Diary of a Caregiver: Why Won’t This Thing Work?

Last updated: August 2018

This is the 6th 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.


I’ve been away from home in California for over 3 weeks now. I was neglecting my own health, running on adrenaline. I wasn’t the only one. My mom and my aunts were still rotating Grandpa duties. I had hoped that it was going to get easier once Grandpa had moved into the rehab facility since it was only five minutes from my parent’s house. That was not the case.

From Me, October 30, 2016 – 13 days post-surgery

Hi Everyone!! This will be a lengthy update, FYI.

Since being at the rehab facility, it has been an everyday battle to keep him dry. The ostomy bag, which should only need to be changed 2x per week, is being changed daily because it continues to leak. This is a major problem, with worries of infection, skin irritation and constant changing of his clothes and bedding (which can be an hour-long ordeal). Mom and I went to a meeting on Monday with the case worker, head nurse and physical therapist- Grandpa was also there. He voiced his opinion saying, "I don't understand why I didn't have this problem at Georgetown and you guys can't get it right." Well said, Grandpa!

Fixing the problem

In the meeting we all agreed that fixing this problem was top priority. At our insistence, they consulted the ostomy nurse at Georgetown who was so helpful in teaching us how to change the bag.

Our theory is that the supplies they have are not correct, which is causing the leakage. We have been reassured that they are have received proper training in ostomy care, but it’s not been evident. The goal is to get that straightened out today. Our confidence in some of the staff is reaching a breaking point.

Grandma left a message for Grandpa's local urologist to see if we can connect with him to assess the issue. Grandpa has a follow-up appointment at Georgetown with the surgeon on Nov 9th, but this can't keep happening until then.

In good spirits

On other fronts, he is doing physical and occupational therapy. He gets tired extremely quick and tends to sleep the day away. But it doesn't stop him from sleeping at night either. He can walk to the bathroom to empty his ostomy bag, and he likes getting in the wheelchair to go around the facility or even outside to see the ducks. See picture below.

Katie next to her grandfather in wheelchair outdoors

Overall, he's in good spirits and is having less of the sun-downing issues. However, he has to hydrate and work on endurance. It will be a little while before he is ready to come home.

Aunt Laurie has been here the past 2 days, which has been very helpful. I am going to stay through next Mon, Nov 7th in order to hopefully get this straightened out.

Please come visit. When you do, check his bed to make sure it's dry. Make him drink water. Make him eat a snack - he's not been consistent in eating, and he needs strength. Also, take him for a stroll in the wheelchair.

I also want you all to see this video done by a teenager who has an ostomy bag. If you can't handle ickiness, don't watch. But it will help everyone to understand more about the problems we're facing.

Fingers crossed we make progress today.

From Me, November 3, 2016 – 17 days post-surgery

We may have turned a corner today! We've been struggling getting the correct ostomy supplies. The correct ones were ordered, and one piece came in today (the other should show up tomorrow). Upon using the new wafer that goes around his stoma, he was dry from 11am to 8pm when Mom and I last saw him.

This is a HUGE milestone. His clothes needed to be changed 3 times a day for the past 8 days. If we can get this under control, he can focus more on getting stronger.

Today he slept the majority of the day, but we did go check out the ducks. Who wants to come visit Grandpa this weekend? He could use some new faces, and Mom and I need retail therapy.

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