I can't go on any more....living with stress and anguish so long

[LifeHope11]

My DS (11) is severely disabled.....unable to walk, has severe learning difficulties. He went through major surgery last year to correct (not cure) his disabilities....was a major ordeal but he was through the worst.

In the meantime I was made redundant in unpleasant circumstances, it took me months but I managed to find another job.

So I thought that though our situation was challenging and that the stress had taken a greater toll than I even knew at the time, we were over the worst and could look forward to a better future.

But: DS has developed complications from his op a week or so ago, the site of the surgery has turned septic and we are having to rush him in to see the consultant & try to get the better of it.

In the meantime I am struggling with my new job & it is made clear that I have to be performing better in the very near future.

I feel the pressure just building up & building up and I feel I can't take any more. I wanted to do some further education....but feel there is just no way I can take this on right now. So I feel I am selling out my future as well as I have let this lapse. All around, I feel that every prospect I had of a brighter future is just slipping away.

I have had enough of everything being such a struggle. DH struggles too as he has separate family pressures as well....so he gets resentful & angry & lashes out at me.

If it wasn't for DS I think I would be far better off dead. I am on antidepressents but think there is a limit to what they can do; they can't change our circumstances. For the same reason I don't see how counselling can help. I feel I need support but it is all of the practical kind, ie. for God's sake please please take the pressure off me just for a while so I can try to come to terms with all this, and find a way to live through it and come out the other end.

that is what op need to explain to SS - in asking for respite - or to local hospice - that due to h's MIL responsibiltiies she is sole carer for DS.
therefore she needs repsite help - whether i or out of home.

when i was with nowexP he was unable to care for DS because he couldnt cope with him (then had severe MH breakdwon anyway) so SS were sympathetic to boosint glevel of repsite care in form of intially corssroads carers then direct payments to employ own carers.

her gp can also spaek to SS or write suppotring letter saying she needs help.
if she get sGP to call SS and say she is at breaking point and furthermore h cannot help due to MIL THEN SS CAN sort out urgent agency carers to support her in the home.

local childrens hospice can provide both specialist counselling services and outreach support or respite care (and can accomodate her wih her DS if that si what she wants - but she will get help wtih DS and a break).

but she does need to tell SS and hospice she is at breaking point to get them moving and her GP needs to be told to ACT and speak to SS too regarding extra help with her DS not just fob off with a sick note....

and worse case scenario she takes DS to childrens ward and says she cannotcope and they msut ahve him overnight or SS told they need to arange foster care urgently - if Op DOES breakdown this will have to happen anyway.... if h cannot step in.

if op says -~I can cope if you can help with these hours no these days to do xxxx and yyy with DS" then there is help available but she needs to shout for it.... and emphasise that she is sole carer due to h's family commitments

sorri typos

I will try to get more help & support for us and for DS - just the prospect of doing so & fighting for said help is daunting. At the moment I am just trying to get through one day at a time...am petrified DS will deteriorate, am scared about my job, I just HAVE to step up to it.

We got a letter from our current social worker to tell us she has resigned & there is no replacement appointed yet. So, no SW assigned to us at present.

I would just like to make clear that DH easily takes on his share in looking after DS, there is no question of him leaving all care to me on the contrary it is very much shared. This is what I am scared about: he is caring for DS, caring for MIL, working full time (& often weekends, Sundays as well as Saturdays, to work back time taken during the week for caring activities). I don't think anyone can do this indefinitely, am scared for him & am full of resentment that he is left to care for MIL single handed....not really the fault of the rest of the family, some (by no means all) do their best but are geographically far away.

Try www.google.co.uk/search?sourceid=navclient&aq=0&oq=carers+uk&ie=UTF-8&rlz=1T4GGHP_enGB472&q=carers+uk&gs_upl=0l0l1l225874lllllllllll0&aqi=g5
or
www.google.co.uk/search?sourceid=navclient&aq=5&oq=p&ie=UTF-8&rlz=1T4GGHP_enGB472&q=princess+royal+trust+for+carers&gs_upl=0l0l2l253162lllllllllll0&aqi=g5s1

Union might help because you have legal rights at work as a carer
Good luck!

Probably a daft question, but if family abroad know you are at breaking point and want to help, could mil go and stay with them for a while, to give you a break ?

Lifehope, sorry to see that there has not been much improvement to your life, rather the opposite, since last you posted!

Have you managed to get a proper diagnosis for your mil? With Dementia, it might be time to think about a home for her if she is unable to live on her own, and SW should be able to do more, you just need to push for it.

they can allocate you a social worker today to do assemment if there is urgent need. they can arrange emergency carer to come and help you if there is urgent need.

you can ask the manager to allocate someone today. get our gp to tell them is urgent - but you need to present a plan fo what you actually asking for eg agency carers to help or what? on whch days for how long and to do what? what help have you had up to now?
regardless of h's willingness if he cannot because of MIL you need to say so to SS .

try local hospice as if ds has health issues then hospice would best placed to care for you and him.

do you have contact details for childrens hospices locally? give them a call.

also the waving not drowning line at working families -
www.workingfamilies.org.uk/articles/parents-and-carers/caring-for-disabled-adults-and-children/waving-not-drowning but your rights extend to your rights to unpaid leave etc

Well I am just back from spending the night at the hospital.....DS having been rushed in last night having developed post op complications which are not clearing up. To cut a long story short, he is at risk of blood poisoning & has to be kept under observation to see if he improves. Further radical & painful treatment will be needed if he doesn't. He won't be home before Tuesday earliest & probably not then. I am swapping overnight shifts with DH, he is staying over tonight. Thus we spend our weekend intended for rest & recuperation.

How do I square this with having to go to work on Monday, having to apply myself 100% and meet tight deadlines? I can't afford to be out of work and know that my boss's sympathy is seriously finite. How do I handle being fearful as, when walking around the corner to my house, I might be met (as has previously happened to us) by a neighbour saying that MIL has turned up on heir doorstep confused as she has locked herself out/got confused etc and I need to help her out?

I am so stressed I feel faint. We live near a lake; I wish I could walk straight into it & never come out again, were it not for DS I might. I do fundamentally love life but this is what I am being brought to now. Many of you have kindly suggested strategies to improve things over time, but I NEED HELP NOW AND IT IS NOT THERE, I CAN'T FIGHT FOR IT IT NEEDS TO JUST BE THERE

Sorry you are having a hard time. But help is not going to fall from the sky.

What are you doing about your MIL and her dementia diagnosis? You do realize she is better off in a home, and once that is sorted your dh (AND YOU) will get breathing space as he can focus on your family and your dc, and not his mum 24/7.

Hi LifeHope

Please, get yourself away from work, and apply some of the energy you are allocating to it to yourself, and getting the help advised by the others. Work should be your lowest priority

I remember your last threads too Lifehope.

So sorry to hear your DS is so poorly. I will remember him in my prayers for a quick recovery.

I'm afraid I've only got the same opinion as last time you posted - but even more so now: something has to change, you clearly cannot continue under this amount of stress. DS - no, MIL - no... that only leaves your (or DH's) job. One of you has to ditch their job and sort out the professional and practical help you need.

I know it's scary contemplating poverty.... but it's better than complete mental breakdown or feeling suicidal. And it needn't be forever.

Please give it some serious consideration. and

Yes I know....I am looking for rescue and there is no rescue to be had. I have to find the solution for myself. I am going from person to person asking ' What would you do if you were me?' and nobody knows.

It is horribly unfair that I have to handle this and find the solution on my own. But the fact that it is horribly unfair does not make it any less true. I called Samaritans this evening & the young lady I spoke to did not have a magic solution either. There is nothing to be done but carry on putting one foot in front of the other, as I have been doing hitherto. Sometimes there is nothing left but the moral/spiritual skeleton of a person, doing what has to be done. Maybe if I continue to put one foot in front of the other for as long as it takes, one day I will wake up one morning and realise I have a life worth living again.

I don't think you have to find the solution on your own as such, but you do need to properly accept that with a DS and MIL who both need a lot of looking after there is much less time for anything else. Instead of making room for those demands you are constantly trying to add them on to all the other things you have got in your life. Result = impossible level of stress & worry.

Something has got to give.

You cannot (nor probably want to) ditch your family. The hard fact is that the only thing you or your DH can ditch is the time spent at work. That is the decision many carers very reluctantly come to. They don't choose to do so but realistically it is the only option open to you.

IT DOESN'T MAKE YOU A FAILURE. It simply is the only option available.

When your DS was diagnosed I'm sure both you and DH were determined to make it work whatever it took. That grit determination that you have as a parent for your DCs can actually lead you to expecting far too much from yourself - ironically it doesn't serve your DCs well in the end either.

Take the time off work. Be honest with your boss.
Can you work n a laptop at the hospital ?

Your ds comes first .

Get your gp to sign you off with exhaustion or stress for two weeks to give you breathing space.

Keep in touch with work but be honest with them that this is a short term crisis.
MIL you have to hand over to someone else

Hi LH11 - so sorry for everything that is happening to you and hope that your lad recovers soon.

You really are between a rock and a hard place, aren't you? Something will have to give!

I, too, remember your previous posts and your despair! Seems as if your MIL is getting worse; sadly, this happens with dementia and maybe your DH is unwilling to recognise that his mother is losing it!

Really don't know what else to say but don't think that you should be worrying about work, atm.

Sending very best wishes to you and yours - hope that there will be a successful resolution somehow.

You are in the Sandwich Generation. You have a young child that needs you, and elderly parents that needs you too.

But with your mil, there is help to be had if you can just get your dh to see that he is failing her by NOT getting outside help. She is elderly and vulnerable. He cannot keep helping her but picking up her slack. It is not what she needs. She needs her condition to be managed by health care professionals, and possibly medication, not "concealed" by her son trying to keep everybody's head in the sand.

As long as your husband is not facing these facts, he is failing both his mum, and also you and your child, as he is focusing his efforts in the wrong place. And you are on your own. It is no fair on you.

Hope your son is getting better today LH and you're coping okay.

My DS has to have further surgery which is taking place on Thursday.

DH is staying over tonight & stayed last night, I am back at work for now.....I feel v tired & could be more productive. I have requested Thursday/Friday off....am waiting to hear. Unfortunately my job isn't the kind of work I can conduct out of the office....I need to be physically there.

I think I will do my work as much/as well as I am able....if it proves to be beyond me at present the situation is out of my hands. I have said all the right things about being committed to my work but this being a crisis I need to get through etc so just have to hope they give me leeway.

I did a very selfish thing yesterday evening....got home late last night having been told that day DS needed the surgery, collapsed on the sofa with some food. Then I heard the knocking at the door & MIL calling my name through the letterbox. I'm ashamed to say that I felt I just could not cope with it & ignored it/pretended I hadn't heard.

go to the corner you bad dog!

oops, that was tactless to not mention your boy! I was trying to make you laugh but forgot to mention your boy. Hopeless - sorry OP. I do hope it goes well and that he makes a good recovery.

Do you think your meds are beginning to kick in? I do hope so. I met someone the other day who was really struggling (anti-d meds bedding in) and the next time I saw him his face was beaming. He'd got over the worst.

I do hope all goes well with your DS.

And here's hoping that MIL will come round less if she finds there is 'no-one in',

Really sorry to hear about the difficulties you're currently facing.

Does your DS's team have a clinical psychol;ogist attached. I know that with dd although the psychologist will deal primarily with the needs of the child they will also help the family unit. i,e if you are struggling it impacts on dc. If they can't help maybe they can direct you to more specailist cousellors.

With MIL if dh is very very stressed with the situation and she is confused and wandering, is a rethink for her care required? He may not like that and feel a huge amount of guilt but ultimately something has to give.

PS Best wishes for the surgery my thoughts are with you. It's a horrible lonely place.