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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To want our family and friends to help us?

85 replies

Knackeredmother · 16/10/2011 11:43

I genuinely don't know if I'm being unreasonable to feel like this and am getting quite bitter so value some honest opinions.
My son is nearly 2 and has had over 25 hospital admissions. He gets respiratory distress with every cold and is frequently blue lighted in for Oxygen/Nebs/antibiotics. He's needed lumbar punctures in the past and gets really sick. I have another child and a self employed dh whose business is sinking from all the time off he needs.
Being in hospital is so draining and emotionally exhausting and I get about 1 hour sleep a night due to the usual alarms, hourly meds etc. I do hospital alone as my husband needs to work/ look after my dd.
We have ironing up to the ceiling, we don't eat properly, the dog rarely gets a proper walk, the house is a tip and we are sinking.
We have both lost our mums and my dad lives in Scotland. My dh family live within 5 miles and never, ever help us. Friends used to offer to help but when I'd say can you walk the dog, get some shopping there would be some excuse.
Now I know people have their own lives and children and don't have the time to help us regularly. People were good the first admission but since then it's become normal for us to be in hospital.
I do tell people we are struggling but I'm so conscious I just sound like I'm moaning. The hospital ask every time about 'support' but how can they help- come and walk the dog?
We pay for as much as we can afford, cleaner etc but I just want someone to knock at the door with some bread and milk or a lasagne! I'm starting to cut off family and friends because I'm so bitter so really need some perspective.
I'm also trying to hold down a professional job with very unsympathetic managers (phoned from the ambulance on thur to say I couldn't make
My nightshift and was told tough, leave him with the nurses)
And before anyone says it I'm not depressed just struggling to cope in a really difficult situation without any support.
So AIBU to feel pissed off at our family and friends?
A bit long sorry .......

OP posts:
HermioneRocks · 16/10/2011 16:47

I will happily walk your dog if you are near me? (Nottingham/Derby borders)

troisgarcons · 16/10/2011 16:47

Some people don't give out 'need help' vibes. I don't.

If I go into hospital, all the old dears rally round my husband with dinners, laundry offers, hoovering offers ...... if he goes into hospital I get a 'how is he?' .... however if hte washing machine has gone kaput I do go and ask for a loan of theirs, and I get a 'of course you can, you only have to ask'.

Perhaps you just come across as a 'coper'.

Some people do have to ask because some people get knocked back when they offer.

thefirstMrsDeVeerie · 16/10/2011 16:50

www.rainbowtrust.org.uk/

This is the organisation I was thinking of. I wonder if they would be of any help?

Does your DS have a diagnosis? Perhaps there are condition specific organisations that can offer support?

Contact a Family are a good source of information.

catsareevil · 16/10/2011 17:03

It sounds realy difficult.

Have you considered seeing if you could go LTFT at work? Sometimes that can mean that you can work 9-5, which could make things easier.

You should apply for DLA if you think you wll get it. It isnt means tested.

VFVF · 16/10/2011 18:01

I'm sorry about your DS that must be very stressful. I like dog walking if you are in the North East?

RosemaryandThyme · 16/10/2011 18:27

I'd love to help - would simply make me feel great!

Would happily come over to do a mega pile of ironing, land hot meals on your door-step, order your shopping on-line for you, run the hover round, etc, I live in a Community situation where helping out is a path to personal fulfilment and a concious life-style choice.

If your in the Hampshire/Wiltshire area perfect - if not me then do try other community living groups, the Diggers and Dreamers website has a good list of contacts and there is always religious groups who may well rally regardless of personal faith, pop into your local Gospel hall, Methodist church, etc - there are loads of folks out here who gain personally from the chances to help others - don't be afraid to ask, you'd be amazed how special you can make a person feel by allowing them to reach out to you - it is you that would be doing them a favour.

altinkum · 16/10/2011 18:36

This reply has been deleted

Message withdrawn at poster's request.

SacreLao · 16/10/2011 18:43

Would also like to add to the great advice you have had here is to contact Sure Start, they often have volunteers that can help in situations like this.

It sounds like things are tough and I hope you manage to get some support in place.

DEFINATELY look in DLA as the extra money will ease the financial pressure's and may make it easier to get help with cleaning and dog walking etc.

starfishmummy · 16/10/2011 18:51

Yanbu. We live in total chaos and basically we just do what we need to get by - if that means an ironing mountain and just doing things as we need to put them on, or an internet shop, or giving family their birthday presents two months late then so be it.
And yes, we get the" ask and we'll help but not this week because I'm busy and then I'm on my tenth holiday of the year........
But we cope.sort of. You just learn to do it.

thefirstMrsDeVeerie · 16/10/2011 18:57

Homestart?

Is there one in your area (is it homestart? Its home something but with surestart I am getting confused. Someone will know)

thefirstMrsDeVeerie · 16/10/2011 18:59

Can I just add (it may have been said already) DO NOT attempt to fill in the DLA forms yourself. It is very difficult to get DLA for under 2s and you will need professional help to fill in the forms.

You may be able to get a blue badge (you dont need DLA to qualify) but you will probably need a back up letter from OT, Physio, paed etc to get it.

ASK for help. Please.

LovingChristmas · 16/10/2011 19:08

I second the idea of someone walking the dog for you, I always loved dogs and couldn't have one, so at the age of 12 upwards I used to walk two lovely (since at rainbow bridge) dogs for two different people, twice a day, before school and after, I loved it rain or shine, i got paid £5 per week per dog (and an extra tenner on my birthday and in Xmas card). I loved them like my own and never ever missed a day until I started my own apprenticeship at 16. I cried when both dogs died, but the owners are now family friends and are amazing. Is there someone on your street who has a teenager that is fairly mature who would prefer to do this rather than a paper round, or who already does a paperround and would take your dog, therefore earning extra money for doing the same round.

I ended up with my own key to one of the houses and there are still genuine people out there who want to help :)

I hope it gets better for you, and in answer to your question YANBU!!!

margerykemp · 16/10/2011 19:09

Why doesnt your dp give up work and become a full time carer? He could get carers allowance. Is dd in nursery? Maybe live in help like a nanny or au pair would suit you better.

Def get the hospital sw on side, they could maybe offer a home help or respite.

Whathashappenedtomyboobs · 16/10/2011 19:10

Knackeredmother How awful for you and your family YANBU! I can't even begin to imagine who exhausted you must be.

DS and I would gladly walk your dog... we currently live in Hertfordshire but are moving to Bedfordshire beg Dec. if you live close let me know. We love dogs and walking :)

duvetdayplease · 16/10/2011 19:24

YANBU. I recall these bitter feelings from when my son was ill, I found them very hard.

I think you've had some great suggestions. I really, really hope son gets better.

Your employer is out of order with what he said, I would be tempted myself to document it all and get signed off with stress if they continue to be so unreasonable.

ssd · 16/10/2011 19:25

op, yanbu

hope you get some ideas from this thread, all the best

thefirstMrsDeVeerie · 16/10/2011 19:30

margery carers allowence is only a few quid and their DS would have to be awarded at least mid rate care for them to be eligible.

Its a huge step giving up a whole wage. We had to do it because DD was in hospital most of the time and when she was home she was too weak for school.

Our finances have never recovered.

altinkum · 16/10/2011 19:30

This reply has been deleted

Message withdrawn at poster's request.

PenguinPatter · 16/10/2011 19:33

I'm glad other have some good suggestions.

I remember being very shocked and hurt when we hit a series of medicinal stuff happen to DC and DH and help wasn't there. We were lucky thing were under control with in few months - though aftermath took longer to sort through.

The exhaustion and bitterness left me very low for a long time afterwards.

I really hope things improve for you soon.

BimboNo5 · 16/10/2011 19:45

I think you would struggle to get DLA without a diagnosis as such. What do they say it was when discharged from hospital- viral induced wheeze or something?
Im not being rude (I see this a lot at work) but I would personally be pushing for a diagnosis/better management of this if a child of that age has had 25 hospital admissions.

katedan · 16/10/2011 19:50

I just wanted to second the suggestion of homestart, they will be able to give you 3 hours a week of help so could maybe walk the dog, play with dd, do the ironing etc. I am amazed you are both still working. Could you ask MN headquarters if there is any MNetters registred near you who might be able to help. Hope things get better for you soon.

curlyredhair · 16/10/2011 20:12

Knackeredmother, whereabouts are you? I would be happy to help. Am in South East London.

MrsVidic · 16/10/2011 20:27

I just wanted to add that your friends may not realise how grateful you would be of help with practical things. They may offer in their mind to help ie with Child care, lifts etc and then when you offer washing / dog duties they may not be up for it. I second advice of asking them what they can do. And don't be afraid to tell them you're not coping

shaz298 · 16/10/2011 20:55

Hi KM. Sorry you are going through this. Hats off to you for still being able to work at all!!

Re the rest, as others have said it does seem to be beyond the understanding of most folks who don't have to deal with hospitals etc. My DS had 35 hospital admissions in 2009 and manay many before then and lots more since ( only know about those ones because I counted them when talking at a conference recently).

We had guinea pigs which are now living in a new home as it just wasn't practical to keep them. Not nice and a bit drastic to consider but could the dog be rehomed? That would be one big responsibility less.

Re the actual turmoil of living in the hospital and going back and forth. I always have a bag packed with enough clothes/toiletires/medications for both DS and me for a few days. I always have a purse with money/change i n it for emergencies/phone charger/books to read/reading torch and a bag with some of DS favourite books, small toys in. And a must have is earplugs!!

None of our family 'get it'. We do have a few friends who do understand but they are very much in the minority. The thing our family tends not to get, not sure if you find the same, is the emotional toll on you of living on the edge and being terrified each time for the life of your child. We go through on a regular basis an emotional rollercoaster that most parents experience once or never in their lives. It takes over your life and no decision is made without considering the what ifs. All of that is completely exhausting.

We are lucky that in the last year our hospital trips have reduced significantly and it has mad a huge difference. Howevr I still have the hospital bags packed, we don't have any pets and still consider the what ifs before booking/arranging anything.

Not sure if any of this is helpful. Hopefully it's helpful to know that you are not alone. Hoping that your DS keeps well and that you can spend lots of hospital free, happy time together xx

Original poster
Knackeredmother · 16/10/2011 21:03

Hi everyone, we have been at a birthday party this afternoon (accompanied by a few much needed glasses of wine) so I've not been on here.
I'm overwhelmed and greatly touched by the generous offers of help. You are amazing people to offer to help a stranger.
I will reply properly tomorrow after some rest but brilliant suggestions and support here. I feel much better reading them and think I was having a really low day today.
For those who asked, we have no diagnosis but we were told for a long time it was just 'bad luck'. We know have a working diagnosis of persistent endobronchial infection. We are under a general paed but pushing for a respiratory specialist.

OP posts: