Hi - my husband was diagnosed with ppms 4 years ago and thankfully his progression has been relatively slow. However he is now becoming more and more exhausted, increasingly frustrated, balance and mobility deteriorating and needing more assistance with his everyday care needs. I’m his carer with one dependent child at home and working part time. By doing as much as I possibly can for him at home he has managed to remain in work - up until now ! He knows that work is part of the problem - exacerbating his fatigue, and making him prone to picking up continual virus’s leaving him so tired his quality of life at home is becoming more and more compromised. His GP has said he will sign him off sick which if it becomes long term, will ultimately lead him to being dismissed on grounds of ill health. I’ve looked into all the options available to him - it’s possible that he will be offered a different part time role that could work. We are very fortunate to have a private insurance policy that will kick in if he’s off sick for more than 6 months. I have put so much energy into planning for the future - he was awarded the lower PIP award and we have used this money to put in a wet room which makes life so much easier. I’ve researched other benefits he could be entitled should he end up not being able to work at all and I’m planning to sort out an Occupational Therapist visit to see what other adaptations can be done to our home e.g. Door widening. On a practical level I feel I have all bases covered. However on an emotional level I am really struggling. I lost my 2 closest sisters to breast cancer just over a year ago and our eldest daughter who has an episodic neurological condition (since the age of 7) needs my support when she is ill. This year my son had a breakdown due to the culmination of events so throughout the summer I cared for him. I’m seeing my GP later on today as I feel completely drained myself and finding it hard to find the strength to keep going. My husband is such a positive man it breaks my heart to see him struggling with such simple things and I feel guilty feeling so low in myself when it is him that has this cruel condition. All I want is to be able to hold everything together for him and our children so any words of encouragement from other carers would be greatly appreciated.
Kittie Kat,
As someone with MS I tend to think that the condition is as cruel to carers as it is to those of us with this nasty illness. It breaks my heart to see how much my illness impacts on my amazing wife. I would hope that I could be as strong as her if the positions were reversed.
Please do not feel guilty about feeling low. All of us have capacity to absorb a certain amount difficulties and or grief. It is not unreasonable to reach a limit.
I would suggest letting off steam (like coming here and sharing) and you need to be kind to yourself too. I reckon that your husband would be happy for you to treat yourself (A coffee or cake with a friend etc) My wife loves getting her nails done once in a while to have some “non MS care” time.
I wish you all the best and hope that things dont seem so tough very soon.
Mick
Hi,
I am so impressed by what you have said. You do seem to have all the bases covered; including looking after yourself. I’m sure that you will explain to your GP your situation, as concisely as you have done here, and hope he’ll give you the necessary help you need.
Over the last few years you have had layer after layer of stress building up and I’m not surprised that you’re feeling fraught. But you do have one great asset and that is that you can distinguish the difference between all the layers and by articulating them are able to give each one the priority it deserves.
By the way, I’m not a carer, I’m the one being cared for. I have PPMS and am much at the same stage as your husband. My wife does a terrific job and it’s her single minded focus that helps me to help her. Our relationship is much more equal than it’s ever been. We have a life together of mutual support and love.
Perhaps, if you were to show a little more vulnerability and less bravado to your family, then you might find that they, in their turn, can be more supportive of you.
Best wishes,
Anthony
Thank you both so much for your lovely comments. It’s currently very hard for my husband to accept his condition and the inevitable new roles we both have to accept but I’m sure with the right support we will get there. I’m realising the importance of looking after myself so that I can continue to be the wife he deserves and the carer he needs. My GP was very supportive and I have decided to get some personal counselling to help with this. I’m sure being able to let off steam here from time to time will also help whilst being able to keep our problems in perspective. You both seem so well adjusted to your lives and I will draw inspiration from you.
Hi Kittie,
Your welcome. You’ll find loads of people on this forum that will have personal experience of anything you have to go through. All of them are willing and able to give you their perspective. All you have to do is ask.
We’re open all day, every day (including weekends & bank holidays).
Regards,
Anthony
Oh Kittie, you brave little lass…shouldering all this stuff, which would break even the strongest of people!
And there’s also the terrible double grief you are nursing for your sisters. Grief in bereavement takes so much dealing with, without all the worry about your hubby and children. I’m amazed you’re still in one piece lovey.
I know you want to do the very best you can for everyone, but do you think it would be a good idea to think about getting some help in for your hubby in the form of a carer?
My hubby was my sole carer for 11 years and it took its toll, as he has rheumatoid arthritis. I had to nag and nag until he finally agreed we needed help.
That was 5 years ago and we never want to go back to before I got carers in.
I pay for them with Direct Payments. If you’d like to know more please ask.
Pollx
How are you?
pollx
Hi Kittie Kat, sorry to hear about your troubles. Regarding your PIP situation, if there has been a change in your husband’s condition, you should let the DWP know. This could lead to a re-assessment. I appreciate that this is stressful but it is worth doing. Also, you should consider getting a benefits check via Welfare Rights or CAB whichever is available in your area. Regarding your husband’s employment, he is covered by the Disability Discrimination Act. Contact his employers, if he is in a union then you could ask for support. They should be able to put in place reasonable adjustments to support his employment. This is a legal requirement. I would suggest getting in touch with your MS nurse and asking for a referral to the Neuro Rehabilitation team in your local NHS area.
Good luck
Hi
Sorry for not replying earlier - things are still ticking over and my husband is currently signed off sick. He saw his ms neurologist this week who has tweaked his meds and suggested he asks for reduced hours at work - this will be difficult in his current role so the next step is to ask for some reasonable adjustments and see where this goes. As for me - I am still struggling with depression but getting some counselling to help and I do have some lovely, understanding friends.
I’m the sort of person that needs to have a plan so all this uncertainty throws me into turmoil !! On the upside we have booked to go away for a few days with another couple in May and that is definitely something to look forward too 
i hope all is as well as it can be with you xx
Hi and thanks for your advice. Since posting my husband has been signed off work and after seeing his ms neurologist this week he is planning to ask for some more reasonable adjustments to be made by reducing his hours at work. This could prove to be difficult in his current role so it will depend if there are any alternative positions. I will also look into having his PIP reassessed and we are also going to investigate whether his pension has any disability clauses that could make retiring early an option. He has also contacted his insurers who have said they would consider a claim based on him having to reduce his hours and pay so that’s something positive to work on
Caro
hi kittie kat
i haven’t replied before but have been following this post.
he can ask for a pension illustration from his pension provider which lays out how much is in the pot.
his firm’s occupational health dept should be involved.
they will be if he is off sick for 6 months.
these are the people who will get the ball rolling if he wants to go down the ill-health retirement route.
i did this myself.
6 months off sick on full pay, followed by 6 months on half pay and then retirement!
weigh it all up.
your pension is based on your last salary which has implications for reducing his hours.
good luck to you both
carole x