I’m So Pissed I’m Steaming

Last night I smelled something wrong when I went in to check on Al. It smelled highly of urine. I checked the catheter bag and it was empty. With the help of my friend being here we started investigating Al’s body.

His shirt was soaked in urine. I called  Hospice and informed them of the change. They sent a nurse out with the intention of changing the catheter and accessories.  I want to add that I have asked a few times if Hospice could change his catheter more than the normal once a month and they have refused. With the illness attaching itself to the internal tubing. I think it should be changed every two weeks, but it is against policy.When she arrived she did what she needed to do but ran into a snag.

The catheter was stuck inside of Al. Now, I want to back up to a couple of days prior. I had reported to the nurse twice that Al has stated he has to pee but he can’t. I have also said to Hospice that Al has a liquid coming out of the tubing going into his penis that looks exactly like KY Jelly.

Nothing was replied back nor checked into. So I have now come back to last night. The nurse tried and tried to pull the tubing out of Al but the tubing was stuck. She contacted another nurse who said she didn’t know how to  help.

She called another nurse who did come out. Together they pulled the tubing out. There was some bleeding but the nurses repeatedly told me there may be a little bit of bleeding but it would stop by morning.

This morning when Al was checked there was blood running down between the legs. There were blood clots at the top of the tubing. He is still bleeding and complaining of burning. The catheter bag itself, is filled with blood about 250cc.

I immediately called Hospice and asked for a visit. The regular nurse was not in. Another nurse got on the phone and said this was perfectly normal. According to the two nurses that came out last night made comments that in all their years of nursing they had never seen this happen.

The illness of M.S.A. had attached itself to the inner tubing, and so when they tried to remove it through the small opening of Al’s penis it wouldn’t budge without being pulled. So now as it stands, this isn’t the normal day Hospice would come out.

The  nurse said to me on the phone today that if she had to come out it would not be until later this afternoon. Then she said this is so normal that Al could bleed all day today and tomorrow.

I asked her repeatedly where the entrance of the tubing inserted to. I knew  the answer but I wanted to hear hers. She kept saying the tissue. I said what tissue? Where is it going when it is inserted?

She then stated, ” I will have another nurse call you.” I said, ” I asked you where the tubing went into.” ” Into tissue.” In the end she said, ” Well do you need a nurse later this afternoon or maybe you could just keep an eye on it and let us know if you see anything odd.”

End of conversation. No nurse coming. Al bleeding. I am so steaming pissed off I could blow steam out my nose. I can’t even change  Hospice at this point as Al is too close to death for any change.

purple candlesHere is a clip from a web page My Health that I am pasting here to let you know I am not just over reacting.

As stated above, trauma is an ever-present facet of catheterization. However, there are rare cases when the catheter has caused some sort of physical damage either because it was too thick or if the balloon was overinflated for an extended period of time. In either cases, contacting your physician as early as possible will allow you to get the condition checked out and fixed.

With regards to an infection, physician attention is critical. The urinary bladder is technically supposed to be a sterile area. If an infection were to occur within it, you will become sick and will need to be put on a course of antibiotics to be treated. The longer a urinary infection remains untreated, the more difficult it will be to remove it. The presence of blood in your catheter bag in tandem with a urinary tract infection will open up a pathway for the bacteria to cross into your bloodstream, so you should contact your doctor immediately when you detect heavy amount of blood in your catheter bag.

69 thoughts on “I’m So Pissed I’m Steaming

  1. I would be on the phone to his doctor so fast it would make your head swim!!! Then I would call an ambulance and have him taken to the hospital immediately to repair the damage done. I know it is an expense but to die due to such a trotous disease is one thing but to die due to negligeience is a lawsuit I would be filing too. This “hospice” sounds like rejects from some half rate nursing school that filled their heads with importance and no compassion. No catherter should ever be left in for a month when there is ANYTHING coming from the tube. I know as my hubs wears one daily!


  2. 😦
    Sorry if this is a stupid question. But – with this type of situation – can you call 911? Or – once you work with Hospice – you are supposed to stay that route? Pardon my ignorance. I don’t know how that works & just trying to think out loud at anything that could possible help.
    {Hugs} to you
    {Hugs} to Al


  3. The blood is NOT normal…Call Al’s doctor! If they did not deflate the balloon completely, it can hurt when removing. MSA does NOT attach to tube ???? MSA affects the brain. Your post is scary with the miss information they are giving you. So sorry


  4. What I don’t understand is how bleeding can be considered “Normal”, especially when occurring at this pace. These organisations are beyond belief sometimes. Is there any way to report them later? In the meantime, I trust the bleeding won’t lead to an infection there too, that’s the last thing he needs. Hopefully this will clear up soon. It’s so easy to forget that this is another human being’s comfort involved here it seems, and that’s what’s most terrible about this.


    • I am sure I can when this is over. I don’t want to as this is not my style. I just want what is best for Al and I want him in no more pain than possible. It is so very hard to watch these last few days


  5. I agree with others who are saying: (1) call the doctor; (2) get him to a hospital. This IS about palliative care – not allowing a situation that could create more pain. I am so so sorry you and Al are going through this. My heart aches for you! I wish we were all there to advocate with you and for you. I would also be making calls to supervisors and this point and documenting everything you have put on this blog – dates, times, conditions reported, responses and interventions and the results of those interventions. I am at the beginning of this journey and am learning that so very few medical professionals understand MSA. Please call the doctor if at all possible, Terry! I am praying for you!!


    • I wish you were here also. The care giver has gone home. My friend has gone home. It is quiet here except for Al’s moans and tears. A very nice nurse did come out today and brought some peace to the two of us


  6. Personally sweety at this point they are not helping you any at all. I would call for an ambulance and have him admitted to a hospital with staff and doctors that actually care and know what the heck they are doing. They could give him any antibiotics he may need and have compassion doing so. Not to mention inserting the catheter properly and not leaving in for a whole month. It sounds like they are doing anything they can to make him die faster. And giving you the run around just because they feel they can. Al may not like being in the hospital but making his possible last days as comfortable as possible is what is important and this is what Hospice is supposed to do. Obviously Al is not comfortable. You choose to do what you would think best for your brother but me I would ditch hospice and go back to hospital for his remaining days if possible


  7. I agree Terry. Call 911. Hospice can’t stop you! His care from hospice is the worse care I’ve ever heard of. Changing once a month! It should changed even every day if that’s what he needs! I totally believe in keeping patients home, but in this case, it’s hurting your brother. Please get him to a hospital where they will make his last days comfortable. What hospice is doing to him is way too cruel! He shouldn’t be made to die like that. Trauma from a cath is a very painful deal. For your sake, please call 911. Al deserve to die in comfort, not in agony. Please, please do it and real quickly. I feel so bad for Al. A couple more hours is too long, and btw they are dead wrong about the bleeding!


  8. This made me cringe at how much distress it would have caused Al. I think you should (while still in your memory) write down exactly what that nurse said – along with her name. Once this is all over, I think you should make a formal complaint to the management of the hospice. Doing so now may be detrimental to Al’s “comfort”.

    You are both still in my thoughts (and prayers when I do remember – it is difficult to remember as I don’t actually pray)



  9. I am in total agreement of everything already said, so I won’t repeat. I sincerely hope that things improve now, and I’m so glad you have the support of your friend and the nurse that is trying to sort this out. Poor Al and poor you. Hugs.


  10. By now it’s late in the day… I know you are in the middle of it and so are compensating for the hospice workers and I totally understand

    If I perhaps would have to face such an issue.. I would be tempted to phone 911 .. I know you don’t want to move him unnecessarily so I would hope to talk to the Emergency crew that came and tell them what Hospice said… hoping they would be able to contact the ‘powers that be’ to kick their ‘a$$’s . and get someone out to the house asap… It’s easy for me to say these things .. I know… but for you it’s more difficult.

    I don’t care if it’s the middle of the night…. someone has to come. Al is still living (while near death) and is in pain and discomfort. This would not be allowed in a hospital..neither should you be penalized because you choose to care for him an allow him to die at home.

    You’re mad… and so am I… but you are emotionally distraught too… I hope that I haven’t over-stepped in my comments … Diane xo


    • you have not over stepped. You have copied my words to the point.I am still cleaning up blood tonight but it has slowed down. Al says it hurts when he pees


  11. I didn’t read the other comments first relating to calling 911 I see where you say you can’t use anything but Hospice… I believe that under ‘normal’ circumstances..not this!… This is absolutely intolerable and I believe outside of the ‘normal’ realm …… hope things settle Terry.. Diane


  12. Is there another Hospice agency in your area you can switch to or at least call for guidance? This is appalling!! My mom was on Hospice care in Santa Barbara three springs in a row before she finally passed away… hospice was awesome… our angels from heaven. What you and Al are experiencing is not how it should be. Palliative care doesn’t
    mean that unnecessary pain and discomfort is OK…. it’s just the opposite. You are in my thoughts and prayers.


    • Hi Diane. I almost thought of another Hospice but at this late point of Al’s life I am not positive he could have handled the transfer of bed etc. I could create more damage for him, but guidance, I can do that. thanks for the idea


  13. Terry, the catheter story is unacceptable. They obviously just ripped it out of him and maybe caused some internal damage. I used to work in an E.R. if a catheter such as this was stuck and there was no easy means of removal we usually would send the patient into have it surgically removed. I do not believe blood clots and continued bleeding are normal. But I am also not a doctor. If this was my relative I would have him transported to the E.R. and checked out. I know that would be a lot for you and Al, but as you stated you do want an infection to occur. Praying hard for both of you. God Bless.


    • Thank you so much. I really appreciate your comment. Al is still bleeding, there are some blood clots running through his catheter tubing and blood in the bag and at the tip of his penis. I heard that there was probably a tear. I am concerned about an infection going into the bloodstream now


  14. Just reading this feels painful. It’s not normal or okay to bleed like that, I’m happy there’s a nurse trying to improve the situation, and that your friends is with you. Hugs


  15. You need to get him to a hospital now and find another hospice. He’s likely to get an infection. That kind if bleeding is not normal. I am so angry at your hospice provider. You need to report them to the state. Call his doctor and get him to a hospital to get checked out. Please, do it for your brother’s comfort.


  16. And don’t be afraid that hospice is all about comfort and dying with dignity. It doesn’t sound like that hospice company is doing either. Threaten to call the state and the news media if they don’t take care of this and help you get him admitted to a hospital so that they can check him out. Then if they still don’t respond make the calls.


  17. Oh Terry, it has all been said already but I just feel so very bad for both you and Al. When I get stressed and then have so many conflicting things going on at once I get totally overwhelmed. I pray that you get some relief from this nightmare SOON. Please God spare Terry and Al from any further pain and suffering. Please give them peace and comfort.
    ((HUGS)) ((HUGS)) ((HUGS))


  18. Terry who told you that you had to use hospice? Call his doctor and demand that they admit him to get checked out. My husband was hospitalized twice when he was in hospice. The hospice just had to sign him up again. Hospice is all about comfort and dying with dignity. It sounds like they are torturing him instead. Call your doctor and demand that seething be done. Don’t be afraid. If you don’t you may regret it at some time, so please do what you know in your heart is best for your brother. Be strong and don’t let anyone bully you into submission



  19. What the heck is wrong with these people???? I lost the post were I asked if there was any other hospice in town? Have you talked to the doctor? Hospice doctor? Ya know I would write the media and let them know just how awful it is to get any help for your dieing brother… I bet you will get some help then? What do you think? I can’t believe these are hospice nurses…


    • When I complain I am told if I don’t like the way they do things I can leave them. I would consider this but Al is so close to dying. I guess there are all types of Hospice out in the world. I have learned that this Hospice doesn’t have too much staff, and I understand the downsizing but the patient has to come first


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