My mother is in hospice with multiple chronic conditions, such as vascular dementia, chronic kidney disease, type II diabetes, chronic UTIs, and more. She has an advanced directive that she does not want life saving efforts.
Before starting hospice, she was hospitalized with yet another UTI. The infectious disease doctor was consulted due to the fact that the bacteria causing the UTI was resistant to every antibiotic that wouldn’t kill her. Basically we were told that it is not treatable with her various conditions. For example, they could try X antibiotic, but that would shut down her kidneys and require dialysis IF she even survived. Since her wishes (before dementia) were to not undergo dialysis, this treatment wasn’t an option. The Dr said she could live with the UTI for quite a while. He went into a whole explanation about research that shows that some older people often live with a certain amount bacteria that their bodies become accustomed to and it doesn’t cause distress. I don’t know how much I believe of this, but I also didn’t go home and do research since it wouldn’t change the treatment decision.
So we’ve now been at home in hospice since April. She continues with the UTI but it hasn’t caused delirium. In fact, since coming home, she has been clearer and more acute mentally!
This morning I saw her urinating and saw pure red blood after the normal urine passed. When I discussed this with the nurse, she said it could be a couple of things. Kidney failure, kidney or bladder stones, or the beginning of sepsis. She doesn’t have any other symptom of anything yet. But something tells me sepsis is what is coming.
If she does go septic, how long could she have to suffer?
We also have an end of life placement for her. They specialize in imminent end of life care, less than 2 weeks of life expected. I want to know when to call and get her moved on the list.
She will need IV pain meds, as she refuses and liquid medicine (morphine) and will struggle to swallow pills as this progresses.
I am a planner. I don’t like having no control and no idea of a timeline in order to mentally prepare.
Thanks for your input everyone!
To check for septicemia, your Mom needs to have "Blood Cultures" done to see how much bacteria there is in her blood stream and she also needs to have blood taken to check her kidney function. That way you can know "for sure" what is causing your Mom's bloody urine. Also, if your Mom has an yeast infection or irritation of the perineal area, these can also cause bloody urine.
You state that you are "a planner. I don’t like having no control and no idea of a timeline in order to mentally prepare." You have done a wonderful job planning for your Mom's end days. Unfortunately, your Mom's health is such that it is and will be unpredictable from now on. Even though you have "planned for every event". Your Mom's decline and death could come suddenly or when you least expect it. Only God knows when your Mom will die. You need to quit planning so much, relax and enjoy the days that you have left with your Mom now.
As a side note: Why is your Mom refusing any liquid medicine (morphine)?
https://www.merckmanuals.com/home/infections/bacteremia-sepsis-and-septic-shock/bacteremia
Bacteremia
https://www.merckmanuals.com/home/infections/bacteremia,-sepsis,-and-septic-shock/sepsis
I understand microbiology pretty well and appreciate the explanation of colonization. Her urine has been cloudy and foul since the hospitalization. This is a full blown infection, but they just can’t treat it due to her advanced kidney disease. She was one step away from dialysis before all this started. I know that she would need a blood panel to check for a variety of signs of sepsis, kidney failure, etc. and the only way to check for true blood infection would be to culture the blood. Ironically, my mother was a microbiologist!
My mother has a fully prolapsed uterus/vaginal vault. Due to this anatomy change, I can be sure that the blood was coming from her urethra. Whether the blood originated in the bladder, kidneys, or even the urethra itself, is not known.
Mom hasn’t been Mom for over a year. She retains no traces of her personality and is in sheer misery. She is existing, not living. There is no joy in her life, despite my daily efforts to bring her this comfort. My ‘mother’ is gone. The best I can do is give her body the greatest level of care that I can, and hope that somewhere inside, she knows that she is loved.
No one should have to die a painful death. She refuses liquid medication as a toddler might. She squeezes her mouth shut, holds her hands over her mouth and refuses to eat anything we could mix it in, like applesauce. Why? I have no clue. Even when she was out of it, when a nurse squirted .1 cc into her mouth, she screamed and cried and tried to spit out what she could. She takes pills just fine, so I don’t understand her aversion to liquid meds. I know there are pain meds that are in pill form, but as she gets weaker, I know that will be more and more difficult for her to manage.
As for being a planner, it is in my dna. I am a teacher and planning, arranging, preparing is how I get through each day. I know I have no control over when she dies. Honestly, I wouldn’t want to have any control over it. I want to control HOW she dies, to the best of my abilities, so that it can be as pain-free and dignified as possible.
My life has been in limbo now for over 6 months. I took a leave of absence from my position to be Mom’s full time caregiver, and I wouldn’t change that. And while I don’t welcome her death, I do welcome an end to the suffering. She is so unhappy and uncomfortable, and I know that will on,y get worse as we near the end.
So, if sepsis is to be her COD, I just wonder how long that stage will last. I have read anywhere from a day to a week after diagnosis. I just need to make sure I get her to the facility where they can provide expert palliative care. I just can’t get her admitted too soon. They only keep people for about 2 weeks. If a person improves, they discharge to a different facility, or back to home hospice. We have used this facility with my Grandmother and it was the most peaceful experience you can have with a death with respect to care and dignity. We had home hospice with my grandfather, and while that was so much better than other situations, for our family, this facility is ideal.
Sorry for the long post. Once these things start to flow, it doesn’t seem to stop. A bit of verbiage vomit! But it can be rather cathartic. Thanks everyone.
I know in anglo-american cultures we're terribly squeamish about them, but don't forget suppositories for pain and fever relief (sepsis is often described as feeling like the worst 'flu you've ever had). Suppositories are well absorbed, completely avoid the swallowing difficulties, won't upset her stomach, no pain involved, and an experienced nurse will pop it up there before she even knows what's happening.
I'm so sorry you're going through this. Please keep checking in to unload and let us know what's happening.
You're welcome. To answer your question about Sepsis not long. She may be already showing the signs since kidney function is first to go. I'm sorry she is going through this.
MomsLifeline, The oral morphine that the nurse gave to your Mom was most likely 20mg/ml so there is a suppository of that dosage available.
Many people are not themselves as they approach death. It is hard to deal with. But even though your "Mom isn't your Mom anymore," you can still give her emotional and spiritual comfort by reading her favorite Bible verses, playing her favorite songs (such as "Moon River", songs by John Denver, KISS, Three Dog Night, Mannheim Steamroller, Big Band songs, or hymns; or listening to tapes from loved ones, etc.)
I understand the need to control because you are a teacher. My parents were teachers. Again I want to reiterate that you MAY NOT be able to control HOW your Mom dies no matter what you do or what you plan.
There is the possibility that your Mom may die before she goes to the "end of life placement" facility. Or she may die while she is being transferred or transported via ambulance or car to the "end of life placement" facility.
HOWEVER, no matter when or where or how your Mom dies, you will eventually need to accept that you have already done everything that you can do "to the best of your abilities". And I think that no matter where your Mom dies, her death will be as pain-free and dignified as possible. God Bless!
Yes, I know about suppositories, and even have some. However, if she won’t even take liquid meds, attempting suppositories seems far beyond a possibility.
I know I can’t be in total control. I just want to have as much in place as possible so I can focus on my son and husband when she does pass.
You DO KNOW that suppositories are not to be eaten but are to be inserted into the rectum? And the reason for that route is because the person IS NOT EATING! C{;--)
So there is NO reason why you cannot just turn your Mom onto her side and give her a little white glob of wax that has Morphine in it. This type of suppository is to give pain medication and is not the same as suppositories given to cause someone to have a bowel movement (such as Dulcolax AKA bisacodyl).
Just like tablets and capsules have different medications in them, suppositories have different medications in them. Think of a suppository as a "Rectal Capsule".
So please give your Mom a Morphine suppository and see if they give her pain relief.