Hospice & stent issues
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Hey there My husband goes do MDA and he had a horrible horrible time with the leaking until they could change it Im saying that to say this…
I can help you with the drain but you will probably need to get the supplies at MDA. It will include a colostomy bag. you put it around the drain with the special adhesive. you dr at mda can get in touch with that dept to help you or go to the 4th floor and talk to the nurses. They saved so much grief for my husband. Please email me if I can help you any further. It will stay on and we wont have to worry about changing it so you can just keep her comfortable and enjoy this time as much as you can. Im so sorry your going through this. My email is hwomble@austin.rr.com.
Best wishes
Dearest MMML, I knew you had gone to Houston but didn’t remember that you moved there. I do know what you are going through and I did the same for Teddy, changing his drain site and etc. We do things we never imagined we would have to do. Perhaps, and rightly so, you are not only sad about Mom but you are totally worn out and I would recommend you ask a DOC for something to just take edge off. The Doc put me on Lexapro (10 mg as I can’t take much) and it did the trick. You must take care of yourself as well since you are alone. I think if Mom tolerates what you are feeding her leave it at that. I would only add that ice chips on her lips or even a popsicle would keep them moist. I so wish I could take all this away from you! We are here!
Thanks for the reply, Lainy I moved to Houston to be close with her last year. I did get your email and thank you for sending it to me. It is just such a sad sad state to be in, the catathers gave her so much grief. I tried flushing it but nothing helps. She is in such a delicate situation, I can’t help myself and have to wake her up so she can eat a small amount of fruit or two spoons of oatmeal. I don’t know if I am doing her harm ,but to just let her sleep without any water or food seems barbaric.
I know what life will be like now, she is my best friend, my confidant, the other half of my heart. It was already shattered three years ago but now it feels numb. I’m so sorry for any one on this board that has to go through this life shattering ordeal. In the end, I know I gave my 200% and I will always miss that smile she gave me when I walked in the house/room to see her. I know I brought joy to her life and always made sure she was always cracking up to my silly jokes and well taken care of in every aspect of her life.
I’m having trouble sleeping, I wake up hearing her voice, saying she’s tired of the pain. Please keep in mind she is no longer in pain but had a really rough 3 years because of the two biliary catahers.
She never wanted to be a burden on anyone, and I made sure and assured her that she was not one to me, I’m honored to have had her for a mother. She has always been a kind hearted, soft spoken woman & her life is an example of how I will want to continue my empty & sad life now. Please keep her in your prayers.
Thanks again, I will continue to change her dressings, the leak will definitely not go away on its own. We were always booked in for an exchange once a month. I think it would be a disaster to put her through that ordeal.
SENSITIVE
Dear MyMommyLife, As Teddy neared the end and the Morphine was increased he also hallucinated a little and Haldol totally did the trick. I agree I rather see them sleeping more than to be in pain. I can’t remember if you had asked me to send you the 10 Signs the End is near but I will if you want it. Yes, it is common to call out names. Mom is preparing and it is very important to give her permission to go as it gives a release to both of you. She does hear you and all you have to do is tell her you love her and you will be OK and it is OK to go to her peace. I take it you are in Phoenix? If so and you would like me to make a visit I don’t mind. We are all here for you.
Not sure I have a definitive answer for you but I can throw out some suggestions. I am not sure her stents leaking would cause the delirium although if there is any infection that would certainly cause the change. One of the things that happens when the liver is involved in anything is the build-up of ammonia levels since the liver cannot get it cleared out of the system. It might be worth have her blood drawn for that since it could be an easy fix. They usually use a liquid medication called Lactuose to bind the ammonia and take it out in the stools.
As for the pain medications, they may be contributing some to her changes but I would rather see her not having any or very little pain and being confused than have her in pain.
I do know that toward the end of life many people will see and talk to people that are gone, especially parents or spouse. Often asking for them or reaching out as if to grab them. There are many theories as to why this happens. Some think hallucinations and other believe they are seeing the spirits of loves ones who have passed. No matter which one you chose to believe, as long as it is not scaring her, just reassure her and kind of go along with her. There’s no sense in arguing with her. If she becomes agitated, scared or extremely restless talk to your hospice nurse. There are medicatinos such as Risperidal or Haldol or even lorazepam which can help.
I would talk to MD Anderson and see what they have to say about her tolerating it. I may be time to think long and hard about what your mom would want. It is terribly hard and my thoughts and prayers are with you.Hugs,
KrisVHi Everyone,
Mom is at home under the care of hospice since early May, we had her stents exchanged last month! it’s time for another round since it has started leaking again. But my question to you is, mom has been sleeping more now, her patch is at 75 and liquid dilaudid every four hours. She’s very disorientated when she is up, her questions are mostly about her father? where is he? Call him? My grandfather passed away 18 years ago.
I’m going to call mdanderson and ask them how she can handle the procedure? she’s so weak. But at the same time what happens when someone is in such state, towards the end and has bile leaking? The nurses with hospice have not dealt with patients like this so they are really of not much help, except telling me to keep her comfortable and that it will be time soon. Please provide me with some guidance if someone has any suggestions. I’m changing her dressings three times a day..
Also, a friend was questioning level of ammonia? What can I do in regards to her being not herself? I know the end might be near but I want to know that I did all I could and did not miss anything. Thanks!!
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