Sometimes we may not get the answers we seek or the answers can lead to more questions and we are still not comforted. Keep in mind what hospice asked you about obtaining a diagnosis. Would you choose a surgical intervention if the mass was diagnosed as a walled off perforated diverticulum versus a malignancy during sigmoidoscopy? If the answer is no, then do not proceed with the sigmoidoscopy. A conservative approach to diverticulitis could be IV antibiotics. Do your mom’s lab reports show any signs of infection or bleeding? Diverticulitis would likely show an infection with the lab results. You don’t have to wait for a cancer diagnosis to have her evaluated for hospice care. I think that it may be helpful for your mom if you discussed her nighttime symptoms with the Palliative care nurse. It seems that you are playing catch up with her level of pain. They can offer pain management control on a continuum and also medication to decrease her secretions and “gurgling”. It is easy to say, take care of yourself, but difficult to do. Sending hugs.
My concern would be, “It seems that you are playing catch up with her level of pain.” Even for us younger folks, best pain management isn’t waiting for it to reach xx level of complaint. I can tell you how bad the pain of perforated diverticulitis can be. Yes, it comes and goes.
And how to best manage the above can need a palliative specialist or sensitive doctor. Unfortunately, this isn’t like some injuries where you simply stop using the affected body part.
Isn’t the purpose of a better diagnosis, in part, to better know how to provide comfort? And what else to be on the alert for? I dont know what overlap in pain mgt between the possible PD versus cancer.
Best to you.
Edited to correct autocorrect
Okay folks, I already have Palliative Care involved. She has been declared eligible for hospice and I can get her on it with one phone call. However at that point various interventions for comfort, as calla1 mentioned won’t be possible. We are not seeking any surgery other than a possible sigmoidoscopy with scope and not biopsy, but at this point I am opposed to that, my brothers aren’t. I took her out of the hospital to give us time.
As for playing catch up. The whole reason I am sleeping on a small love seat in her assisted living room is to catch the pain as soon as it starts. And I do. The assisted living staff can’t do that. The pain relief is effective at the moment and the Palliative person agreed. If it isn’t, then I call and they come.
I cannot find a way to deal with this using AL staff. I wish I had a house and could bring her home. I am paying rent but living here, essentially.
I have said all this in my posts I believe.
Calla1 that post is extremely helpful since her belly is swollen and I was just told by visiting nurse and PT that giant swollen leg is probably from a mass pressing on lymph system. Her pants don’t close so bought her some new stretch ones. I am copying this info to take to primary care, where we are headed right now. However any port or drain may be an issue with Coumadin, not sure.
Thanks all.
You are very devoted, @compmom. My understanding of pain management is that pain relief often is most effective if the medication is given on a regular schedule, not one that depends on when the pain starts. Is there any way to get your mom on such a schedule?
Yes, that was what I was told after giving birth to each of my babies and recovering from a fracture. Taking pain meds on a regular schedule with a little something to take the edge off it there’s breakthrough pain is said to be much more effective than waiting until the patient actually feels pain.
Once the pain is felt, it is said to take much higher doses to get it under proper control than if the pain meds were given on a regular schedule preventatively. Taking the Rx when the pain is felt is referred to as chasing the pain instead of preventing it.
rosered55 thanks. My mother’s pain is extreme for 2 hours but okay the rest of the 24 hours so a set schedule is not good given the side effects. No doctor or Palliative Care consultant has suggested that. I’ve had cancer as well and only did pain meds when I had pain. In this case, constipation is to be feared and more codeine will do that. A hard stool perforate the colon. And the codeine sends the INR and bleeding risk sky high. So we need to limit it as much as possible.
Great appointment with primary care who is taking us on in a really good way.
So hard @compmom. I would also heed the palliative nurses question about a diagnosis. With a mass pressing against the lymph system, it is certainly not diverticulitis. Additionally, there doesn’t seem to be signs of infection. I know you are trying to honor your brother’s wishes, but I can’t see how a sigmoidoscopy would change her treatment. A drain would not work for the kind of swelling caused by lymph blockage.
There is another possible cause of the swelling in the leg: a burst cyst.
I have asked every doctor the question about how the outcome would change with a procedure. I didn’t need the Palliative Care nurse to ask it honestly. I aggressively pursued the hospice option until I read the actual CT report.
She was on IV antibiotics in the hospital then for a couple of days home, which I had stopped due to diarrhea and lack of response.
I have not made any decisions and am talking with a doctor next week who is prepared to also discuss hospice.
I have fully investigated all options and am steering the course I think best.
I really shouldn’t come on here with unresolved issues that I can handle myself. There is just no neutral place to vent.
“I have fully investigated all options and am steering the course I think best.” I think this is more than most people do, @compmom, and is further indication of your great devotion to your mom. I hope you can get some respite for yourself amid all this stress.
@compmom Hang in there. You are doing a great job with your mom, she is lucky to have you
Your doing a good job @compmom. Hang in there. Of course, you know what is best for your mom.
All the best, @compmom. Many of us have shared the dilemmas of elder ambiguity. I found some phases were all about asking the questions of relevant experts; the combined answers lit the path forward. Lucky is the person who has the kind of perseverance and presence you are offering your mother.
As to venting, no problem with that here. Just realized this thread has 780 pages…
@compmom you should totally come here and vent, we will all make random suggestions, based on our experiences, if you’ve already covered all those, then you can relax a bit and feel good inside that there is no stone unturned, that you really have considered all the possibilities.
We are also just happy to listen 
(((((hugs))))) @compmom.
@compmom, you are doing a great and loving job of navigating a confusing and challenging time. We are here to support you! None of us had a crystal ball or magic wand, sadly.
Sending hugs. Being an ER nurse, I automatically switch to that problem solving mode. I have had to ask my daughter, (who has health issues and is away in vet school), to let me know when she wants medical help or a mommy support call. Wishing you peace on this journey.
@compmom, I think you are doing a wonderful job. Vent away. And based on my experience, I totally get why you want to have all the bases covered BEFORE putting your mom on hospice. It can be a tricky call, because placing someone on hospice really is closing the door to other simple interventions.
You are a wonderful daughter!
My mother does the weirdest thing, she can go alone pretty stable, then she gets wind of something that makes her worry and she worries herself sick, or in this case, she worries herself crazy. Up repeatedly at night, calling out for people, getting dressed over and over, popping up and back in bad, talking to people who are not there, just caught in a crazy dream state. She even forgets how to eat with a spoon, dumps everything on the table before hitting her mouth.
But that is not her ‘normal’ way of being, that is only when she worries or stresses or frets. She is truly her own worst enemy.
We have tried CBD tincture, we have tried doubling her Seroquel, still up 2-3-4-5 times on a crazy night. I understand why nursing homes have, historically sedated people as she is a danger to herself and the psyche of her caregivers. If she follows her pattern, she will be exhausted and in bed for a week once the crazy passes.
What meds might work for this sort of anxiety? I keep trying different things, but nothing has worked and each thing risks other side effects.
We tried Prozac and Citalopram a couple of years ago, tried Lorazepam this year and currently she takes 12.5 of Seroquel nightly.
Her biggest fear is being put in a “home” and it is quite likely that the only thing which would cause that is her fretting herself crazy so she is up all night and not safe. I’d truly love to find something to allay the anxiety of this poor little 90+ year old.
First thanks all.
somemom don’t even know what to say. That kind of anxious “looping” is something we see but not to that degree. I am able to control things by removing triggers. I doubt that will work for you! Does the Seroquel help with sleep?