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Noob from Northern Ireland - Carers UK Forum

Noob from Northern Ireland

Tell us a bit about yourself here.
Hi all,

I'm Brian. I'm not quite sure what to expect or anything from this forum but I've sort of been pointed this direction a few times and thought I may as well join.

I am currently a full time carer for my wife and I am a bit of a house husband and father to our four kids. I came out of work 2 years ago to assume this roll and I guess I'm still having difficulty in accepting this new role in my life.

My wife suffers from Emotionally Unstable Personality Disorder and Fibromyalgia, both of which are tied together but present different degrees of difficulties and challenges.

We have 2 boys, a 9yr old and 5yr old and twin girls who are 3yrs old.

As I say I'm not sure what to expect from here but I guess I'm trying to take that tentative first step
Hello Brian and welcome
You do have alot on your plate! My circumstances are different to yours. However someone will be along shortly I'm certain to offer guidance. The forum is a very supportive friendly place. You can vent and be as emotional as you need to be.
Hello Brian and welcome to the forum :)

As Pet says we're a friendly bunch and between us have a wealth of experience of caring - everything from toddlers to elderly parents ! Please have a look around the various sections and join in wherever you like - or if you have a specific question perhaps start a new topic of your own - it's likely that one of us will have/had a similar experience/problem and maybe can offer some support.

We also have an excellent Adviceline which can be contacted by phone or email and they can give advice on all matters to caring and the minefield that is the benefits system. If you go to the "Help and Advice" tab in the red banner you'll find lots of very useful information.
Hi Brian, welcome to the forum. I have a son with severe learning difficulties, who lives alone with support, comes home at weekends, so just a part time carer now. However, at one stage I had all four elderly parents entitled to highest DLA, living nearby. Sadly, my husband passed away soon after his father, I shall always believe that the pressure he felt was largely responsible for a massive heart attack, which killed him as he slept.

When you are a full time carer, like yourself, it's tough, especially when young children are involved too. Has your wife had a Needs Assessment, and you a Carers Assessment, from Social Services? Have you checked that you are both receiving all the benefits you are entitled to, especially PIP for your wife? My best tip is to streamline the house as much as possible. A dishwasher and a washing machine and tumble dryer, or a washer/dryer all in one, save huge amounts of time and effort. My children were responsible for the dishwasher from a young age.
Hi and welcome! Yes, you've definitely got a lot on your plate.

How to 'manage' it best?

First off, how does your wife's condition(s) affect everyday life? What can she do, what can't she? As in, how much of what a wife/mum 'usually' does, can't she do (assuming, that is, that if she weren't affected, she'd be a full time housewife/housemum, while you went out to work, at least until the two twins have started school to free up some time - potentially! - for part time work for her maybe)

ie, what is the 'deficit' that your wife's illness imposes on the family unit (ie, what is she 'not' doing that otherwise she would do)

Then, secondly, how much 'requirement' does her condition(s) place on you/the family as well as her not being able to do things she would otherwise be doing?

The way I see it, when there is family, then if one of the parents is ill/disabled, then there is a 'double whammy effect' so to speak - there is what the parent can't do, and then there is what has to be done for them because of their condition.

Do you think that 'total double whammpy' splits evenly into the 'what my wife can't do by way of looking after the house/children' and 'what I have to do for my wife - not the children/house - because of her condition'. Or do you think one of the whammies is larger than the other?

The reason I'm asking this is because that may help you decide where to focus any 'help availalble'. Ie, if say, the fact that YOU have to do all the housework/laundry/cooking/shopping etc, is 'more burdensome' than any care your wife needs individually, then that is where to focus. Either by getting in outside help (eg, a cleaner) or by cutting to the bone all the work entailed - eg, don't go shopping, get it delivered, etc etc. (Of course, this is something you may well be doing anyway!). Conversely, if 'caring for my wife' is the real 'time-consumer/energy consumer' then getting in outside help for that might be better.

Overall, is your wife accepting any treatment for either/both her conditions (that said, I know that FM is damn hard, if not impossible, to treat, let alone successfully!). Is she getting any counselling for her mental illness, is she on any mood-stabilising pharma, etc etc. How well do you think she is managing her condition, and what more could be done? (The worst case scenario, of course, is one that affects many with MH of all kinds - a resistance to accepting treatment! I do hope that isn't the case with your wife.)

Hoping that you may be able to start seeing daylight, and getting the whole family to 'a better place' - and if not, then at least using this forum in a way that's familiar to all of us - ie, as a place to 'vent'!!

Kind regards in a worrying and stressful situation, Jenny
Thanks for the welcome folks. I haven't had a carers assessment and I'm not entirely sure my wife has had a needs assessment,something I'll have to look into.

Allegedly we are getting all the benefits we are entitled too however neither our local C.A.B nor the Jobs & Benefits office appear to be too helpful in this respect as they don't seem receptive to the idea of checking what we are getting and seeing what we're entitled too.
In that case, ring/email the Carers UK helpline. They made me £50 a week better off, some years ago, so I like to pass on the information. I'm not much good at links, but I know someone else will put one on for you. If you look at the top of the page there are a series of tabs. Click where it says "Help and Support" and you'll find masses of information.
Hi Jenny, sorry I had that reply half typed earlier and didn't click submit, then when I did I hadn't realised you had replied.

My wife's requirements are difficult to assess properly. As you said the Fibromyalgia is hard to diagnose and treat as there are no medicines that help everyone.

My wife has tried quite a few with varying levels of success and consequently side effects, which in most cases were as bad, if not worse than the FM itself.

The FM affects her in different ways, the most common effects are back pain, severe pins and needles in her hands, sometimes flu like symptoms and tiredness.

The mental health problem is the hardest as she can go into severe depression over the dare I say it "silliest of things".

I mainly came out of work not just to care for her but to take the lead role in looking after the children.

I "cook" at least two meals a day (by cook I mean I follow instructions on frozen foods), I do the school runs, most of the homeworks, I help out with the laundry.

Some days she can do nearly everything, but usually ends up overdoing it and ends up in a bad "fibro flair".

Her mental illness has seen her end up in a local mental health hospital twice in two years, but we all seem to find that it makes her worse being in.
Hello Brian and welcome to the group from a fellow-Northern Ireland member.

You are very courageous to have taken on the role of house husband and carer for your wife. I have three adult children on the autistic spectrum, so my experiences are different to yours, but I would strongly advise that you contact Carers NI as the situation with regard to resources and benefits differs slightly to that in mainland UK. I would also agree that you encourage your children to help out with small jobs. No matter how small a job or responsibility you give them, it helps you and them.

Keep coming in here, to the group, and let us know about your ups and your downs, but especially if you're able to get those assessments organised.

Gilli
Funny you Mention downs! I myself suffer with depression and anxiety and at the moment things aren't great!