How do I help DS deal with my possible death, he's 3.9

[joycetheripper]

I've been sick for a loooooong time main problem being really very serious daily migraines.

I've had millions of other symptoms that have recently got worse like a thorn under my right eye and the right side of my face being numb and pins and needles in my arms etc but I'm knackered & dont really feel like listign it all out here.

anyway eventually after it all getting much worse I had an MRI & they found englarged blood vessels & indications of AVM or anuerysm on the right side of my head so I just had a 2nd contrast MRI on Thurs to get more information. I know if it is one of those things they can operate to remove them before they burst which will sort me out really but frankly I'm scared shitless, especially after today when we were all out and I have barely left my bed this last few days because I find it so hard to stay awake but I made the effort to go down the road to a pizza place and then on the walk home I passed out crossing the road, although it felt to me that I just fell asleep for a minute. DS was screaming and crying and relaly upset that I fell down.

DS and I are extremely close, he has got used to me spending a lot of time in bed but we are really physically affectionate and I am a major softening influence in his life. He really depends on me for so much love. Although I must admit I wish I were dead most of the time now, because of the pain I'm in, I am desperate to hang on and protect him.

Either way can you help me to help him deal with this, in case I die. I dont want to leave him without me covering him up somehow.

Hi joyce, how are you? Did you have fun shopping? Do you have a chair you could wheel around? When I was bad, dd loved pushing me about in my chair - she wasn't very good at it, but it made her feel so important.

I used to live in an area where they ran a system called Independent Living. SS assessed you and awarded you so many hours a week term time and so many hours holiday time. You got about £7 per hour, and you could spend it on employing someone/people to help you - any type of help from a cleaner to a personal-taker-to-the-loo. They don't run it where I am now, but it's worth finding out if you get it where you are.

Have you heard from your neurologist?

Have you applied for dla yet? Think of you worst possible day, and use that as the answer to every question.

I have this on my watch list; I'm afraid it had slipped out of sight on my threads I'm on so I lost it. I am thinking of you and your lovely family. {{{{{hug}}}}} (un-MN but hey).

I've found a link to the Independent Living Fund. I know you ought to qualify, but it probably depends on you getting DLA.

Here's the link anyway: ILF

If you've got a friendly CAB person or somesuch ask them to help.

It really is worth grabbing as much help as you can, really it is.

just seen this thread so sorry to hear your not well xxx

How are you Joyce?

Just read this thread and wanted to add my support. Hope this is a good week. Your son sounds a lovely boy and so sweet. Best wishes.

Hey Joyce just checking in to see how you were (tis jenduf moved onto another name)

Hope you're as well as can be expected - just wanted you to know people are still out here thinking about you

i am so sorry to hear this joycetheripper. . I amkeeping my fingers x that you will be ok. . . Big hugs and bug arms around you . . .

Hi everyone! Thank you all for your well wishes.

Jux, thank you for that link, that is really good. I'm really annoyed with myself because I havent re-applied for DLA yet. I got the form and felt sick at trying to fill it out all over again and just havent been able to face it, but actually I'm angry at myself for that because really that is doing myself an injustice. DH is still working from home to care for me and DS so this is just ridiculous. I think I've been burying my head in the sand a bit. All I've been thinking about is how I feel. I have been doing practical things, but they have been so carefully chosen. Like I'm trying to secure DS a reception place in a good school. Which I'm sure you can guess takes a lot of my energy when I'm feeling good. And other stuff but I think I've been purposefully avoiding DLA. This thread is giving me a kick up the backside though, I'm going to try to fill it in tomorrow, so thank you.

As for how I am, some new medicine is relieving my symptoms a bit but its very early days. I'm cautiously optimistic. We're going on an "i'm not dead" holiday in July where I will lay about doing nothing at all. I still have all the same symptoms and to the same extent but sometimes this new medicine is relieving them enough that I can almost have a normal day.

DS is doing really well

joycetheripper just found this thread... glad to hear your ds doing well. Hope things work out for you. one very unMN (((((HUG)))))

Hi joyce, I'm really sorry to read what a tough time you're having, hope the medication continues to help.

I would really strongly advise you not to fill the DLA form out yourself. I think you mentioned the CAB earlier in the thread? You are much more likely to get it approved if you get their help, they have advisers trained specifically in filling out those forms.

Oh Joyce, that's so good. I remember getting my new pills and when they started working it was wonderful - so nearly normal! Today, I have dug in my garden; a year ago I simply wouldn't have been able to. I do hope your new stuff keeps working and that there's a cumulative effect.

Do go for the DLA though.

I received some bumph from a charity called Balloons, which operates in my part of Devon. They counsel children and young people who are dealing with bereavement.

They enclosed 4 postcards which the child can hand out to people. They are entitled:
To my friend - what you can do
To my teacher - what you can do
To my parent or carer - what you can do
For me - what I can do

Each has a list of things like "understand that it is hard for me to feel motivated. I may have difficulty meeting deadlines". OK, you're looking at nursery places so the teacher one won't be so relevant, but I'll type it in anyway. Give me a little while as my hands are really aching and I can't type too fast atm.

(If you think they're a load of @$ just ignore; I looked at them and nearly cried - they were just what dd needed 6 months ago.)

There are little tick boxes beside each one, so the child can choose which ones are appropriate and hand it to the person. With dd, I think pretty well all of them applied.

Anyway, here goes - number one:

To my parent or carer ... what you can do

Talk to me honestly and explain about what has happened in a way I can understand. I may need more information and reassurance.

Talk to me about the funeral and how I can be included. It will help me to remember and say goodbye. Try to include me in decisions and give me choices.

Inform the school about my loss and find out who I can talk to in school if I need some help.

Notice if I am feeling lonely and find out about groups for children and young people coping with loss and change.

Remind me that I am not to blame and that it's not my fault although I may need to talk about this.

Help me keep memories alive by talking and remembering, especially on anniversaries. There will be things I need to remember and others that I will want to forget.

Let me keep something that belonged to

Give me a hug.

Help me to have fun and laugh sometimes. This does not mean I am 'over it', have 'forgotten' or 'couldn't care'.

Give me space but talk to me if you are worried if I am not eating properly or having sleep or other problems, so we an do something about it together.

Arrange for me/us to get extra help if I am feeling stuck and overwhelmed.

For me ... what I can do

Tell people what helps me feel better and keeps me feeling safe.

Ask for support and help whenever I need it.

Ask questions about what happened. I need the facts to help me understand and talking about it will help.

Share with others that at times I think I am to blame, even it if doesn't make sense.

Remind myself that, like the seasons, things will change.

Tell an adult if I feel helpless and hopeless about the future. They can talk to me about what might help.

Think about what 'I can do' and then 'just do it', rather than thinking 'if only ...'

Find different ways of expressing my feelings by exercising, writing, listening to or playing music, and carrying on with my interests.

Find out about groups for children or young people who are also coping with loss and change - and go along.

Remind myself I'm not going crazy. My sleeping, eating, thinking, remembering, concentration and motivation will be up and down.

Ask for whatever extra help I may need in school. Talk to my teachers about my hopes for the future.

Tell a trusted adult if anyone is giving me a hard time or hurting me. I will carry on telling adults until things change for the better.

Ask to be included in planning the funeral and in important decisions that are going to affect me.

Keep something that belonged to the person and start a memory box or book to help remember them.

Do something special on anniversaries that will help me remember and cope with what has happened.

Talk to the person that has died in my imagination. This may help me say things that I never got the chance to say. It may also help me feel still connected to them in some way as they were a part of my life.

Look after myself and allow time for sleeping, eating, resting, thinking and relaxing.

Laugh and have fun without feeling guilty or bad about it. This does not mean I am 'over it', have 'forgotten' or 'couldn't care'.

To my friend ... what you can do

Be yourself and be my friend; - even if you don't know what to do or say. Just knowing you are there helps.

Ask me how I am feeling - even though I may not always be able to tell you.

Talk to me about getting back into school. Meeting me somewhere each day might help.

Ask me if I want to talk about what has happened - and don't worry if I get upset, it helps knowing you care.

Give me a break if I am acting a bit strangely. I'm feeling very confused right now.

Sometimes I may feel lonely. If you phone, text or visit me I'll know you re thinking about me even though I may need time alone.

Carry on talking to me about what you are doing - even if I don't seem to be listening.

Give me a hug if you think I need one.

Listen to me if you can - it helps me to get stuff off my chest and makes me feel better.

Help me to have fun and laugh sometimes. This does not mean I am 'over it' or have forgotten my feelings for the person.

Try to understnad if I may not always feel like joining in just now - but please don't stop asking me.

Talk to me about getting help from an adult if you are really worried about me.

STand up for me if I'm having a hard time.

Ask me if there is anything you can do if you notice having a bad day.

Then there's a space to write your own if it's not covered in any of the above.

To my teacher ... what you can do

Understand that it is hard for me to feel motivated. I may have difficulty meeting deadlines.

Inform other teachers, especially supply teacher, about my loss although I may not wish to talk to them about it. Keep this on record.

Talk to me about what has happened. I may need more information, advice and education about loss.

Arrange for me to get extra help with my work so I don't get behind, especially before exams.

Realise that I have a lot on my plate. Try not to put the spotlight on me too much. I will participate when I can.

Help me to cope by treating me the same as everyone else.

Let me know about groups for children and young people who are also coping with loss and change.

Ask me how I am feeling. It may not be obvious.

Give me a note that allows me permission to leave class briefly, without having to explain myself if I feel overwhelmed.

Understand that I will not 'get over it' or be able to 'put it behind me' but with time I will learn to cope with all the changes.

Give me extra encouragement for all the things I am managing to do and keep me in mind.

Find a way of getting my attention back in class, without others noticing and making me embarrassed.

Wait until I am ready to talk.

Remember that I am still me, just feeling a bit lost at the moment. Please _

Help me find new dreams of the future and make plans.

Each card also has, at the top:

Someone close to me has died and many things have changed in my life. This may affects my feelings and behaviour. Here are some ideas that other young people have found helpful. I have ticked the ones I think will help me just now. So please .....

And at the bottom after all the suggestions:

Please understand that this is for now and my needs will change. Please check up on this as time moves on. Thanks for reading and trying these. They do help me although it may not always appear so.

Joyce, I really hope you don't need these for a very long time, if at all. I also hope that they help you plan a bit as per your OP so you can worry about it a bit less.

Thinking of you. xx

I've come across this thread and am in awe of you, op.
You are having to hold it together in so many ways most of us will never even have to come near.
Forgive me if I've missed something crucial, but I'm wondering why you haven't been operated on.
My MIL was rushed to surgery three Christmasses ago after her optician noticed a bulging behind her eye and recommended a scan.
She was blue-lighted to Frenchay in Bristol and was operated on straight away (not sure what the procedure is called but they inserted a wire through an artery which was then coiled, clearing the blockage).
I find it astonishing that these hcps are allowing a woman with a young child to suffer pain like this.
I'm sorry if this is out of order - ignore me if I've got the wrong picture (and there must be reasons why they're not operating), but it sounds as if you need someone to seriously fight your corner.

And please forgive me for calling you op, Joyce.

joyce - children cope..your ds will cope like he be is coping with you being ill.

You need to focus on you and getting better. There have been lots of positivise stories on here. Focus on the here and now - loving your ds and having lots of cuddles in bed AND making sure you get lots of rest.

Ah, just been going through the cards with dd and actually looked on the back. A couple of numbers for you:

020 7843 6309, [email protected], www.childhoodbereavementnetwork.org.uk

This is the childhood bereavement network.

There is also Seasons who are at:

0141 339 2366, [email protected]

Look Joyce, as always, I hope you won't need this.

I too am wondering a bit why the health services are doing so little for you.

Hope you've been having good days recently.

Hi Joyce, suddenly thought of you today, was just wondering how you're getting on?

Yes, same here, how are you Joyce? Am so hoping you've had surgery and have come out the other side of your nightmare safely.

Hi Joyce. Hope things are going much better for you. Do let us know from time to time how you are.