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Not sure if I fall into the "carer" category, but I'm here. - Carers UK Forum

Not sure if I fall into the "carer" category, but I'm here.

Tell us a bit about yourself here.
Hello.
I have come across this site after spending the last month running myself ragged after my husbands latest relapse from MS.
I'm 34, married ,with two young children, and my husband was diagnosed with relapsing remitting MS in 2007 when my eldest was just six months old. I work, as does my husband, and I kind of feel like we have been burying our heads in the sand for the last six years, pretending that this wasnt really happening, and only really dealing with things as and when they happened.

My husbands symptoms vary, as you can imagine, although he suffers from general pain in his legs and a lot of neuropathic pain, fatigue etc on a daily basis.He has a terrible short term memory, struggles to deal with anything that doesnt fall into his daily routine and is becoming less sociable as time goes on.His latest relapse has come in the form of intermittent dizzy spells, nausea a terrible taste in his mouth and a "popping" sensation behind his eye. As a result he has been unable to drive, sleeps a lot of the time and is pretty miserable.

I guess Im not sure whether this makes me a carer of sorts or not. I do what I do for him because he is my husband and I love him. However, the reality of the situation has hit me full on since this latest relapse and I have had to rely on other people to assist me in getting my children from a to b. Sometimes I feel like a single parent. I do all the cooking (husband quite often just doesnt have the energy to prepare anything for himself so wont eat if im not there) I clean, I take the kids out I handle all the money, bills etc. I plan any outings and keep track of all appointments, medication etc etc so I can remind hubby where he needs to be and when. Sometimes I feel like Im drowning in my to do list.

I dont mean this to be a self pity post. I just feel Im in a bit of limbo as to what constitutes a carer. At the moment my husband is still able to work, and can function on the whole, but the reality is that this may not always be the case. I feel now is the time to start looking into what help, support, and indeed any benefits that may be available to us to allow me to look after my family as best I can.

Any help and advice is very much appreciated. Im greiving for the life my husband and I should have had, and raging at the world right now.
Hello Fluffster
Yes, you are definitely a carer and have come to the right place for support! Welcome to the forum.
Caring tends to creep up on us. We do things initially because of love and/or a sense of duty. Gradually things we do increase. You've already found this!
My late sister had MS and I really wasn't aware of how much my BIL did for her till I witnessed it first hand as her condition developed. I recognise the symptoms you describe and others with more knowledge and experience will be along shortly to offer more advice.
Do have a look around and join in wherever you like. You'll find that many off us pop in for a chit chat at roll call...it's a bit of a virtual coffee shop!
Juggler
x
Hi and welcome and yes you are a carer.
My husband also had MS and I have been where you are now. Don't worry, I'm older than you!
If you haven't already, apply for PIP (it was DLA ) for your husband, then hopefully you will be able to apply for Carers Allowance, depending on the PIP award.
Also see your gp and get referred for an OT assessment for your home and your husband.
Honestly there is help and support out there.
Hi Fluffster and welcome
Yes you are definitely a carer. My hubby doesnt have MS, but has sort of similar things (due to an acquired brain injury) and is able to do quite a lot of things himself - although he cannot work. It took me a long time to realise that I was a carer too. I know what you mean about feeling like a single parent Image
Im not sure whether getting the PIP or ESA is the route to getting carers allowance (or perhaps either) now that all the benefits have changed - it might be worthwhile checking. Do go for PIP, though as I would have thought that he would be eligible. Dont forget to fill in the form as if it were the worse day (not a good one).
Hi Fluffster, welcome to the forum. I tried to be Superwoman and developed a life threatening illness. So my first bit of advice would be to Stop Being Superwoman. Someone has moved your goalposts in life, and you might need to find new goals. Write down your list of jobs for the next few days, then think about what would happen if you didn't do them?! Could you save time if you did them differently? Ironing can be avoided by wearing different fabric clothes, or using a tumble dryer. Washing up can be avoided by using a dishwasher, and the children could easily help load this up. Shop online. Share to school run with someone else. These are just ideas to get you started, some may not apply, they're just examples. Then look at the bigger picture. Could you afford your current home with less money coming in? Is it really suitable for someone with mobility problems? Sometimes it is easier in the long run to plan things in advance, then you have more control. Otherwise you might have to make decisions in haste which can be more difficult. For different reasons, I went through this process a few years ago. I may not be quite the woman I was , but I am still here, with my family around me. More modest goals might mean a happier family life?
Carer. Join the gang! And hang on to your job, that's what keeps many carers sane. Get someone else in to do the laundry, change beds, and mop the floors, if needs must: there is always someone keen to get work, and delegation is the most important quality that any carer can learn. If you are lucky and determined, you might even persuade your local authority to pay you to take staff on though a direct payment: mine does.

PS, your husband can maybe also claim Access to Work for extra support, as well as DLA/PiP , there are many forms of support available but you need solid advice from a local professional (social worker/ advice worker) to help through the maze. Don't rely on phone lines or the internet for advice alone.
Thanks so much to all of you!

I suppose I have felt this way for quite a while if I am honest. We tried filling out an application for DLA several times and I spent many hours agonising over it before going to the advice shop for them to help us as we were told it was the best place. The experience we had there was not pleasant. The guy had double booked himself and obviously thought we werent worth spending much time over as my husband looked fit and well, so he glanced at the screeds of notes I had made, wrote a couple of lines on the form , and told us that if we were refused to come back and hed look at appealing. Didnt really instill us with confidence and at that point I thought that maybe it wasnt worth persuing. And so we have gone on. I think it might be time to look again and have another go (We didnt send the form in the end)
As for dishwashers, tumble driers etc, thats all pretty much in place.(But thanks for helping me think outsdie the box so to speak!) I try to cut down on work for myself where I can, but there always seems to be a hundred other things to do in their place. Even my childrens activities, homework etc take up a lot of time and I feel that Im splitting myself in two.
As for thinking ahead, the house we live in is our forever house. We moved here shortly after his diagnosis, on the basis that it is a spacious bungalow with a loft conversion, which allows us to use the full house for now, but enables us to stay put in the event of my husbands condition reaching the stage of him being unable to get upstairs or of him being in a wheelchair. Only a few adaptation would have to be made in those events with any luck.
With regards to an OT assessment, is that something that gets done this early on? Even when my husband is still functioning reasonably well on the whole? At what point do we look for help of this nature? Its all so confusing and sometimes I feel like a bit of a fraud.My husband isnt very good at communicating a lot of his symptoms and in fact, its only this morning that he let me in on a bit more of whats happening with him!!! I keep trying to tell him that if he doesnt say anything I cant help him. At the same time, it means his GP, neuro etc will know nothing about it either and so there wont be anything in his notes. Sometimes I get the impression that they see him as "ok" in relation to their other MS patients and so often brush off some of his concerns. Even more often, I feel like the interfering wife at his appointments.He finds it hard to explain what he means by things or describe things, and so, I feel I need to speak on his behalf.He is happy with this, but I often feel like I am overstepping the mark. But if I dont speak up for him, then who will?

I could go on and on I think.Its like now the flood gates have opened there is no stopping me. Where to start? I do feel a cleaner is one of the main things on my list, but with that comes cost, and I suppose thats where the advice shop comes in? So much to think on. In amongst all that is the overwhelming sense of guilt. The feeling that I am not the one having to suffer these symptoms, yet Im the one moping and dwelling and getting upset. I sometimes feel like a petulent child. I want to stamp my foot and shout and scream that its just not fair. I have the funny feeling some of you will relate to that. Yet it still doesnt seem right.
Yes, "It's not fair", "Why me?" "What did I ever do to deserve this?", all crop up when I'm tired and frustrated. There are no answers of course. It certainly sounds like you have already thought through lots of things. A carer's assessment from Social Services might give you the opportunity of asking if they could make a financial contribution towards a cleaner, every area is slightly different so what one authority will allow does not ensure that the same will be offered in another. All my LA would offer was further education classes, hardly relevant given my age and academic qualifications.
...Its all so confusing and sometimes I feel like a bit of a fraud.My husband isnt very good at communicating a lot of his symptoms and in fact, its only this morning that he let me in on a bit more of whats happening with him!!! I keep trying to tell him that if he doesnt say anything I cant help him. At the same time, it means his GP, neuro etc will know nothing about it either and so there wont be anything in his notes. Sometimes I get the impression that they see him as "ok" in relation to their other MS patients and so often brush off some of his concerns. Even more often, I feel like the interfering wife at his appointments.He finds it hard to explain what he means by things or describe things, and so, I feel I need to speak on his behalf.He is happy with this, but I often feel like I am overstepping the mark. But if I dont speak up for him, then who will?
Don't worry about how you feel in the way you are handling this. You're doing just fine. Don't be afraid to speak up, never mind what hubby says, tell them what you see. Most carees don't want to see themselves as a burden, and so will play down the severity of their symptoms even to their nearest and dearest. You can tell it like it is, better over stated than under stated.
Even if you do overshoot the mark, (and I don't wish to be too blunt but I'm speaking from experience) it'll just be practice for a later date.

Best wishes to you both, xxx
Hello and welcome fluffster,

You are not overstepping the mark when you speak up for your husband at appointments. It's necessary and a benefit to yourself in the long run . As you quite rightly said, they tend to 'play down' their symptoms. The number of times I've sat in disbelief when my O/H simply answers, 'No problem', 'could be better, but could also be worse' Image. I wonder sometimes is this the same person I live with!!

If you have friends and good relatives nearby your blessed.....so I do hope that is the case. Practical advice is totally brilliant, and their will always be an abundance of knowledge on the practicalities of caring on this site.

Emotionally, the caring can make you, and all the family, feel isolated and that is a lonely old place. That's the part I struggle with. I do hope you have that emotional support when it's needed.

Take care 'carer', you are doing a wonderful job.

I've got the occupational therapist coming this morning, I'll be around until I leave for work at 11 am, so I'll quietly get my two penneth in!!

Keep posting, and if necessary venting.

Much love, Treez xx