I need to get my head around this then explain it to my family

[Livingtothefull]

This will be long so apologies in advance:

Recently my family (DB, Dsis, their DCs and my Dparents) had a family get together, which I did not attend. A couple of them contacted me afterwards to tell me (nicely) how disappointed they were that DS & I weren't there….I told my Dsis briefly why I felt I couldn't go & she wants to meet up this week to discuss.

I didn't go for a number of reasons. DS (14) has a severe disability & is wheelchair bound. Going anywhere is quite an undertaking esp in winter….yes we could have ordered a taxi each way but I need to look after DS personal care which means taking at least one full change of clothes just in case, pads, wipes etc. Then the care itself is strenuous, involves lifting him up & downstairs and he is heavy, cleaning him, disposing of waste etc. And getting him to eat is no small thing. Sometimes I feel I just can't do it.

There is a wider issue though…I feel isolated from my family, much as I love them I feel there is little to talk about any more. I don't want to go through the 'We're such a happy family, having such a great time together' and hearing about how marvellous I am the way I cope with DS and manage to be so positive. I feel that I would be lowering the tone to talk about how tough I find it sometimes. And it is not as though they don't also have problems.

I think it came to a bit of a head at Christmas (although they don't know anything about it). We all went to DB house and I was upset that his DCs didn't come downstairs even to say hallo and happy Xmas to DS (or to the rest of us) when we arrived. Just stayed upstairs where DS couldn't access and wasn't invited to join in, and came down for Xmas dinner. But as I say nobody knew how I felt,

It is not that they are not willing to help, do things like help me lift DS etc that obviously need doing. But I am otherwise left to get on with it. I don't feel it is all their fault, we are all busy etc, and I don't want to say anything as the worst thing of all would be for them to put themselves out for DS under duress.

My problem is how to explain all this to my Dsis in a way she can understand. I am not asking for anything, but I just want to tell her how things are & that I can't go on perpetually feeling guilty that I can't just fall in with the rest of the family and go through the motions of us all being happy together. It may be inevitable that I will be more isolated from them & we will all just have to accept it.

Annarose has it spot on. It's so much more convenient to almost beatify carers, particularly those who look after "the disabled children".

The truly caring answer is not a faux concerned head tilt. It needs to be "is there anything we can do to make this a bit easier"? It's that subtle difference between "aw, isn't our Living just wonderful to do all this for her DS" (well yes, you have no choice. To not do it would amount to neglect, ffs.) and "this is so difficult, Living, you must be so tired." The first one shuts down conversation with a verbal pat on the head, while the second one invites you to let off steam and just feel heard. The first is a pure platitude, while the second suggests at the very least a token amount of concern, even if the person who says it doesn't have the first clue as to the physical and emotional toll that caring for your DS has on you.

So yes, I think you do need to articulate how you're feeling, before it festers and you feel all the more isolated from the "big happy family" vibe.

That's a good idea Annarose, to change not the narrative but its tone.

Yes I feel that I am not able to express that I am dissatisfied with things. It is as though it is just not done to express unhappiness with how things are done in the family. I could challenge that though not sure where it would lead….I may be the one who pays the price due to looking bad.

I think there is so much hurt, built up over years that it would be very hard to express, I don't know where I would begin. I would find it very difficult to open up with it now, I fear where it would lead, it would be like unleashing an open sewer of emotional pain.

When I think about it the joking, turning things into funny anecdotes, is something I do a lot. I used to see a counsellor who asked me while I laughed and joked while recounting upsetting episodes to her. It seems to help me put some clear distance between me and my life's clutch of emotional upsets; so that, rather than actually suffering, I can feel as if I am presiding over them.

….asked me WHY I laughed and joked

Yes ouryve, I think that it is so common for carers to be as you describe it 'beatified'; I suppose that their being such wonderful people, what they do comes naturally & it lets everyone else off the hook.

But I am just there for my DC just like any other half way decent parent. I am no different. I have tried to explain this sometimes but am actually flatly contradicted, sometimes to the point actually of almost being shouted down. They won't have it that I am not 'wonderful'. It makes me feel like I am regarded as some kind of breed apart; it is, subtly, incredibly isolating.

I find a good response when a patient tells me how wonderful I am is a breezy "Well, wouldn't you do it for me?"

It implies you think they would, which is flattering. And its a leveller. It punctures all that "Angel Syndrome" bollocks. After all, if they would do it for you, it makes it less saintly and more just an average human caring response, as they certainly don't think of themselves as saintly.

Its also not retorical, so they have to answer. Might be particularly useful in your case, as it makes your family actually contemplate being in your shoes for one split second before answering!

Maybe a way forward would be to ask for some specific support that would help you. Sort of easing them into your world and problems at a gentle pace, instead of plunging into the larger, less easy to define overall issue.

I hope that makes some sense. I think it shows that I don't like to rock the boat (I am a coward).

We tend to meet family individually these days not so much in big groups anymore. It just didn't suit us as the chaos was difficult for my DS3 who is autistic and also it's easier to be excluded when there are lots of people as they can get busy with each other.

When it's just us and say my brothers family we interact with each other and go at a pace that suits DS3 because we are not having to fit in with a crowd.

Can't offer any advice but just wanted to say that this is an enlightening thread for me, as someone who's not yet had experience as a carer. These details and ideas about how you might feel in a family situation are not something you hear about every day.

Thanks ravenmum for your post. I am glad that you have found this thread enlightening and I do fully appreciate it is hard for anyone who has not been there, to understand the issues faced by carers. And I really appreciate everyone's posts esp those who have shared their own situations/ family circumstances.

Well I had the chat with Dsis and said more or less what I have posted here. She did understand where I was coming from and agreed with me about DCs' behaviour at Xmas (they are mutual sibling's DCs not hers).

I said that due to my circs the consequence would probably be that I would always be one step removed from the rest of the family…..she seemed to agree with me & in retrospect feel a little hurt by this.

The worst is that I got another call from a relative that they were 'bitterly disappointed' I wasn't there…so feel guilty again. It is as though they are wanting to pull me into the family but don't want to break down the barriers to enable me to do this.

:( just remember, If you truly want to go these gatherings, it is OK to call someone up and ask them come over and help you.

I was a nursing assistant for years (in the U.S.) so I know it is a lot of work just to go through daily routine that everyone take for granted.

I think I am going to have to withdraw a little bit further now I think…..don't like the person I am turning into.

I was invited for an evening out in town a few nights ago that my Dsiblings had arranged, it was a belated Mothers Day celebration for DM (a show). So I wanted to be a part of that.

I got there and one of the Dnephews had come along….yet DS hadn't been invited although he is another gc (mind you it would have been v difficult to get him to & into the venue due to his disabilities). Apparently other DNs would have come if they could in which case DS would have been the only gc not there. If it was adults only occasion it would be different.

I am really trying to work out if iabu, am ready to be told if I am. My DB and DSIL organised everything, I didn't have to lift a finger. DB and DSIL have been wonderful to DM, have done more for her than I have (though think they understand I can't.) They are free to plan whatever they want.

But I just feel so sad and (unfairly) feel as if DS has been thoughtlessly left out of this…as if it was such a given that DS couldn't attend that they didn't even invite him, and that is the way it is going to be.

I actually felt quite depressed and down that evening as I have done lately…I have just lost my job (posted elsewhere) and had a follow up hospital appointment for DS booked the following morning re one of his many serious ongoing issues. But I didn't say anything to Dfamily at all about this, just made a good show of being happy, a big false smile plastered on my face. I am very good at faking the 'glow' in the eyes of genuine happiness. I did as much acting that evening as the people on stage. I bade them all a cheery goodbye then sobbed when I got home.

I am thoroughly unfair….these are good people who mean well. And I wasn't the focus of that evening, DM was. I would lower the tone and spoil things by saying how I felt. But I am finding this really hard to cope with.

Are you in contact with your siblings much outside of big family gatherings? I think before withdrawing completely, you need to get better at dropping the fake veneer. Try being assertive and tell them when you feel excluded or when you feel that they've been tactless. Let them know when everything really is not OK.

If that backfires and they really don't want to know, then at least you know where you stand and that you're justified in stepping back.

It might not work like that, though. It might actually clear the air. No more pretence for the sake of Auntie Living. No more knowing what to say and proverbial pats on the head.

I don't want to withdraw from them entirely ouryve, but don't often see them often outside family gatherings……we are all v busy so it is hard. And at family gatherings it is all so firmly about 'we are a loving family having fun together' cutting for that would take a fair amount of courage & I need to be clear about what I am doing if for, what I am expecting to gain and feel I have a reasonable chance of getting it by being honest about how I feel

I feel that things are potentially not OK but I am just not sure, maybe I am expecting too much, maybe I am the unreasonable one.

I would love to have a more honest relationship with them but want to be really clear in my head what I am asking from them/what it is reasonable to expect. It will be easier to assert myself once I am clear of my own position.

Hi livingtothefull, hope your ok. Your doing great but it sounds to me like you might be struggling a bit.
Do you get any respite? Are there any support groups around you could access?

Hi Sadit, thanks for your post. Yes I am finding it a bit of a struggle at present…..not a lot of friends at hand I'm afraid. That is why I think I am tempted to lean to heavily on the people who are here, and ask more of them than is reasonable for them to give.

I do get support through respite though of course would always like to have more. I do feel I am effectively on my own to deal with a lot of this.

Please forgive me if I’m saying the wrong thing (and sorry that this is a bit long). I know very little about situations like yours; and the little I do know I’ve picked up from reading some threads in the SN area (plus a bit of commonsense). I think there’s a strong impulse for parents of SN children to enable them to live their lives to the fullest extent possible, including (probably especially) social situations in the way that anyone else would. And quite right, too. That’s why there is legislation requiring many facilities to be wheelchair-accessible, for example.

Do they not really have a clue about your life? Or are they not wanting to have a clue? You said that they help with practical things like lifting, but that sounded to me like someone doing the washing-up and a bit of hoovering for someone whose house is a mess because of depression. That’s bright and breezy and feels good, but what the depressed person really needs is a cup of tea and a chance to talk.

Or are they so used the situation that the obvious clue, i.e. the wheelchair, and maybe thereby your situation, has kind of faded into the background? If so, they need a wake-up call.

How much have you shared with them about your son’s situation? Perhaps you could photocopy some relevant information, maybe even some of your son’s medical reports, and give those to individual members of your family. I wouldn’t advise scanning and emailing, because it’s easy for people to skim over words on screen, whereas they tend to pay more attention to something on paper.

It’s not your fault that they’re not more understanding. You shouldn’t have to educate them. But maybe give them one last chance by being openly clear about your situation and how you feel. If they then don’t change their attitudes, maybe that’s when you have to distance yourself from them. At the moment, they don’t seem to be helping you at all.

And, at the risk of sounding ignorant and patronising, is there a group that your son attends that also hosts social events to include families? If so, have any of your family attended? Maybe that would help them get a clue that family is about inclusion, and that means family occasions start with being wheelchair-friendly, coeliac-friendly, allergen-friendly, and so on.

Hi Wanda, no you are not saying the wrong thing, thanks for your post. Yes I have tried to share with them what we are going through with DS, to the extent that I have shown them paperwork re his condition or quoted from it. Sometimes I have called them in tears following hospital appointments on occasions when we have been told that DS needs yet more surgery.

The response has been - yes concern and sympathy obviously - but also I feel bemusement, as in 'I am very sorry to hear this but I don't quite know why you are telling me now - maybe you should wait to discuss it with me at a time when you are more rational and less upset'. This is speculation on my part obviously.

I think it is very hard for them to relate to what it is like for DS and us. No they haven't been to any 'disabled-friendly' events that DS has been invited to. DS has had frequent hospital stays of up to 3 weeks due to his condition, and on occasions we have feared that he would not survive; one family member (my Dsis) has come to visit him in hospital, once. My Dsis came to visit him & me once after he was discharged, I feel she is really trying to understand.

I want them to understand what it is like but I don't want to lay the guilt on them. I am not free of blame in this; maybe to a certain extent I have kept them at arm's length. DS was very sick and nearly died when he was born; I remember DH and I agreeing 'If we ever get to take our boy home, he is coming home to a happy home'. And we have tried to stick to that but the downside of that is that we try too hard to determinedly 'do' happy regardless of whether we are actually feeling happy.

I don't want them to feel guilty, making people feel bad rarely works and the shouldn't feel bad - they are GOOD people - but I want them to understand that things are changing as DS grows up and I am being forced to change too. Either they support us - see what is happening & understand that family gatherings will need to be reconfigured so that DS needs are at the very centre of them - or they will be unwilling to do this in which case I will have to take several steps away. I want to find the language to explain this to them.

Today was the last day of my job & I am unemployed again. My dfamily don't know this, I don't want to tell them or the reason; that though my employers thought I was doing a good job (so they told me) they have found somebody else who is more experienced who they thought could do a better one. I haven't left on a bad note but it was just felt that a different human being from me altogether was required.

We took DS to see his consultant this week & he is likely to need more surgical intervention. It has to be said that for such a wonderful boy (I think) who loves life so much, life does far too little to love him back.

The enormity of what we have to deal with just hits me; I am just astonished I am sane. I will have to go out now and try to get another job, I need to have one to keep the roof over my ds head so wish me luck.

I have to hold onto my confidence despite having been got rid of because somebody better than me was identified. I have worked there nearly a year and my boss's boss 'forgot' to say goodbye to me today although I have worked there nearly a year, is that acceptable?

I absolutely cannot afford to doubt myself. I need to be totally strong for my DS. How to do that though, in the teeth of all this 'We found somebody better than you' business? It is absolutely essential that I rise above these present circumstances. At a minimum I can't feel outclassed by my family….some of them, I felt, were outright sneering at me the other day. That is something I have grown up with, I am tired of not being good enough. How can I just stop caring about the fact that nobody has anything good to either think or say about me?

I have thought about suicide a lot lately; but can't do that because I am there for my DS. I can't believe I am dealing with all of this, how do I fight back?

Hello livingtothefull

We hope you don't mind, but when these threads are flagged up to us we usually add a link to our Mental Health resources - here. You can also go to the Samaritans' website here, or email them on [email protected].

Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek RL help and support as well.

Sorry for hijacking your thread , and we really hope things start to look up for you soon.

You sound like an amazing person living
I wish your family appreciated you and your D's the way they should
I'm sending you and a great big virtual hug
Don't stop posting . when you find the right job, the one that's out there waiting for you you'll be glad not to work somewhere the boss is too thoughtless to say goodbye. You deserve better.

Livingtothefull - You poor poor thing. I really do think that you are depressed and need to talk to a doctor about it.

Your self esteemm has of course taken a bashing - it does when you lose a job. And I think you put far too much pressure on yourself to be this perfect person, which none of us are. You obviously work very hard and sometimes it feels as if it is for nothing. It isnt, but by heck it can feel like it.

There is no shame in asking for help from your Doctor, it doesnt make you any less of a great parent or a hard worker. Ask for that help this week, tomorrow if you can.

Take care of yourself this time, so that in the future you can continue to take after your DS.

I wish I could give you a hug and a break (and a job), but I cant in RL so here are some and my thoughts.

Oh my goodness you are having a tough time. I agree with *comeinsitdown" re getting some help from your gp, it's so important to look after yourself if you're caring for others but it's often the first thing to go when you're up against it. Remember what they say in the plane safety talk, sort your own oxygen mask out first! And do pls keep coming here to talk or just vent. Hope you find work soon x

Hi Livingtothefull. I'm just a lurker with no advice for you, but just wanted to post to offer my (virtual) support. It seems that life has dealt you some incredibly tough cards. How could your work just get rid of you like that? Did you not have a contract? That really sucks.

I hope your DSis starts to understand a little what you're up against.

Hello Living

Sorry to hear that you have lost your job
Are you sure that your employer went through correct process before ending your employment ? they cannot just end your employment without good reason. If your employer was unhappy with your work, they should have taken steps to train you & put in a personal development plan for improvement over an agreed time period etc
It may be worth asking CAB for advise/second opinion
Secondly, did your employer offer to provide you with a reference for future employment ?
Suggest reading the employment sections

I know you are doing a great job looking after your child, but do you have any opportunity for some respite care ?

Does the childs father help, I hope he is paying some contribution at the very least if not offering any other support ?

Please take comfort from your friends & family in real life
They cannot read your mind, so they cannot help, if you dont tell them
A problem shared is a problem halved

Please keep us updated

Take care & stay strong x

Thanks all for your messages.

Yes I get support from DS's DF, that's all fine.

The work was a temporary assignment, it was never expected to last forever….but I hoped it might last a few months longer. Basically they found someone more experienced than me in my field who could work more independently, so didn't need me any more.

It is actually incredibly easy for employers to get rid of people….until you have been there 2 years and can claim unfair dismissal. I may not like the way it has been handled but don't think they have acted illegally.

I am sure I would get a reference as we left on good terms. But I am finding it a v difficult job market, temp work is all I have been able to get over the past few years. Now at interview I am being asked 'Why have you moved around so much?' As if it is my choice…

I have worked incredibly hard to make myself employable, got myself qualified (self funded) whilst working full time and caring for DS. I do often wonder why I bothered.

I will follow up again with my GP as you suggest, though I do think that I am not mentally ill but am reacting normally to challenging circumstances….so don't know whether they could help really. I do feel depressed, it is as if every time I struggle to the top of a mountain I find another, higher one hidden behind the first mountain that still needs to be climbed. I don't really understand why life has to be so hard.