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[quote=Anonymous]Hi 22:22, OP here. I have been thinking about you and what I might be able to offer that is helpful, when so much can depend on particulars and on the myriad unknowns of disease progression. Anyway, here are a few random thoughts, in no particular order:
- No matter how much you plan you won't know exactly how things will play out. Life will take its own unpredictable course so if you can try to find a level of acceptance with knowing you will need to be flexible and things won't be perfect, then you'll have a good head start. 
- Some things you can plan for are the kinds of things that will give you flexibility. For me that's childcare. Knowing I have back-up care options for the kids if/when I have to leave on short notice, or for a longer stretch, gives me peace of mind. I have a husband who is great, but we also have a nanny, babysitters, good friends, neighbors, etc... They all knew what what going on in recent weeks and were eager to help babysit the kids when I was gone. That was very helpful to me in terms of logistics and also in terms of parental guilt. So let the people around you know that you may need their help and then use them. In many cases they will be so happy they are able to do something useful.
- Similarly with work. I can telework, so could do more from my mom's house than would have been true a couple of years ago. I let my boss know what was going on and was lucky enough to have tremendous flexibility when I needed to be away. This also meant I was working crazy hours, at the end of already nightmarishly stressful days, but in being upfront with work I could triage the most critical stuff and I made it work. Had it gone on for months it would have been a different story, but the one or two weeks at a time approach turned out to be sufficient for my instance.
- You know that your mom is facing death - the questions are just how soon, how hard, etc... In that case I would say get on the plane and go, now, while she's still here with you and fully herself. She won't get better, things will only get worse, and you won't regret grabbing high quality time now. (This kind of gets to my priority thing - I wasn't with my mother in person in her last few days, but I was with her for her last/best calm day. It was really only an hour or two of quality time, but it was a couple of short conversations that I will always cherish. I'm ok w/ not being at her side for the last few days because she had her other kids and excellent care with her. So I had decided ahead of time that I would be ok w/ that kind of compromise.) 
- Along the same lines, my kids are sad that they didn't get to see their grandmother again. So if I had a "do over" I would have gotten my kids there at the very beginning of the end - when my mom was still up for seeing them. Maybe that's worth considering for you. Maybe even your kids are young enough that you could relocate them for 2 or 3 weeks (hiring local babysitters a lot!) so you get substantial time in non-tiring doses for your mom? If you decided to do that you would document precious moments and probably never regret the effort.
- I would suggest thinking about what you can/would do for your mom that is uniquely your role or your ability to offer. What does/will she need in terms of support and which things can you do remotely that will let you feel you are doing as much as you can while still maintaining your nuclear family/life/self as you need to? What are the local supports for your mom re the daily care, doctors visits, clinical management, social calendar management, etc... that she has support for? Do you have siblings who will/can shoulder some of those things? Your mom sounds young so she may have friends who are eager to help with some things. Etc...  Maybe part of your role is in talking with your mom about what she will need and helping her to plan for or coordinate those things. One of my central priorities was allowing my mother to make her own decisions for as long as possible and doing whatever I could to support her decisions and choices. I didn't always agree with them, but I didn't want to ever feel I pushed her into something prematurely, or that I robbed her of any amount of independence she was able to retain. I sit here now thinking we could have had a few more weeks with her, but it would only have happened if I had pushed her into hospice sooner - and then I would be sitting here feeling guilty for the rest of my life for doing that. I digress. :-) My point is that I was able to support my mom in a lot of her choices by coordinating things from a distance. Lining up care, coordinating doctors appointments (even doing a few by telehealth - which is a rare covid blessing), managing her bank accounts, etc... were all things I could do a fair amount of from hundreds of miles away. So try to find a few things that can be done remotely and are of value. That will be of comfort to you later.
- I don't have books or anything to recommend, but I journal and that is always tremendously helpful to me in stressful times. I also have a therapist and keeping those appointments was a lifeline for me. 
- I also made some hard choices to ensure I was as ok as possible. I've written about some of them (sleeping elsewhere, not with my mom, was one of them) and I was certainly conflicted then about doing that. I think it was the right call though. I couldn't do the things I had to do (mother/wife/employee/daughter/crisis manager...) if I didn't stay as together and healthy as possible. It is extremely hard for women to do this. It is equally critical that they (and you) do. Do it for your kids if you can't find a way to do it for yourself. 
- Try not to get so drowned by trying to plan for what you think will happen - because it's a false illusion that you can plan for it. It won't happen the way you think, your mother (or you or any number of other folks) won't react the way you expect, outside events will force changes in plans, etc... So let yourself off the hook for longer term planning and just focus on what is possible now. 
- Seize the quiet moments when you have them. I had an early morning (because I wasn't sleeping well) when I felt like I had real clarity about what was happening, what felt right for me to do, where I felt ok drawing boundaries, etc... I wrote about it in my journal. It was a good moment. Three hours later we were back in crisis, but I paid attention to the quiet moments of clarity and they helped me hold my center in the middle of chaos. If you can find your true north, or grounding principles, or whatever your equivalent is, that will help you.
- Not sure if you're dealing w/ sibling issues or not - that's a whole other can of worms!
- Try to ask the hard questions, have the sad conversations. Ask about favorite memories, regrets, any unfinished business, wishes for services, how they want to be remembered, tell her what you cherish, look through old photos, get passwords, etc... It's hard to bring those things up but they can lead to very precious conversations. My best friend died when we were 35 and I sat at his funeral laughing while bawling because I had wonderful memories of the night he and I chose the music for his service. It can be hard to face those discussions but they can be full of such beauty that it's worth making yourself do it.

That's probably enough rambling for now. I wish you and your Mom comfort, peace, and some great quality time. If at any time it would be useful, and if you have a burner email you feel comfortable posting here, I'd be happy to chat offline.

Hang in there.
- OP
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