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?

You are amazing - I am sorry to hear about yor diagnosis, but glad to read what you say about your husband and that you can rely on each other for mutual support - five minutes on the 'relationship' threads is enough to start me counting my blessings.
Are you posting about this on any other threads?

We are 19 years down the line, so tell you a bit of what I know - which is not that much!

The effects of the new anti TNF drugs are awesome - my DH started them late last year so far, so good - he is slowly gettng his life back together. There is suddenly so much light at the end of that tunnel for RA sufferers.

Watch out for cooked cheese - not trivial, 2 slices of cheese on toast can land my DH in hospital and quite a few other sufferers say the same. Other things can cause a reaction; red wine, bad weather, change of season, but nothing like cooked cheese.

Ask your consultant millions of questions about the treatment you are being given, not just the disease. The anti TNFs are v.expensive, some hospitals are giving them at the onset of illness, others will just dosh out methotrexate (V.Cheap) for ever, assume that the health authority will start objecting when Anti TNF is prescribed.(think Northern Rock bailout here)

It is good if your husband is pretty arsy - I am, so will be very persistant if necessary.MY DH often isnt up to a ruck.

The old cliches are very true - as one door opens etc. Your life will, of necessity, change, but not stop. Our children have def. benefitted from having their Dad around at home, are much more empathetic towards chronic illness. Even the one with the sensitivity and unselfishness of a plank.

If your consultant is crap, unhelpful etc., change hospitals. My DH is now under the Orthopaedic Hospital in Oswestry, has been for about 10 years, and they are marvellous.

Riven

It makes me feel quite humble reading your posts - to see things from 'the other side' - it is easy (and easier) to get caught up in the busyness and forget the other persons feelings. I would also hate having to ask for help, though from my perspective, I am OK doing the stuff as long as know that it is appreciated. Not effusive thanks for every time I pick up a spoon, just a general 'I feel loved and appreciated' - does that make any sense?

Message withdrawn

So, Sandra Mary, hows the weather in Spain this bank holiday weekend?

Hope all has gone well for you, and for everybody reading this thread.

Well Apolli I think the UK is getting all the good weather this week for a change! Compared to last year, it is cold, wet and windy but promises this week of brightening up.

Riven, you have it hard and the changes you have had to make are incredible. I'm sorry about your daughter's condition. Words don't really seem adequate.

I am busy getting involved in my DH's end of year concert(school finishes in June here) which is fun. He is in first year of primary school and they end of year party is supposed to be good. Just as an indication of how skewy the timetable is over here, on the programme they are due to do their number at 10.30pm and they are only 6! The "evening" is just 2 or 3 hours later over here and people have their tea at 9.30 and kids go to bed on a school night at 10 or 10.30. I stick to UK timetable as much as I can in this area.

DH's eye still bad, still can't see out of the left one and headaches are troubling him too. We're hanging on in for our hospital appointment next week.

Moomins I hope you are doing Ok with baby and getting some rest.

Have a good week everyone

You have my sympathy. My dh has terminal cancer, up to the last few months he hasn't been so bad, but now he is restricted to a wheelchair outside the house and needs oxygen. We've just had a holiday, 5 days away, and while if was fun in part it was such hard work trying to entertain the kids, while dh needed to rest, and how to find things that let the kids run off steam, that dh could still 'manage'. and I feel that he is too ill for me to 'leave' for any lenght of time. He is also waking up to 10 times a night, so I'm shattered

dh is very 'brave' about the whol;e thing, which in some ways makes me feel even more guilty.

Martianbishop - what a difficult situation you must be in. I found it impossible when the kids were young trying even to keep them quiet while DH slept, never mind entertained. We used to go to holiday cottages, but they are usually so awful when it rains, with a knackered TV and jigsaws with a picture of a corgi. I used to get back thinking why did we bother.

How old are your children? Very young? I will be thinking of you, even if I can't do anything practical. Have just thought of this - we have rucks of photos albums which the kids love to look at now. They have really fond memories of the times when we went to the seaside/ Lakes - so thats probably why I bothered. Hope you manage a siesta today.

they are 11 and 8, thankfully the most demanding of the ages have now gone, and they can entertain themselves farm more now than even a year ago.

I just felt like a little whinge

Am I too late to join this thread? My DH was diagnosed with cancer of the oesophagus and stomach, with secondary cancer of the liver and lymph glands last February. He spend much of last year having chemo and radiotherapy and is back on chemo again (his third and final lot). He won't ever get better but we're trying to buy him as much time as possible and give him the best quality of life we can. At the moment, apart from problems eating and fatigue, he can lead a relatively normal life, even working some of the time, but we do have restrictions. What energy he does have is used up keeping up his job (his choice) so he can't do anything at home and going out is difficult. He has to be driven everywhere. I have to prepare special food for him. The hardest part is keeping the DSs (aged 4 and 5) quiet when DH needs rest. We end up going out a lot! I do sometimes get resentful but find it hard to talk about. I'm not the one with terminal cancer so I feel like I shouldn't complain. Hopefully, people on this thread might understand!

MDI, I know exactly what you mean.

We had some nice time away, but I have come back more tired than I went. Dh is no longer well enough to drive himself and is essentially house bound unless I take him out.

And we all want to go out, but at the same time I have to sort the house/garden/washing/ferrying kids to stuff and work part time.

So while I fully understand that he needs to get out, I also need time to do the trivial stuff. And because he is no longer fit enough to help, it all defaults to me. Add to that the fact that he doesn't sleep well, and therefore neither do I and I look like an elderly zombie

We have tickets for Liverpool Sound tomorrow and because I'm a cantankerous selfish old bag have said I'm NOT leaving before the end, even if ambulances are involved!

Not once, in all the years that DH has been ill, and things have been really tricky at times, have I ever been offered help as a 'carer', nor has the GP shown the slightest concern with how I have coped - and my situation is nowhere near as bad as others of you on this thread. Our children are older teenagers now, but with hindsight I wish I'd asked family and friends for more help when things were difficult - as Moominsmummy says, they should'nt offer if they don't mean it!

Hello everyone. I can see this thread has been rattling along nicely without me. I hope everyone is doing ok. My OH is having a bit of a flare at the mo. Think its the hot weather and the fact tiny one has decided to wake up a lot at night! I feel so guilty that I havent managed to get everyone up and ready for school without OH's help yet. The plan was to be able to do that by now and let him sleep. Tiny one is nearly 6 mths and I still need OH to help me sort out middle boy. He has severe eczema and needs skin care in the morning. I feel bad. I dont work anymore, gave up when beautiful girl got ill 4 years ago. Havent made it back yet. She died 2 years ago and I am just not ready. But if I am at home I should be able to do a good job! I need to get up at 7am. I did it for years and earlier than that so why cant I get my arse in gear!!

Any suggestions would be good.

To all you guys dealing with chemo and other cancer stuff. Sending my love to you and some understanding too. x

Take care all. Oh isnt it carers week or something like that?

'Any suggestions would be good'...

I really can't believe I'm about to type this in a PUBLIC forum - thank God its anonymous - but have a look at Flylady.com.
I only do the routines and get the Emails, thats taken me two years, but that is enough to keep the home fires burning fairly calmly.

Sorry things are difficult at the moment, Chegirl, hot weather and eczema is awful. But just because you are at home doesnt mean you are reponsible for everything- nobody can function on broken nights. Am also really sorry to read about your beautiful girl.

Can't believe I've just found this thread. Hope you don't mind me butting in. My DH has MS and we have a 3 yr old DD and I'm 16 weeks pregnant (after 2 m/cs) with number 2. Thing is, it took a lot for us to decide to have another (besides his MS, DD was a traumatic birth w complications) but both very happy about the pg.

Anyway - DH has a cold at the moment and his symptoms always get worse when that happens - and tonight he just collapsed in the bathroom and couldn't walk . He had to pee into a jug . I've helped him back to bed and he's now trying to sleep but I'm really panicking .

How did you all cope when your babies were small? DD was colicky and I had to do it all pretty much single-handedly and my mental health wasn't the best after eight months of almost no sleep. (We have no family locally to help.) I'm terrified now that we've made a huge mistake but he hadn't had a severe relapse in ages - or so he said . I was thinking of getting a night nanny for one night a week - for me to get some sleep at least. Would this work?

He's also being assessed by his work's occupational health - he was put on a warning earlier this year for poor performance which they're trying to connect to his MS. He had union representation, which meant they backed off a bit, but the OH assessment is this coming week - and if he can't walk at all I don't think it's going to be good. So I'm scared he will lose his job as well... I have kept up with my career full-time thus far because we've anticipated he might have to give up work or go part-time at some point, but thought it would be a few years down the line...

Sorry - just totally splurging everything out here but I could do with some encouragement.

P.S. I can SO identify with all the secret feelings of resentment mentioned on this thread - and then feeling guilty because it's not DH's fault he has MS and really it must be worse for him. But sometimes I'm tired - and yes, the weekends are the worst. At least at work I get to take a break! So, so glad I've found this thread - although I wish there weren't so many of us on it, IYSWIM.

a night sitter would be good, you. Need to be able to carry on it is hard coping with being responsible for everyone and everything and no doubt you are doing stuff that your DH used to be able to do, I know I found it a huge adjustment, I didnt know that lightbulbs needed changing cos it was never my job.

My DH has never been much use with practical stuff tbh, onlyjoking - I've always done the DIY and house maintenance etc as well as everything else. Just can't do 24-hour baby shifts as well!!!

I'll just have to leave the practical stuff for a few months, get a sitter so I at least get some sleep, and grin and bear it...

it is important to get some sleep thou just to be able to carry on, we ended up with 24 hour carers for my DH, sadly he died on monday.
it is very draining to be a carer, you have to look after yourself to be able to look after everyone else.

Verso, would it work getting a babysitter in the afternoons? The long school holidays are about to start and many yr 11 upwards have finished, just going back for exams. I know plenty of teenagers would love a job for a few hours a day.(In fact I could send you one now!) Then you could get a couple of hours sleep in the afternoon, better than nothing, just dont catch up on the chores, and get some babysitters sussed out for when your baby is born. As OJ says, you have to look after yourself before you can look after the others. I was always knackered when pregnant, especially with a highly mobile 3 year old and ill husband.Just the constant anxiety is wearing.

OJ, so sorry to read about Steve. xx

OJ I am so sorry to hear about your DH. I came back to see if there were any messages and saw yours. I feel quite humbled now. Hope someone is looking after YOU.

Apollinaire - I'm the main breadwinner so until I go on maternity leave I'm at work. (I sometimes find being at work is quite restful in comparison to the weekends!) Thanks for the babysitting suggestion though.

is this thread still active? dh just been diagnosed with ms have 4yr old dd and 1yr old dd.have been having a hard time coming to terms with diagnosis but helps to know others out there.

rubyroo - sorry to hear about the diagnosis Have you been in touch with the MS society and your local branch of Carers to find out how they can help you?