To want our family and friends to help us?

(86 Posts)
Knackeredmother Sun 16-Oct-11 11:43:13

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 .......

Have you had SW involved and an assessment of needs as a family/carers? Has DLA been put in for?

You have addittional rights at work as your child would come under the DDA, so you are a carer/parent of a disabled child.

You may have to look to them for help, rather than family/friends.

YANBU to feel let down.

TheRealTillyMinto Sun 16-Oct-11 11:54:57

your friends seem to offer help but then not want to do the tasks you give them. maybe you could ask friends what help they wanted to give? then at least you will get something from them.

YANBU, you are dealing with so much and unfortunately it is times like this when you discover who you can really count on in life. It's not surprising you feel bitter although I think you need to fight that feeling as much as you can, because it won't help you cope with things any better.

I think it's hard for other people to know how to help, especially when it seems to be a permanent situation. They might not mind walking the dog one day, but are afraid that then they will be expected to do so every day, so they make excuses.

You say you want someone to knock on your door with bread and milk -- can you not do online food shopping? you can even set it up to order the same thing every week or month.

You should tell the hospital you need support, they might know of volunteer groups that help people such as yourselves.

Can you pay a local teenager to walk the dog?

I know this costs money but if it helps your DH work then it's worth it.

It all sounds really hard, I'm so sorry you're going through all this.

squeakytoy Sun 16-Oct-11 11:57:30

YANBU at all.. it sounds utterly exhausting.. and I am amazed you are able to do any sort of professional job yourself.. is it vital that you work? I am sure there must be some sort of benefits in place for someone who is genuinely struggling to cope with a sick child.

mycatsaysach Sun 16-Oct-11 11:57:59

no you are nbu but i have some experience of ill child in hospital long term and i wd say this sadly is quite normal.
what you are going through is beyond most other people's experience and i think they just don't realise you need help.the only person i cd ask was my mum and even then she didn't want/was too overawed to get involved in the hospital side of things.
as birds said you need paid for help - good luck with work i have also been in that situation but my employers were excellent.
you sound like you are doing great just getting by tbh - i really really hope things improve for you.

TheRealTillyMinto Sun 16-Oct-11 11:59:34

incidentally - i am not reallly sure what a normal penis looks like & i have seen a few!

TheRealTillyMinto Sun 16-Oct-11 12:02:12

sorry - wrong thread blush

minsmum Sun 16-Oct-11 12:02:47

Google the cinnamon trust they are a charity that helps people with pets in situations like yours. A friend broke her arm & couldn't walk her dog for about 6 weeks. They had volunteers who did it for her. HTH

Blueberties Sun 16-Oct-11 12:03:18

Yes it sounds like you need professional help if it's available from social services. I also - sorry to say this - think you need to lose the dog. With everything on your plate there's just no way.

I do feel sorry for you because to be honest it sounds like a couple of friends around your house for a day and they could clear the ironing, fill the freezer, clean the house and give you a fresh start. It's always easier to stay on top of things than to get on top of things.

If there is no one at all may I suggest that you pay somebody for a day's work to clear everything that is backed up for you in terms of cleaning and ironing. I'm sorry if it's a pointless suggestion because you can't afford it. Your life sounds so stressful I feel an urge to pay for it myself and it seems such a straightforward, head-clearing start.

Blueberties Sun 16-Oct-11 12:04:01

Oh the Cinnamon Trust sounds marvellous.

Nowtspecial Sun 16-Oct-11 12:06:11

YANBU, I have been in a similiar situation and have just accepted that usually you can't rely on anyone. What infuriates me is those who have family that do help and then whine about it if someone offers a snippet of advice they don't like or something equally mundane and insignificant. They don't know how lucky they are.

Knackeredmother Sun 16-Oct-11 12:08:51

Ha ha real Tilly, that really made me chuckle even if it was unintentional!
I never even gave the DLA thing a thought. It sounds daft but because we have never claimed benefits and have good jobs it never crossed my mind.
I also keep thinking he will get better.....
I need to have an official discussion at work about my situation. Ironically I'm a doctor in the hospital where he is admitted, but because we move around regularly I never have the same boss for long. Some bosses have been great though, just my current one and I'm there until April.
It's more the bitterness I seem to be harboring, I need to get a grip!

Knackeredmother Sun 16-Oct-11 12:11:14

Meant to say we move around jobs within the hospital, not home!

eaglewings Sun 16-Oct-11 12:11:42

Great ideas already. Are you sure you are getting all the financial help you can such as carers allowance etc. Ask to see a hospital social worker of you need to

As for your family, have you had a straightforward chat with them outlining help you could do with?

Pray things improve somehow

eaglewings Sun 16-Oct-11 12:12:42

Sorry, see others already got there blush

GreenandBlacksAddict Sun 16-Oct-11 12:31:06

No.1 , ignore the ironing, bung everything in the tumble dryer and give it a quick shake and a fold when the cycle's finished
No.2 employ a cleaner for once a week , make sure you have one recommended by someone you know
No.3 perhaps you look like you are coping well which is why your friends don't offer help , confide in one or two that you are at the end of your tether and that you really need a few favours over the next few months
No.4 phone acas.org so you know your employment rights then meet with your boss and explain your situation
No.5 spend 40 mins online supermarket shopping (Ocado are good they always have everything you order) order a months worth of ready meals,frozen veg,yogurts etc ( I'm not keen on them either but if it makes life easier for a month then so be it) and fill your freezer
No.6 dh family useless, so is my dh family - this used to annoy me, best advice forget they exist, one less thing to worry about !
No.7 your kids will remember that you spent time with them when they were ill, they will not remember that tea was a ready meal lasgane or that the dog got bit fat or lazy (since I've had morning sickness our dog has only had one walk a week when dh does it).
No.8 save yourself some money by not buying Christmas prezzies for anyone who hasn't helped you and put it towards treats for your kids

albertcamus Sun 16-Oct-11 14:21:18

Knackeredmother - I so understand how you feel. When PFB DS1 was diagnosed with aplastic anaemia aged 3.5, and my twins were 1.5, we received very little help from our families. He had to stay (thankfully only) four weeks in an isolation cubicle in GOSH after chemo and bone marrow transplant, followed by a year of immunotherapy and enforced imprisonment in the house, to avoid the germs liberally spread around by people who don't realise the implications of sharing their chicken pox etc. etc. During that time, we needed any help we could get and I became very bitter indeed that DH's family, all of whom had late teenage children, did absolutely NOTHING to help, even though they all live within 10 miles of us (he had two older brothers and an older sister). My family, such as it was, tried their best, but my mother's idea of 'helping' was to split the twins up, my sister lives 100 miles away and already had her hands full with an epileptic 10-year old needing brain surgery and a toddler, but at least she offered to have the twins, which was much appreciated, although I couldn't bear the thought of the whole family being apart. So very luckily for me, a wonderful friend, who had three DC of her own, then aged 6, 4 and 1, took the twins while DS was in hospital, enabling DH to carry on working and to swap with me at the weekends so I had a break from the hospital, and got to see the twins. What a great friend, and a wonderful thing to do for us. I was disgusted with DH's family and have had nothing to do with them since; as far as I'm concerned you can choose your friends but not your family.

You will look back on your hour of need and be proud that you got through it, but you need to accept that some people are fundamentally selfish, whether they are your family or not, and others would help you even though they are not related to you. I was bitter for a long time, but it is a pointless and negative emotion, try to conserve your energy for your DC and DH as much as possible, and well done for keeping working too, that must be really hard, at least for me I didn't have to try to hold a job down at the time.

Good luck, hope things get better for you thanks

I second the Cinnamon trust - far better than entrusting your precious pet to some teenager.

Failing that, and having done a quick search on posts to see where you are, give Denise at Dogwatch a shout - Telephone 0121 242 0369
Email - dogwatchuk@hotmail.co.uk

She's a rescuer so won't be able to help herself but she may be able to put you in touch with a trusted volunteer who will pop over and walk your dog or offer you some dogsitting in their home to help ease your burden. If you were closer to me I'd offer him daycare and walks, wish I could be of more practical use.

thefirstMrsDeVeerie Sun 16-Oct-11 14:36:07

Knackered YANBU. It is very isolating and tireing having a sick child.

People should help but the rarely do becaue they simply do not understand what its like and what is needed.

When DD had cancer we were pretty much left to it. A few people came out of the woodwork and were bloody brilliant. Interestingly they were not always the closest of friends. Very very little help was forthcoming from family.

My OH has multiple scleroris and was left at home coping with a 10 year old and a 1 year old with sn.

No one every came and bought him food or cleaned the house.

But then we never asked anyone. I found when we DID ask for specific help people were much better. Friends came round and helped me clean the house to a deranged standard after DD and me had been in hospital for 6 weeks.

I wish I could help. I really would if I could but unless you live in East London I cant.

Ask the social workers at the hospital if there are any charities like 'Rainbows' (I think) that can provide practical help at home so you can have a rest.

Sending you strength and a 'bloody well done' because I know how hard it is and how odd it is to be living a life that noone seems to have a clue about.

I used to feel like an alien as I watched people go about their 'normal' lives around us.

Def ask about DLA x

ImperialBlether Sun 16-Oct-11 14:46:10

What an awful position to be in.

I would increase the cleaning to as many times a week as it takes to keep the house in the condition you want it.

Ask your HV about Home Start - I would have thought this is just the sort of thing they deal with. They will send a parent to you once a week to help you.

Do you know any teenagers? If so, hire one to walk the dog twice a day. It'll be one less thing to worry about. If you don't know one, ring up your local sixth form and ask to speak to the head. Explain your situation and ask whether they can recommend someone.

Is there any way you could afford an unpaid leave of absence for a few months? In similar situations at work (children being very ill) the staff have taken sick leave due to stress - that might be difficult for you to do with your child being at the same hospital, but is there anything else that Personnel could offer you?

I hope your son is better soon. There's nothing worse than a sick child.

OneNerveAndYouAreOnIt Sun 16-Oct-11 14:58:09

where do you live, im happy to help if you live near by

ChippingInToThePumpkinLantern Sun 16-Oct-11 14:59:39

I'm sorry you are being so let down by family & friends - sadly it's fairly normal sad

Throw as much money at it as you can. Do whatever you can so that DH can keep working properly.

How about an Au Pair? I know it's not ideal having someone else in the house, but it's another pair of hands and if you choose the right one, they will be worth their weight in gold.

Definitely sort out getting the cleaner in more.

Ditch ironing - I used to iron everything. I currently don't own an iron!!

Employ someone or use a volunteer to look after the dog - another thing the AP could do!!

Make a list of things you need someone else to do - ask friends & family to do them or pay someone to do them.

Do not spend any energy on family & friends who are not there for you. Just don't.

As for your boss - angry you definitely need to talk to someone at work and get this sorted out. I appreciate your job is important and you are probably not easily replaced when you can't go in, but shit, they need to understand that no matter what - your kids come first. End of.

Rivenwithoutabingle Sun 16-Oct-11 15:05:32

Message withdrawn at poster's request.

HattiFattner Sun 16-Oct-11 15:17:46

knackered, have you asked your local church? Many will help out, even if you are not regulars. You could ask the priest to mention your family in dispatches, and ask if anyone could help eg walk the dog, or watch your other child. Its difficult to ask, but in our village, for example, we have several older ladies who love dogs but dont want the responsibility, but would be delighted to take him for walkies.

Alternatively, put a card in the postoffice.

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