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I resent the CRAZY situation we are in! When will life get easier?(208 Posts)
I have posted before but just to summarise my situation again:
I have a severely disabled DS who has had recent major surgery.
My DH is under stress because of this, also because his DM suffers from dementia. I do tend to get the brunt of it when it all becomes too much for him. MIL is abroad now but will be coming back later in the year & he is organising a care home for her.....siblings live abroad so it will all be down to him.
I suffer from epilepsy which is under control at present....also have had depression which has responded to medication. I have had a hard time (was also made redundant recently) was near suicidal for a while and very near the brink.....I felt my sanity was under threat! But I have been better recently.
I have just started a new job, however in the few weeks I have been there my boss (who recruited me!) has left, and as of today my boss's boss has resigned. So I have nobody to report to direct & my position feels insecure all over again.
DH has also had problems at work......has been shouted at today by his boss because of some mistake he made. I don't think it is acceptable for him to be treated in this way especially as they know his circumstances. Now he feels insecure too and very distressed.
I have recently been offered a place on the course I applied for to get a professional qualification....but feel selfish for planning this when my family are going through so much. There is a limited window of opportunity to pursue this so postponing is not an option.
When does life ever get easier? I have got so used now to feeling snowed under with problems, I have to keep my sanity intact somehow! How do I cope with all of this?
DS woke up at the crack of dawn again & was playing up, so usual routine....clean him, dress him, make his breakfast, get myself ready for work despite interruptions then hand him over to carer (we pay for care during school holidays) and go to work. Just like what many of you do for your small DC....except that I have done this since he is small, do it now and will continue to do this FOR EVER. And now SS will want us to look after MIL too.
I don't know why I am posting here, am just trying to get my thoughts straight & maybe some advice on how to handle my life. I don't have a lot of fight left in me to take on many more battles. Maybe I am being foolish to think I can handle further education too? I do so want to do it though...but can't neglect DS. Certain people in my circle will accuse me of this, but they are not the people who are queuing up to offer help.
Your ds sounds gorgeous.
You were asking how to not care what others think of you. I don't think there's a simple answer but I did once watch something on tv where someone was paralysed by what he thought others were thinking about him, and the psychologist involved got him to do the most embarrassing thing he could think of. So I think he had to walk down a busy street in a stupid costume and sing or something. It completely liberated him because he realised it didn't actually matter what anyone else thought.
For what it's worth, I think that just about everyone is going through life thinking of themselves/their immediate loved ones 90% of the time. No one really cares that much about other people in terms of judging them. The most embarrassing moments of ones's life are in reality completely forgotten by other people most of the time. It is truly irrelevant what anyone else thinks of you because most people don't stick around for the duration of your life too. As long as you aren't hurting anyone, do what you want, it is your life and you only have one.
I hope you enjoy your course.
Thanks Phacelia for your lovely post. Plenty of good advice.....I am trying hard to break free of caring what people think of me, it is just like one more burden and it has become so ingrained.
I have enrolled on the course formally and have just had an acceptance message back....so no going back now probably!
I feel guilty because I wrote that we dreaded MIL coming back....I don't mean it like that. It is not that we don't want her back...quite the contrary, she is part of the family we all love her incl DS but I just don't see how we can care for DS, hold down our jobs and give her the attention & care she needs. We need this taken off our shoulders I think, so we can just enjoy her company. I am scared we will just be left to get on with it. So I foresee another battle with SS and I don't have the stomach for it.
That is what it was like earlier in the year when DS was recovering in hospital, we were taking it in turns to care for DS whilst trying to hold onto our jobs......there was one issue/drama after another with MIL, knocking on our door, neighbours reporting problems etc. Not her fault at all.....this is not about blame....but I just can't help resenting it. DS nearly died actually, when he had his surgery, and in between we were dealing with this.
I want to improve as many of the component parts of my life just enough for it to be bearable. I feel disloyal even writing like this.....don't expect anyone to have a solution for me, I am just venting. I am tired of feeling cowed and sad, I just want to know I am not inferior, on a lower plane than most other people. I know I am bitter and resentful and take my resentment out on the wrong people, that makes me a lesser person.
I am feeling so angry today & can't help it. DH had to take DS to hospital for a post-op checkup....2 hour journey plus a 3 hour wait to be seen. At the same time has been trying to sort out MIL flight home, apparently only he can arrange this (?). So there he was having to go outside during the hospital wait, on his mobile to the airline, with DS in meltdown shouting, swearing, lashing out. I only found out about this this evening when back from work,am so angry & upset on DS behalf.
Needless to say there are several issues & worries re DS condition which came out of the checkup. Why did DH have to piss about with flights when he had all this on his plate?
DH called MIL & had a mouthful from her demanding to know what was going on, what he was doing about her flight etc, he had to hang up in the end as was too upset. He has now gone round to her flat again to sort out her post etc, just what he needs (not) after the stressful day he has had. No relaxation/down time for him.
I don't know what to do with the anger, there is nobody close to me I can talk to without feeling disloyal. I feel disloyal even now.
More stress today. DS back at school, he is collected in a minibus by the local authority & transported to his special school in another disrict, but the bus they provided (a smaller one than previous, from a different provider - cost cutting of course) can't accommodate all the children & wheelchairs.
Panic as the driver, children's escort & me were all phoning round the transport office etc working out what the hell to do. Of course all this palaver made me late for work. I feel that I am collapsing under the strain, as if my veins are full of adrenalin not blood. I feel sad again & very alone.
I don't think I can cope with everything it is all madness. My registration material came through from Uni & haven't even looked at it, haven't had a chance. When MIL is back she will probably be turning up on our doorstep in the midst of these problems, with problems of her own for us to solve. It will just be a step to far, may even be the end of our family. I worry that the stress of it will put an end to DH.
Sorry I don't have any experience of your issues so no useful advice for you. I would say though that as your MIL is an adult and your DH has siblings (albeit abroad), she and they need to shoulder some of this from you and your DH.
Flights can just as easily be arranged from overseas as from here.
How bad is your MIL's dementia? Is she still able to play an active role is choosing care home and arranging appointments? If so then force her to. You also need to be clear with SS about what you can and can't take on in terms of her care. If your other in-laws aren't happy with that then they need to step up too.
The uni course sounds like it is a lot for you, but it is important that you maintain some time and goals in your life for you, otherwise it will all unravel.
Best of luck
LifeHope - why is your mother abroad, is she visiting her other children? Is she coming back to her house or straight into a care home?
Thanks wimblehorse and GreyhoundBess. MIL is staying with her DD (my SIL) overseas, she will need to go into a care home as she really can't take care of herself any more. But this won't be automatic as she will have to be assessed & needs to be home for this to take place. She is really not well enough to play an active role in her care plan. Other ILs do what they can but being abroad there are limits to what they can do....so much of it falls to DH. I do so want to do these studies as it is something to do just for me, but it will be challenging to fit around everything else and it is only going to get worse.
LifeHope - if I were in your position with a severely disabled (and obviously much loved) son, I'd be tempted to say to your SIL that she's got to stop MIL phoning your DH as he's under unbearable stress. I'd also suggest that SIL didn't put MIL on a plane home unless she was able to accompany her and sort out care for her because you have enough to contend with.
You wrote "I just want to know I am not inferior, on a lower plane than most other people". Of course you are not inferior, far from it. You are a wife and a mother of a wonderful boy who, despite his disabilities, has a love of life which he has clearly got from you. I am saying that because, despite all the hardship, you are working and wanting to study so you clearly have an interest in life and a desire to improve things for your family. You're not a quitter and you will all get through this.
The three of you sound lovely actually. Not on a lower plane at all.
Can I suggest that you ask MNHQ to move this out of AIBU and into Relationships where you are likely to gain some support. Most people come onto AIBU for a bunfight after all
Hallo GreyhoundBess and thanks for your lovely post. You might be right about moving this thread so I may take up this suggestion shortly....this started out as an AIBU but you never know what turn a thread may take. I don't know how to categorise it really as my situation is complicated...but maybe belongs in Relationships sooner than anywhere else. It is the fact that my situation is so complicated and unusual that makes me feel isolated however.
I don't believe in fruitless fighting with people, life is challenging enough.
My little DS is wonderfully happy which considering all he has been through is miraculous. I am in awe of him and so it is hard to be miserable for long. I do make an effort to be happy for his sake.
I think SIL is actually grieving for the DM she has known. There are reasons (tourist visa restrictions) why MIL can't stay there any longer and SIL will accompany her back and stay for a while, so I do believe she is doing all she can.
It is true that I want to keep going and fiercely strive to be as happy as DS is. I put happiness on every day the way I put on my make up; but there is make up that paints on a false face and superior make up that enhances what is already there.
My situation is probably unique, but if anyone out there has come through an extremely painful/traumatic/prolonged situation and came out the other end, please let me know how you did it.
DH called MIL today....she is complaining because he is not coming to collect her & bring her home (she is an 11 hour flight away). She got quite dramatic about the consequences to her health, how neglected she is feeling etc.
Also he spoke to SIL....she is really suffering from the strain & apparently the whole family are getting short tempered & snappy due to strain of MIL situation. Hearing this had a horribly familiar ring....and I know all the strain is going to be offloaded onto us shortly.
I know it is nobody's fault but just can't help feeling resentful & angry....sorry I am venting again.
Hello lifehope I used to be pink not silver.
It is OK to feel resentful and angry, that is perfectly natural, but of course it is depleting your mental energy. You sounded quite upbeat at the beginning of this thread, and I think the course would be good in affirming your worth.
At least SIL should be more understanding in the future, having experienced what you did before MIL went there.
I so want to make things better for you, but what can I say? Can you offer up your anger and resentment to the universe? I used to be horribly self conscious, but am a bit better now, still drop myself in it sometimes (partly Aspergers) but am kind of resigned to that. I can also seem quite self assured, but it's an effort and I need downtime afterwards. Which is what you don't get...
Thanks for your post. I do want to be upbeat and feel confident, and feel in my bones that I am a worthwhile person. The worst thing about challenging circumstances is the anger and resentment they cause....which is often directed at the wrong people (resenting the person rather than the circumstance) which in turn, makes me feel like a bad person and makes me feel guilty.
I am getting enrolled on the course....just a couple of weeks before it starts! so it is all going ahead. No going back now.
DH has been in touch with MIL and she is coming back next month. Apparently she is in denial about the level of care she will need/receive from us.....her idea is that DH should share her flat and she looks after DS while DH is at work. No mention of me or what I am supposed to do...also there is NO WAY in my opinion that she is fit to look after DS even for 5 mins. Her flat is up a steep staircase with no lift & DS is in a wheelchair.
I feel resentful about all this kind of talk, it sets my teeth on edge. Then of course I feel guilty for reacting this way.
I suffer from epilepsy & have had 3 x 'episodes' today while at work....these are extremely upsetting & make me feel vulnerable and disorientated afterwards. I reported them at work but would rather just carry on.....did not feel ill enough to go home though feel v stressed. I feel guilty for notifying work, there may be repurcussions & this is a new job.
Called DH to let him know, he got angry and said it was 'just too much to cope with your seizures on top of everything else I have on my plate'; I just hung up on him but felt guilty for upsetting him. Not really DH fault, he is just doing what I am doing ie blaming people for having problems & issues that we do not have the capacity/resources to handle.
I think part of the problem at least is the fact that your MIL seems unaware of the trouble she is causing. I'm sure that in her right mind she would be horrified, but as it is...
So is it at all possible to arrange between the sibling(s) abroad and your husband what is going to happen: this is the date she is coming home. She is going to her own flat on that date. Your husband is going to stay with her. SS are coming for the assessment on the day after. She is going to a care home as soon as can be arranged. Speak to your and her GP about the stress you are under.
Any complaint from MIL is not taken seriously because she has no idea of her own situation. Unfortunately that is what dementia does.
I knew a gentleman once who lived with his daughter, but had no idea that this was a permanent fixture, that he had a bed and pyamas uostairs and that he was in no way able to 'cook his own porridge every morning' as he claimed. We used to reassure him that everything was in perfect order and he did forget what he (or we) had said.
Dementia is a horrible thing.
Thanks Dutchoma, I know it is not MIL fault that she is this way. She is ill and her world has got very small....she does not have any awareness of the situation either she or we are in. Yes, dementia is just horrible; I wouldn't wish this condition on my worst enemy. But I end up resenting her despite knowing it is not her fault....I am not proud of feeling this way but I just don't know how we are going to cope.
The fact is that I need DH at home and I am worried about his health too. If he has to look after MIL as well as DS I think it will break him. I don't think I can spare him to stay with MIL even for a short time....I am worried if he does this it will set a precedent and SS will assume it is a long term solution.
Please understand that there are physical challenges (among the others) in caring for DS. EG this morning he was fighting with me because I was trying to get him to eat his breakfast. So if he chooses not to cooperate it is very difficult to deal with him & will only get worse as he gets older.
It is exactly because there are so many demands on your energy and that of your husband that I suggested that MIL needs to be out of the equation. There is such an awful risk of either of you breaking down and then everybody, including MIL is up the creek without a paddle.
SS will try and duck out of their responsibility, they will look at your MIL and take her word for it if they can. ("Oh, I can look after ds, no problem, I don't know why everybody treats me as if I am an idiot")
So you must make sure that they realise there is no other option except for them to act or it will be you and/or your husband (and of course your ds as well) they will have to look after as well as your MIL.
The real difficulty is that you don't want to have to go 'behind your MIL's back' and to me, as a rank outsider, that seems to be the only way possible.
Have you found a home for her yet? Or is this one of those ghastly vicious circles where you have to wait before she is back before you can do anything and you have to do something before she is back?
There is a wonderful book called "The selfish pig's guide to caring". Our son got it when my dh became more and more dependent.
I hope you have a good day.
so long as you cope SS will do nothing you have to lay it on the line - well DH does about MIL. the fact he prepared to bring her over means he has to take charge. at teh very least he ahs to line up a carer for MIL as soon as she arrives and fund that until ss care kicks in ? you ahve to make it clear to DH - he has to fund more care for DS or fund care for MIL, or arrange with SS she goes stright into a home.... you simply cannot take on MIL as well as DS without extensive help. it is as simple as that.
you should continue studying/careeer, you need that too.
also lay it on about ds and request more respite - i retained my package this year which is adequate (30 overnights respite plus eight hours direct payments per week) for son tho my circs mean am single parent .
however, if things continue as they are you will be lone parent because dh will buckle under the strain he is showing signs already - i suspect you hold it all together....
Oh LifeHope - I have just read this thread and I feel for you. You have SO much on your plate!
Is there anyway you can get some help with DS's care? I have no idea what might be available but if your DH is negotiating the minefield of care to get things sorted for his DM, then he must have an idea at least of where to start.
Something I wanted to share with you, about hearing positive and negative messages.
I once went on a day course where they showed us exactly what happens when you hear negative messages and positive messages. One of our group, a big burly, but very gentle, man, was asked to stand up. Our instructor, a fairly small elf like character (seriously, he even had sticky outy hair which made him look like an elf!) asked him to hold his arms out straight. He then hung off his arm, this guy was so strong that he only had a little bit of a wobble in his arm, he was able to hold the instructor up, swinging off his arm.
We then all had to criticise his shoes. We all chanted 'We hate your shoes, they're ugly shoes, we hate your shoes' over and over. He then repeated the hanging off the arm trick but this time this guy's arm just came straight down and the instructor landed on the floor. The criticism weakened him physically, and he was unable to hold this instructor up.
We then all had to praise his shoes. We all chanted 'we love your shoes, they're great shoes, we love your shoes' over and over. He then repeated the hanging off the arm trick, and I kid you not, there wasn't the least bit of wobble in the arm. He was like a tree truck, so strong. The praise had given him so much extra physical strength.
And this is what even patently false negativity and praise can do for your physical well being.
What you NEED is to hear positivity, negativity will crush you. You have to say and hear positive things, in order to be stronger. Perhaps you and your DH could take the time to say 3 positive things about each other every morning, as part of the exercise in gaining strength. It will be hard to do, surrounded by so much negativity, but really, it's the only way you will be strong enough to get through all this.
Thank you all. Yes I want to be positive and establish a cycle of positive and upbeat communication. I also need to feel confident. I feel that life is so challenging I can't afford to have any emotional baggage at all...negativity has to go. Getting into and remaining within that upbeat curve is challenging however.
I agree that SS have to take on MIL care as it is not possible for us to take this on together with DS....we can oversee but not deliver it. She is unrealistic about what she can do I agree...she can't care for herself let alone disabled DC.
I am so afraid though that DH will fall into looking after her...because she is his DM & he cares for her. I mentioned in a previous post how upset I was when DH did her washing for her...because she 'couldn't figure out her own washing machine'. I don't know why this upset me quite so much; as DH said there wasn't much effort involved; but it was just the principle, that we were doing her washing at a time disabled incontinent DS (generating tons of washing of our own). I can just see it happening that DH will start doing these chores & SS will see us 'coping' and leave us to it.
I should have said 'at a time disabled incontinent DS was recovering from major surgery' we were getting through one set of soiled sheets a day at one point with DS howling in agony every time we had to roll him over to replace the sheets. WHY were we doing MIL washing? Am I wrong to feel so angry and bitter?
At this time (DS still recovering, in pain and bedridden) also, MIL decided she needed a new curtain pole so DH took her to the DIY store to choose one.
I don't know how we got through those days to be honest, the memory makes me angry and upset. I just can't go back there & need to stop it happening, I am so scared of going right back there.
I know it may seem as if DH has a skewed sense of priorities but he really doesn't....he adores DS but is trying to do the best thing by everybody.
There's nothing to be gained from feeling angry and bitter at your home having been festooned with mil's wet washing as well as ds's essential laundry last winter and, by indulging these feelings almost a year on, all you are doing is adding to your overall resentment at the hand fate has dealt you, LifeHope.
As you previously said you have no space for a tumble drier, your mil's washing, and your ds's for that matter, could have been done at her apartment and dried in her spare room. Or you could have employed a laundry service to relieve you of the chore of washing and drying bedlinen on a continual loop.
It's fair to say that you've been given a wealth of advice and practical suggestions to bring about positive change since you first posted here over a year ago and my fear for you is that, unless you take steps to act on at least some of it, you are creating a self-fulfilling prophecy which will drive yourself and your dh further down the path of ill-health and possibly worse.
Unless you're prepared to throw money at a small army of helpers, something has to give, honey, otherwise something or someone is going to snap.
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