Oh wow, I love the Showtiming terminology. My father didn’t have dementia but this is exactly what he did and it was the source of huge conflict between me and my sibs. Because he was declining dangerously, needed more help (in my opinion), and in their eyes, for the very short visits, he was just fine. They agreed with him that I was overreacting.
In the long run, he lived and died on his terms and I’ve come to accept that fact. And my relationships with my sibs have healed. But in the short run, it would have been very helpful if they’d seen it too and maybe we all, as a family, could have had a reasonable discussion about it. The outcome might have been the same but I would have preferred not to be thought of as paranoid or overly dramatic.
And I REALLY needed to bite my tongue after my dad died and my brother said “This happened so fast! No one could see this coming.”!
@calla1 I am really identifying with your words. It would be nice if sibling could see what I see or believe what I say. It would be even better if they didn’t vilify me to the parent in need. But I persist as positively as possible because it is the right thing to do.
I’m sorry you had that experience but sharing it made me feel a little less alone.
I’m fortunate that my five siblings and I are in agreement about our mother’s care. She doesn’t seem to be “showtiming” (great terminology) for me, or at least what I see when I’m there matches what my sisters and brothers report when they’re there. Maybe she is no longer able to showtime, I don’t know.
But she still has quality of life. When she is no longer interested in ice cream, we’ll know she is near the end.
Mom passed the swallow test. She’s going home today, with an anti-seizure medicine. This is what we hoped for when we revoked hospice and sent her to the hospital: that they’d do some tests, do nothing invasive, figure out what was going on, and send her home with something to deal with the seizures.
She’ll go back on hospice. I wish there was a palliative care option instead of hospice, because I think the palliative care model matches better what we want for her at this point. But hospice is going to be good.
You may find a hospice that embraces palliative care.
When one has dementia, do not want to body to outlive the functioning brain - mom was ‘borderline’ on needing a pacemaker…no pacemaker.
It is a minefield, as one cannot know what may happen and how earlier decisions might be different with crystal ball insight one just doesn’t have. One just has to be able to go with the changing paradigm.
Second weekend in ER. I am sitting here pondering how far to go with diagnosis and treatment. Every decision is nuanced. Cardinal fang you worked the system well! I have explained 37 times now why we are here ?. My siblings don’t get it, no. Calla 1 I loved your post, your restraint and generosity. We all try to be the best people we can manage. And your words were so helpful.
ER fur secondvtime in 24 hours and now admitted. The silly hosoice Mini Mental Status Exam has her with mild dementia. Meanwhile she asks if she is going to live in the hospital forever now ( Doesnt get that it’s a hospital) and thinks she has lost her AL room and the AL is selling her furniture. In a few hours she won’t temember the AL. She doesn’t know what it’s called. She has no idea why she is here and doesn’t remember continuous vomiting all day and all night. Did anyone else hear the horse talk?!
In the end I guess I doesn’t matter except I had to tell staff repeatedly that she cannot remember how to ask for help. She pushes the buttons to raise the bed, thinking that calls the nurse.
She has a bowel blockage and has been vomiting without stop since yesterday morning. At this point her tummy looks like she is having twins. Meds and enemas not working and mention was made of surgeon, which means another decision tree.
Thanks for the best wishes, same to everyone here. I’m home taking a shower and will sleep at home tonight!
Oh @compmom how hard this all is! I’m very sorry that once again you are thrown into a decision tree. I’m glad you are taking a shower and sleeping at home. You must be exhausted. I’m sending thoughts for a speedy resolution in whichever is the most positive direction for all, and for peace for your mother and you and the rest of the family. Your mother is fortunate to have you as a daughter.
@compmom It sounds like you and your mom are going through a very tough time. I’m sending you good thoughts. I know how challenging this can all be. You’re a great daughter and she’s lucky to have you.
@compmom “decision tree” is quite an accurate term. I hope you have someone (spouse, adult child, trusted friend, etc) who can help you with that. I find someone one more step removed really helps me figure things out. Good luck
A good friend of mine whose FIL has been in town for various medical procedures said he just cheated on his mental status, too – props and calendars and the newspaper help him get the right answers. He can figure out how to get around the questions, but couldn’t outright answer them.
If they want valid mental status exams, why do they allow props and cues to be lying around the exam room? Do they want to know whether the patient can still use cues and props?
Having cues and props does keep the examiner from knowing what the primary caregiver knows, and is frustrating as we need others to see what we see. But during the dementia journey with my parents, I found the ability to use cues and props was the difference between independent living with some support vs the need to move to full-time observation. If they were canny enough to use those cues, they had enough executive function to make it to dinner and perform ADLs. Once they were unable to use those cues, it was clear that full time observation was needed.
I can see that GTalum. If they are able to circumvent the test that is still a level of ability. (But a full eval did have my mother at “moderate dementia). I do think vascular is different from Alzheimer’s in terms of presentation, especially conversationally: I am at the hospital with my mother and she us using the call button apparatus for a phone, thinks she lives in the hospital and can’t remember instructions . She is also fast and impulsive. I had the proxy invoked based on PCP evaluatiion so they talk to me. That’s all I care about: being able to help thanks to providers recognizing impairments. Best wishes to all and thanks for the support: this forum is the best and it is nice to have a place to vent honestly…
@compmom, I am so glad you joined us here. And I am sure you will be helpful to others after your particular situation has passed (not wanting to jinx anything or anyone’s loved ones!).
My other’s GI system is entirely blocked and she now looks like she is going to have triplets. The dementia affects her ability to hold in suppositories and enemas. I ran out for 30 minutes to get her lipstick- after being present in the hospital all the time for three days- and they came it to try to do a nasogastric tube, and she could not understand what they were doing and it was not successful. She has not eaten in days. I am starting to think this might kill her. She is sooo sick and miserable.
She is on Coumadin and her INR is 4 so no procedures are really possible anyway.
The assisted living aide left out a stool softener on 2/26 and I found one on the floor a week later. I have let the assisted living director know that this is a teachable moment about the consequences of seemingly insignificant medication errors.
This is no doubt related to a narrowing of her colon after the severe diverticulitis in October.
Has anyone else dealt with obstruction or impaction? What worked?
I am considering moving her to the hospital where her wonderful surgeon is, who understands palliative approaches but also gets the job done.