End stage MS

Hello, I’m new here!

I’m 25 and my father, two sisters and me all care for my mum (alongside carers that come in every morning).

My mum has lived with multiple sclerosis for 20 years now. Unfortunately she’s now entered the end stage of MS, she’s been bed bound for 2/3 years and can’t sit in her wheelchair anymore because of really nasty bed sores. She’s been in and out of hospital for the past year or so with various infections including sepsis and pneumonia but has now decided she doesn’t want to go into hospital anymore (mainly due to the current covid situation, and her getting quite confused when she wakes up in an unfamiliar place). She has difficulty swallowing, and a lot of the time we have to syringe liquid into her mouth in order for her to swallow her tablets. The doctor advised against getting a peg because of more risk of infection.

Her cognition has been affected a lot, and she has up and down days. One day she will be able to form a sentence and ask questions, whereas other days she doesn’t seem to quite understand a lot of things and is incredibly sleepy. We’ve had a palliative nurse come in to ask questions about her wishes, and my mum gets incredibly upset when the subject is brought up. We feel it’s so important that we understand what our mums wishes are, but it’s hard to know what her understanding is of what stage she’s at. She’ll often ask if she can use the mobile phone, or the tv remote, even though she hasn’t been able to move her hands in years. This makes it very difficult to talk about death as she doesn’t realise she’s nearing the end of her life. I understand MS is very unpredictable, and no one knows when something might happen. It’s so hard to bring up the subject without upsetting her at all, it’s hard to understand whether she is in denial or it’s the strength inside her that’s telling herself to keep fighting in order to not let that happen.

She’s such a strong woman and I know that all she wants is to keep fighting, however her body is getting weaker and she’s losing a lot of weight. All we can do now is keep her as comfortable as possible, and be by her side. I’m finding the uncertainty of it all so hard to deal with, I’m constantly on high alert worrying when something might happen, but it could be like this for another 2/3 years who knows! I don’t usually live in the same city as my mum but have been back since covid happened, but I feel too guilty to go back to my own home for a bit of a break in case she passes whilst I’m gone. I feel so helpless.

Hi Marie & welcome

So sorry for all that you are currently experiencing. Which are totally normal feelings. I wish there was a magic wand for you and your family. Take comfort that you are all there for her. There are no rights & wrongs here. How we behaviour is unique to us. And you know you Mum best. People can make recommendations but these don’t always work for everyone. However we can take some prompts that have worked from others. And adapt these the best for us.

You do need to take time away from the situation. If only to recharge your batteries. When we are tried we see less clearly. Never feel guilt everything you do for your Mum. Is with the best of intentions.

It’s not always necessary or expected to talk about our passing. The fact you are present can be enough.

If there are things you wish to say. Seek help and advice from the palliative nurse . You can also put together photo’s of all the good time.

Has anyone mentioned “NHS Continuing Healthcare” to you?
All the care mum needs, either in her own home, or residential care, FREE of charge.

Thank you for the links they are very helpful with knowing how to approach a sensitive conversation!

My mum was put through for fast track, I think this is something to do with NHS Continuing Healthcare. So thank you again for that suggestion - I hope this will allow us to have more help at home during the really tough times.

Fast track is supposed to be provided within 48 hours.

Feel free to ask us about anything, someone usually has the answer.