Hi! This is my first post. I’m the adult daughter of an MS sufferer, my mum has had MS for more than 25 years and for the majority of which was relapsing remitting. She’s taken a turn for the worst within the past two years and has been diagnosed secondary regressive (I think, my terminology may not be spot on). My dad is her primary carer and I help as much as I can whilst also having a family of my own. My dad has just taken on a new job and I would like to help out more but am finding the sudden changes in my mum quite upsetting. She now needs help with a lot more things than she used to but is finding it difficult to ask for the help and I think she feels like she’s being a burden. Obviously I just want to help her so I don’t mind doing anything she asks at all! Anyway I’m rambling. Is there anything I can do to help ease both of our discomforts with these changes in her wellbeing? Is there any information online anyone can point me to to understand more about the new diagnosis and what I can do to help? Thank you in advance 
hi natalie
secondary progressive is just relapsing remitting that has got worse to the point where you don’t have relapses.
so basically it is still your mum but with a different label.
there is a system called direct payments which enables the person with ms to employ carers as needed.
if you want more info, post on everyday living asking for advice re direct payments.
it will help your mum not to feel like a burden and will help you and your dad with the load.
the ms society do booklets on the different types of ms which are free.
also you could ring the ms helpline - number is at the top of this page.
carole x
As a mum myself, I can only think it isn’t so much your Mum doesn’t want/like to ask for help, it may well be that she’s embarrassed to ask. It probably isn’t even about feeling she’s a burden. If it’s help with personal or intimate things she’s needing, it might be easier to get help in from outside the family. Someone who is impersonal? Maybe have a chat with her and ask? I know you don’t mind doing anything to help, but she might. x
I find it so difficult to let my husband help with the personal thinks. For instance, last week I ust couldn’t get out of my jumper! I just could not lift my arms above my head and manoeuvre them out of my sleeves at the same time. He had to do it for me, and yesterday I couldn’t feel my feet. They were numb and freezing cold and I simply couldn’t get my socks on them. He was doing this for me as the tears rolled down my cheeks and nose! I dread the day anything more “delicate” like washing/toilet help ever arrives. I would be so aware of the Husband/Lover and Care Giver boundary being crossed…
I hope you follow my ramblings now!
Hi, I have personal experience of going from a regular wife to a patient!
My disability began some 17 years ago. I was a fiercely independent, feisty woman, who held a senior position at work, ran a house, cared for a dog, brought up 2 daughters and my hubby worked long hours, so I was pretty used to running the show!!!
Oh and I ran some Weight Watcher classes to boot, having lost 7 stone!!!
Fast forward to now… I am 64 this weekend and I have 4 carers! One of which is my hubby of 45 years!
I need help with toiletting, showering, dressing, getting up/putting to bed, going out…but I can tell you this…I am STILL me! I can laugh, sing, enjoy films, go on holiday, sew, hug my grandchildren and welcome visitors to our home.
If I were to return to the days when I first needed help, I would not listen to my hubby’s carping on about it being his job and his alone, to look after me. No, it should’ve been my decision as to who does my personal care.
It did cause a rift and I wish I hadn’t let that happen for 11 years, before putting my foot down and ringing Social Services!
Direct Payments pays for 3 of my carers and I’ve enjoyed the benefit of this service for 5 years.
Think about it for your dear mum.
Pollx
Thanks for the input Poll. I needed to read this. I have said in the past, I don’t feel like I’m me anymore. But surely I’m wrong? I must mentally list all the things I can still do, still am. Jeez, I’ve only been diagnosed with this bloody disease eighteen months!
(Picking up my sword to fight again.) x