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Thought I should respond more fully. I spoke to the Head teacher at the school I work at and he has been really supportive about giving a ref for the course and the job. I currently work as a school science technician. The job is for a senior science technician and is the next step in career progression, more responsibility and more pay. I have just heard I have got an interview for the job next Thursday.

The course is something I really want to do for me. Not everyone would like or approve but it is Physician Associate course, my head was very sweet and said it was a job he could see me doing. Although I would find the initial part of the course challenging I would love it. I enjoy studying but it is a job I can see myself doing till I retire. I have spoken to the course leader the worse happens and I can take a year out and come back a year later and rejoin at the same point. Weirdly this was all stated before I said about the situation with my husband. I have taken the decision that I am going to apply. If I am accepted on the course I intend to start September 2015 or defer by a year.

My husband is now in receipt of PIP standard rate for both part. We weren't successful when we asked for a mandatory reconsideration in regards to mobility however we have come to terms with this and will reapply should or when H deteriates. Sadly H's falls are becoming more frequent but I feel in part that is due to the cold and his muscles working even less wells. The PIP helps but even without it we would manage finacially. We are in a fortunate position we were left some money and have been able to pay off our mortgage a number of years ago.

We haven't seen neuro outreach team, but see a Becker's Care Advisor, the community heart failure nurse. We also have far to many hospital appointment however these have calmed down and we wont have as many until H's condition changes. Don't know if or when we will see H's neurologist again, as currently there isn't anything he can do, he was good at helping us get the right person to do a heart transplant assessment. We do however still regularly see H's cardiologist and respiratory consultant at regular intervals.

The hospital OT helped with sorting equipment as did social services. So we have a pillow lifter, Upright chair and footstool (makes getting up from sitting easier and the footstool helps prevent fluid retention in the ankles), perch stool, bottle to wee in and grabber care of OT. Social service have fitted multiple grab rails, provided a specialized step for getting in the shower and raised toilet seat. H's mum has a bathlift but even that wouldn't work for H but as he can get still get into the shower with the special step that side of things is OK. Ultimately we will need a wet room. The items we have make a huge difference to daily life we had them, in the past we had struggled so much. Social services were amazing lovely lady came and sorted things she did advice that eventually we would need to move as house wouldn't be able to be converted. We have stairs between two walls and have a rail on one side so H can use the rail on one side and the wall to get up the stairs. Eventually when H can't use stairs we will need a stair lift as for Becker's stair lifts aren't suitable. We need to see if H is entitled to a personalised care plan. It wasn't something we were ready to face not sure H is ready now to face. In a similar way I wasn't ready and haven't filled out the form about how being carer impacts on myself. I cope with being a carer, but it does come with a personal cost. It doesn't help that H's family do not realise and are in denial of how things have changed etc. We are fortunate we have an amazing network of friends and I am certain they will help if we ask. It is somet

Replies

  • Sorry in the delay responding I've had some medical issues this week x

    I'm really sorry I didn't see this before your interview I hope it went well. It sounds as though you've just about made your mind up, good for you. It's easy to say and harder to do but if H does die more suddenly than you thought you can't beat yourself up about having taken on the course. You have to allow yourself some you time doing something you enjoy or you'll burn out. I have worked in professions alongside carers and if you don't have some space then you'll get yourself into a position where it will effect your ability to cope, which you are obviously doing brilliantly at the minute. So sometimes it's about being there a little less in order to improve things in the long term.

    As for the personalised care plan you need to have a chat with H before you fill it in. If you're worried about how it may effect him seeing you put down in words that caring has an impact on you, you can always use the excuse that is you don't 'confess' to issues they will say you're coping fine. All Social Workers agree it's stupid the way the questions are worded but as it stands if you say that doing everything yourself is fine, the system will say you don't need any help. The PCP can be really useful for your H to get a bit of time to himself too. He can use a carer (which can be a friend/relative etc..) to go swimming, to the pub whatever he fancies. I think sometimes you can think of carers as being there to do tasks like washing the person, but actually it can be about doing things young people do. I think I mentioned it last time but the funding is based upon income, however wages and child benefits and most of PIP is disregarded so you'd probably get a full award.

    I'm sorry you didn't get the enhanced PIP mobility rate they have altered the criteria in the switch from DLA to PIP which meas if he can walk 25 metres with or without an aid he'll only be entitled to the standard rate. Certain charities have been up in arms as 25 metres is nothing and it's left a lot of people housebound, but it's an obvious cost cutting exercise,

    On a final point if when you move or have changes made, you can have your council tax reduced by a band. There are some weird rules I think it's either your H has to be in a wheelchair in the house or a room has had to be converted in purpose to meet your H's need i.e a bedroom turned into a wetroom etc.. It may be worth a look at some stage.

    In the meantime, good luck with your course application and the results of your job interview. Keep me posted

    Have a lovely Christmas xxx

  • Thank you for replying, well I went to the interview and I got the job, however after thinking about it I have turned down the job. It was based on a gut feeling and just knew I shouldn't accept in the end. I am certain I have made the right decision particularly after finding out certain things about the school and the department. Money helps but money isn't everything and I value my sanity more than money. I am about to put in the application for the course, I am certain it is what I want to do and if I don't get on this year there is always next year.

    Hope you have a super Christmas and a happy new year

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