I want a better life now starting here...but feel guilty! Help!!

[LifeHope11]

I have posted before but just to summarise my circs: I have a severely disabled DS who has had recent major surgery, my DH is under stress because his DM suffers from dementia, & I do tend to get the brunt of it when it all becomes too much for him. She is abroad now but will be coming back later in the year & he is organising a care home for her. I think DH may have depression too....he is grieving as he is effectively losing his DM.

I suffer from epilepsy which is under control at present....also have had depression which has responded to medication. So I have had a hard time (was also made redundant recently) was very very near the brink but have come back from it.

I have been seriously disliking my job but have found another one, due to start in a few weeks. Just a couple of weeks left in my current one but this seems like an eternity, it is so seriously stressful, I see no end in sight.

I have got seriously overweight in the past years (maybe linked to the stress), am trying to get that under control so have made some initial progress.

Why am I feeling so guilty now that things are getting better (or at least less hard) for me? Because they are not so good yet for those close to me. I am trying to get my life back and, it may be presumptuous of me, but I would like to be happy.

But I feel guilty because the things I want to do don't fit in with what everyone wants. For example, because I am starting new job shortly I won't get days off during the school holiday so DH will have to organise it or we will have to arrange respite. I am so selfish I didn't think of that; all I knew was that I had to change jobs asap.

I just feel guilty for having any kind of a good time, or even possessing something, that someone close to me can't have. For example, I feel guilty about going running to get fit when my DS can't even stand let alone run.

Is it rational for me to feel this way? Is there something I should be doing differently? Please give your honest views....sorry for the long post.

You sound lovely- and well done for getting the new job.
It sounds like things have been very tough for you over the past few years and because this is what you have got used to, you kind of 'look for the tough' even when it might not be there anymore.
Re. The feeling guilty, I think many people do. Would it help looking at the long term? So its not being selfish by going for a run, but actually its being selfless because in the long term it's important to look after yourself too.

Hi Life

I understand where you are and have been there, I had a Daughter with complex needs and a terminal illness, after she passed, I felt terrible guilt about enjoying anything even a small laugh at a funny episode of something on the telly, it was like I too had to suffer because she did.

We effectively become martyrs because we want to take away their pain, but we cant, so we put our needs last and suffer through that instead.

What you are doing in looking after yourself is giving your child a more stable and healthy mum who will be best placed to cope with his needs, this is not something to be ashamed of and should be encouraged, a healthy body will help the state of your mind and bring down the stress levels, if you are ill your decision making will suffer and so will everyone else.

I appreciate you husband has arrangments to make for his mum, but eventually she will be cared for by others, but your son must be cared for by you, dont let your feeling of guilt shame you in to not looking after yourself, its really important that you do, martyrs dont live very long for a reason, healthy well adjusted ones live longer and their families thrive under their care.

good luck

Thanks so much Alurkatsoftplay and Guiltypleasures for your messages, they are appreciated very much. You are right that I need to take care of myself in order to take better care of loved ones....I am looking for permission to discard the guilt, or for somebody to lift it from my shoulders, it doesn't work that way.

Guiltypleasures - thank you for sharing your story and I am so sorry for the loss of your DD. I do identify with the feeling of guilt for taking pleasure in small things.

I do also want to show my DS that life is full of good things, fun & pleasure, so have to lead by example I suppose!

Have you ever flown? I have, but it's been a while so my recollection may be a little out of date. But this is what I remember.

When you go on board an aircraft, they give a safety talk at the beginning of a flight about what to do in emergencies. If for some reason the air becomes unbreathable, oxygen masks drop down from above so that you have something to breathe. Passengers are told to put their own mask on first before helping the people next to them put on theirs, even if the people next to them are children/loved ones. There's a good reason for this, you can't help someone else to breathe unless you are already breathing.

You have pulled on your oxygen mask.
That was the right thing to do.

Not only do you deserve a life as much as your family, you also can't help them if you don't make sure you are well first.

So that's the story for the bit about changing your job. Now, the feeling guilty about things getting better in your life whilst those around you are still suffering.. there's a quote for that - it seems to either be attributed to Nelson Mandela or to Marianne Williamson but I think he quoted her. Its a bit religious, and I'm not but I think the message is important anyway:

"Our deepest fear is not that we are inadequate; our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We were born to make manifest the glory of God that is within is. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same . As we are liberated from our own fear, our presence automatically liberates others."

You being happy, fullfilled and fitter won't diminish the lives around you, you will make their lives brighter and bolder for it. Maybe your son cannot run, but you sitting on the sofa when you could be running won't change that. But you can show him that life is good and set him the example that he can make the most of what he has.

I know how guilty you feel. My DH and I both suffer from depression, and when I start to feel a bit better, I feel sad that he doesn't. But his life is improved by my being happier, I'm better able to help him and perhaps fingers crossed even inspire him to believe that things can get better, it would be daft for us both to be miserable just to keep each other company.

HTH :)

"Why am I feeling so guilty"

Learned behaviour. 'Girls' are not only sugar & spice and all things nice but many tell us that we're meant to be caring, selfless, loyal, deferential, obedient and rather in the back seat than the driving seat of our own lives. You'll have learned this behaviour from your mother in the first instance, other female role models in your life, friends and society in a wider sense. It's healthy to give yourself #1 priority because if you don't look out for yourself, no-one else will. Doesn't mean you are selfish or uncaring. Life will still go on for the others in your family and they will adapt around you. Good luck

Im delighted that at least something is going well for you. Quite frankly, you wouldnt cope if it weren't.

I think you should print out Spiritedwolf's brilliant post and read it over and over again.

Thank you Spiritedwolf for your terrific post! That has helped a lot....it is true that I need to help myself so I can help others. Just basic stuff really, I have to lift/move DS a lot to dress him, bath him etc, and it is not easy, I have permanent backache. Being fitter means this should be easier.

And it is true that there is nothing gained through false modesty. I think I am happy to let other people 'shine'; eg, nothing gives me more pleasure than to see DH take care of himself, go to the gym etc and have time out, though it means I have to look after DS while he is away...because I am a partner and co-parent, and I want DH's happiness too. So I am not as selfish as all that.

Yes Cogito, it is also true that I was brought up to be unselfish, self sacrificing etc and the stereotypical version of a 'good woman' that my generation were prone to being taught. The difficulty now is in when I feel resentment and I don't know if I am being unreasonable to feel this way. I want there to be rules as to what is reasonable and what is selfish behaviour but nothing is clear cut, the one shades into the other imperceptibly.

For example: DH says that MIL is unable to travel alone so he will have to travel over (12 hour flight approx) to collect her & bring her home. I feel furiously resentful about this, should I? We have not had a holiday as a family for years - more due to lack of time than of money (though this trip will seriously affect our leisure budget). We have to holiday separately to cover DS care, very few people are able to babysit him. I am worried about DH health as well, he has potentially serious underlying health problems.

What to do? I don't see a way out of this. Should I just swallow my resentment and accept that MIL needs this level of care? I always feel a little panicky about looking after DS alone (not DS himself of course, just the practicalities of looking after him without help for any lenght of time), no family/friends available to help unfortunately.

Hi again

if you are in the uk ( I am assuming you are) would you be willing to look in to
dc going in to a hospice for some respite, he would get one on one care plus socialise with other kids who are there for the same reason. Hospices arent just for the terminally ill, childrens ones especiall cater for just this sort of thing.

Also if you are lifting him yourself, have you got all the equipment in situ you are entitled too? You seem to be doing an awful lot on your own, but not mentioned any social care, agencies or respite for you and your family?

Just to add, my cousin is an advocate for parents of seriously ill/disabled children, she was on the news being interviewed about all the changes in government funding etc lately. I know her severely disabled daughter goes to a norfolk hospice for a week at a time for her own holiday and care, her mum is then able to take her son abroad for a week if she wishes.

Hallo Guilty, thanks for your posts. Yes I am in the UK....we do get respite from time to time for our DS but I will look into the suitability of a hospice for him.

We don't have a social worker assigned at the moment (as previous one left) should get one shortly. We do get some help but the difficulty is that DS though severely disabled can do some things for himself which means we encourage him to move around as possible, if he were totally helpless we would have lifts/hoists etc. Just everyday things like dressing him are difficult, it is amazing how hard it is to pull a pair of trousers onto a less than cooperative, 11 year old DC who can't stand up!

DH is having to sort out MIL affairs as he is only family member in the UK, it is all very daunting & there is a lot of sorting out involved! The legal/financial implications of putting her in a care home are worrying. I am also very concerned about DH emotional health & well being during all this, I know it is taking its toll.

I am actually more worried about this situation than DS's at the moment (and DS was very ill/nearly died earlier this year), I can't help feeling angry about that and thinking it is a CRAZY situation. I wonder how we are going to resolve it, and am also bitterly resentful of the fact that so much of resolving it seems to be down to DH.