MS Society UK | Forum

When to become full-time Carer?

New to these forums, looking for advice from other Partners about cutting down hours / giving up work and anything I should consider. My Partner has recently been diagnosed with PPMS following a year of significant decline in mobility, cognitive and many other issues, some of which have gone on for a lot longer. I am lucky to be currently working part-time from home and we have school age children. I am either working, with kids, doing household chores or fetching and carrying for and helping my Partner. I’m considering cutting my hours or giving up work to care for my Partner. I think this would be good to take some pressure off me, and allow some time when kids are at school to dedicate to my Partner and their needs. Maybe allow us to get out of the house without having to worry about the kids. Financially we would be somewhat worse off I believe. So maybe I should I wait until my Partner potentially needs more help and my working is impossible, at which point no doubt getting out the house is even harder? Anyone been through this and have any tips? Thanks

Hi, I’m in the same boat and don’t know where to turn either. My husband has PPMS, diagnosed 5 years ago and this year he has gone worse. He needs a lot more help, he’s struggling to get dressed and his cognitive issues are much worse. I feel stressed out most of the time, I have gone down to 4 days a week, losing £200 a month in wages and cannot really afford to give up work completely. Because we have a mortgage and will have for another 5 years. I am just taking it day by day at the moment but Universal Credit will not give you enough to live on. I just wish we could speak to somebody who can tell me exactly what we would get it would help. My husband gets the PIP but nothing else. We have carers for an hour a day 4 days a week at the moment, I don’t know how long this is going to last! On another note, does anyone know if you can get help with dental costs, just had to pay £460 today for a few fillings and an x-ray, it seems a lot when he’s not working. Any advice would be welcome, thanks.

Hi, sorry to hear all you are going through. It is such a dilemma, and so hard to know what to do for the best. Hoping someone who has given up work may be able to offer some advice.

With regards to working out benefits if you haven’t already tried it this website may help give an idea:

With regards to dental treatment, that does seem a lot if it’s NHS treatment as I thought costs were fixed. You could try this link to see if it matches what you were charged:

With regards to getting help with dental costs a problem when one Partner works and the other is unable to as help you get is based on household income I believe. You could check eligibility here:

Hi debbie, I was going to suggest it to you, but see you already have a carer coming in.

Re dental costs…get a form HC1…send it off and you may get some help towards these.

I am cared for by my hubby and 2 great carers, who come in twice a day, they take me out and sleepover 2 nights a week.

I pay £40 a week towards the cost.
Boudsx

Hi, have you thought about having a care assessment from Social Services? Your partner is probably entitled to care.

If you think giving up work altogether or having carers in would be better, do a pros and cons list for each and see which could be best.

I have 30 hours, plus 2 waking nights per week via direct payments.
Hubby does the rest of it.
Boudsx

Hi Bouds
Thanks for the response, I’m still not sure what to do, I don’t think I can afford to give up work yet not until the mortgage is paid off. Not in the best of moods today, I’ve come home from work hubby’s still in his PJ’s, the carer has been at 2pm, don’t know exactly to do what only to make him a cuppa. I know we’re not paying at the minute, we get an hour a day 4 days a week, we have one carer who is great, he’ll keep the hours in and take him to football on a Saturday for a couple of hours. I feel he needs more help, obviously when I’m home I help him shower and dress but lately he’s not been getting dressed, he’s finding it difficult as he’s so stiff. We have completed the forms for direct payments but still waiting to hear, I know there are a shortage of carers here in this area. Can’t even get the GP to call back. He has double vision also which doesn’t help with his balance etc. He’s not getting any treatment for his MS as he was refused Ocrevus, we feel like he’s been left to it. Sorry for the rant and thank you once again for replying. Take care x

RANT AWAY.

IS HE PPMS? I belong to a forum for PPMS most of us dont have really bad cognitive issues as less lesions seen on the brain allegededly with PPMS. Mine has always be optic, and spinal with slow progressive mobility which is kind of taking off now. But i can still do things and help myself. I have too i cant get carers at the moment and to be honest the ones i have had have been a bit rough lol. I would rather go unwashed and wait for my daughter to help me.

So many with PPMS have been misdiagnosed and should be SPMS. This then includes worse deterioration in cognitive etc IMHO only what I was told by my neuro.

I have never had a break from it since it started.

It truthfully sounds to me as though your hubby has just given up. Do you not have family who could give you both a rest? have you spoken to his neurologist and asked if he can be referred for respite care so you can have a rest from him and vice versa?

Has your husband got an electric wheelchair so he can get around the house? there are grants available to adapt your home, and also if you have to widen doors to accomodate I believe you can claim a council tax refund.

You are entitled to Occupational therapist who would look at your situtation. they are really good and can provide safety things for you even though you work.

he could also probably use physio too. the neuro told me dont use your legs loose your legs…so everyday no matter how wiped or in pain i am i walk even if its just a bit in the house.

I take it you have seen adult services if you are applying for direct payments. It can take a bit to get that sorted out but will happen.

i got it and my husband was working full time. we had to pay a little bit towards the cost but overall it worked well. sadly when he died i kind of went out of control.

I think your needs are important. How disabled is he? the carer needs to get him dressed. is he so bad he cant use a flask and have a drink?

Trouble is sometimes people just give up. Have you checked with mortgage company to see if you can change it so its easier to deal with? Talk to MS society too they can help.

double vision is a nightmare. I thought my covid test was positive the other day. Clearly could see 2 red lines. Until i put my glasses on lol. Phew what a relief.

O.T. has given me a ton of aids around the house to help me. i do have an electric wheelchair but waiting now to hopefully find an adapted bungalow. I dont really want to use it yet. I use my rollator in the house and sit down on it a lot lol. but my bungalow is tiny so not too bad to get about. does he have stairs to access? Check out O.T. anyway.

I would keep workiing if only for your own sanity. not sure how old the kids are but can they help too?

Hi
Thanks for your advice everyone, he was diagnosed with PPMS but looking back he’s not been right for many years, he was having trouble in holding down a job, even though he’d been in the job for many years, he kept making mistakes all of a sudden and his driving became erratic and he was fired, after this he was diagnosed and the neurologist said he’d most probably had it for many years but gone unnoticed, GP just giving him antidepressants. Hopefully he’ll have an appointment with the MS nurse soon but it’ll probably be a telephone appointment. He’s been not too bad until the last week or so, he has a slight cold, maybe this is making his MS worse. I’ve had covid and his carer has but he never caught it thankfully. We’ve never seen a consultant neurologist only had a telephone appointment to see if he could have treatment but his MRI wasn’t showing any activity so he can’t have it. He can walk around the house and manage the stairs, he does grab walls but we do have grab rails around, he’s just so stiff he’s finding it difficult to dress himself. He was still in his Pj’s today but at least he had put a jumper on and socks! I just think it’s the cognitive issues that are worse, he has to be prompted and his short term memory is bad. Sorry for going on but I just feel we don’t have much support. Unfortunately we never had kids, that didn’t happen, and both his parents have died. He has one brother but we only see him occasionally, but he never takes him out. My family try to help but everyone is working so it’s hard. I’m going to get back in touch with my social worker to see if we can get more help. I don’t feel I’m coping very well at the minute, menopausal!! I suppose I’m grieving for the life we used to have, holidays etc. This is a horrible condition and I really feel for everyone that’s suffering with it. Rant over thanks for listening
Debbiex

maybe something else is going on the danger with diagnosis of MS is everything is down to it.

look sorry i got mixed up yesterday i find this forum confusing you never know who your answering too. My answer got mixed with original poster @Silver1 and yourself.

sometimes black on white everything for me merges.

if he is getting really stiff he could try BACLOFEN. You both need to get out. He is still mobile to a certain extent. If you have the means like wheelchair etc, make a time and go out even to a garden centre and have lunch together. Before my husband died he would take me out in wheelchair as we had a WAV car and i could just drive up the back.

I wear casual in the day, my sloppies lol. it saves changing i think what for i aint going no where lol.

I would get in contact with MS nurse and say his cognitive is worse and stiffness can he please have an appointment with neurologist that is what they are there for.

MS sucks. if he has had a cold (not covid) it can wipe him out. Maybe get him on here so he can chat to other people.

take care. its a heavy burden for you and for him. I now have only myself to deal with. i got myself a kitten to go with my older dog. best thing i did as he makes me get up and about and do things. the trouble is if we dont use it we loose it.

my memory is worse but hey i am 70 and a lot of my friends are just the same lol. xxxx

Hi again.
I also grieve for our lost life…holidays…intimacy…planning…being happy together.

Now I feel like his patient most of the time…feeding…personal care…medical appointments…NEVER anything fun or interesting.

But I do have 2 great carers. They come in twice a day…good for a natter, a laugh, an outing and even short holidays.

Do your hubby’s carers do anything like this?
Boudsx