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Caring for my mam who has ms

I don’t really know where to start with this as I haven’t really spoke to any one about how I fell. Firstly my mam got diagnosed with Primary progressive ms in 2008. I started to be her carer from 2009 when her walking got bad. From 2009 to now she’s in electric wheelchair, 24/7 until she goes to bed. With me being her carer I do everything for her, like showering, taking her shopping and etc. She’s lost complete use in her legs so she has to be ceiling hosted to the toilet (sorry for that info). Why I’m on here for is basically I want to talk to people who are going or have went through a family member or who they cared for having the same ms as my mam. I want to talk to people, I don’t want to bring this up with family as I don’t want them to worry about me. I’m 28 and got a 7 year old daughter. Just looking for guidance/ advice or a chat about anyone who have or been through what I’m going through. As you now primary progressive ms has no cure at all. My mams next stage is her arms to stop working, she’s got some movement but not much. So please if there is anyone on here what would like chat with me, give me a bit of help or explain what they have been through I would appreciate that so much. If anyone has read this and wants to know

more about my story feel free to talk. X Rachel x

Hi Rachel,

I think your mam is very lucky to have a daughter like you. There are a lot of people who don’t have a family member as loving and giving as you obviously are.

I have PPMS but I’m not as disabled as your mam is. I just wanted to let you now that I’m only the first of some people who will want to reply to you.

It’s a lonely business being a carer and not everyone wants to hear about it. It’s a very good idea for you to ask if there is anyone here who would like to share your experience. I’m sure that you’ll get to make some friends quite soon.

And don’t worry about talking about toilet issues. We are all very upfront about the reality of MS and can be very direct and plain speaking. I promise we won’t be put off.

Best wishes,

Anthony

Hi Rachel. Welcome aboard. Pull up a chair. Like Anthony, I just wanted to reply to you. My husband is my carer. I was diagnosed with ppms 3 years ago. In that space of time my mobility is almost zero. I consider myself lucky I can just about drag myself around indoors with a walker. Electric wheelchair for outdoors. The thought of toilet issues and hoists as a possibility in the future terrifies me. You’re a young person who still has a life of your own, and need to be there for your daughter. As kind and well meaning as you’re trying to be by not sharing with the rest of the family, I really think you ought to. There may come a time when you need help, or a break. People are assuming you’re coping marvelous and have no idea what you’re doing. Do share a little at a time with family. Please. For your sake and that of your daughter xx

Hi Rachel,

I agree with everything Poppy has said,don’t shy away from talking about it with other family members there is certainly no guarantee that anyone will offer help but it may be they may currently think you are coping fine and don’t want to " tread on your toes" as you jumped in first and seem to be happy doing it all,possibly worrying about insulting you by suggesting you need help!

My wife was a carer for her daughter who has CP and has been none weight baring since birth(now 23) its bloody hard physically and mentally particularly in the long term.I would say her other kids probably missed out on a fair bit that their mates were doing too for various reasons linked to this and you should probably be mindful of that with your daughter

Its my wife who now has Ms and she can’t do the hoisting or personal care for her daughter now so we have carers in 2 or 3 times a day now.(we already had them in several times a week since shes been 18 and my wife started working again as being stuck at home caring effected her mental health and she needed to change things)

My wife hasn’t reached the level of disability where i consider myself a carer but i have to sort her pills out into dosset boxes,prompt her to reorder,remind her to take pills,occasionally pick her up off floor,help her to get in and out of shower and stand by to hold her up and drag her to chair afterwards,Do most of housework(her son does most cooking),take her shopping with her scooter or do the shopping myself,she has just started her dmd so i sometimes need to help her with or do the injections for her.Even this little bit was a struggle at first and was tiring me out and i was struggling working but seem to cope better now we have got more used to it.Even though i am not doing all that much yet just the mental side of thinking about Ms 24/7(before her diagnosis,we have accepted it and got our heads round it now!) was stressing me out and i think its important you still make time for yourself to do your things for me its windsurfing or kayaking and needs to be long enough to forget and relax a bit(not easy)

I desperately hope she doesn’t have any further relapses and get much worse or if she does not for 15 years or so when i might just about be able to retire and have more time to look after her!

All the Best

Ollie