Diary of a Caregiver: Next Stop, Rehab

This is the 5th 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.


Grandpa told me that he still had a few more good years in him. He hadn’t given up yet. That was a good sign.

Many family members (who were not grossed out) met with a stellar ostomy nurse at Georgetown University Hospital to learn how to properly care for his stoma. It was uncertain that he would be able to care for it himself. We learned how to sanitize the area to prevent infection, how to empty his bag, how to completely remove the ostomy bag, clean the stoma and how to apply a new one about twice a week. We even practiced with the nurse.

Advocating for Grandpa

When he moved from Georgetown University Hospital to a skilled nursing & rehab facility closer to my parents, we ran into significant issues with this part of his care. The knowledge we gained at Georgetown about caring for a man who was now missing a major organ was put to use in rehab. We were not shy about requesting new nurses, talking to the social worker or even contacting the ostomy nurse at Georgetown to talk to the staff about habitual leaking issues we felt they were not addressing. I’m sure I stepped on toes while advocating for Grandpa. I’m a pleasant person, but can be assertive especially when it comes to getting the proper medical care. But I always remembered to thank everyone who interacted with him…and bringing in donuts every once-in-a-while helps, too.

From Mom, October 27, 2016 – 10 days post-surgery

Update on Grandpa. I visited him on my lunch break today. He was coming out of physical therapy. He was very tired and said he had a bad night. His ostomy bag was leaking so the nurses changed it, his clothes and sheets. I decided to come back about an hour later, and it was the same scenario. They changed his bag, clothes & sheets again. I stayed until he went to sleep. He doesn't understand why he feels so good one day and miserable the next. He wants to feels good NOW!! This process will be an adjustment.

From Me, same day in response to Mom – 10 days post-surgery

I honestly feel that they don't know how to properly care for his ostomy bag. Yesterday when Grandma and I visited, the same thing happened and he had gotten cleaned up. He has the ostomy bag that is supposed to drain into a secondary bag until he can empty it himself. The ostomy bag around the stoma was fine, but the valve to the secondary bag was closed. With nowhere to drain, this would cause another leak. I told the nurse it had to be open and showed her what I did. Should we have them call the ostomy nurse at Georgetown? This never happened there.

From Aunt Laurie, October 28, 2016 – 11 days post-surgery

Another update on Grandpa. I spent the day with him and he is doing well. His ostomy bag was leaking this morning when I got there, so the nurse changed it with me watching her like a hawk. She accidentally reached for the wrong kind of wipe (to clean the ostomy site), and I corrected her (nicely, of course). Lo and behold, Dad's ostomy bag has been adhering all day. The ostomy bag is supposed to be emptied several times a day. The ostomy bag is supposed to be changed every few days. Hopefully this bag will stay on for a few days.

Grandpa hasn't had a full night's sleep since he got to rehab, but he was sleeping when I left today at about 3:45. He fell asleep about 12:30 so he was having a nice long nap. He was tired because he didn’t sleep last night but also because he had physical therapy today. His biggest issue right now is endurance. He can stand up, lift 4 lb weights, and walk a bit but he gets worn out easily. Hopefully that will improve with time. He has a goal of going out to get the morning paper every day!

Everyone keep your fingers crossed that tomorrow he sees more improvement.

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