To feel that life is short changing us and feeling bitter as well as scared

[LifeHope11]

I have a severely disabled son who is still bedridden following an op on his hip. After four weeks he is bedridden, we have managed to get a community nurse to see him every other day but he still has bedsores. He is only 10.
I have to go to work every day despite this, I managed to find a job after 9 months of unemployment following a very traumatic redundancy. I hate leaving my son every day but I have to work and earn for the family, we will need my income and I am terrified of being unemployed again.
I feel that I am not sufficiently respected at work, I have a postgraduate qualification and am working towards a masters degree but am spending most of my time booking travel, scanning and sending documents and setting up meetings. This feels like a waste of my talents but I can't afford to lose this job, it took me 9 months to get it.
I want to ask you the following:
Has anyone else had to cope with the feeling of having failed in life and fallen short of your potential? How did you deal with it and have a happy life regardless?
I feel very unconfident and fearful, I think it is inappropriate to feel this way but don't know how to stop it. Does anyone know how to stop feeling fearful and to find self respect and self assurance? I just want to find a way to search my heart, locate the fear spigot and turn it off.
I want to stop feeling bitter and as if I am putting in colossal effort for meagre returns. I would like to feel as if I am really living. Do you have any advice as to what I should do? What would you do if you were me?

[bakeyouhappy]

Sorry to hear about your son, and sorry you are feeling down on yourself. It sounds like a very tough time, you should be proud of yourself for doing what it takes to get by. Hopefully someone will come along with some more practical advice...

[ghostofstalbans]

how old are you? when you get your masters surely you will get a job where you're more respected?

[rhondajean]

I think you posted about your son before. Im really sorry to hear he is no better.

First thing - you are allowed to feel sorry for yourself. For a bit. Life is shit at times. And tough and unfair and the whole shebang.

I have two suggestions. The first is that, you sound a bit depressed, and given whats been going on thats only natural. You might want to talk it through with your GP.

The second is something that works for me. When I get like that, its because I feel Ive lost control of my life. Some things you cant control, like the situation with your son. I sit and make a list of what I could change and control, and then a list of how I could do that, and what tiny steps I could make that would get me a wee bit closer to that. It makes me feel better to have a Plan.

Lastly, and something I just thought of. Work. You are in a difficult situation at home, and maybe a job thats not too demanding is a good thing just now. But if you really feel its making you worse, have you tried using your initiative to do other things, or offering to do other things? You havent fallen short of your potential. I know very good veyr qualified people who have been applying for jobs for ages and not even got an interview. Its a tough time just now.

You take care xx

[saintlyjimjams]

Can you work for yourself? I have a severely disabled son and just found I couldn't WOTH. In the outside world's eyes I probably am underachieving (several postgrad quals) but having flexibility etc is more important.

In terms of really living I think I had to come to see that my son was always going to be severely disabled and that would never change, that we have one life and even if that's a severely disabled life it's one to be lived. So I just stopped waiting for him to progress a certain amount before trying stuff and just did it iyswim. We eventually found an activity my son adores and being able to do that has been life changing for us as a family. 2 years ago (when he was 10 actually) I had the most awful summer of my life, this year we've had the best summer since dx - and all because we found an activity.

Are you getting enough support from SS etc? IMO that's essential (we now have a good respite package in place as well).

Bed sores sound awful, poor thing :( I hope they are being properly treated and he has the best matressess etc to prevent them - I'm not sure who is responsible if he doesn't SS, or GP? Would be worth chasing up though.

[wordfactory]

Hey now OP, slow it right down.

Look at each problem in turn. As someone lese has said, let's look at what can be improved (not fixed in its entirety - sometimes that's not possible)...small steps and all that.

Your son. What is his prognosis? Will his op improve things? Could the nurse increase her visits? Who looks after him when you are ot there? Are they doing a good job?

[OddBoots]

I know the bedsores aren't the main point in your post but I have recently seen this website and had some of the products in mind for myself if I have more surgery. They're not cheap but I think some NHS areas are funding them so it is worth asking your GP.

[CristinaTheAstonishing]

I'm sorry to hear you're feeling so low at the moment. You're not underachieving, you're doing the best you can with the time and energy and opportunities you have just now. I would speak to the GP about your low mood. I hope you can get good care in place for your son.

It's tough with work at the moment but you probably felt fearful and unconfident when you were unemployed, so that wouldn't be a solution.

I didn't use my qualifications for 10 years - also to look after my son (different type of need), then the others. I'm back on track now. Older than 90% of my colleagues at this level but wiser too, in that I know I haven't wasted my time, I did something valuable. This gives me confidence, it wasn't time wasted, I look back and I know I couldn't have done anything better. I hope you can get to feel the same and can look at this time now as doing the best you can.

[kelly2000]

Lets get this straight you have a disabled child who is currently bedridden, you were made redundant less than a year ago, you have spent nine months job hunting, are now working full time, worrying about son, and studying for a masters. You are doing, really, really well stop being so hard on yourself.
It sounds like you are an amazing mother, and I know this might sound like a cliche, but that really is the most important thing in the world.
As for your job I can understand you being frustrated, but again your child is more important. If your job had more responsbilities could it stress you out more, lead to extra hours when you should be at home, taking work home with you etc. I would at the moment concentrate on your son, and studies, and think of the job as something to pay the bills, and keep your cv from drying up. I know it is difficult, but there are only so many balls you can juggle and if you keep judging yourself you will burn out. Do you have any relatives or partner who can help with you son? Do you have any free time to have a bit of me time in the evenings -half an hour listening to soothing music putting a face mask on, watching trash TV etc? Take care of yourself, and stop putting so much pressure on yourself.

[MoominsAreScary]

Does your don have an air flow pressure mattress,? If he has been bedridden for a while the NHS should provide one. He should also gave a tissue viability nurse who visits if he has pressure sores who should be able to advise you.

I'm sorry you are feeling the way you are and would say it's totally understandable under the circumstances. You have alot to deal with, do you think you could have counselling, someone independent who is there to listen to you might be a benefit to you

[DiamondDoris]

Yes, I feel bitter at times too. I suppose we should release that bitterness somehow though. Shit marriage, ending soon . Diabetic DD and ASD DS, 4 miscarriages, good degree/experience but can't find a job. But I am optimistic and live in hope of a better life... having said that I can understand your bitterness and sadness. Hoping things get better for you.

[DiamondDoris]

OP - I read your post again, therapy might help, just to get things off your chest. I'm about to embark on it, can't wait for a good old rant and a few tears.

[GodKeepsGiving]

So very sorry this is happening for you - poor DS and rotten work situation. Nurture yourself so that you can push through and complete your master's - hopefully that will open more doors for you. Lots of good advice here that I can't really add too except to say be nice to yourself.

[springydaffs]

You sound depressed OP - re overwhelming anger and fear. Hardly surprising, with all you've had on your back. I expect the 'traumatic redundancy' will still be stuck in your heart/head somewhere - I really would suggest some therapy to lay it all out and express your feelings about it, get some good, solid, supportive feedback and support. With all that's been going on at home you probably haven't had a minute to really process it.

As for the job you're in, I agree with others that you could probably do with a less demanding job at the moment until things settle down with your son. However, I do appreciate that need to get 'lost' in a fulfilling job, one where you feel valued and that it is going somewhere. Are you still looking for jobs? You may dread the whole process of searching and applying for jobs though when you had 9 months of it.

I remember you posting before and, really, OP, you need to get your own space with a counsellor to really get this out in all its glory (iyswim!), every bit of it. You may come through this alone, using your wits, but it will probably take longer. I remember you saying that things were tense with your husband - more reason to speak at length to someone impartial if the pressure your family is under means you can't support one another.

I'm so sorry to hear your son is still suffering and hope he gets what he needs to heal.

big hug

[bubblesincoffee]

I agree that you sound depressed, and you are probebly much in need of some help to cope with what you have to go through.

Some form of therapy might help you. I have been referred through my GP for CBT (cognitive Behavioural Therapy) which is a form of councelling which, from the little I have discovered so far, helps you to think in a more positive way and can break cycles of negative thought patterns which can make things much worse.

I think you need to talk to your GP.

Also remember that this is just one phase of your life. It will not always be like this.

[LifeHope11]

Thank you so much for your messages. I have just reread them all and the mean a lot to me, there are many things I am expressing here which I do not feel free to address anywhere else. The responses and feedback from you help me view my situation dispassionately which is what I need to do. I think I am taking everything too much to heart and failing to distinguish critical problems from less serious issues.

Thanks so much for suggestions re bedsore solutions. I will definitely look into these. I am sure there is a lot more assistance we should be getting, I am afraid that I am underwhelmed by the aftercare available for DS. We had to push to get the community nurse to come every other day; otherwise all we have in terms of help is a hoist & sling which are useless as DS is in too much pain to be moved. We have always had to lift & carry DS ourselves so no change here anyway.

I am interested that I come across as depressed. I can follow up with my GP, I need a solution that works as I need to be emotionally very resilient due to life challenges and at the moment I do not feel as if I am. This response and feedback from you all makes me maybe that I am maybe not so outlandishly selfish for wanting some things for myself (eg career satisfaction, a 'good' life). I need help to feel 'normal'.

I have a lot of responsibilities, priorities and wishes. Of course my son is no 1 priority for me but how does that actually play itself out in life? I have to leave him every day as I have to work to earn money. So my work does benefit DS through boosting household income. Once I am at work, work priorities and interests take over. Also, I am strongly compelled to boost myself academically; I have achieved a professional qualification which was studied at Masters level so I am tantalisingly close to having a Masters degree, I just have to do the MA topup. Yet do do it means time & attention away from DS who is my first priority. Why has having a disabled DS made me more ambitious instead of less? Isn't it meant to be the other way round? Being older than everyone else in my chosen profession really resonated with me. I thought it was just me and felt a failure because I was older than people senior to me.... I realise it is not necessarily so. I am in my late 40s and fear I am 'past it', but whether I am or not makes no difference to what I have to try to do for myself & family.

[saintlyjimjams]

Have you had a carers assessment? SS have a duty to support parents of disabled children in accessing work and education (carer equal opportunities act 2004) you can request an assessment for yourself and they cannot refuse

[springydaffs]

You have a partner OP. It's not as if you're doing this on your own re you have a strong impulse to push forward with your career (re MA within reach) - I assume in order to pave the way in future for ds (as well as yourself). You sound as though you are feeling frsutrated and hemmed in - perhaps you are feeling guilty that your overriding impulse is to better yourself atthe moment re your career/academic achievement. Don't! Things with your husband are strained, he's got the main job as carer for your son while you work. Do your best with what you have - it's within reach, go for it.

[LifeHope11]

My DH works full time also, we are both juggling time off to care for DS. DH is supportive of my work & study plans. It is true that I am feeling hemmed in by circumstances but also by my own guilt. I have had a LOT of people advise me that I should give up these plans and devote myself only to DS care to the exclusion of all else; this touches a raw nerve with me. I may be wrong but I do feel the pressure of a kind of social expectation that the parents of disabled children should by necessity be self sacrificing.
Example: our local paper recently promoted a 'Carer of the Year' award with 3 nominees, the winner to be selected by readers; I voted for the nominee who had made a tremendous contribution to local disabled charities, benefiting hundreds of people. But the winner (ie the most admirable in the eyes of the public) was a lady who gave up her career to care for her sick child and Alzheimers sufferer MIL.
I am sure the winner was an admirable person but surely her choices are personal ones and should not be held up as an example for the rest of us? The cynic in me also thinks that if I sacrifice myself it lets certain others off the hook. I want to make life better but cannot rid myself of these feelings of guilt, fear, bitterness and low self esteem.

[PhilipJFry]

"I have had a LOT of people advise me that I should give up these plans and devote myself only to DS care to the exclusion of all else;"

These people are not the ones in your position and should mind their own damn business, or maybe focus a bit more on giving you support rather than suggesting what you should be doing with your life. Please don't let them fill your head with doubts and guilt over what you choose to do. They won't be the ones living your life now or ever, so it's easy for them to tell you to give it all up.

[springydaffs]

The mother never wins eh? she's (we are!) expected to be the martyr in any given situation re our children. Times that by n if you have a disabled child. Which is quite dull if you think about it.

I'm so sorry you are feeling so much guilt etc. Again, I would suggest a therapist to really bash this out with. If you are frightened the therapist may not hear where you're coming from, or may be judgemental and follow the party line (re you should be a martyr, how dare you pursue your career and development when you have a disabled child) then think again. Promise!

[Shebeen]

I agree with the other posters - you do seem depressed and I think you need to address that asap. If you lift the depression you will be able to look at thinks more clearly.

I think everyone questions whether or not they have achieved their potential. Because of the state of the economy, many people with very good qualifications are working at jobs they are overqualified to do-which is extremely frustrating. You need the job right now so just try and get through each day at work. Give yourself time to keep any eye on the job market and know your current job is not forever.

Most importantly, go to your GP or a counselor - depression makes everthing look dark. Best of luck