Anyone caring for a partner with a chronic illness plus young kids?

[sandramaryb]

Are there any other MN members who are caring for their partner with young kids too? Feel a bit isolated and resentful with it all. Anyone else like me out there?

Rubyroo

Would go along with Tribpot, especially re carers, though never joined myself! just moaned to a few people and felt sorry for myself. Had great difficulty when H first ill admitting to anybody that I couldnt cope and everything wasnt just MARVELLOUS, but actully was a bit tricky at times. In fact, I can be a bit like that now, then feel like a martyr when nobody offers any help.

Have learnt one thing - the fear of the future was far greater than the reality.

hello all have not been on for a while as my gorgeous little one has been almost constantly feeding for the first two months! he is nearly nine weeks now and is almost 15lb!

rubyroo - so sorry to hear about the diagnosis; life adapts and things will calm down a bit; i was in tears so much of the time when DH got diagnosed but it's easier now (emotionally). I now realise that a diagnosis is often like a bereavement because you have suddenly lost that perfect family life that you were expecting - there is grieving to go through - in addition to the practical adjustments.

verso - it's spooky reading your thread as we are so similar! I also do most of the DIY in this house. our 2nd child is now here and I am totally sleep deprived but doing ok. it is manageable with two but definitely get all the help you can to keep you sane. no matter how poorly DH is feeling he can often keep an eye on the baby if I lie them next to each other. is your OH getting DLA? we use some of ours to pay for the ironing to be done - and for ready meals on nights when i don't have the time nor energy to cook

hope the work thing ends up ok - my DH is also having problems - they are trying to say he's not medically fit to do his job and get him posted into a different one

Hi there, moominsmummy! >waves< How spooky indeed. Yes, DH gets DLA - he uses half of it for his Motability car and the rest for day-to-day expenses. It does mean we can afford a cleaner once a week, which has been a sanity saver, definitely. I totally know what you mean about the sense of bereavement - but it's difficult to recognise it at the time. You have pinpointed it exactly.

So how do you manage with two? I had another wobble today about it (I'm part way through the 2nd trimester but am still fatigued and got a bit weepy and emotional earlier about how we are going to cope!) Any other tips?

verso - just to let you know that I managed to get the sure start maternity grant of £500. we got it cos we get the disability element of working tax credits (although it's reduced to zero due to income).. wasn't sure if we would get it but filled in the forms and heard today that we are getting it! woo hoo! perhaps you could use it to pay for additional help around the home?

My goodness, I am so glad to have found this bit of Mumsnet! Hope you don't mind me joining you.

My DH had is disabled following a massive stroke in June last year at age 38. I was 20 weeks pg the day of his stroke and life has changed beyond recognition for us. He has no use of his right arm (and was right-handed), and had no speech or movement in his RH side following the stroke. He manages to walk moving his leg from the hip and is very very slowly learning to talk again. He also has post-stroke epilepsy.

Our DS is now 9 months old and I totally relate to all your comments about feeling like a single mum! I've gone back to work 4 days a week which I find a break actually! I really love being there, it feels like my only 'me' time. My DH at first took no real interest in our DS, but now he has got a bit more interactive absolutely adores him and I feel bad that I can't give him more time to hold him. Also feel torn between all the things I'd love to help DH with, like speech exercises and taking him out places, and needing to devote lots of time to DS.

Also, I find it so difficult when DS is ill, it is SO tiring and I feel my DH is not much support when I am worrying about it.

Anyhow, bit long, sorry - hope you all have a good weekend!

bondgirl77 thank you for your post. I am feeling very sorry for myself today, have horrible cold/cough and feel crap.

My dh is disabled following a m/cycle accident 15 years ago, and I really struggle to get the balance right between feeling sorry for him and trying to do all I can to care for him (inevitably at the detriment of my own health/welfare) and feeling sorry for myself sometimes that I have ended up in this role of 'carer' (I was only 23 at the time am 38 now and feel that it has taken over my life, for obvious reasons). Most of the time I consider it my privlidge to care for him but sometimes i feel very resentful, and today was one of those days. It's very hard to have feelings like that and yet not be able to express them.

Dh's pain levels are very affected by weather and coz we're having a crap summer he has been really bad. Today he was in a foul mood when he woke up (not uncommon coz his pain killers wear off when he's asleep) had a bath and then went back to bed. I had had a bad night myself and felt crap too, and underneath the smiles, helping dh with bath and breakfast, and the singing Bob the Builder and playing with my beautiful ds I was boiling with anger and resentment that never not even when i was pg, is my health more important than his. I never get to just give up on the day and go back to bed til I feel better. It's nice to have somewhere to be able to admit feeling like that; but your post also brought home to me how much worse things could be, and how much harder some people have it. I can really relate to the single parent thing, and being torn between caring for dh and caring for ds. It's hard isn't it? Anyway, will go get ds up now with suitable smile on my face, having been able to offload all of this.

Hi bondgirl - must be very hard for you if you have to assist your DH with even cuddling your DS - as if parenthood wasn't enough of a guilt trip anyway - you must feel really torn alot of the time.

hairybikerm - totally relate to the "his health is more important than yours" thing. I have learnt that sometimes I have to not mollycoddle DH and tell him that I am feeling fed up, that I appreciate he feels crap/tired/depressed/whatever but so do I and I still manage to get the washing/cooking/finances etc done. I have found that by letting DH sit and feel sorry for himself and do nothing is not very helpful for either of us. I carry on with life even when poorly so have told him that he needs to make an effort occasionally too - there is always something he can do - even if it's just thinking tasks like planning the week's menu or thinking up ideas for kids birthdays.

by the way I would recommend a fab book called "the selfish pigs guide to caring" - I found it really useful

wish we could all meet up with each other for big supportive group hug!!

any updates from anyone? how's the pg going verso?when are you due? Mummydoit - how is your DH doing?

Hi all, just wanted to join in. DH has (probably) got fibromyalgia, plus sleep apnoea plus diabetes (no dx on that yet) plus hypogonadism plus something about raised iron levels whose name I've forgotten (no point given no-one gives a toss about it anyway).

He uses a wheelchair outside the house, and cares for ds (3) part-time. That's about it, really. He has zero quality of life (and I don't feel much better off myself to be quite honest). I work full-time in a stressful job and I think I'm struggling to reach the zen-like calm some of you old-timers (I mean that in the politest possible way!) have reached; dh have been married for nearly 4 years.

Spot on about the frequent flier miles, we should all have gold cards that give us access to the first class lounges in the hospitals

I really feel like dh has just given up. He's never so much as bought me a birthday card. He has no contact with anyone other than me, ds, my family and his mum. I'm so tired of having to do everything, I guess.

The isolation is terrible, isn't it? Basically in the same way that no non-parent can understand what it's like to be a parent, no non-carer can understand what a toll that takes. Put the two together and that's where we all are. We moved north just after ds was born because I thought I'd find things easier nearer to friends. Friends who mostly had kids ds' age. Friends who I'd known for years. Nope. None of them could be arsed to make the effort, even to see me let alone ask 'wow, things must be rough for you, is there anything I can do to help?'. So that's worked out nicely - not.

Will have a look for the book you mention though moomin!

tribpot - welcome. sorry to hear that DH has not even bought you a birthday card - time to have a stern word I think (i.e. he does still have some choices in life and he'd better start making some nice gestures towards you or else! )

we also moved so more friends could help out - we have been fortunate that one family are helping loads and are fab but the others? nope. nowhere to be seen - despite lots of dropping hints.

whereabouts does everyone live? surely some of us must be near enough each other to meet up for a coffee and mutual moan chat

we are in glossop

moomin - it's quite incredible isn't it? I think of my childfree friends with their lovely weekends to do whatever the hell they like and none of them has ever said "could we take dh and ds out for an hour to give you some peace and quiet?"

Having said that, I did a fantastic course for carers last year and the 'trainer' said "it is their life and their choice and you have to respect their choice". For example, why haven't I asked them for help instead of just resenting all their free time? So perhaps I should.

Communications with dh have broken down to the point where I can't even be arsed pointing out that I resent the fact I get zero attention. And that can't be good, can it?

I'm up in Leeds.

moomin I used to live in Sheffield - ie not that far from Glossop - but that was about 20 years ago. Would have been able to meet up! I live in London now though - or just outside. You all seem to be back up North .

The pregnancy is going really well, thanks. I'm 24 weeks and starting to feel a bit more human again - though sometimes I overdo it because I'm feeling energetic and get worn out. bondgirl I could relate to your comment about work feeling like a break. I totally identify with that - it's definitely 'me' time. (I'm on 'holiday' at the moment and am finding it much more tiring than being at the office!)

tribpot I'm so sorry to hear your DH didn't even get you a birthday card and that you're not able to get through to him . Sounds as though he has depression... he needs to take some responsibility for how his behaviour is affecting you though, regardless of how down he might be feeling. (Much easier said than done, I know.)

hi again thank you all for your posts ages ago when i first posted about dh and ms diagnosis i haven't had any internet access since as we had embarked on a massive renovation project on our house and moved out with two kids before we had diagnosis and by the time we realised what was wrong with dh half the house was demolished!!! anyway 4 months later we are home yeah!!! and i've had to move us all back in again!
am feeling pretty p**d off with moving boxes on my own and furniture beds wardrobes....etc but am no longer feeling like the world has ended because dh has ms which is progress! i have started taking people up on their offers of help which i've never done before and am going to be more upfront about asking for help too. but lots of people/friends seem to have dumped me already since we found out about his illness. anyone else had this?? its pretty upsetting really but maybe i'm just paranoid?? my youngest dd starting walking this week!!

huge hugs for mummydoit who's DH has died (see bereavement thread)

thinking of you

Yes people slithered away when DH became ill, friends he had spend years caving with and thought he could trust with his life. Not that many friends offered to help, though I am possibly a bit responsible there. But others, often ones we didnt know that well, have become good friends and shining lights. Going out with a group of female friends, even once a term, keeps me sane - This is non negotiable. Though have noticed more and more becomes Non Negotiable as I have got older and arsier! Is it possible Tribpot for you and DH to keep some sort of social life going - anything to make life seema bit more normal for both of you?

Ruby, are you all settled now? I was in a very similar position to you a couple of years ago. Things are a lot easier since we finished work on the house.

Well we have just done the 2am A&E run - but to an Italian hospital. They were great, and thank God for the E111. DH had been mucking around with his analgesics and managed to overdose - he was navy with revolving eyes when we got there. Am knackered and somewhat pissed off with him!

hey apollinare hope you've had a quieter couple of days! that sounds a bit of a mare

cissycharlton since we moved back home i've felt a lot calmer despite the chaos around me!! the friends thing i feel worse for him really cause it seems to be his friends that are nowhere to be seen really although its also some of my mummy friends too.

we are off to centreparcs tommorrow yippee!! and the ms nurse came this week to talk him through the betainterferon and injections n stuff so at least things seem to be getting sorted. i know its forecast raining all week but i don't care am going to the spa defintely!!!!

apollinare - what a nightmare - hope all is sorted. Last time we did a 1am A&E run (suspected meningitis following chemo - scared? us? just a bit!) I got zapped by a speed camera on the way home and got 3 points and a £60 fine. FFS!!!!!!

on a positive note though - DH did not have meningitis - just mastoiditis (which they eventually confirmed after 7 failed attempts at a LP- sigh)

All Ok now and back home, but am definitley suspicious of morphine patches! And bloody speed cameras, one got me just before we went away. A week in a spa sounds idyllic.

DH was distraught when he came round, really distresed at finding himself in hospital AGAIN. The Italian doctor told him, 'this is not a deterioration or step backwards, just an episode and tomorrow you will go home and your life will continue as before. Chronic illnesses are so difficult for everyone to cope with'. Putting things into perspective was amazingly helpful for him.
I think that maybe there is an general assumption that a chronic illness is a long -term background condition that continues at an even keel and we can all learn to adapt. The reality came as a shock, that with illnesses such as MS, RA and other conditions we all know on here, that actually it is not a background inconvenience, but a lurching from one crisis to the next, with hopefully a lull in the middle!....Lets hear it for the lulls...

Moomins, how is your lovely baby?

rubyroo which Center Parcs did you go to? We went to Longleat for the first time ever. Think we'll try to go again next year (will have to start saving now) and will go for an adapted villa.

apollinaire that sounds terrifying! Glad you're all ok now.

Gosh haven't found much time for posting since my initial one I now realise about a month ago!

Totally relate to the friends where have they gone comment, I am TOTALLY crap at asking for help though and try and do it all myself. Had a bit of couselling last year which was no use at all and one session where she suggested I was a bit of a control freak. I'm of the mind where 'if you want something doing, ask a busy person. And I am certainly that! I have a strange sense of satisfaction if everything goes well in the day - DS off for naps at right time, shopping done, meals made etc. I'm not that great at being idle, god knows what I used to do with my time before mum/carer!

moomin I am in SW London at the moment about to try and move just north of London to the town where my parents live. I have found that family are the only ones who have remained steadfast and my parents can help a bit with childcare in the week and at weekends for us to maybe go out occasionally for a meal or to the cinema or something.

tribpot - isolation, yes! I feel so lonely sometimes, esp when DS is ill as my DH is not that interested/involved when it comes to these things. After DS's latest plunge into the bookcase cutting his nose whilst learning to stand up I was so worried and would have welcomed another opinion on whether to take him to docs/A+E there was just no response from DH who sort of shrugged. Which was really useful!!

rubyroo how on earth did you cope with moving all that stuff yourself?? I am considering getting a company that comes and packs up all our stuff and unpacks it at the other end as we have over 3000 books in our flat and it would be a total nightmare to do. Plus DH is really bad at getting through narrow spaces so I don't want a load of boxes around for weeks on end.

Sorry just read back and realised my comment about living in London should have been directed at you verso!! Hope your PG is going well.

how's everyone doing? need some advice...

I apologise if this is a bit of a morbid subject but has anyone made arrangements for the children or your DP if something should happen to you? I am just so conscious that if I were not around then there is no way that DH could cope on his own - he has no family to speak of, we have only friends to call on or my parents who live 3 hours away and although spritely are in their 70's. It has been worrying me alot about what would happen..... I wouldn't want the kids taken away from DH (or for them to end up being full time carers)

any ideas?

MM,I have been thinking about the same thing, it is an awful thought isn't it? I recently set up a life insurance policy, but it's only money. I have been meaning to make a will too. I would probably nominate my parents as guardians for our DS although I hate to think of where my DH might end up living, his options would probably be with his ageing mother who already cares for his stepfather who has dementia, or with his sister with whom he has a rather love/hate relationship. I also recently had a vivid dream where I just collapsed suddenly, and in the morning I wrote an emergency list of what DH should do if I suddenly zonked out as he did with his stroke. I'd be interested to know if anyone else has thought about arrangements too!

I got really obsessive about this when the DCs were very young. In the end made a will specifying what would happen to them if anything happened to me, and if anything happened to both of us. Wasnt a very satisfactory solution, but at least I slept better! Really glad Ive managed to limp on though. I can't rely on family, but named two good friends as guardians, had to put in a codicil when one split up with husband and moved in with nasty -tempered moron (he speaks very highly about me as well).