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Julie carer Leicestershire

Hello my name is Julie I haven’t been on site for a wile but need someone to talk to as things are so bad at the moment, husband Wayne is registered blind has osteoporosis in spine & hips also has hearing loss due to his ms,he has epilepsy and has had a lot of seizure recently, and testosterone deficiency having testosterone injections, As his carer and wife I suffer fibromyalgia which causes me nerve problems also.Having money worries both of us battling depression and having 2 daughters aged 11 and 9,hubby was on beta intefron (Avonex) about 3 years but was still getting a lot of side affects so about 2 months ago stopped and switched to tecfidera but he has had had a rapid decline in his health in last month he has no muscle strength in legs and cannot lift feet to walk keeps falling over he messed himself in bed and messed on floor and in wet room,he wets himself so resorted to incontinence pants permanently rather than just when going out.He wants to walk but cannot, its been bad before and couldn’t walk for 1 week but this time its a month and we are starting to wonder if he will ever walk again we have a stair lift and wet room thankfully got it on disabled adaptation grant

Oh Julie, you do have a lot going on and I empathise with you.

Caring is a very hard job. My hubby was my sole carer for 11 years and then I got outside help in and pay for it via Direct Payments. Hubby has rheumatiod arhtritis and it gets pretty bad at times, so although he didnt want me to get anyone in, he saw the light.

So Ive had carers now for going on 6.5 years and its the best thing ever!

Do you think it would be a good idea for you to get some help? If so, and you need to ask me anything about it, please do.

With regard to money worries, have you checked you and hubby have got all the benefits you are entitled to? A call to DWP will sort that.

I wish I could offer more advice. But I send my support.

pollsx

Hello Julie Ann,

You’ve expressed the awfulness of MS and chronic illness not often mentioned in the main stream media.

Some 40,000 Advanced MSers suffer in the way you described. We all need something to look forward to.

I think you need a break.

Perhaps:

  1. a relative could look after the children and your hubby for a week so you could take a holiday. I send my husband off for a week every year. He loves to travel.

  2. your hubby needs his Care Plan updated - could a carer come in a few days a week to give you a break.

  3. your hubby might like to chat to us on this Forum.

And does your hubby have a scooter or powerchair? It makes a big difference - well it has for me.

All the best,

Fay

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Hi Julie Ann, You are having to cope with a lot of problems all at the same time. It’s best to try and split them up and deal with them one at a time, so I’ll only mention one here. I’m sure that others will come along and offer you more advice. Ask your GP for referral to a continence specialist. I did and found ways to control the problems of both incontinences. Regards, Anthony

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Hello Julie

Fay is right that you could probably do with some help. It’s bad enough having fibromyalgia yourself without having children plus a husband with MS.

Does Wayne have an MS nurse who can suggest some help for him and walking? Perhaps he could do with some help from a physiotherapist? And does he have any walking aids? A walker might help. He could have his needs assessed by social service or perhaps more usefully by an occupational therapist. It does seem that Wayne has needs quite apart from MS, if he has osteoporosis and epilepsy in addition to being registered blind.

As he’s just changed drugs to Tecfidera, it may be that he has had a relapse due to stopping one drug and starting another. I wonder why he wasn’t offered Tysabri though, side effects from a drug can be classed as ‘failing’ on a DMD. Has he been having relapses despite being on DMDs? That could be the reason why Tysabri wasn’t on offer, if he’s not had relapses.

But then, Waynes disease progression does seem to be quite marked. I mean this in a different way to becoming progressive. I would have expected that he’s had quite a few relapses to cause damage that has made him doubly incontinent. Has he had an MRI before starting Tecfidera?

I don’t think you should neglect your own needs. It seems that Wayne has such complex needs that you are in danger of wearing yourself right down and ignoring your own. I suspect you should get some help from Social Services to see how you are managing (or struggling to manage) and whether there is more support you could be accessing.

Sue

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Thank you all for your support and advice hubby Wayne is registered with social services and a zimmer frame is a brilliant idea although hubby hates the idea and said its only for use in house,We are so worried as this is longest his legs have been not having any muscle tone,Thank you all for replies so nice to talk to people who understand what we are going through,We think we are getting all benefits ESA in support group PIP high end both elements, carers ,child tax,child benefit that’s the lot but have a mortgage to pay & utilitys and having children uniforms ect its all a worry both of us are not working Wayne due to health and me caring and having own disability,Sadly we have no support from family its heart breaking sometimes I feel so lonely.

Hi Julie, That’s good news that you are getting all the benefits you’re entitled to. Another source of assistance could be the work you did. There are charities associated with trades and professions so it might be worth looking online to see if there is one that applies to either of you. For example, the Civil Service, Post Office, Merchant Navy or Hospitality to name a few. Regards, Anthony

Hi julie ann

Tell Wayne it doesn’t have to be a zimmer frame, it can be a lot more manly than that. If you could afford it, a Topro Walker is a lot more macho. I may be female, but I’m a lot happier with one rather than a girly triwalker or a oap style zimmer. And there are other makes around that are more appropriate and will make him feel more like an adult male.

But having something to lean on is a definite improvement to not being able to move under your own steam at all.

Sue

Definitely comtact social services and tell them you need MORE help than you are getting. sounds like you need extra carers to come in and help. Gently tell hubby it is too much for you alone.

As for the aids, there are definitely options like walkers to assist.

I would also ask for referral to the bowel/bladder specialist. There are things that will help.

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Hi Julie It sounds as if you need some support. Have you considered asking someone directly for some support and specifying what sort of support you want - it may be someone to take you to the pub for a drink once a week, it may be someone to talk to about any stress you feel - make a mental list of your relatives/friends/contacts and work out who may be able to offer support - it may well be someone who has had tough times themselves in the past. Also ask yourself do you give the impression that you are managing well and therefore people don’t think you want support.

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Sounds tough but your circumstances have clearly changed so I would think about asking for a re assessment , if you haven’t had one for a while the care act brought new responsibilities for social care . I can also recommend the bowel bladder clinic in leics hell of a waiting list but really helpful .