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

(76 Posts)
sandramaryb Tue 08-Apr-08 19:41:06

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?

PeachesMcLean Tue 08-Apr-08 21:30:22

Hi Sandra, can't help personally, but I didn't want your post to go unanswered. There seems to be a few, I don't know if posting in Health may turn up some of them for you.
Good luck.

sandramaryb Wed 09-Apr-08 20:58:45

Appreciate the answer, as I am new on the list wasn't sure where to post!- will try Health - thanks

PeachesMcLean Thu 10-Apr-08 21:32:25

And welcome to MN. wink

chegirl Sat 26-Apr-08 21:47:04

Hey Sandra,

My OH has MS and I have 3 kids 14, 5 and 4mths.
If you want to chat I am here. I am very new to mumsnet so its going to take me a while to work out how it all works so be patient with me!

misdee Sat 26-Apr-08 21:48:12

Hi sandra, I'm not anymore, as my dh is now post transplant, but did for a few years. its very isolating at times and it feels like you dont do anything else.

sandramaryb Sun 27-Apr-08 10:32:18

Hi chegirl and misdee, thanks for your messages. It's so good to hear from you. I have my ups and downs and so it will be nice to have some support. I am new to the list too and I think this is great.

My DH has has had CFS/ME for 15 years, I can't believe it really, it has been so long. We have a 4 year old and a 6 year old and helping with them seems to have made him worse as I he looks after them while I work. Weekends are the worst for me as I feel I have to do everything,

I feel positive today though, hope you both have a good day.

chegirl Wed 30-Apr-08 21:23:53

Hi again Sandra,
Sorry for not getting back to you. Its been a bit of a difficult week.
I think I know how you are feeling. It is hard to have so much responsiblity on your shoulders. It sounds like you feel guilty about your OH looking after the kids? I often feel like that as my OH gets very tired. I dont think its helpful for us to feel guilty though!
If its too much for OH to look after them have you thought about childcare? As one of you is disabled you should still be eligible for the childcare element of your tax credits. (couples where only one works are not usually eligible). I dont work at the moment but when I do, I doubt that OH would look after babes full time. I think it would be too much for him. He works evenings, part time.

Nice to meet you and please feel free to chat!

sandramaryb Sat 03-May-08 20:06:17

Hi Chegirl, thanks for posting. I've been really slack this week and haven't had time to log on to MN. It is a good idea about childcare. We are in a strange situation because we live in Spain. It's a long story but we ended up here because my OH wanted a change of scenery after being housebound for 2 or 3 years. I did a TEFL course and teach English here. He gets Incap. Benef. and we live off that and me teaching. I shouldn't feel guilty about him looking after the kids but I know he's good for nothing after a stint of looking after them and only manages to go out once a week if he's feeling OK.

I feel isolated because unless I meet someone in the same situation as me I don't feel anyone can really understand. the burden does get heavier though doesn't it? I feel like a single mum I really do. Today I went to a First Holy Communion Party (they are big on the Catholic stuff here) and it has just become so natural for me to go out on my own with the kids socially and I found myself stuck on a table of the non-pairs. Sometimes I find myself wondering how different my life would be with a normal husband and then of course I feel really guilty again! I hope I haven't put you off writing back but I do need a good moan.

CissyCharlton Sat 03-May-08 20:22:45

Hello Sandra. I can relate to your situation to some extent. My dp is disabled and although he is brilliant and absolutely does his best, sometimes things are tough. I often have to do a lot of the really physical stuff and when he gets ill he copes with it by becoming very single-minded. When I was pregnant with ds2 we moved house and he got really ill. Believe me that was hard! Remember that your kids are young and that things will improve when they're able to do more things themselves. Until then...well keep going I suppose. It's the only way.

chegirl Sat 03-May-08 21:00:22

Hi Guys,

Sandra I do know how you feel. I remind myself that its the disability I hate/resent not my husband! Our whole life has to pretty much revolve around it. Not because my OH is selfish (far from it) but because the MS places limitations on what we can do. When it gets hard I try and think of the positives. My OH is around so much more than he used to be. He is GREAT at sitting around chillin with the kids whilst I dash about. We get FREE PARKING hurray. Also he cant run off with some young thing! I never think about the future. There is no point. He might stay the same for years or go downhill next week so what is the point of worrying.

I sometimes wish he wasnt as limited as he is but hey what can you do?

But the fact remains, however positive we are, our OHs are disabled and that brings a lot of challenges with it. The fact we are women means that there is little understanding of the burdens it places upon us. After all we are supposed to do all the cleaning, childcare, cooking, washing etc etc arnt we?! I dont work at the moment but I know when I do it will be hard.

Moan as much as you like girl!

Hi Cissy,
I have just had a baby and being pregnant (and 40!) bought home to me how difficult things get. It felt quite scarey that we were both so limited in what we could do.

moominsmummy Sun 04-May-08 12:53:53

hello folks - nice to hear from other people in similar situations - my DH has a very aggressive form of MS - I can totally relate to feeling like a single parent - sometimes I get so sick of doing stuff on my own.

we have a 3.5yr old DS and I am currently 9 days overdue with DC2. DH has just had immune-suppresive treatment for his condition so we're going have to be very careful letting him spend any time on the labour ward when I (eventually) go in. Fortunately he has recovered quite well from the actual treatment but the condition itself still causes problems. I arranged an individual tour of the labour ward for us just so I could check out how wheelchair friendly it is and to make sure there's somewhere for DH to rest! wasn't that bothered about the facilities for me! grin

agree with you Che about not worrying about the future - yes there may be awful times ahead but why ruin today by worrying about it? I work 4 days a week which is hard but gets me out of the house. I make sure we use the DLA money for really useful stuff - like paying for the ironing to be done grin. other stuff like housework gets done when it has to be and not before. I also make sure I take advantage of people's offers of help - most are really happy to help out and if not I reckon they shouldn't have bothered offering in the first place!

sandramaryb Mon 05-May-08 19:46:37

Hi everyone, good luck Moomins on the delivery. I have to say when I had my daughter I was more worried about my OH passing out than about me, luckily after all the worrying everything went well.

Hi Cissy, thanks for posting. It has cheered me up knowing there are a few of us in similar situations.

Spent the day in the hospital today as my OH can't see out of his left eye. Totally unrelated to his ME but who knows really. Apparently he's got like a blister under this retina that is leaking fluid or something. It's bad news I think we're going to look on the internet and see what we can find out. We've got another appt. to see the specialist in a month and see if it clears up.
Bugger, that's all I can say about it all.

moominsmummy Tue 06-May-08 08:21:29

Sandra - sorry to hear about your OH's eye - hope it clears up soon

do you ever wish that the NHS did a loyalty card with airmiles? could have had tons of glamourous holidays by now with the number of hospital visits we've made hmm

sandramaryb Tue 06-May-08 18:54:30

very true, very true

Mercedes519 Thu 15-May-08 18:16:26

I'm really glad to find this post. My DH has AS which really limits his mobility and he is constant pain. We have one DS who is nearly 2. Like chegirl I don't know what's coming next, he could be like this for years or get loads worse tomorrow.

I think its the uncertainty that gets me. One day he is great, chatty, doing stuff with DS, cooking and the next day he is practically catatonic and sleeps all day.

I find it really hard not to blame him. Logically I don't but sometimes it's hard to remember that when I get home from work and have to do the housework and bedtime and then more work and then the ironing and then get up at 5.30am (DS is an early riser!).

Oh, and I really do wish the NHS did a loyalty card. What is it with eyes? We've been to eye casualty 5 times in the last three weeks.

sandramaryb Sat 17-May-08 13:20:11

Welcome Mercedes519, sorry to hear about your DH.

Doing chores really are a pain aren't they? I a m in a constant state of chaos and it is frustrating. I look at my friends who have more time than me and I feel a bit envious of them really. Now my house needs some DIYing done and I just don't know when I'll have the time. I feel permanently guilty that I'm not playing more with my kids, I don't seem to do anything with them anymore. I always feel more down at the weekend when I just can't do it all and the kids are wanting attention.

Apollinare Sun 18-May-08 07:47:35

I am so glad to find this thread!

My DH has had severe rheumatoid arthritis for nearly 20 years. He is incredibly brave, struggled to work for many years and loves us all dearly - when I read other threads on the board I know how much that means. However, I find the constant strain of giving emotional and physical support very difficult at times, especially when the children were younger and had their own needs - I think the hardest is feeling that I am responsible for everything! Oh yes, and how can I moan about anything in comparision to DH and the constant pain, loss of nearly everything that he enjoys doing and the effects on an intelligent, talented man of being unable to use his talents and virtually housebound.

Some people are massively insensitive about RA 'oh yes, I have that in my finger', but I am actually better with that as I just want to clout them - the knowledgable and sympathetic can make me feel very sorry for myself and self pity is pretty unhelpful.

Things are much easier now the children are older and don't need/ want so much attention, but I too will join the 'casualty
club card' scheme. But how I would like us to be 'normal'- go for walks on a sunny day, see my DH go off to work every morning looking forward to a challenge, turning bloody Ebay off the computer....

sandramaryb Sun 18-May-08 10:46:40

Hi Apollinare - welcome to the thread. It is nice to know there are more of us out there.

moominsmummy Mon 19-May-08 21:01:14

Apollinare - i know what you mean - when we tell them that DH has MS - they always say "my auntie's neighbour's cousin's best friend has MS and they are fine/totally immobile" as though that sort of comment is helpful!

on a nice positive note I've not been on for a while as had a baby on may 7th!! piccy of the little lad on my profile to cheer everyone up (well I think he's gorgeous anyway!)

hardwork though doing all the nightfeeds etc on my own - DH was fortunately well enough to actually be at the birth which was fantastic for us all

sandramaryb Mon 19-May-08 21:20:15

Contragulations moominsmummy, DS2 is really beautiful.

I'm glad your DH could be at the birth. My DH missed the first one and made it to the second one and it was fantastic too.

I have to say I was more worried he was going to fall over, as he does this if he has to stand up for a long time, but someone found him a chair which helped.

I hope your are coping alright with lack of sleep etc. If you need a moan we'll be here smile

Mercedes519 Thu 22-May-08 19:37:04

Thank you guys, for just being here. I've just sat down at the computer after putting a screaming DS to bed and had a little cry. My DH has been asleep for 16 hours out of the last 24, I'm so tired I nearly fell asleep at my desk and its not like I can have a lie in at the weekend.

Sometimes life is so damm hard. And so bloody unfair. This isn't what any of us signed up for.

But thank you all for reminding me that I'm not alone and as you say Apollinare "Oh yes, and how can I moan about anything in comparision to DH and the constant pain, loss of nearly everything that he enjoys doing and the effects on an intelligent, talented man of being unable to use his talents and virtually housebound." Quite.

Am off to look at moominsmummy's new baby and cheer myself up. And she can tell us about sleep deprivation!

P.S. Just as I was about to post this my DH came in and gave me a great big hug. It all seems a little bit better now.

Apollinare Fri 23-May-08 08:53:52

Many,many congratulations MM on your beautiful baby. I just love that bit when they lie on your chest, cosy and content, and go to sleep.......

Having been thinking about the sleep deprivation bit - I think that the most useful skill that I have learnt is not the mega -crypton and terrifying glare, to be used on special occasions only, or even the ability to say (out loud) 'OK, maybe I'm selfish old bag, but now I'd like to be ill/ knackered for a while', but the ability to catnap for 10/15 minutes and wake up a million times more refreshed. It takes a bit of practice, but I worked hard at it (LOL) and can now slip under the covers for a quick nap at anytime - 'Mummy's keeping a little mediterranean time, you go and see daddy!'

sandramaryb Fri 23-May-08 19:27:08

Are we ready to face the weekend? I have tried to be a bit organised and do some cleaning up today which hopefully leaves me more time with DS and DD. It's not that I've neglected them but I just seem to be at work all the time or cleaning etc. My DH has still got something wrong with his eye and though the specialist said it should clear up it hasn't and is getting him down though he isn't complaining. He hasn't been out for 2 weeks as he's extra tired with it all. I do feel so bad that he can't do normal things like seeing friends or going out for a beer.

On a positive note though, I've started going swimming and this is really going me good and hopefully will give me more energy too.

Happy Friday everyone.

youareamazing Fri 23-May-08 19:38:53

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