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Caring for someone who's caring for kids - Page 2 - Carers UK Forum

Caring for someone who's caring for kids

Share information, support and advice on all aspects of caring.
The care workers (not carers) come in for 2 hours in the morning and for 2 showers at 1 hour each a week - that's it - my husband and I do every thing else - putting Rob to bed, feeding him, putting on and off his ventilator, going clubbing with him( Image ) etc.

We also have to help the care workers when they are in as there are a lot of things they won't do. We get a maximum of 21 days respite a year at a children's hospice and this is under threat as he is 26 years old this year - too old to be at the children's hospce and too young for the adult one.

A lot of time if I help with Rob my husband has to help lift me or whatever as my muscular dystrophy is progressing. Yes we get more help than some I suppose and less help than others. Both my husband and I need various surgeries but the SW will not put any extra help in other than what they have already.

Parsifal if you read properly what I posted I didn't deny that I get help - what I said was that we cannot get any EXTRA help. Even though my condition is worsening as is my husband's.

So if your conflict resolution strategy isnt working, and the day to day tactics stress you out]

Actually my conflict resolution strategy can be pretty damn good when i have the energy but not being a person who thrives on conflict, unlike some, when i am really stressed my conflict resolution strategy is to avoid further conflict/stress.

Sorry daddymike this isnt helping you is it.
At what point would you say you would need to consider getting outside help in regularly?

And... what help is available?..
I think you will just know the answer to the first question when the time comes.

For the second you definitely need to do a bit of research because what is available can vary locally and sooner rather than later so that when you do need help you know where to go for it.

I would probably start by ringing the CUK helpline to ask for thier advice and just try ringing social services and see what they say...just don't be fobbed off. If you have a local carer centre try them or if there is a voluntary group that supports people with your wife's condition try asking their advice. You could try the CAB and if you run into problems getting help even your local MP or a Counciller.

In my experience finding out what is available is usually a bit like putting together a jigsaw puzzle. Sometimes people who can't actually help you themselves can signpost you to someone who can. The more information you can find out about what is potentially available the better equipped you are to fight your corner for services if you need to.
I think you actually have to consider getting help in before you think you need it: most people leave it later than they should. Don't let it get to crisis point.

Belle's absolutely right about talking to the CUK Helpline, or you could contact a local carers support group if there's one in your area.
thanks for all the replies!

Our experience to date has been this:...

The LEA won't provide us with transport to school for my son, as we chose the one that wasnt the closest. (we chose our preferred option, as at the time my wife was not so disabled). We just got a flat "No" when we wrote to them.
(Theres hardly any difference in distance... and my wife still would have required assistance to take our son to the local school anyway... hmmmm...)

We now pay £30 a week to a local child minder who does school runs. My parents take my son to school in the morning, and the childminder brings him home every day.

We also pay £30 a week for a cleaner, (who's recently stopped coming!), who used to come in and do the basics such as ironing, cleaning bathrooms/kitchen etc - so that used to help quite a bit, but she stopped comming, and I suspect its because she thought my wife was just "being lazy" and not disabled, as often my wife would be asleep whilst she was there

My concerns for children are that my son often imitates my wifes conditions, pretending that he has sore legs or can't get up by himself... when he clearly can, and he's not able to go out and play in the same way that other children might, as my wife isnt able to effectively keep an eye on him outside (she falls asleep, or loses track of time)
Also, as she gets intense migranes, and often has panic attacks brought on by depression linked with being stuck in the house all the time... she can often be found to have the curtains all shut
He also helps her to get up from the sofa, and move around the house etc - getting things for her.

We do send him to a weekly club afterschool, to try and give him a bit of normality - but he really needs more than that... and transporting him to and from can be a nightmare!

When I spoke to social services, they did say that they can support a disabled adult, and they can support a disabled child... but they can't support a disabled parent!! seems madness to me!
It would help an awful lot if there was a way we could get help with the cost of transportation, or with the childcare costs
It would also be great if we could get help with daycare for my daughter (7 months) - who currently stays home with mummy... but its clear that as she gets older and needs more stimulation, my wife will really struggle to keep up with a toddler...

Its all money... and although I work 9-5:30, and bring home a reasonable wage, it takes away all our ability to do things as a family as we spend £240 a month on housekeeping, or childcare which we might otherwise spend on doing things with the kids..
Also, following on from my intro post - theres only so much I can do as hours are limited and I get exhausted... so weekends are often written off...

I did hear something about how kids who are classed as young carers can get grants to go on holiday or to have breaks - does anyone know anything about this or how I could find out more?
As a Carer, you are entitled to a Carers Assesment,without your caree having to be present.Questions within the assessment would take into account your concerns for your son.
Have you taken your son to the GP to ask for support and to ensure that your son does not actually have any real pain?(My children would use my husband's walking stick when they were little, and do a good imitation of his limp too).It may be your son is letting you know that he needs more attention,especially with a very young baby sister.
Ask at your local Barnados whethere there are any young Carers groups around.Even if they do not run the groups, they will know where you can ask.There may be a weekly youth club or play club for younger children.
Could you afford to pay the childminder to look after your daughter for a few hours a week,so that your son could have one to one time with his Mummy?Or perhaps grandparents could help, if that is an option. Do the Government have childcare vouchers, to help you pay for some childcare?
It is very difficult, and I was in a similiar situation, (different disabilities though),and eventually had to give up work, it was the only way that we could cope. Not certain that would be a viable option now, as benefits are so uncertain.
Good luck,I hope you manage to get some help.
[quote]I think you actually have to consider getting help in before you think you need it]

That is the best advice I hav heard for some time, so true.
Many people keep putting off the inevitable, on the basis that they are just about coping, and things might get better. Fine, maybe they will, but what if they dont? Its a bit like not writing a will, many people never get round to it and leave a horrible mess behind; but sooner or later everyone will need one, so whats wrong with today?