Mom has had chronic UTI's since mid December. The urologist believes although she is catheterized the infection is caused from retention of urine. He stated that straight catheterizing her four times per day would be the best method to get the infection under control. Rigidity and pain while rolling her to catheterize helped her decide that this was not something she wanted to do so she was catheterized again with an indwelling.
We have had UA's done and the infection continues to be there. Treatments with oral and injectables have been done. The last UA that was positive was done eight days after treatment with antibiotics was done. It was positive.
When the Hospice nurse asked mom if she wanted to continue treating the UTI's she answered "Yes" emphatically. For a person who can barely speak at all it was obvious that she is not willing to give up.
Now we are at a juncture where Hospice is willing to take her on although they will not do UA's nor use antibiotics to treat the infection. This most likely will lead to sepsis. They will treat her with pain and comfort meds for that condition. Their assessment is that there is no more quality of life treating her UTI's.
The GP met with us. She has been working with mom since 2008. Mom has great respect for her. The doctor stated that she believed mom continues to have quality of life and that she would treat the symptoms with antibiotics as necessary.
So... what to do? My mom is a fighter and will continue to try to 'beat' the PSP. How/when do you decide to discontinue treatments? If the infections aren't kept at bay the sepsis may set in. It seems to me that without treating the infections I am causing progression of sepsis. I have tried to talk with mom about this but there is no response at this point.
If I had another chance to go back one year I would have asked her then how she would have wanted to deal with this situation. I never saw it coming.
Kath
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Sugardart
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We are not yet in your position so sorry, I am not able to give you any advice, I do hope you will be able to resolve your dilemma.
I am looking into an Advance Decision for my husband but I am concerned that he will not take it all on board, he can be very stubborn. The one thing he has said though is that he does not want a PEG fitted.
Stubborn must be part of PSP. They just don't want to give in to the disease. We do have a health care directive in place. I never dreamed that UTI's would be the cause of such indecision. Mom has chosen not to have a Peg and Hospice compares the decision is similar to treating UTI's. When asked specifically whether she wanted to continue with antibiotic treatments she stated yes. I do understand that there will be a point when they can no longer be treated. So do you wait until that point in time or do you cease to hasten the inevitable. These are questions I should have gotten answered back when.
A social worker assisted us in writing her health care directive. They are trained to complete them as specifically as they are able and can draw out answers that one would never think of. It may be easier to have someone else work through it with him as you sit by and listen to his responses.
I can suggest that you give her cranberry juice several times a day as this can help reduce the UTI problems. It worked for my wife June whom had PSP for 8 + years and past away last month but was never infected by UTI. Give it a try>
If it were me it is an option I would fear, but perhaps one to remotely consider again - Are there any other pain management options to try for your mother so the straight catheter can done 4 times a day ?????
I think you have to answer one question before making any decision. "Will I be totally happy with this decision NO MATTER HOW IT WORKS OUT? If you can't say "yes" then it's not the correct decision. I think decisions about PSP patients are more about the caregiver than the patient often.
Thank you to all that replied and those of you that share the same concerns. After conversing with family and caregivers we decided to support mom with her desire to continue treating the UTI's realizing that at some point in time it will no longer be possible. This has been difficult for me to try to be as informed as possible with varying scenarios given by the medical professionals as well as Hospice. In the end there were two things that helped me decide which way to go... one was following through with her wishes realizing that if she had a voice this is what she would want. The second was taking what Jimbo had to share. This decision is based on mom's express desire as well as the information I had I believe that this is the best course. In the end I will be able to say I did the best I could do. Thank you Jimbo for your help. And again I appreciate all that everyone has to share. Kath
As a younger person with PSP, I would urge you to go with your Mom's wishes as long as you know she has clarity. If she's not ready to let go, she has purpose. I'm glad to see that's what your family and caregivers decided to do.
I have recently gotten a Health Care Directive and am finishing the detailed points. My best friend, Connie, who also has my POA, understands clearly what I do and do not want going forward. My Neuro was a big help when we met with him as well.
It's my understanding the Directive only truly clicks in to the letter of the law is when the person is no longer cognizant enough to make that descion him/herself. It sure sounds from your Mom's reaction she knew what she wanted.
Since I'm a younger person and with advanced medical technology, I realize I could live a number of years going forward. However, if the quality of my life is poor, and especially if cognitively I'm not all there, I don't want the bells and whistles. Even if I am cognitive but take a big turn for the worse, don't know that I'll want a PEG tube, etc. I can't help but believe prolonging my life in a situation that carries no hope will only be that much harder on my loved ones, especially my daughters.
I've read comments by various posters over these months that, if I understood them correctly, mental cognition remains about the same or slightly diminished. That's not the understanding I've gotten from my Neuro at all. Whether it's true, untrue, or part true, know I need to get these fine but so important details defined by me, my wishes, while I can, than place that burden on my kids. It's uncomfortable stuff to deal with, for sure but so necessary. Been telling those I know for some months now, and more than once, lesson learned; get this stuff done when you're younger and well; it would be so much easier than when unwell; you can always pull it out years later and tweak as necessary.
I do so hope your Mother stabilizes and your family and caregivers stay strong.
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