New adult child caring for parent. My long intro.

But this is what I meant about her other medical issues complicating things.

Her urinary incontinence isn't constant nor is it steady throughout a day. In fact, it seems to have been significantly worse over a few days and is now better, though it's hard as the pull-ups have given my mom independence in managing it mostly without help and my sister doesn't notice/record anything like number of pull-ups used etc.

As she is having to go more often than every 2 hours, a toileting schedule would either have to be uncomfortably often for everyone involved or... The other thing is that she knows when she has to go. She doesn't wait. But yet in the time it takes her to walk to the bathroom, she's going. She believes it's d/t her water pill. I'll admit it did worsten in the morning. But is it related to the surgery possibly and more pressure on her bladder or things shifting around? Is it normal since she's been a heavy woman who had four kids? No one can really say.

The bowel incontinence was happening long before the surgery when her cognitive symptoms weren't even taken seriously by her doctor. That is likely a ulcerative colities flair-up, diet, or both. Again, she goes to the bathroom as soon as she feels like she has to go. In walking to the bathroom though, she isn't able to hold it. And she does have a gastro appt, but the soonest was Feb. 02 and we've had the appt since Christmas. 

Perhaps incontinence is a poor choice of words, given she feels she has t go and immediately acts on the urges. She just can't make it and I'm not sure what might be causing that. I know typical incontinence is just unaware you have to go or failing to act on the physical urge.

"Having been caught flat-footed many times by my DH's Alz rollercoaster, I assure you she might easily do things today or tomorrow that she has never shown signs of doing before. Like opening that door to the basement and falling. Hard."

You are so right. And at the same time, my sister and my mom are the other two calling shots in this situation and we are absolutely not financially in a position to have anyone here 24 hours nor does my mom need ALF or MCF yet. I'm not saying she wouldn't do well at ALF or MCF, but that she is also doing well at home. She and my sister have worked hard to stick to a more set routine, and we've also been hastling my mom to do her PT exercises. She's been doing more for herself in the past week as a result of all of this, and seems over all to be doing better minute to minute.

It sounds like I'm excusing their reluctance to be realistic about the situation. Please remember that we haven't had a firm diagnosis from a doctor yet, which my family treats like word directly from God practically. I understand their reluctance, but I also cannot be seen as the person pulling the alarm unnecessarily. Nothing will lose me credibility faster with my family, and as I'm the voice of reason in many ways,, I'm hesitant, as you can understand, to lose that.

I only bring up the stairs thing because people who haven't lived with a blind person will immediately assume it's an immediate safety risk. I'm absolutely on the same page that I assume these things will become an issue. I also just understand that there's an inter-play between my mom trying to use vision she on longer has to try to get around (following lights between rooms for example) and instead following light from a window on a sunny afternoon that wouldn't be there any other time of day. It's a good example. It's an aspect that is more complicating and freaks my sighted family members out, but is honestly the smallest fish to fry at the moment.

Hmm, let's try that again.

Hi @harshedbuzz,

Omg, the story about your dad day-trading is ... awful. Mostly because your mom really just didn't understand the danger and had no idea. I can only imagine what a shock that must've been to all of you.

My mom does not access the computer d/t not remembering keyboard commands needed to operate it using a screen reading program. She doesn't answer the door d/t multiple reasons mostly worrying about accidentally letting the dog out, and that managing the door and her walker is hard and it's easier to leave it to someone else. We also have one of those security camera doorbell things that I know my sister checks every day.

My mom also cannot read her credit card numbers, bank account information, or debit numbers either to give them out. Again, I understand that scammers can collect all sorts of personal information that would endanger my mom beyond just credit card numbers. My sister can see incoming calls on their xfinity system. Also, while I don't think anyone is looking at statements day-to-day, I know my sister is helping my mom start to get financial stuff in order. Part of that is reviewing statements as they come in the mail. My step-dad's phone also gets text messages whenever anything is charged to their credit card. Up to the point of not allowing her access to the phone at all which seems draconian, we're doing the best we can to manage that aspect of it.

Sister in basement is technically half-sister. She did not witness dad's good experience with the ALF unfortunately. He is not her bio-dad, short explanation.

At this point the only discussion we had about a facility of any kind was very short-term in nature (like rehab following surgery) so it wouldn't have put her housing at risk. And she wasn't even willing to discuss it. Housing issues may make the situation more complicated. Luckily, she is not the one who shares DPOA with me. So when/if I have to make that decision, it will make things both more and less complicated than if we were both DPOA.

This is at the crux of some of the issues I'm having with my sister. She tends to make decisions, and what she says goes even if I have reasonable objections. There is no compromise, no room to consider alternatives, etc. She knows best.

And until someone activates DPOA, that is how it will probably be. And we are probably at that point, though there is no pressing decision that needs to be made necessarily. And I suppose some of my reluctance is fear of alienating my sister because I have continuously been the one to encourage mom's active participation to the maximum amount she is able in the decision-making process. That doesn't change with DPOA necessarily, but I've also noticed how simple decisions, at times, can seem difficult and cause more anxiety than it seems worth for my mom. And to maybe a point made by someone else, I won't want to be trying to get DPOA in the middle of a crisis vs. having it in place.

And mostly, my sister does what makes the most sense and most of the things we agree on. It's just when I question anything, instead of considering that I'm on the same side as her with the same goal of looking out for mom's well-being, she seems to take it as personal criticism. I don't know how to get past this part. There are other issues we have in communication (she accuses me of being sarcastic or "sh!tty) when I am just attemping to have genuine discussion, so then discussion gets side-tracked and becomes about whether or not I was being a jerk or not which obviously is not the original point of the discussion or useful, so nothing gets resolved and she just keeps on the way she was before with no changes. She seems intent on doing it all whenever possible. And only when it's something thta doesn't seem to have much significance, is she willing to even allow me to be involved. She even ignored my request to be involved in a recent doctor's appointment. I just asked her to call me, and she out right ignored me. Consider that this is only my side of it, and even I've considered that it's possible she didn't see my text. So next time I'll send more than one. I just hate that it feels like I'm having to be strategical when dealing with the person who is supposed to be on my mom's team, too. It's really frustrating that I'm working with someone who is willing to literally sacrifice their well-being for my mom, when that makes me look like the bad guy or less-invested child when I won't go to those extreme lengths.

So that is where some of the friction is. But I also don't think we're at the point of mom needing a facility. The incontinence was much worse without the pull-ups, and we could not have continued the way we were without them.

Most days (5 out of 7 I'd say), mom manages toileting just fine independently. Yesterday, for example, she had several accidents but they were contained by the pull-ups. She was able to dispose of them, clean herself, and go about her day without any assistance. She's flushing, maintaining good hygene, mostly asking for help when the mess is too much to manage on her own, and putting any soiled clothing in the laundry. She also usually remembers to tell me when laundry has built up needs to be done as well which is unexpected. We're still struggling with possible on-going UTI(s), but those have been an issue for several years, certainly pre-dating any other significant cocgnitive symptoms. Her urologist believes it's because of the bowel issues she's had which makes good hygene difficult under the best of circumstances. The fiber seems to be helping. And again, I cannot stress enough that some of these issues have been occurring for years and have existing attempts to cope in place like a low-dose daily antibiotic. But even before, she would occasionally have break through UTI's.

One thing I can say is that my sister has worked hard to get herself and my mom into a really good routine over the past 2 weeks or so, and it shows. That along with having my mom do her PT exercises twice a day and being drill sargents about it, my mom seems to be doing much better in a way that honestly surprises me. When she's up, most days, she's talkative and not withdrawn like before. Part of me wonders if it was more grief and depression causing some of the issues before. Along with being on a stronger antacid, her apetite has improved marginally. Not where it needs to be, but better than it was. Her mood is also significantly better over the past week.

I agree that her upcoming appt will probably provide some help and information that will be useful in determining next steps.

Thank you again, a thousand times, for sharing your experiences and things to consider. More than that, thank you for reading my ramblings and helping me think/talk through my ambivalance on some of these more difficult issues. Though therapist and partner have been great, they haven't been here and don't have practical advise to offer.