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Can anyone offer some fresh ideas please

Hi I am my husband carer and know how hard it is to get help for those who struggle with Secondary progressive M S, my dilemma is always the same. I have posted my worries a few time on care/support forum to no avail. When my hubby was diagnosed with benign m s he was 54 a year later he had a few bad days off his legs, flue symptoms, he was very poorly gp very reluctant to come out, I struggled to get him in and out of bed to toilet M S nurse shut or on answer machine , etc. Anyway doctor came gave him some meds 3 days plus 3 months of new symptoms consultant said he now has secondary progressive. gabapentine prescribed 2 yrs ago he’s now on 900 3x a day. He’s no better on it to me, as secondary progressive says he gets slowly worse each day.

Second to that over the last few months he has episodes of blank, he stares, cannot hear me, has terrible headaches/tooth pain after, looks ill, but he wont let me ring for M S nurse he says it will go away. It does but this last month he seems to have these episodes more. Last year I was so stressed because hubby wont go out because he may need the wheel chair, or he says his eyes are dancing and his co-ordination is poor and stops in nearly all the time. I had a bad breathing episode/throat closed up and I could not shout to get him up/I got my breathing under control and had a harsh voice/seen doctor who complained that I should have rung for ambulance. Explained hubby has M S, (when Steve is in his episode state, nothing and no one exists I could collapse and he would say I was trying to trip him up.) The doctor phoned his M S nurse telling him my worries only for them to ring him and say I had been moaning about him and what was up. (disaster for me not allowed to talk to anyone anybody his state. I some times him a meal and he says I am trying to give him food he hates. Hope someone is getting where I am at, my aunt says some M S patients have tongue problems some numbness which might explain the food issue. He gets agitated with noise, just before and after his episodes he says I am shouting when I am not. I also have disabilities and worry about ways forward. How do I help him, get better medication and keep me safe? Carolxx

Geez, Carole

No wonder you are a bit stressed. Your MS nurse doesn’t sound very helpful and the episode you had with your breathing etc sounds a bit like a panic attack and no wonder.

I am no expert as I am RRMS and my symptoms, although a nuisance to me, are mild compared to so many others. However I would say that you need an assessment from Social Services to sort out what help you are entitled to and which would help to keep you both safe especially when you have disabilities of your own. This situation cannot go on as you have your own health to consider and I cannot believe that neither your GP or MS nurse have suggested this.

If you go onto the ‘What is MS’ section of this site and have a look at the publications I am sure there is one about carers which explains how to go about getting an assessment and some support for someone in your situation.

I am sure someone more knowledgeable than me will come along very soon and offer some good advice too.

Hope you get something sorted soon, hun

Tracey

Hi Carol,

It sounds like you are going through a really tough time. I think you need to be honest with your husband and explain to him that you are finding it difficult to cope with the present situation and that you need more support. At the end of the day, he is just going to have to come to terms with the fact that the situation cannot go on as it is indefinitely, and that he cannot keep brushing things under the carpet. I know that is easier said than done, but sometimes a full and frank conversation can work miracles. Input from the MS nurse, phsio, OT etc could put a few things in place that would make both your lives more comfortable and could even increase his independence in the long run. Counselling for you wouldn’t go a miss either. Don’t be afraid to talk to your own doctor, as this is clearly affecting your own health.

Best of luck, I wish you well.

Boo x

Carole

I’ve had a quick look and I was wrong, the publications are under the Support section right at the bottom (below the Forum section). Here is the link to the one that refers to the Carer’s Assessment (your husband doesn’t have to agree to it). You can also browse through the other publications to see if any others interest you.

http://www.mssociety.org.uk/sites/default/files/Documents/Core%20pubs/Caring%20for%20someone%20with%20MS%200611%20-%20Web.pdf

Tracey

Carol, Not a happy situation for you - and you are one of many. MS still not understood by nurses/gp etc. l have been SPMS for 31yrs. And l was left to just get on with it - which seems to be the case for your hubby. l suffered for years with trigeminal neuralgia - the pain in my face/head/ear was horrendous. GP did not even realise it was a MS symptom. But l was advised and helped by people on this forum to try LDN - and that was 6yrs ago. lt changed my life for the better. NO cure - we all know. But it has helped me feel so much more positive and brighter. Thats because it boosts your endorphins. And the trigeminal neuralgia disappeared. Could be coincidence - l know - but l do think it is the LDN. The pain l was suffering was so bad that l used to say ‘l could shoot myself’. l do take a high dose vitd3 - and magnesium and also vitb12 - which all help with pain/fatigue/energy. Just google them - vitamin d3 deficiency ms and vitamin b12 deficiency ms.

Never seen a MS nurse - l live too far away from the area.

Now you need some care - you sound as if you are down - not surprising - and maybe the stress is causing panic attacks. Vitamin b12 could be helpful to you as well. lmportant, in your situation, that you look after yourself.

Keep in touch - on here - as you will get lots of people who know just what you are going through.

Thank-you everyone for you moral and sign posting info, just to know that support has heped me loads. I have contacted our coucil care in the comunity for care assesment they are comming to look at if we need any support/facilites and so forth. I feel this is a step in the right direction. I am still not sure about speaking to gp or M S nurse just yet. I feel I just need to gather some momentum back if you all get my drift small steps to to get thinks in place.

I was thinking of doing a private and confidential letter to either consultant or doctor, but it I feel it leaves me in a vunerable state, if they ring him on an off day the air and I will go blue. So its some thing for me to think about other than have no where to go thats been the most stressful. carolxxxx

I think you are right, Carol

Small steps at first just to get the ball rolling.

Keep us posted and keep coming on here to let off steam.

Best wishes

Tracey xx

hi carol

you are having a hard old time with your hubby’s ms.

i hope you can get some support in place through your council.

like others have said, look after yourself because if your health fails then who will look after your hubby?

when the dust has settled try your local or nearest ms therapy centre.

these are fantastic places which offer all sorts of therapies by both ms sufferers and carers.

loads of good company of all ages.

maybe your husband will brighten up when he sees what’s available.

hyper-barric oxygen is at my nearest centre. hubby could try this whilst you have a nice aromatherapy massag

carole x

Maybe contact your local carers association too…MrH finds them a valuable source of support ? Xx

Hi, You certainly have a full bag going on there. From a social care point of view your husband is entitled to an assessment, as you are as a carer. I agree with what others a saying that you need a frank discussion with your husband about how you are managing and for him to understand that you need some assistance to help with his care and or support with your own health needs. Your husband needs to agree on accepting support as the social care team cannot do anything against his wishes. I don’t know what part of the country you live in but there are things out there called pendent alarms. This is where a pendent is worn in the house/garden and if you fell for example, I think you used the example of if you collapsed and would be worried that no help would be got for you, someone would come through on the intercom and talk with you about what next was to happen. Going back to the social care assessment it might be worth your while looking at your local authority web pages and see what they have to offer for carers and your husband. Look at things like direct payments. This is where social care pay money to yourselves so that you can employ personal assistants to support you and your husband. The local authority can also arrange care for you if you think that setting up a direct payment is too much to take on at the moment. I think it would be good to look at these things before the assessment so you are used to the terminology they may use, and see how the assessment should be completed, and you think about things that would help you both. I am a social worker by trade and I am happy for you to pm me if you have any questions in relation to the community cafe assessment. Yvette x

Hello Carol. I agree with everything thats been said…you need a carers assessment. I’m a carer for my husband, they give me as much or as little support that I need. I’m reassessed each year, this year there giving me £200…I’m using it to have some beauty therapies…can’t wait. The point I’m making is, carers need to look after themselves. You need to keep yourself healthy both mentally and physically. Its hard being a carer. I’m sorry about what’s happening to you as a family but don’t lose yourself in the caring role…your allowed to be happy. Noreen

New update consultant/secretary oppology came back from hospital, apparently the appointment was a clerical error and when they find the real clinc they will be in touch with a new appointment (strange), Also tried very hard to chat about the dreaded word M S to hubby who went bonkers.

My fault he thinks I am not loving him enough I must have an agenda to slay him, very upsetting day for both of us but he did move out of his day chair and could not settle back in it. Been looking a lot like some one who been told off so hoping the words might have sprug some facts to face.

Still early days been here before trouble with his mind it goes on to reset, will update though.carolx