Dementia, Cancer, a Colostomy and now a Catheter

My husband had a catheter for 18 months. Fortunately, he had more awareness then.

We were given 2 bags. A large, overnight bag (which we also used daily) and a smaller one for when he went out.

The bleeding will subside. It's from the trauma of having the catheter inserted but I know how shocking it can be the first time.

I hated it at first but it quickly became just another step in our routine. You have weathered many challenges and I appreciate you sharing them with us.

Blessings,
jeh

So sorry for your caregiving overload @jehjeh. I can pass along our experience with my husband’s frequent catheters in his bladder cancer journey. It must be so hard dealing with all this and his dementia. We had success with using a small plastic trash can beside the bed to hang the bag in and catch leaks. Sometimes it ended up on the floor but it’s the best we could do. You may want to set an alarm to empty the bag once at night, or decrease oral fluids in the evening. I think my husband tried every sleep position possible for comfort. As long as the catheter is firmly attached to his thigh it shouldn’t dislodge. Surgery was usually involved so bleeding was normal. Bloody urine looks like way more blood than it actually is. Big blood clots would cause me to call nurse or doctor though. Antibacterial lubrication at the tip of penis is crucial to maintain comfort.
You are a devoted, brave, and loving caregiver. Remember to have a few moments to care for you too. Good luck and stay positive.

Thank you for your first-hand observations. It is always comforting to hear from someone who knows. So far, the clots are relatively small. Today, I have been pretty busy moving things along, so there has been no time to dwell on the possibility of larger clots. With your info in my arsenal, I will not freak out. As a precaution, I have requested home visits by a nurse. Hopefully, that will happen. But I am already trying to figure out a better place to hang the containment bag at night to avoid finding it on the floor. If today was busy, it was not too hard on us. We are old hands at this and still laugh a lot. GloRo

@gloro
I am so sorry for the mounting challenges in caring for your loved one. You have my deepest respect and heartfelt compassion.

I care for my father, who is almost 93. He has a urostomy bag that hooks into a larger night bag. The night bag has an area to place a hanger specially made for the bags. We take a small bucket like you can buy at the grocery for mopping, etc, place a trash bag in it and fold it over the sides, and hang the night bag from the side and into the bucket. That way if there is a leak, dribble, or splash, it is hopefully contained. I change out the trash bag frequently, and spray the bucket down with rubbing alcohol (we have not had leaks in the four years he has been doing this method, so the spray down is ok). Hope this helps a little…..

Thank you for the input. I think it is funny that although I am an expert in some of the aspects of his care, I am still a boob with others. Although only a few days into this new experience, I know the old status quo has changed drastically. Last night, an unused pink walker that I replaced with a rollator for my use that had not been given to Goodwill became part of an improvised "Wall of China" to keep him from trying to get up to go to the bathroom. Boy, does dementia put an additional layer of difficulty to everything. For good measure, I locked the rollator near his feet when the pink beauty proved insufficient. By using them together when I pop him into bed tonight, I hope our sleep will not be disturbed by his mind insisting he has to pee. Also, I ordered some long shorts that unsnap at the seams, protein drinks for a poor appetite, and new elastic leg supports for the catheter because, for comic relief, his colostomy failed in the doctor's office while they were setting him up. So we went home with poop all over it. Sometimes you have to laugh. It is a good thing I have a highly developed sense of black humor. -- You have given me the wonderful gift of knowing that someone else has survived with their humanity intact. GloRo

Dear GloRo,

While I don't have any helpful input on this particular catheter topic, I'd like you to know that you have been my inspiration. As I'm juggling all the caregiving duties, struggling between being on the receiving end of his daily rants (can be very miserable at times) and maintaining my own sanity and positive attitude, you are always on my mind, and this thought of you gives me strength to carry on.

You are an amazing person. Sending you virtual hugs...

Thank you. It is incredible how quickly we become so honest in these posts with people we will never see. It means a great deal to me that my ramblings might be of help. Isolation is the worst, but in these posts, we discover that we are not alone. GloRo

@gloro You’ve been given some very good suggestions by @ayan364364 . I’ll just add a few tips from a nursing point of view , if that’s OK with @ayan364364!
For the Catheter itself: when securing the catheter to your SO’s leg , check that it isn’t pulled tight. This could injure the skin of the end of the penis. Just loop it casually before securing it.
And don’t pull the strap tight. It should be secure enough so it’s not slipping down the leg.
Color of urine: this will sound funny, but nurses and doctors use the colors of wine to describe the color of urine! White Zinfandel for light yellow urine; rose for urine with a small amount of blood; burgundy for urine dark with a lot of blood, may also have some clots.
If you’re not sure if you requested a home care nurse’s visit, just call the doctor’s office again and repeat your request. This nurse will be very helpful in teaching care of the catheter.
You’ll catch on easily! You are doing a great job!

Thank you, whoever I should thank. LO and I both got a good night's sleep. The Wall of China, made from an old walker and a dining room chair, worked. With that bit of difficulty to overcome, he forgot about leaving the bed for the bathroom to urinate while dragging along the catheter. -- I gently pestered those who put a visiting nurse in place, so we look forward to seeing her this afternoon. -- Something that may be helpful to others in this situation. In the doctor's office, the colostomy bag failed while all were frazzled because it took five attempts before the insertion of the catheter was successful. Somehow, with a focus on cleanup, a fresh leg band was forgotten. Kudos to Amazon: new bands will be delivered to our door, along with knee-length pants that snap apart at the sides to simplify the process of clothing with a catheter. Often, I am amazed at how informative a Google search is on a thing that, before searching, you did not even know existed. -- Along with my morning coffee before the official duties of the day begins, this chat is part of that famous "me time" that is legendary in these posts. I have come to realize it is the "me time" quality, not the quantity, that counts. Again, thank you all. GloRo

Dear @gloro

I always look forward to your posts and just realized it's been a couple of weeks since you last posted. As a fellow caregiver I know how busy life gets and sometimes there's just nothing to post. I just wanted to let you know how uplifted I am by your words. I hope this has been a calm stretch for you (relatively speaking, of course) and that the catheter situation is getting easier.
Blessings,
jehjeh