Hi Everyone! First of all thanks for taking the time to read this it means a lot and I am very new to this whole topic but I need to start taking some steps to plan what to do in the future.
My Mother has been Diagnosed with MS for about 9 years now, and the effects of it are becoming more of a burden on her than usual. She is someone who will go out of her own way to stress herself so long as it benefits others and doesn’t care about her own wellbeing if she is helping someone.
She truly has a deep care for all of us, but she can’t see how her lifestyle is impacting herself, the amount of stress she puts on her is only making the symptoms worse and she refuses to change as she is VERY stubborn.
As her Son, I have a brother and a sister and I want to start putting some preparations in place to be more ready for when her symptoms become too much for her to do basic tasks herself. Right now she is independent, but even cleaning the house (which she does everyday without fail) really takes it out of her, walking is becoming difficult and her speech is starting to slur on bad days.
Honestly. It’s heartbreaking to watch, but the more I avoid the truth the harder it will be, so please, I am asking for some advice from the people of this community who have been in this position and people who have already gone through this.
What were some of the things you wish you did earlier? What was your plan to get them the best help you could? Did it cost a lot?
I know it’s a broad question, but I have no clue what I am doing here, I barely can accept the fact she is going to require care soon, and I need to start being prepared for my own sanity and her health.
Any advice or stories is GREATLY appreciated. Thank you again for reading and I will try to be available in discussions.
Firstly I’m sorry to hear your Mum has joined this ‘club’ and is beginning to struggle with day to day tasks. Hopefully she will be able to manage with the right support around her for some time to come. I think it is commendable that you are seeking guidance early. A nurse friend of mine gave me a wonderful piece of advice when i was starting to find things difficult, she said ‘Look at doing the improvements BEFORE you actually need them. This will enable you to make a rational decision rather than a panic decision’
Our local Community Neuro Occupational Health team visited us at home a couple of years ago and gave us lots of useful guidance, a stairlift, a cleaner, cutlery suitable for my fumbling hands, grab rails, floorings and wet room suggestions, the list goes on. I didn’t qualify for any funding but did adopt as many of their suggestions as was possible.
Fast forward 2 years to 2026 and we’re now in a bungalow and doing lots of adaptations to ensure I’m able to get around in my wheelchair. We’ve had the community neuro occ health guys and the neurophysio team in again to check that what we’re doing will be ok for any carers I’m likely to need going forward. All of this came from in depth discussions with my neurology team so I can assure you that guidance is out there and there are lots of good people on here who will have way more advice and guidance from years of having MS I’m sure
I wish your Mum and you all the best. Life doesn’t stop… we just do things in a more measured way
Be prepared was my thought. We moved into a retirement village with 101 apartments in the one building with lifts level access throughout. Restaurant, village hall, library, games room, craft room, gym, conservatory, communal gardens, a range of activities. A care team on site (at extra cost) welfare officers. We are living completely independently at the moment and carrying on with our lives outside much as we did before. We managed a nasty UTI earlier in the year which we would not have done in our old house. We have joined in with some activities to get ourselves known and feel ourselves part of a community similar to when we had small children or at school or university. Hopefully we will continue in this way for many years, but we are in a good place if anything deteriorates.
