My mum was diagnosed with MS 43 years ago. I was just two when she was diagnosed so I have grown up with MS. When my dad left, we made the decision to have mum come and live with us (me, my husband and our four children) full time. I’m an only child and I couldn’t bear the thought of there being nobody at home to look after her.
I think I have been a carer, in some ways, since I was a child, but I never really thought of myself in that way. But now that we’re giving mum practical care: putting her to bed, washing her, personal care, things like that, it does bring it home that you are delivering care rather than just living in the same house as each other.
All four of our children have grown up with nanny living here. They do help with things like putting mum to bed and they painted her nails when she was last in hospital. They’ve seen and done things that most children their age haven’t – one of our daughters found mum choking one day and they’ve had to get used to ambulances turning up at the house – but I think it’s actually given them caring, practical and really nice personalities. Three out of four of them are actually looking at medical careers based on their experiences.
For the past eight years, mum’s symptoms have gradually been getting worse, and it is almost a full time job now. We have an agency come in each morning for half an hour which allows me to go to work, but the other 23.5 hours are down to us. We put mum’s needs before anything we want to do; even if we just want to go out for a day, that’s not something we can do now. Holidays can’t really happen either; three days is about all we can do. Occasionally we can wangle five days if we get someone to help, but even then you’re spending a lot of money on somebody coming in, and you’re worrying about whether she has everything she needs or if something will go wrong.
I find that the physical symptoms are actually easier to deal with than the cognitive issues mum faces, because they are logical, and you just do what needs doing. Mum was diagnosed with frontal lobe degeneration a couple of years ago, and suffers with memory loss, hallucinations and delusions. It’s really horrible to see your mum going through that. Sometimes we can’t even rely on mum to remember to drink, which can lead on to other problems too.
I do wish there was more specialist support for people with advanced MS and their carers. The GP is mum’s main medical port of call. She has an MS nurse now, and she can come out every three months, but that’s new to us. The previous MS nurse couldn’t commit that time. We’d only see her every three to four years, unless we phoned up with a specific problem. We haven’t seen a neurologist since mum was under a private one about 20 years ago, and although I’ve asked for more visits from an occupational therapist when mum’s symptoms change, it’s not been forthcoming.
When mum was recently in hospital, it became apparent that if she’d had a different illness, she may have had a specialist health professional there saying ‘We’re here for you, and these are the other health professionals you can contact’. We felt like we were floundering, to be honest; we didn’t know which direction to turn. We needed somebody to signpost us. That’s why I think the Advanced MS Champions programme is so important; the Champion sounds exactly like the kind of health professional people in our situation need.