Living with Chronic disease & what to tell the kids

[LteMadrid]

I know there are many mothers out there facing the same as me so welcome your thoughts. (Apologies it might be long)

I have APS (sticky blood) and had TIAs a decade ago, I also have Lupus and Sjogrens Syndrome. Since having DS 1 almost 4 years ago I have been in a flare, with it getting worse since DS2 2 years ago, and this year being a real decline in my health.

I am holding on and still coping though I have had to go on immune suppressant meds, upped the steriods and have lung function issues now.

I always promised that my kids would not have to live my disease and my biggest fear is a full blown stroke. Recently I seem to have had a TIA or something that is now affecting my ability to recall words in English (I live in Spain and can still speak spanish as I learnt it after my initial TIAs). We are waiting for result from brain scan but it raises again the issue of what do I tell the kids and when about my diseases? I am starting also to get the classic problems of mobility problems starting as well which the kids will definately notice as I have to use a stick.

So how do I explain to them about not being able to talk sometimes? How do any of us cope with the idea that something like a stroke could hit and all chance of communicating could be gone? (It's always my language centre affected.)

Bumping for you!

Your children are very little so very simple matter of fact explanations, combined with small childrens natural acceptance should be all thats needed. For instance mummies legs are poorly ( not working well/ cannot walk far) today.

Sending empathy! I have similar health issues and cannot access words always - especially recently (O2 dependent for a while). ( I cannot spell anymore either!) Its funny I used to loose speech when I had migraine as a youngster so I must have a similar weakness!
My son was very late talking due to autism and learning disability so we do use a few signs which are helpful when I cannot get urgent words (like stop, wait, gently,!)once again. I use the wrong words too - which confuses and occasionally amuses ds!

We have a life story book for ds - with photos and little stories. Perhaps something similar would be nice for your children too.

Lots of empathy for you - and hoping the meds can get on top of this flare.

It's not the same, but a lot of your post rang true to me. I have an auto-immune disease triggered by pregnancy with DS (now 3) - Ankylosing Spondylitis. I too have been in a flare since the pregnancy (and am now pregnant again).

The view I have taken is that DS knows no different. I am adamant that his childhood will be affected as little as possible - and as such we normally have an au pair helping with all the jobs around the house and there if I need a break. This is NORMAL for DS - he knows no different. He also knows that Mummy can't lift him, or sit on the floor - he learnt very young to climb to my level. It's tough, I won't lie, but I just have to keep reassuring myself that he is a happy little boy and we are doing the best we can by him. When I am particularly bad, on crutches, or bed ridden, then obviously that poses additional problems, but again that's why we have the AP so his life is stable without changes in carers. We don't make a big thing of it but he often will come to the hospital with me, and so see me being examined and the doctors talking to me. He knows very simply that 'sometimes mummy hurts', but again it's no big thing.

I actually think it is harder from the adult perspective from the child. Really when they are so young they don't know any different, and are surprisingly ok at taking a new development on board. I know I've spent many an hour fretting over how DS will cope with the latest challenge, only to find my fears were unfounded.

It is hard though, so you have my every sympathy.

Thank you both for that.

I also decided during pregnancy with DS1 that since this was my life and my kids wouldnt know any different so this is 'normal' for them. So yes, they know all the hospitals, all the nurses and drs and think nothing of it and have no fear of any of it. Unfortunately we can't afford any help and I have so far managed to do all the care and cleaning etc so my kids aren't used to understanding that I have limits to my capacities. I have always had to limit how much I hold, lift, carry them etc but again, it's been since birth so they are used to our version of care.

magso - please can you tell me a bit more about the life story book? One of the thing with losing my ability to communicate is I worry that I'll lose the ability to pass on information, stories, knowledge - is that the purpose of the book? (And thank you for bumping)

Weegle - you are so right that the issue is ours and not theirs. I think the hardest bit to deal with at the moment is the concept of not being able to talk to them.

Again thank you for letting me know I am not alone in feeling like this. Can I just ask you both how your DH/DP deal with it all/

Hi LteMadrid - you are right it is to pass on information, stories and record memories. Ds life story book was started for other reasons (he is adopted) and we have added to it. Recent illness has highlighted its importance for us! I worry my memory is dodgy and have started writing little things in it - so the memories are there even if my memory or body fall short in the future!
We just call it Ds story book.
Just thought a similar idea might work for you too.

I think the book is a brilliant idea. I sort of do something similar, but not from quite the same angle. I think I may 'adjust' it as I'm very aware the person my DS will know as his mother at 20 will be very different from who I am now, and to be fair, who I was before the disease.

DH is fantastic. Of course it's been bloody hard at times - and until we sorted out the AP (which I pay for out of DLA -but wondering if you're not in the UK?) it was even harder on him as he was often called home from work as despite every effort on my part I couldn't cope. You can be disabled, you can have a disabled child, but it seems nearly impossible to access any support as a disabled parent - particularly if you still want to be the primary carer. Anyway, apart from the difficulties we both had coming to terms with the diagnosis (and prognosis) which was hard but we did it together, he's been nothing short of amazing. I am truly grateful because our lives have changed immeasurably. And it's not unusual for us to have weeks on end of being so fatigued I can barely do anything. He's an incredibly patient man. He gets frustrated - but that's at the situation and not me, it would be odd if he didn't. But we have mostly adapted and try to make our lives as near normal as we can - for our son's benefit, but also our own. Fortunately his work are very understanding (he's been there over 15 years), and so he often accompanies me to the hospital, so he's been involved the whole way. Actually writing this has been good for me because you say "in sickness and in health" so glibly at your wedding, but by heck, he's definitely kept to those vows

Again thank you both - shall get my act together and start the book. Tbh had it in mind at various points to put together a memory box (not sure can trust myself to always remember to write things down!) and now shall make more effort.

Weegle - I do get Incapacity Benefit from the UK but dont qualify for any other benefits living outside UK (which is quite reasonable). Of course the exchange rate has not just hit the pensioners here but people like ourselves. The real difference in our household is I was diagnosed a long time before I met my DH, had had my TIAs and serious issues and adapted to life with the diseases. So he's walked in to me coping and dealing with whatever life throws at us. He's great on some stuff, like cooking every single night knowing that by the end of the day am definately too knackered, running scared on others (like not asking me about the urgent brain scan I just had) and never goes to the appointments with me but then again am pretty well in 'maintenance'. I also am holding out for the day we have a serious emergency, though being in Spain there is no issue as family always comes first.

Thank you both once again. It makes such a difference having others to tell me their coping strategies or ideas.

I am sorry this has been a difficult year for you and hope that medication can calm things down for you and get things under control. I have heard good things about the spanish health system.

It can be a bit lonely sometimes! Dh does not come to appointments either. I am not sure why not -I do not think it occurs to him I would quite like his support sometimes. I just take notes because I forget otherwise! My main fear is for our son - if I get sick whilst dh is away - and for the future as our son has sn.

Hi magso

Am very lucky to be living in Madrid I think as my specialist is up to date with all the latest research from UK and US but we have far shorter waiting lists. Also, she personally is wonderful so whilst I have appointments every 2-4 mths if I am having a really bad time I can go visit her in her lunch hour and she'll do instant consultation - no way would get that in the UK these days (did actually have it 10 years ago there).

My specialists laugh when I go in with my list of things to ask and then write down their answers but equally they like it as sometimes they just take the list and lump the answers together in a more manageable way to make sense of what is going on.

I'm with you that my greatest fear is a stroke when in charge of the boys and DH away but do have emergency back up of friends in similar position.

When I get to the UK end of this week am going to look for a book we can use to make a story for each DS as figure by giving each one something slightly different it makes them unique to me.

Been reading with interest.

Weegle - I am a single parent who has pretty bad Spondylitis. Waiting to get funding for a biologic.

Hi LteMadrid
My DH had a stroke when I was 20 weeks pg with our first child, who is now 20 months and a jolly happy toddler. DH lost all his speech and the movement down his RH side. We have not yet got to the stage of explaining to him in any terms what happened, but DH gradually getting speech back but no movement in right arm. Can walk with a stick but no feeling in the right side at all. DS looks at DH quite curiously when he walks, and obviously realises he is different. He says 'daddy's stick'. As others have posted, children have an amazing capacity for acceptance and if you explain it in simple terms then they will go on accepting it and growing up with it. when we visit friends with older kids they are all amazing with DH and bring him his stick, pay him lots of attention and show absolutely no sign that they are afraid, just curious. Just another thought if a book feels like too much, you could get an empty jar and one of those blocks of paper notes and each time you have a memory or think of something you want them to remember or know just jot it down, fold it up and put it in the jar. Might be easier to keep to hand. that is what I keep meaning to do but not getting around to it. Regarding your speech do you mean that you will gradually lose it? Or are just afraid that this will happen? Will you get any speech therapy? All I can tell you from the other side - stroke recovery - is that the brain has an amazing capacity to relearn things and the amount of speech that has come back to my DH is amazing. Far from perfect but he is able to get his point across. Don't know if any of that helps!

Hi bondgirl77

Thank you for that. Fortunately my kids also growing up surrounded with all that goes with my illnesses and the non-stop medical appointments. My sudden concern was some TIAs took away some of my language capacity and it reminded me that my state is considered 'fragile'. Other than the obvious of 'death' the big risk to me is a stroke and since it's always my language centre affected by any TIAs we presume it would be that most affected. So brought on my sudden need to communicate to my kids but realise they probably arent ready for a life time of communication in one sitting!

My Mum is getting some special small boxes for each of the boys and we are starting to sort out some photos and memory stuff to put in them as I figure nothing to lose by being organised now. I have a note book with me always (memory somewhat dodgy as well) so shall also start writing down memories when think of them. All such great ideas, so wish there were enough hours in the day...

So glad your DH is recovering his speech etc. I presume if I had a full on stroke here they would indeed do therapy with me, infact though I am luckier as my Spanish language is stored in a different area so if I think about it I can still talk to the kids as they are bi-lingual, just not the same in my more limited Spanish. What I have done in the past is spent hours doing crosswords to help my brain reform the words and this time round I just talk non-stop at the moment to keep the brain going and going and sure enough the language is returning (and everyone is going mad!).

As for my mobility am hoping if it's back to wheelchairs the kids will just see it as fun to push Mum around....

Good luck with DH's recovery. I know that by knowing how high a risk I have I am infact very lucky.

Hi LteMadrid,

Have you seen butyoudontlooksick.com

It was started by woman with Lupus who wrote a 'spoon theory'. Best explanation I've seen about chronic conditions to those who don't have them. Could be helpful to explain to DCs as there is visual aid.

Hi Rosietoes

Thanks for the suggestion - have been a member since it started. Hadnt thought of using it with the boys though. Shall definately investigate which elements would work with a 4 yo.

I have a chronic condition and DD has always been told "mummy doesn't feel well today" or "mummy can't do X today" and similar.

I used to tie myself in knots about it and get terrible guilt that my condition would blight her childhood but my HV (one of the few sinsible ones judging from some of the posts you read on MN!) said "she will never know you any other way, to her you are her mother and that is how you are". She told me love and the child feeling loved was more important than me running up a hill with her (something I could not possibly do).

DD is 5 now and points out the disabled bays in car parks to us as she knows we look for them and often asks "mummy, have you got your stick?" and accepts I visit the doctor a lot.

I think the thing is to be frank but not scare them or cause anxiety. We just do it as a statement of fact in the present tense.

Children do accept their life as "normal" and will accept things if told in terms they can understand.

Hi Miggsie

That makes sense to me. Kids definately just know the life we are giving them and I have always said the most important is the love I can give them, not the physical games etc. Certainly they dont think it's odd that every 2 weeks we're at one dr or another.

My issue remains though that if my ability to talk goes almost completely then with it goes the one thing my kids do know I can do. I dont like the idea of going back to sticks/crutches but that's more due to my own issues. I will just explain to them my legs dont work so well these days. Certainly MIL is banned from discussing anything near them as she loves to scare them over everything (eg play with that elastic band and your fingers will fall off!) so she's be likely to say something wonderful like 'if mummy dies...'!

Thank you everyone. Guess my biggest issue is me and having to deal with more and more decline in health. Good to know you are all here for those iffy days.

sorry to ressurrect this thread.

LteMadrid......i have just been diagnosed with sjogrens disease and i have alot of eye problems. Can you tell me how you dealt with yours.

TIA