Incontinence and GBM

 I’m going to talk about one aspect of Glioblastoma that most people don’t talk about - urinary incontinence - and what to do about it. I am in several Facebook groups and I know that it is talked about there. But like a lot of Glioblastoma discussions, I had a hard time navigating the many discussions to find a solution. Here is what we have done and tried:

My loved one developed incontinence months ago where it started as “I have to go RIGHT NOW.” It would go from 0 to 100 and work itself into a frantic frenzy to find a restroom. At this point, we had been traveling quite a bit and it made traveling frustrating for me. He finally got to where he carried a urinal in the car. This helped, but I kept thinking, “Help! What if someone drives by and sees?!” So then we added a blanket or jacket to put over the top of himself while he did his business.

After his last surgery, he lost control at night. He also was no longer walking. I started taking a log and noticed that he was going every 30 minutes to an hours ALL NIGHT LONG. I seriously was getting no sleep. I was mad, frustrated, and wanted to sleep through the night, but he was unable to go unassisted.

At first we tried Depends and quickly found that those didn’t work for the amount he was going. We had a king size bed and because of his weakness, I could not get him changed for the life of me. He was too heavy for my small frame. Changing a king size beds multiple times a day also was not going to work. Those mattresses are heavy! Twin it is. 

Then we tried a condom catheter inside a Depends. But he would pull it off each night. I think it came off with all of his rustling and turning over. That didn’t work. So I bought a different type of condom catheter. Let me just say ... it was SUPER sticky. I mean...it was glued on there. We had tested it out in the day and although it worked, it took 45 minutes of work and panic to get it off. I pictured myself calling the firemen and saying, “Help. I can’t get my husband out of his condom catheter.” Really. It was glue. It scared me. I wasn’t going to try it at night. But then I heard that rubbing alcohol helps. So I tried it on him again, in the day. No. Rubbing alcohol didn’t help. It was glued on again. Panic. Poor guy! Then I heard there was a skin adhesive remover that works so I bought it on Amazon. Did it work? Well, it cut the taking off time down to about 15 minutes instead of 45. 

So we focused on bed pads. I purchased some washable pads on Amazon which I highly recommend. We changed our king bed to a twin and I bought a rail. It was easier for me to turn him over in a smaller bed and I needed the rail because he was falling out of bed in the night. I pushed the twin up to the wall. I recommend buying a lot of pads. Sometimes I have to change them a few times at night in the day. I am constantly washing them and they are holding up. Put one directly on the mattress (covered with a waterproof lining) under the first sheet. Then put one under the person on top of the sheet. This way you can change out the pad only. My husband seemed to think the pads were “blankets” at night and would pull them out and cuddle them. So, I had to buy larger pads or double them so they covered the full width of the twin.

I bought pads to put in the Depends. This has also helped. But he has never wanted to just pee in the Depends. Who wants to stay in dirty pants all night or change them all night? So we tested bedside urinals. The regular urinal did not work for him. He was too weak to sit up and when he would use it, the urine would just fall back on himself. It was more than a mess! So I bought a different type. It is HERE. We then had a problem with the base. It would tip over, or our dogs would attack it. Then it leaked out. So I had to put the base in a foil tray (like you serve food in!) and on the floor under the bed. The top portion sits on his rail. The Depends are there if needed...and many times they help when he is too tired to find the urinal. 

The urine smell then started over taking the room. Northshore Care has disposal bags and pails that work wonders. I also bought some of their tab style Depends for travel so that when he pulled his pants down and has to change, they rip right off. In order to clean the urinal, you can use soap/water and add a little bleach. You can also use vinegar/water/and baking soda. Let it sit 30 minutes, then pour out in the toilet. I also purchased a Pura for the hall. I love it! My favorite scent is Volcano and you use an app to post a schedule. I highly recommend it.

Finally, buy yourself gloves. I keep a box by his bed. Be careful when pouring urinals in the toilet. It can splash up! Yes. Christmas Day I put on a new sweater and poured out his urinal leaning over too far. It splashed up on my new sweater. Eww. Extend out your arm and look away. 

In a nutshell, here is what we do:

Night: Pad on mattress, pad on sheet, Depends with extra pad, urinal on side of bed, bed rails

Day: Use the urinal. If we are traveling or where I cannot assist him easily, we use a condom catheter. If we aren’t going far, we’ll use the regular ones. If it is all day, I use the ones that really stick and then use the skin adhesive remover. 

I hope all this info helps some of you! And I hope you don’t need it as well!