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Thank you so much, Nightingale! I really appreciate your information and support. This information confirms what a friend who is a former Home Care nurse told me and also provides more information about supplies and ordering that she was unsure about. We were very thankful that a pharmacy delivery came a couple days before Christmas with a few more supplies that will probably get us through to January 3 when they attempt to remove the catheter again. It is also helpful that the night bags they provided this time are a consistent kind as it makes it easier for my parents to learn how to empty them.
Crossing my fingers that this next attempt is successful. (Although it may bring with it more challenges as dad is only producing about 500 ml all day but over 1000 ml each night and the more times he has to get up each night, the bigger the risk of falls.) As my dad says – the “golden years” where the only thing “golden” is your pee – except when even that is not. LOL!
Carebearit
Hi,
Finally getting back with some follow-up new about my dad. Dad came through his TURBT okay. They removed all the cancer they could see – which was a lot – and were able to unbury his ureters. It was a long day as when I called the OR to check on dad, they said someone would come out to speak with us and let us know which room he would be admitted to overnight. No one came and we sat there until nightfall worrying. I finally had to go wondering the floors looking for him. They were most apologetic but it made for a rough day. I ended up requesting that they keep dad an extra day so he could be seen by physio as he was very unsteady on his feet. They recommended a better walker for him and made arrangements for Home Care as he had to go home with the catheter.
Dad’s physical recovery has been very slow and at times it has been very disheartening for him. All of us underestimated how much this surgery would take out of him. He had three falls in the first two weeks home and many near misses. The Home Care OT was wonderful and set dad up with some equipment so he is as safe as we can make it. The nursing support has been not as great. Given his frailty they did relent and not make us drive him to a clinic for care but the home visit nurses are swamped and we never know if they will answer our calls, what time they are coming or even if they will show up. They provided no teaching to my parents or myself. I had to google it and ask a friend who is a nurse for advice. Dad and mom were unable to manage emptying the bag independently and swapping day/night bags was totally beyond them. I ended up having to move in with them for a month. Two weeks in, when the nurses attempted to remove the catheter again, dad lasted 1.5 days before he became unable to pass enough urine. The nurses were informed but decided to leave it until morning. When they finally arrived and put it back in, they removed 1 L of urine. Not impressed – next time I will insist they come! After this they decided they no longer needed to make home visits until the next try to remove it even though my parents could not manage emptying the bag. They left me with one spare bag and refused to order any more telling me just to rinse the old one with well water once in a while. All the information I had read suggested putting a vinegar/water or bleach/water solution in the bag to sanitize it when doing bag changes and the hospital had told me Home Care nursing would be coming out to put a new bag on each week. The nurse denied all this. I ended up having to insist and they have agreed to provide more bags and continue weekly visits but so far the visits seem to be only checking his vitals – they don’t touch the catheter. I’ve had to return to my home but make daily calls and drive out to check on my parents a few times a week. They are just using the night bag 24/7 and empty it (with difficulty) once or twice a day. They are on the wait list for home making but it will be many months before they get to the top. A PSW has finally been arranged to help dad with showering twice a week. It was a very rough month.
The urologist delivered some great news and some potentially not great news at the follow-up appointment. Dad’s cancer is not muscle invasive and low grade! We are so very thankful. A follow up cystoscopy in three months but otherwise no additional treatment. The not great news – the difficulty urinating may be from either the bladder or the prostate or both. We will try to remove the catheter on Jan 3 but it could be many months or never that he will be catheter free. That is very difficult news for dad to hear. One day at a time…
Anyway, sorry for the book. Thanks for all of the advice and support.
Thanks so much for the welcome Nightingale! And thank you also for letting me know about the support group meeting. I’m not sure if I can make it in person but might be able to do Zoom. I’ll private message you.
Thanks so much,
Carebearit
Thanks so much marysue! It was exactly the type of information I was looking for but could not find online. The bucket idea and picking up a sampling of incontinence products – genius! I’ve already shared some of your tips with mom too. I’m feeling a lot more confident and prepared now. I really appreciate that you took the time to share your experiences. Thanks so much!
(((hugs)))
Carebearit
