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.