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.

If you haven't read No Matter What before I'd suggest not getting it right at this moment in time. It takes a whole lot of strength and will power to get through that book when it's your health on the line. but it is a good book.

Hope consultant was able to be reassuring

Hi,I had a simolar experience last year.After an operation on my ear,they found irregularites with the blood vessels around my carotid artery and thought that this maybe an AVM.As you can imagine I was devestated and spent weeks googling this (never do this),after further investigations,it was discovered that I did not have an AVM but did infact have an aneurysm.I had no symptoms of this at all.I had a stent put in in november and will probably have to have life long follow up.
I struggle with this on a daily basis,I have two Ds and I will not leave them.I feel angry,upset and guilty that I have put them in a situation where I could leave them.I manage to keep on top of my anxieties most of the times but there are times where it is very overwhelming.
Probably in hindsight I did not handle telling the boys as I could not deal with the pain I was causing them.But then again,although I had no control over the situation (and thats one of the things I still struggle with),I did not tell them as that would make it more real.
I'm sorry I am rambling,I don't have anybody I can talk to about it as I don't want to upset anyone,but I wanted you to know that I know what you are going through and it will get easier.These things are very teatable these days.

Gosh, puts our whinges and whines into perspective.

Nothing to add, just sending you the bestest and strongest wishes Joyce. x

Joycetheripper, are you a namechanger? I think I know who you are.

Really and honestly? You do not need to prepare your DS for your death yet. I used to work in the Wessex Neurological Centre, in the theatre team. The numbers of people we would treat for the conditions you describe, either by traditional "clipping" or (much faster, safer & less major intervention) "coiling" each week was significant. Some of them were patients whose first knowledge of their condition was a result of a sudden bleed in the brain. Occasionally it was as a result of symptoms which were followed up and found on scan, so the treatment was pre-emptive.

I think what your DS needs, more than anything, is your stability. So, don't fret about preparing him. Take each day at a time. Talk to the consultant, and see what he/she says.

These conditions really are treatable by an expert team of skilled interventionists, who dedicate their careers to preventing the devastating scenario you are considering.

In our centre we would do lots and lots of angiograms (contrast dye injected into the vessels to give detailed anatomical pictures) each day. Then we would tend to to between 1-4 'coilings' per week, also (they take between 2-6 hours, using a general anaesthetic).

hi lou, yes I am a namechanger, though I havent posted for months and months. I weaned myself off of MN partly because I was getting so sick I didnt have time for it!

I saw the consultant today, he still hasnt got the results of the contrast mri so we really arent any further ahead than we were. Although I am really sick again after walking DS down the high st to the castle. I had to leave him there with DH and take a taxi back b/c i was going in & out of being awake and my pain has been awful since.

I've been considering doing a really controlled form of suicide if there would be no solution for me because I'm in such agony, this is no way to live for any of us. My life just feels so twisted, everything is wrong now. I dont want to say too much and say who I am in RL but its really painful, the gulf that gets wider every day. But I dont want to leave DS obviously, that is something I've been fighting for a long time b/c I've been unwell for a long time. But yesterday when he was screamign when I passed out in the road I felt like actually I'm ruining things for him now, being like this.

Still I think he would be worse off withotu me so my alternative is to not kill myself but resign myself to givign up trying to live normal life. Take him to school in a taxi instead of walking him there and forget wakling down the whole high street etc, at least for the foreseeable future. Just give in to it. I cant go 2 hours out of bed without falling asleep in my chair so I just wont try to. Maybe me fighting it so hard is making it worse for him.

I'm trying to find a cleaner who can come in to the house several times a week for a few hours to help out because that is one thing I cant do withotu falling over, I fell over 3 times last week and hit my head. I applied for DLA and my old wanker GP said I didnt need it but my nuerologist said I did. Anyway I didnt get it, but now I have a new GP so I'm going to reapply. I've got a lot worse they cant possibly deny me this time.

Sorry to hear this. I know the feeling, I am living and dealing with life limiting cancer. Winston's wish are fab, we also have contact with a local support charity who help with things for the kids. I have written letters for all the dc's and enclosed them in birthday cards and Christmas cards for every year until they are 21, these letters detail what I hope for them in the future and re-inforce how much I love them.

LeonieDelt that is very, very sweet of you, but I'm in Colchester, so a bit of a trek

I wish I had some more pain free time when i wasnt overcome with exhaustion to think things through and plan. Its really hard to do budgets and stuff and detailed thinking. My head is very cloudy.

not much to add except that I have a friend who had surgery on an aneurysm 6 years ago and is perfectly fine now x

Joyce sorry to hear your story, it sounds crap. I haven't been thorugh anything similar but you explain so clearly. If you are cloudy then could you have DH help with the budgets, getting someone to clean, etc. Does he have any extra time to clean up? Does he work?

Joyce, it's ok, you don't need to say your RL name - I remember it from last time we 'spoke'. How is your DS these days?

Gosh, I hope I am wrong, but I have a feeling I "know" you from an earlier incarnation on MN. Whether I do or don't, have some {{{{hugs}}}} and hang on in there for your little boys' sake. You sound a lovely lovely mother. Sorry I have nothing useful to add.

Oh boy's obviously.

I'm not really nice to talk to at the moment, I'm sorry. Thanks for being here for me though. Today's been really bad with my pain, its been pretty much intolerable so I took some pain killers which I'm not supposed to do as it can cause rebound pain but for fucks sake no one else has to live like this. I just wanted to die. Now I am still in pain but its managably distant.

If I'm not going to die from whatever the mri shows then I have to either kill myself or reshape my life in such a way that it fits within my house and loads of paid help or something because I just cant go on anymore. I did call DLA today they're sending the form out. I just wait for DS to go to sleep so I can take my sleeping pills after tucking him in and be asleep. The pain is just horrendous. My arms and the right side of my face are numb and I've fallen over twice today. During his nap I couldnt sleep because I've been told not to take pain killers and it was like there was a spike under my eyelid and I just feel like I'm livign in hell, I cant believe how long its been.

DS is alright thank you Lou. He is the same as always, very very high maintenance, full on, full of energy and emotion and imagination. Too much energy for me! He is so manic, never stops moving or talking and he's big and strong.

Actually I made accidentally funny joke the other day because i love orchids and I said I felt like an orchid who spawned an oak tree, because I'm so stupidly delicate and DS is so hearty. And DH said "well what does that make me?" and my head was all in a muddle and I was trying to think, well what makes both things thrive? So I said "well I guess you're the fertilizer" so he said "Ah so I'm the horse shit!" and we were laughing, it was very funny.

Try not to worry until you get MRI results back, I guess it helps you to plan for all the different outcomes.
Winstons wish are good should you need them, they have lots of books which were helpful when my husband was dying/ died.
I didn't think my3 kids would cope with their dads death they struggle with everyday stuff due to their autism but......... They coped and so did I. It's been almost two years now.
I hope your results are better than you fear.

I dont really have anything to add, I just wanted to post so this stays on my "threads I'm on" becauseI dont use MN much and I'd like to pop back for this thread, especially when I get the mri results.

I managed to go out for a while todya with the family but got realy unwell afterwards but didnt fall over just very very wobbly and needed a lot of support. I've got lorazapam now to help me cope with the pain too. Hope you're all well and enjoying the lovely weekend weather!

Joyce, the best advice I can give you is to talk to your DH. Tell him what you want for your DS. Tell him how you want DS brought up, the decisions you'd make, the way you'd handle it. Like OnlyJoking, I lost my DH less than two years ago. We cope and the DSs are amazingly resilient but I really wish we'd has some conversations about what my DH would have wanted for the boys. I do what I think is right but sometimes I really wish I had his opinion and his perspective. Talk to your DH and enable him to help your DS should the worst come to the worst.

I hope your results are good and that you won't need to come back to this thread.

Thanks MummyDoIt. I'm sorry for your loss too.

I have to call later today to see if they have the results. I've had an okayish couple of days where I've been able to do a little bit before the haze sets in, partly because now I have lorazepam to help me through it.

joyce I am in Colchester this week, is there anything I can do? I could clean for you or something..?

Joyce I have no words of wisdom just wanted you to know that there are people out here thinking off you, wishing you well and admiring your strength - your love for your DS shines through your posts in spite of the pain that you are in.

Bessie That is so kind of you. Thank you so much. I have hired a cleaner who starts tomorrow and will be coming twice a week but I am really touched you have offered. I'm always up for a cuppa but no need to clean thanks.

jenduff thanks. He is a bit grown up before his time. the other day I had to take some pills while we were out and he asked if I was ok and I said yes i'm fine, dont worry. And he said "but I do worry about you" and I felt so bad but touched, he's got an old head on him and sometimes I think its too much for him. I like to let him be 3! He is keen to remind me almost 4 though.

Hi Joyce. I should have joined this thread earlier, I know, but even know, my heart just goes out to you. I'm possibly/maybe/probably in a similar position to you. I'm glad you've been in touch with Winston's Wish as I've found them brilliant. Other than that, I think that all we can do is to concentrate on living and loving to the full, giving every ounce of energy we have to our DCs and taking lots of photos. It's a lonely place to be. But please, keep posting and updating us on how you are...