Just warning it can be challenging getting urine sample to test for UTI. Upon request, there is a disposable plastic collector that can be used in the toilet to help make getting a urine sample slightly easier.
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Hugs to everyone
Not swallowing is a typical end of life marker. Also it was helpful to us to frame the painkillers and meds as treatment, not as sedation. (I actually called my Dadās hospice the day after he was admitted bc we were all panicking that we had done the wrong thing. It was a great comfort to him to be in hospice, but we didnāt realize that Day 2)
The buildup of toxins is painful and disorienting, makes breathing and thinking very laborious. Nobody wants someone they love to suffer unnecessarily. Pain is just as i portant to treat as blood sugar. Once the pain and confusion is lessened, sleep overcomes our poor worn out loved ones. It is very difficult to switch to a āwe are clearing a path for a less painful deathā from a āweāll do everything we can do save them or prolong lifeā. Longer life is not always a gift we should give.
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I appreciate everybody allowing me to use you all as a sounding board here because itās helping me with my stress levels a lot.
A bunch of random updates:
UIL & AIL:
Total radio silence from them since day before yesterday. No info, no feedback, no phone calls, no text messages. Nothing. UIL is still upset over what DH wore to DHās grandfatherās funeral decades ago when he was a teenager. UIL is worked up over what DH will wear to UILās funeral when HE dies. Yet in the same conversation, tells my DH that maybe he wonāt come here if MIL is comatose and not able to speak, maybe heāll just wait until sheās dead so they āonly have to come once.ā
Iām really mad about this. Iāll get over it. DH & SIL will get over it, too. But UIL & AIL have made it clear that, despite what they SAY, none of us are a priority for them.
MILās cousin:
Cousin flying into our airport tomorrow evening, will stay w/us at our house. Day after tomorrow, she & DH will drive to where MIL is to see her & spend time w/her. DH has updated Cousin of MILās current condition. Cousin said that sheās wanted to come visit ALL of us for years now, but MIL was always evasive, wouldnāt commit to a date. Meanwhile, Cousin also wanted to see DH, me, & our 2 kids. But all MIL could focus on was her own embarrassment over what will Cousin think of her that she now canāt walk very well, gained weight, and all that. Cousin doesnāt give a rip about what you look like. Sheās a good egg. So that lost opportunity is very sad.
So today, Iām going to clean up the guest bedroom where sheāll sleep while sheās here.
DH:
Is burned out. Probably needs counseling, but heās not in frame of mind right now for me to suggest that. Heās close, but not ready yet. Is taking today & tomorrow off from going to MILās area. This is a good thing because he needs a break and heās been driving the 180 mile round trip every day for almost 3 weeks now. And the car probably needs an oil change now anyway.
Post-death:
MIL wants to be cremated. Thereās a facility in MILās town which DH will call when the time comes. MIL never wanted a funeral or memorial service, but DH & SIL want one now, so there will be one. My kids donāt have funeral-wear, so I need to take them shopping for an appropriate outfit. 
Both kids have already said that they are not in the mood to socialize with a bunch of MILās church friends. I told my kids not to worry, Iāve got their back, Iāll block that and will socialize with all of the churchy people so they donāt have to.
Estate:
MILās estate will go into probate. I gave DH a couple of questions to ask the lawyer, which heās going to get clarification on this week. Normal run of the mill questions, but theyāre things that DH hasnāt thought of because heās as familiar w/the process as I am.
The funeral home made cremation arrangements when my Dad died fyi.
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There is something called direct cremation so you donāt need to go through a funeral home but most people prefer to pay a little extra to have someone else take care of it. We considered it but with everything else it was just too hard. But if the facility is right in in town it might be easier. Obviously you canāt do a viewing, etc., and have to do all the services the funeral home generally does like placing the obit, getting death certificates, etc., but saves money overall.
Hospice services might already have information on file. Itās okay to ask, what happens next? Even though they canāt give you an exact timeline, they have a sequence.
Other peopleās behavior is theirs to manage. UIL/AIL will live with their decisions whether or not they visit, whether or not you guys like it (and honestly, they sound like a lot of work at a time when you are overwhelmed already) Not everybody can cope with face to face (one of my siblings could not) and give grace to yourself and them ā you to not care, them to do what they need to do.
hang in there. You are taking time for yourself, yes? Even 5 minutes locked in a quiet room? You do your MiL honor by your steadfast support of her son.
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Glad you can sound off here and get things off your chest.
People may have different funeral wear expectations due to tradition, religious practice, cultural practice - but I thought Iād throw it out there that for my momās very small service - mostly close family - we all just dressed what Iāll call ābusiness casualā - I wore a simple dress that I actually had bought with her weeks before, most of the males wore button down shirt and non-jean pants - maybe a few sports coats, but we are not formal and it seems not unusual these days to not have everyone in suits and black. Your family may have different traditions/ways but thought Iād share so you donāt have the pressure or financial obligation of a āone and doneā funeral outfit.
Best to you all.
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Gosh you have a lot going on. But I admire how you are handling it, sorting through a variety of challenges.
āBoth kids have already said that they are not in the mood to socialize with a bunch of MILās church friends.ā - They might be pleasantly surprised to find the friends to be kind and compassionate at a funeral event, sharing some nice memories of their Grandma. But since you know the crowd, itās nice that you will be watching out, covering their back as needed.
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I found this was so true when my grandfather died when I was teenager. I dreaded going and instead I learned a lot of great stories about my grandfather ā some even my dad didnāt know.
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My grandmotherās funeral, when I was a know-it-all high school senior, was one of my favorite events as a kid. We all got together at a local hotel afterwards and had a wonderful time. 
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Iām looking into Neptune Society for cremation. A friend did it for her mom, and now her whole family has signed up.
Second the idea of kids and funerals. It wasnāt until my FIL died that I learned how these things typically go ā mercy meals and visitations and all kinds of things. Made me more able to understand and give grace in times like these.
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Some cultures wear black, Chinese wear white for funerals. In our extended family, since mom always wore white to funerals, we daughters all wore white dresses. The males wore aloha shirts in dark colors with dark slacks.
My kids were OK with the funerals of my parents and enjoyed being with their cousins, whom they are close to.
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Hospice nurse called DH this morning, told him that MIL will last about a week, maybe less. After that, DH left the house for a bit, came back and said that itās finally hit him emotionally that pretty soon, his mom will be gone and he wonāt ever be able to just call her up to say hi anymore. Thatās hard.
Cousin is arriving tomorrow evening. She & DH will go to see MIL Thurs a.m.
AIL & UIL still waffling a bit about coming, but late today, UIL said yes, heās going to come. Ok, weāll believe it when we see it. AIL, meanwhile, is asking if the memorial service is going to be in southern CA (where MIL is from, and where AIL & UIL live). Umā¦no. All of MILās friends are here in our state now. She hasnāt live in southern CA in over 20 years. Why in the world would the memorial service be there? Whatever. 
For my SisIL, we had memorial services in SF where she lived for nearly all her adult life and Honolulu, where she was born and raised and wanted to be buried near her folks. My BIL planned the SF service and we planned the HNL one. Both were fine.
We attended both, flying up to SF for that service and my BIL and his kids flew down for the service in HNL.
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We felt it made sense to allow for service in both venues and it made survivors feel more closure, which was our goal.
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Hospice nurse called DH this morning, said MILās breathing has changed and her pulse ox is in the high 70ās percentage-wise now. Cousin arrives this evening at 6:30 pm, then she, DH, & I are headed 2 hr drive to where MIL is so Cousin can visit MIL and also so Cousin wonāt end up missing MIL before MIL dies. Hospice nurse thinks itāll be a couple more days before MIL goes.
UIL & AIL were to drive out here yesterday and guess what? Low oil light came on in their RV/van, so they went back home and didnāt even make it an hour from home before they had to turn back around. Now AIL is talking about finally flying here. We are not holding our breath. If this was important to them, theyād already be here. Theyāre full of talk and DH, SIL & I arenāt bothering with their drama anymore.
DH has already contacted a local funeral home and given them phone # of the assisted living facility, and called assisted living facility and gave them phone # of funeral home to call when MIL has died.
My sister warned me that MIL will probably wait until none of us who know her are in the room when she passes away. Thatās what happened when my mom died.
My dad took 4 days to die, and I was by his bedside for most of that time. He died during the 10 minutes I stepped away to eat something. . .
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Often the hospice will provide O2 for patients when they canāt keep their O2 levels about 90%. Their goal is to keep patients comfortable.
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My dad was on 02 for the last 18 months of his life, 24/7, and hospice was very clear about not caring too much about the levels once they started to drop. (And his were already regularly quite poor)
He passed away when none of us were there. Sometimes it is just some deep desire to let it all go without an audience, so to speak.
So sorry. hang in there, keep sticking together.
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My mom died at 3am, when no one was around. She was ready to go.
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