New to this so hi everyone. After years of health problems, my wife has now been diagnosed with primary progressive ms and is really struggling with coming to terms with it. We’ve known something was wrong for a long time but after years of test after test and wrong diagnoses, it took her ms flaring up and her ending up in hospital to finally get the ball rolling in the right direction. She has gone from working full time and being the life and soul of everywhere we went to struggling to walk and barely leaving our bedroom in short order. I want to help, but feel so powerless. She has always been so independent and confidant and it’s heartbreaking to see her this way at only 38. If anyone can offer any advice on the best way to support her I would be very grateful.
Hi there, I’m new to this forum as well. My husband was diagnosed about three years ago. Thankfully still at the early stages. I’m glad you finally have the diagnosis. For my husband (and me) the biggest learn was not to fight through it. It was for him to listen to his body, recognise the warning signs and just stop, lie down and sleep. If he’s tired, he will say he needs to lie down for half an hour, it is generally 4-5hrs later he wakes up. It helps though.
I’m only an observer but I would say the best way you can help your wife is to look after day to day stuff to an extent where she is ok (without any guilt on her side of taking her foot off the pedal) so that she can fully rest,
By the sounds of it you are doing this already, it’s hard, but it does pay off.
wishing you all the best x
Mmarty,
The advice above is good. My wife supports me brilliantly, but sometimes I am so stubborn because I do not want to need the help. So my advice to you would be to accept that how your wife is feeling can be dynamic, so what helped yesterday might feel annoying today. You will need to be adaptable. Do not forget that you are also suffering from the effects of MS and you are allowed to be angry or kind to yourself when appropriate. Try to stop your wife wasting valuable energy by being angry.
I wish you both all the very best
Mick
Thank you both for taking the time to reply. It is good to know we are not the only ones in this position. I have struggled trying to get her to rest when she needs it as at first she was determined not to lie down to this. However as her symptoms have progressed she has become more withdrawn. I have been trying to do most things around the house when she’s resting so as not to make her feel that I am taking over from her. I really want to do things without making her feel bad but I have to admit it is tough. I work full time and we have three kids so it can be pretty full on, especially on her worst days. I’m not complaining, she’d have done it for me, but it can be overwhelming.
Hello there.
Your story sounds very similar to mine, except that I am the disabled one and mY hubby looks after me.
I spent several years having tests after tests, being wrongly diagnosed, and bouncing round 16 different neurologists!
I was wrongly diagnosed with PPMS. Therefore i did a lot of research on it and ended up here., where I was made very welcome a d asked not to leave. I have HSP, a similar condition to MS.
Having been on the receiving end of care, please can I respectfully ask you to consider taking on outside help?
I say this because my hubby took on all my care, plus household jobs by himself. It took a toll on him and our relationship.
After 11 years of doing this, he finally agreed that he needed help, so I applied to Social Services for an assessment and we get Direct Payments to pay for carers.
They have made such a difference to our lives and we wish we had done it earlier.
My very best wishes to you and your’s.
Regards, Pollyx
If you would like to know any more about Direct Payments, please do ask me.
Hi Polly. We’ve had direct payments mentioned to us and if I’m honest I know next to nothing about them. It is definitely something we would consider. She’s just had her pip assessment on Monday there so we’re at a bit of a standstill until that is resolved. I can understand what was going through your husband’s head entirely and I hope that things are easier for you both now. Thank you, I would appreciate info on using direct payments for carers.
Hello,
I was diagnosed with PPMS six years ago. There are a lot of things you’ll have to adapt, especially your approach to life.
You’ve already taken the first step in contacting this site. I have never witnessed such selfless compassion from any group of individuals in my life. The scope of experience you can draw upon is simply enormous. It makes me proud to a member of this Forum.
There’ll be others after me with their thoughts. But for the time being, here’s my contribution. If you have a MS specialist nurse, listen to his/her professional experience. They are a godsend for many of us. While your at it, if your GP doesn’t “get” what you need then get another one who does.
One things for certain, you have each other and now you’ve got Us as well.
See you,
Anthony
Hi again. Only too glad to be able to help if I can.
First thing to do is to ring Social Services and ask for an assessment for Direct Payments. There is usually quite a long waiting list. Then a Social worker will come, by appointment, and ask all about your wife’s needs. Personal care is priority ie getting up, toileting, showering, dressing. Then getting out of the house and going to activities etc swimming, craft clubs, and maybe shopping trips.
All the answers you give are typed into a computer and they generate points, as in a monetary value. Then this info is looked at and a set amount of money is then converted into hours.
I do hope your wife will consider this kind of help. It gives you peace of mind that your wife is in safe hands and enjoys a better life than struggling along alone, or needing you to be with her all the time.
Once an OK is given that you qualify for DPs, a plan manager will come out and discuss how your plan will work.
You do have to be means tested, to see if you can afford to contribute.
I also receive despite funding, which lets my carers to take me on short breaks.
All this allows my hubby to get a break from caring. We also have 2 sleepovers a week, so my hubby can sleep upstairs in our spare room, knowing he won’t have a disturbed night , as does happen with me needing help.
I chose my own carers a d it has worked extremely well. But you can discuss the appointment of carers with your plan manager.
If you decide to go ahead with everything, each month a set amount of money will go into a separate bank account in your wife’s name and you pay your carers out of it.
There, it is quite daunting at first, but soon falls in to place.
I recommend the system when we need help to care for needs.
Pollx
Thank you so much. This sounds like it may be a good fit for us. We a will need to have a discussion about what’s best but I like the sound of this. I don’t want to push it in case she doesn’t get the pip decision she deserves and ends up disappointed.
Thank you. I have to agree about this community, I have learned so much and received so much advice and support in just a few days it is staggering. I hope once things begin to settle we will be able to offer similar support to others in our current position. And yes, the ms nurse has been an absolute godsend. Don’t know how we’d have got this far without her.