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[mdlbear]

I ran completely out of cope last night, about 11pm, in the process of getting Colleen into the bedroom. I think I'm a little better now, but probably still fragile. I lost it several times: gibbering, almost completely non-verbal in either direction, and occasionally sobbing silently and without actual tears. This is going to be harder than I expected. I haven't been that out of cope since one night when the Y.D. was a month or so old, sitting on the floor by her crib at some ungodly hour in the morning trying to wake up enough to pick her up and change her. Maybe not even then.

Taught my son-in-law to make fried matzoh this morning -- the Y.D. is home from school today because she can barely walk with her injured knee, and wanted comfort food.

Meta: note that I've switched tags from colleen-200812 to colleen-200901 to mark the fact that she's home from the hospital now.

I think maybe I'm ok now. OK enough to get through the day; that's all I can hope for at this point.

Comments

[rowanf.livejournal.com]

/me offers a comforting hug.

[thnidu.livejournal.com]

Empathy and hugs. This happens. (Note anagram of first word in previous sentence. Even more so with an ostomy bag.)

There's no need to be ashamed of running out of cope. Burdens like this are way beyond the ordinary, and you deserve respect and praise for the way you've handled it so far. I've lost it plenty of times since last April, when dunkelpig's travails began, and too many times it's been unfairly directed at the younger generation grown-but-in-residence, crankyinfrance and bensanaz. Forgive yourself, if you haven't already.

"Home from the hospital" is a Very Good Thing.

[lisa-marli.livejournal.com]

Completely know how you feel. *hugs*

[catsittingstill.livejournal.com]

Plus anagram of third word in first sentence. Especially with ostomy bags.

Seconds (or thirds or fourths) on the hugs.

[madtom-o-bedlam.livejournal.com]

You've already shown more cope than most. I hope I never have to see how deep my well of cope goes, but if I do I hope that I do half as well as you. I used hope twice in that sentence. Makes it look awkward but I like it any way.

[faxpaladin.livejournal.com]

Continuing GoodThoughts...

[mdlbear]

And the first word of the second sentence. Especially with ostomy bags.

ETA: it is perhaps a good indication of how little of my brain is actually functional that I've been racking what's left of it for an anagram for "empathy" for most of the day.

[artbeco.livejournal.com]

*hugs* Hang in there, teddy bear.

[mdlbear]

/me hugs back gratefully

[mdlbear]

*hugs back* Thanks.

[mdlbear]

Hugs and many thanks!

Nothing to forgive; it just makes things that much harder.

"Home from the hospital" is a Very Good Thing Indeed.

[acelightning.livejournal.com]

*hugs*

There are times when (in the words of my late High Priest), "the support system needs a support system". Do not hesitate to call upon friends, family-by-choice, family-by-blood, even an occasional complete stranger if necessary! There's a reason why the instructions on airplane oxygen masks say to put on your own mask first, before helping a child or disabled person with theirs - you can't take care of anybody else if you don't take care of yourself. (Comfort food is a great idea too, btw. By "fried matzoh", I assume you mean matzo brei?)

Also, nothing will destroy your ability to cope, steal your "spoons", and shred your psyche more effectively than sleep deprivation, especially if it's not just a matter of being chronically short on sleep from going to sleep too late and getting up too early, but having one's sleep interrupted at short intervals so as to interfere with REM sleep. (Newborns are especially good at inducing this state in parents.) Turn caregiving duties over to someone else and check into a hotel for a night if you must, but get some uninterrupted sleep!

Lastly, have a few more *hugs* from me...

[firecat]

[hugs] and agreeing with the comments about a support system for you too.

I don't know if it would work for you but I have seen people put lists in their LJs of tasks that need to be done, and friends agree to take on the tasks.

[mdlbear]

Thanks. The trick is only falling apart when it's safe. I'm not sure I've always been able to manage that.

[mdlbear]

Matzoh Brei, exactly - that's what Colleen and the kids call it, because that's what our friends call it. Dad always called it "fried matzoh". It's actually something like a fried bread pudding.

I rarely get uninterrupted sleep, but neither of us does very well sleeping alone, either, and I really need to be around to assist if necessary. Most nights Colleen's pretty good about not waking me, and I need less sleep than she does.

I will have some backup: Selkit and Colleen's friend Marty observed tonight's setup, and there are some other friends I can tap who are familiar with TPN. More general, emotional support... that could be a problem.

[mdlbear]

Hmm... Many of the friends who've offered don't read LJ, so we'll probably have to use more old-fashioned methods. Colleen's very good about lining up help via phone. I'm a lot less good hopeless at it -- not only at asking for help, but at figuring out what help I need to ask for. I've never had to, you see. It's a problem, but I don't even know where to start dealing with it.

[firecat]

You probably have some friends who are good at figuring out ways to help without needing to being told. I'm probably not really one of them.

General stuff that comes to mind, that someone might be able to do (leaving you with more energy to care for Colleen) -- shopping, cleaning, cooking, managing the garbage, helping with homework, sorting mail and dealing with bills, making phone calls.

[mdlbear]

*nod*

The kids already do the cleaning, most of the cooking, garbage and mail; I do the bills. Colleen does most of the phone calls, and the helping with homework -- I'm not home. One of Emmy's friends helps her with math. After Kat and Selkit leave I'll need more help; OTOH there won't be as many people in the house.

[acelightning.livejournal.com]

I'm a shiksa by birth, but I grew up in an overwhelmingly Jewish environment. I always thought of matzo brei as "Jewish French toast" ;-) (And now I wish I had some matzos... I'm in the mood for a snack...)

You seem to have plenty of LJ friends (including me) who are more than willing to provide emotional support... but for many people, words on a screen aren't tangible enough to help very much. If talking on the phone would be useful, send my phone a text message via the information on my LJ profile page, and I'll get back to you with my phone number - I keep really screwy hours, so if you need a sympathetic voice in the middle of the night, I'm likely to be available.

Coping

[hvideo.livejournal.com]

Many of us in your situation tend to make some common errors in evaluating how much help is needed. Here are some that I, personally, have made:

1. We tend to evaluate the situation in terms of "What is the absolute minimum amount of help that I would need?" This is often calculated by assuming we only need 4 hours sleep per night and various other "I can take it" assumptions on how much cope we have.

Any machine needs standard maintenance. A machine being run at 150% of normal load often needs 200% or more of standard maintenance. Humans tend to be the same. Oh, they may be able to take a heavy load for a short period of time under even reduced maintenance - but they wear out fast when used in that manner. Others mentioned getting enough sleep - that's a great start. But plan for some other Mandlebear Maintenance time as well.


2. We tend to ignore accumulated drain on cope. An amount of extraordinary effort that is possible the first few days may become impossible by the end of the first week, let alone longer periods. This can be compounded if we make a claim early on that "I can handle it" - we hate having to admit that we were wrong and that more help really is needed. Far better to ask for more help than we think we need at first. Usually it turns out that we still didn't ask for enough. If we DID ask for too much, it is much easier to later say "OK, I'm confident that I can take back (certain tasks) now" than it is (in the opposite situation) to say "OK, I admit that I need more help than I thought."


3. We tend to think that "I'm the only one that can do (some specific tasks) correctly." While it is often true that someone without guidance might do a task in a somewhat different manner, having it done in that somewhat different manner is usually much better than us trying to do it perfectly. Also, often a small bit of instruction will get things pretty close to how we like them done - and pretty close should be close enough to live with. I know that sometimes it seems that everything is spinning out of control. Doing certain tasks in PRECISELY the way we want them done can sometimes give us a good feeling "Well, at least THAT part of my life is in control." But in general we get more benefit by delegating what we can.

So my advice is this: since you are having trouble looking at it from the "What help do I need?" direction, turn it around. Make a list of the various tasks that need to be done each week and ask yourself "Which tasks can reasonably be done by others?" Farm out AS MANY AS POSSIBLE at first, and only take back various tasks as it becomes clear that you have enough cope to handle them long term.

I can provide transportation much of the time, go grocery shopping and run various other typical errands. Given a bit of training I could presumably stay with Colleen if you needed to go out. If I did laundry I might not be able to sort it (not always knowing which item belonged to which person) and I might fold it in a different manner than people are accustomed to, but I could get it clean and folded so others would just have to claim what was theirs. I can load the dishwasher and with a bit of exploration could unload and put things away (with a few "Where does this go?" questions, no doubt) and so on for typical household tasks. I can also bring guitar and recorder and sing/play for Colleen (or you, for that matter), or bring various Filk DVDs from Consonances and Baycons and such.

[mdlbear]

I don't text, and making phone calls is almost impossible for me (there are currently only two people outside my family who I have called socially, and only at times when I know they're very unlikely to be busy). My cell number and email are on the household web page, http://thestarport.org/suites/Starport/ and IM (which works pretty well for me) info is on my LJ profile.

What might work best is emailing me your phone #; that way if you call I'll at least know who's calling.

Re: Coping

[mdlbear]

Many thanks! Colleen actually can stay by herself most of the day; she only needs expert help getting on and off the IV line. The household chores are pretty well covered at this point.

Companionship and emotional support would be very welcome.

[acelightning.livejournal.com]

I don't do IM - I don't even have any IM software on this machine.

I've just emailed you my cell phone number and a guideline to the hours when I'm likely to be able to talk without interruptions. Obviously, feel free to email me - if my email header seems self-contradictory, just use acelightning (bellybutton) monmouth (freckle) com.

Re: Coping

[acelightning.livejournal.com]

Wow, you've nailed it perfectly! Knowing what specific kinds of help are needed makes it much easier to help. (Although it's also useful for at least one or two people to be able to figure out what needs to be done without being told, because sometimes the person who needs the help either doesn't realize exactly what they do need, or is already so stressed that they can't communicate it well.)

Re: Coping

[mdlbear]

...and my earlier reply to hvideo's comment indicates that I really have no idea what kind of help I need. :(

Re: Coping

[acelightning.livejournal.com]

As he points out, make a list of what you do, possibly with brief descriptions of how you do it - e.g., "Load dirty dishes into dishwasher. Run dishwasher. Put away clean dishes. Note: If dishwasher detergent runs low, only buy XYZ brand, because it's the only kind that doesn't set off my allergies." Then you can make the list generally available to people who want to help, and they can volunteer for whatever they feel most qualified to do.