Linda, you could draw a line in the sand, as you say, but it's a pointless manouvre if you don't know what side of the line to stand, or if people will just look at it dumbly and walk around it.
In other words - there needs to be a well- developed plan approved by everyone, ready to switch to, at the point that you nominate. Oherwise it's a futile exercise.
Right now husband is looking utterly exhausted and has pulled back from a lot of things he normally does. I'm also finding my level of fatigue is unpredictable. People (including you lot!) are nagging at us both to rest and pull back, tell people to fend for themselves.
The trouble is, we have responsibilities we are stuck with. We've never put difficult child 3 into respite, because for us the problems it would cause (including the difficulty finding the right sort of respite for him) would be greater than any benefit. Similarly, we have mother in law relying on us (however much she wishes she could be more independent) and to some extent we can't back away from this.
Our kids - the older three are increasingly independent, but when they call for help, they're not merely crying wolf. easy child 2/difficult child 2 calling yesterday about what to do about getting her sprained ankle seen to - I was able to extricate myself from taking her to the doctor myself, because of the strong ties we have already forged in our family (daughter in law looked after easy child 2/difficult child 2). But her cry for help today was also another time when I was needed. I was able to handle this remotely too. But I was needed to handle it.
WHat I'm saying - when we're parents, there are some things we push ourselves to do, because if we don't do them then the alternatives will make life even more difficult for us. We make the sacrifices now, hoping that we've bought enough time and made enough progress, so in the rapidly-approaching future we'll be able to ease back a bit.
It's all a considered risk, what we do. You pull back when you have to, as far as you can get away with. You try to put in provisions and other supports, but what are we expected to do when the unexpected things happen, or supports are not where they're supposed to be?
Linda, as far as confidentiality is concerned - if what they are saying is the truth, then perhaps erring on the side of more communication is better for all concerned. Because if you are on the point of total collapse and all the balls you are trying to juggle in the air come crashing down, and people have no warning, then everybody (you, kt, wm, all the workers) will suffer badly. But if concerns are expressed in time for some extra bit of help to be put in place, or someone to finally organise respite, then surely that is a good outcome? If they all talk among themselves, there is a better chance of someone coming up with something useful in the brainstorming session. YOu don't have to do all the thinking for everybody; it's their job to also put some possible ideas on the table for you.
If this talking together can get you access to more resources, it's a good thing. At least they're thinking about you and your health.
If your health fails catastrophically, it is bad for a lot of people. If you can be supported at the early warning signs so your health does not collapse, it's a big win all round.
It's not easy for anyone to parent a difficult child. When you're trying to manage it alone it's harder. When you're disabled or chronically ill, it's worse. When you're coping with teens, it's unthinkably difficult.
How long has kt been home? How do you feel you're coping? have you got to the stage yet where you feel that you're barely coping from crisis to crisis? Or are you getting to the end of the day tired, but still feeling somewhat capable? or somewhere in between?
Yes, you will look drawn and tired. Your workload has greatly increased. But looking drawn and tired doesn't necessarily mean there's a problem. It just means you have more to deal with.
Remember when we were dealing with babies? All the jokes about lack of sleep, of feeling like you could barely get through each day? Then getting practically no sleep at night, getting up for feeds round the clock? Then trying to stagger in to work five days a week? People telling us we looked tired and worn out - but nobody then said, "You need to see your doctor." No, people just laughed and said, "This is your life for the next 18 years. Get used to it."
No sympathy then.
So you are really the only one to say if you're really struggling to cope or not. Because of your past health problems, people will now be watching you for worrying signs, even though the same signs in parents of a newborn wouldn't raise an eyebrow.
Sharing knowledge and information about how you are, is the best way to keep people off your back. When people feel like they're kept in the ark about how you are really coping, they will be more likely to get pre-emptive. Keep them in the loop, make it clear when you are coping and when you need more help, and they should be more likely to let you set the pace.
Be good to yourself, try to fine ways to relax your brain as effectively as possible. And use all the tools you have available.
Marg
