mmegaera | (no subject)

Things have completely fallen apart with my sister, mostly but not completely on a personal level, but *I'm* going to be okay. She wanted to push me into this particular assisted living place before I could even sleep on it so she could go home to Texas next week, but it's not the right place for me. Granted, I'm way too agitated to be making decisions like this right now, but I at least need to talk to my palliative care specialist to see what I'm *capable* of before I make a decision like this.

I have a guardianship service holding things together for me and getting me to appointments, etc., who will help me settle somewhere better, and, thank gods and my parents, the money to pay them. After this experience, I'm pretty much abjectly terrified of asking for volunteer help because it would have be to be iron-clad reliable and the "I can help" would have to come attached to, "I will not wait until you tell me what I can do -- instead, I can see you need this and I will come do it at thus and such a time and place -- is that soon enough?" I know that's not possible, so don't offer and that's okay. I know that sort of thing is an unreasonable request, especially when made by someone who's always prided herself on her independence and really doesn't know how to draw on friends in a reasonable way in a time like this.

I'll update as I'm able, so please don't ask. And this *is* just an update. The overwhelming sympathy is lovely, but it *is* getting overwhelming [wry g]. I mostly just need to write this out.

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Well, drat that it wasn't the right spot after all! Good with the guardianship service.

That really sucks. :(

>> She wanted to push me into this particular assisted living place before I could even sleep on it so she could go home to Texas next week, but it's not the right place for me. <<

While I understand that she might be out of cope dealing with this situation, that does not make it okay for her to rush you on a major decision. Those should be considered thoughtfully unless it is an emergency. Her being tired of you is not an emergency that abrogates your right to mindful decisions. Would she want someone to rush her on buying a house? I imagine not. And if you need help in your life, this is the opposite of helpful, because she's trying to make you do something that is generally considered a terrible idea.

>>Granted, I'm way too agitated to be making decisions like this right now, but I at least need to talk to my palliative care specialist to see what I'm *capable* of before I make a decision like this. <<

Obviously you're capable of recognizing that it's foolish to rush into major decisions. You can also tell that a given place doesn't feel right to you. If you can articulate why, that might help folks gauge what you can't and can't do right now, or help you/them find a more suitable place for you.

>>I have a guardianship service holding things together for me and getting me to appointments, etc., who will help me settle somewhere better, and, thank gods and my parents, the money to pay them. <<

That's awesome.

>>After this experience, I'm pretty much abjectly terrified of asking for volunteer help <<

No wonder. :(

>> because it would have be to be iron-clad reliable and the "I can help" would have to come attached to, "I will not wait until you tell me what I can do -- instead, I can see you need this and I will come do it at thus and such a time and place -- is that soon enough?" <<

Hmmm ... someone would have to know you really well to do that, but I have known people who were that adept at reading people. It would probably drive me bonkers, but YMMV.

>>I know that's not possible, so don't offer and that's okay. I know that sort of thing is an unreasonable request, especially when made by someone who's always prided herself on her independence and really doesn't know how to draw on friends in a reasonable way in a time like this.<<

Accepting and even appreciating help are learned skills. First they require that good help be available, and second that one is receptive at least to the concept of getting into this.

It took me years to learn how to appreciate my partner wanting to take care of me when I'm sick. Eventually I got my lazy streak to do something useful for once, and appreciate not having to get up and fetch things. I found it easier to work on little bits that I could see were almost in reach, and then expand over time. Because I didn't want to keep quashing a pretty major part of his personality, and the practical aspect was clear.

Some of the resources I have found useful for sharing in difficult situations:

WRAP Workbook: a set of care instructions for when you can't handle everything on your own, fully customizable.
http://www.workingtogetherforrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pdf

Assisted decision-making: short and long versions of how to help someone make decisions without taking over their whole life.
http://www.justice.nsw.gov.au/diversityservices/Pages/divserv/ds_capacity_tool/ds_capa_decision.aspx
http://www.dhs.vic.gov.au/__data/assets/pdf_file/0011/690680/dsd_cis_supporting_decision_making_0212.pdf

Basically anything you can tell your support network about your preferences or guiding principles will help them understand what you want or need, either when you can't communicate, or in keeping with your wish that people could just do stuff for you without you having to ask for it. I have found it super useful to set parameters with people I'm close to so that we don't have to keep talking about stuff that is awkward. I try to learn theirs in return, even if it boils down to doing the opposite of what would make me feel better.

I hope you feel better soon. No pressure on communicating, just use anything of this you find helpful.

Everything you say is good. Unfortunately, the situation has blown up *way* beyond my worst nightmare. No control, no one reliable to call on. The palliative care doctor (whose first meeting this was) thought things were settled yesterday because my sister took over the meeting, got a phone call this morning, and he is putting me together with hospice next week, which is the soonest things can happen. In the meantime I'm here on my own because Ann's taken off in my van for the day (without waiting for Loralee to show up) and Loralee's car has broken down. And I literally have no other people resources.

I guess if I make it through this weekend we'll see what happens when the hospice people show up. But my only two real alternatives are to get into some sort of place where I can wait to die, or jump the hoops and months to get into Washington's Death With Dignity assisted suicide thing. Frankly, at least the latter would give me more control. And who knows if my will will even get followed now, because who's going to carry it out?

The guardianship service turned out to be bogus, too, on a legal level. So I don't even have that anymore.

Anyway, Ann's flying back to Texas on Monday. Without me. Thank god.

>>Everything you say is good. Unfortunately, the situation has blown up *way* beyond my worst nightmare.<<

That sucks.

>> No control, no one reliable to call on.<<

Unfortunately that's common in America today, a lack of personal and public safety nets. They wonder why people are so anxious and depressed now, it's not just that stressors are increasing, but that fault tolerance is decreasing. Smaller families and fewer community ties mean less help when things go wrong. And the government is not picking up the slack.

>>he is putting me together with hospice next week, which is the soonest things can happen.<<

I hope that pans out.

>> But my only two real alternatives are to get into some sort of place where I can wait to die, or jump the hoops and months to get into Washington's Death With Dignity assisted suicide thing. <<

:( I'll miss you.

>> Frankly, at least the latter would give me more control. <<

Control is vitally important. Without that, even a physically comfortable place tends to be miserable, because it's all arranged for someone else's benefit, not yours.

>>And who knows if my will will even get followed now, because who's going to carry it out?<<

Likely not. America has an unfortunate tendency to base events on who has power, not on what is right or even legal. I assume you've checked all the obvious routes like consulting a lawyer, or determined that those are unaffordable.

>>The guardianship service turned out to be bogus, too, on a legal level. So I don't even have that anymore.<<

That sucks too. :(

>>Anyway, Ann's flying back to Texas on Monday. Without me. Thank god.<<

Small mercies.

I'm sorry that things are so awful right now. You deserve better.

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Alas!

Re: Alas!

Re: Alas!