 days post-surgery

Grandpa has seen a nurse, occupational therapist, and an aide. Next will be a physical therapist. He is on track and slowly improving. The aide helps him with personal things. He will have about 9 weeks of home care.

From my Mom, December 6, 2016 – 51 days post-surgery

All hands on deck!! John [my dad] has to have shoulder replacement surgery next Wednesday.

John has been so good at helping Grandpa change his ostomy bag and clothes if there is an accident. He isn't as independent yet as we had hoped. That being said, I will need help with him for a few days after John's surgery. I do bring a Meals on Wheels lunch home for him every day, but he is not eating regularly. Any help or suggestions will be greatly appreciated.

From Grandma, January 5, 2017 – 61 days post-surgery

Grandpa has been let loose!!! No more nurse, physical therapy, aide or occupational therapy. He was released today. He has follow-up appointments shortly. He is walking to the mail box daily and doing most things on his own. He's not driving yet, but he is up an about in the house and doing well.


Grandpa continued to make a steady recovery. His regular routine includes: walking down the driveway in the morning to get the paper, watching the Price is Right (a pastime I remember fondly from my childhood), then fixing lunch. A 3-hour midday nap is a necessity. He hovers in the kitchen around 6pm and sets the table. During baseball season, he joins my parents in watching the Orioles and the Nationals games. Bedtime is around 9pm, but not without a bowl of ice cream first. When he’s feeling really good, he goes up into the attic to work on his model train set, a hobby he’s had since before I was born.

I was home for about a month at the beginning of the year, partly for my own scheduled hospital stay in Philadelphia for my chronic migraine disease. I was able to witness Grandpa’s health improve. He had learned how to change his ostomy bag and rarely had issues with leaking and his stoma was happy and healthy. The family did not expect chemo to be the next step, yet he was quickly set up for a 16-week schedule. My Aunt Laurie explains his schedule.

From Aunt Laurie, March 23, 2018

Grandpa has 3 weeks of chemo and then a week off. This schedule will repeat for a total of 16 weeks. Every off-week, he will need a blood test. He goes for a pre-treatment blood test on April 4, 2018, then chemo is scheduled the next day. We really do need help getting him to his treatments and his blood work appointments. Any help would be greatly appreciated!

From Aunt Cindy, April 20, 2017

I took Grandpa for his 8-hour chemo treatment today, but it didn't happen. His blood pressure was extremely low, so I had to take him to the emergency room instead. He was dehydrated so they gave him some IV fluids and they were able to stabilize him and send him home. He will have to have the long chemo next week and Aunt Laurie will take him for that one. We have hired a student nurse to help out at home. She comes 2-3 days a week for a couple of hours and can help take dad to some doctor appointments. Any donations would be greatly appreciated to help pay this expense. It is not covered by insurance.

As you know, Grandpa took a fall the other day. He goes to the orthopedic doctor on Monday for his hand.

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