Just wondered where the best place is to talk through a sort of ‘what if i cant work advice’. This scares me and creates so much stress. It is just me and my daughter - no family. I would like to understand what will likely happen/options etc. Can i stay in my own home, can i get help to get a downstairs shower room. I really need to know these things and i dont know who can help and advise.
Any guidence appreciated
I would say that this is the best place! We have a lot of people who’ve been there, done that. Unfortunately, I’m not in the UK and can’t offer anything practical.
Off the top of my head, I’d suggest asking your MS nurse and contacting your local council first. Learn about the various financial options that will be available and get information about long-term health care. Familiarize yourself with PIP and Blue Badges, if you haven’t already.
Perhaps make a list of your household’s strengths and weaknesses. How old are you and your daughter? Does she need care also? Have you begun using a wheelchair, or are you just thinking way-out-there future needs? Make a list of the pros and cons of your current home. How wide are the doorways? How many sets of stairs?
Welcome to the forum. Are you just recently diagnosed? I can imagine fears for the future must be terrifying when a single parent is told they have MS.
As Norasmum says, try talking to your MS nurse, that is likely to be the best first port of call. If you don’t have an MS nurse, try phoning your neurologists secretary and asking for the contact details for your nurse.
If you have relapsing remitting MS, you should be taking a disease modifying drug (DMD) to ward off as many relapses as possible. Talk to your MS nurse about DMDs if you are RR and not on a DMD. Have a look at https://mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid for more information.
In terms of finance if you are unable to work, the benefits system exists to help. Initially have a look at Sick or disabled people and carers - Citizens Advice You may find that in time to come that you qualify for Personal Independence Payment (PIP) anyway. It’s based on disability needs for mobility and personal care, not on your income.
Equally, your local council (the County, Metropolitan, Unitary or London Borough depending on where you live) will have responsibility for caring for people with care needs. If you find you became disabled and in need of help with personal care, Social Services would be who you’d speak to about help with that.
There are lots of people on this forum who have greater understanding about specific care and financial support systems. If you do find you have need of advice in the future, there are surety be people who can advise you.
Meanwhile try not to worry about what ‘might’ happen in the future. I know it’s difficult when you have sole responsibility for a child, but concentrate on what’s real for you now rather than what ‘may’ happen in the future. Try to keep yourself as fit and healthy as you can and you’ll perhaps find you never reach that stage of needing help.
Thankyou ladies. I do have access to both community and hospital ms nurses i guess i could pick their brains. Given how quick it strikes ( currently sitting with half a hand working) and how much it can potientially affect me/us i dont really want to stick my head in the sand but be realistic about all that. Obviously anything i can plan to help me when i am not well would be a bonus.
Really interested in anything i could do to facilitate a downstairs shower room toilet for instance would be amazing…
My worry is spending the last of my savings on this as my capacity to work has definately dropped ( still working part time) and my reliabilty to do that is becoming a bit unpredictable at the moment.
I see the consultant this week i think they will probably offer me dmd’s now?? Maybe they will work some magic