Diary of a Caregiver: Planning to Go Home

Last updated: October 2018

This is the 7th 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.


My mom had severe anxiety about Grandpa coming home. The entire experience had been long, emotional and difficult. Both of my parents still work. Grandma wants to be helpful but is limited in her own mobility. Mom was exhausted and couldn’t fathom how to balance work, keeping up their large house, making dinner for everyone, taking both of my grandparents to doctor’s appointments and tending to Grandpa. She was facing being a nurse, a housekeeper, a cook and an office manager. It was overwhelming.

At this point, I had returned back home to California and could only help so much from afar. I continued to get updates on Grandpa’s condition and maintained my role as family secretary. I tried to provide support where I saw gaps, like organizing questions, thinking ahead to planning his return home and giving people different jobs so Mom didn’t feel like all the weight was on her.

From Me, November 16, 2016 – 30 days post-surgery

To Mom, Grandma & Aunt Laurie,
I heard you have a meeting with the nursing home on Thursday, and I just wanted to bring up a few things for you guys to think about and plan ahead. Just trying to be helpful because I know it gets hard to focus with all the chaos around.

Maybe a fever

1. Regarding his issue of not waking up at all, it usually means he has a fever. The handful of times where he has been completely uncooperative, won't open his eyes or maybe only grunts at you, he has had a fever. Think about getting either an ear or forehead thermometer for home because he often won't open his mouth when he's like that.

Which leads to another problem. If he has a fever, he needs Tylenol and again he'll spit it back out at you. Maybe having children's liquid Tylenol on hand would be good, too.

A private room

2. In talking to Grandma, the insurance company called and said they approved his move to a private room, but obviously this hasn't happened. If he's going to be there longer, it might be helpful for him to have privacy. He can have a window to help with his time issues and maybe a card table can be set up for his puzzles, which will get him out of bed. I know that Laurie brought him one today that he was working on and was very happy about it.

Ostomy supplies

3. Have the ostomy supplies been ordered through the pharmacy? Grandma said it was approved to be billed through Medicare. How is that going? How often is it leaking now? Daily or is he getting longer usage out of it?

Questions for the social worker

4. Before I left, I told the social worker you guys had decided on a home healthcare provider. She confirmed they do ostomy care and physical therapy. Just check on the status with her so you have what he needs as soon as he gets released.


5. I think we all agree that a routine is best for him to get better, but the nursing home isn't going to actively do that. It's going to be tough when he gets home and he'll continue to have good and bad days.

Lots of changes

Don't get frustrated; he's had a lot of changes to adapt to. The environment he comes home to needs to be caring and compassionate. I mention this because it's not going to be easy on anyone. If you need to walk away, take a breather, go shopping, do whatever you need to do to take care of yourself so that you can help him. I've learned this through watching Kevin take care of me. This is a blanket statement, not directed at anyone!

I love you all and really wish I was there to help out. Let me know if there's anything I can do from afar. After the meeting tomorrow, someone let me know the outcome and I can update the family FB group.
Love- Katie

From Me, November 17, 2016 – 31 days post-surgery

Hey Fam,
I got a report from Aunt Laurie about Grandpa today, so I thought I'd share. Mom, Aunt Laurie and Grandpa had a meeting with his social worker, PT and nurse to talk about next steps.

Looks like they are going to release him on Thanksgiving Day! Mom is planning on doing Turkey Day on Friday- but I'll let her reach out about timing and what she needs help with.

Grandpa is off his blood pressure medicine, which seems to have been giving him added issues. Hopefully that will help his overall condition. The other night both Aunt Cindy and Mom visited him and he was basically non-responsive. His vitals were fine and he was breathing, but sometimes when he gets like that he has a fever. I ordered a blood pressure cuff and a fancy thermometer that will be sent to the house.

His ostomy bag issue has also dramatically improved. It took 2+ weeks to get the right supplies. He's been able to keep one on for at least 2 days in a row (it should only need to be changed twice a week). This is a step in the right direction.

Once he's home he'll have a home health nurse and a physical therapist come to the house multiple times a week, who can help change his ostomy bag, but he'll work towards being able to do it himself. He's able to drain it just fine multiple times a day.

He's still having some confusion issues and "sun-downing." Dad believes once he gets back into his normal routine that it should help.

PLEASE try to visit often and ask what you can do for him or to just help out Mom and Dad. This means grandchildren too! This is going to be a difficult and stressful time when he transitions back home.

Love you all! -Katie

From my brother, Sean, November 24, 2016 – 38 days post-surgery

Grandpa is home and happily sleeping. Franklin and Eleanor (his Siamese cats) greeted him and we'll be having dinner when he wakes up from his afternoon nap.

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