“Craig is terminally ill – but we’re still a family. We still live life.”

When Craig was first diagnosed with MND in September 2017, the problems were just presenting in his upper body limbs. It started with his fingers, his hands, then his arms – it was kind of like muscle weakness. Then fiddly things like opening the door with the key and holding a cup became a problem, until eventually he wasn't able to lift his arms. Now he's basically completely quadriplegic. He also has respiratory issues and his diaphragm is weakened.

His speech is still okay. Speech is about the only thing he's got left of his own that he can use.

I provide one-to-one, 24/7 care for Craig. I do pretty much everything. I have to hoist him onto the commode to use the toilet, hoist him to bathe him, I have to feed him, I have to dress him.

I had to give up work to care for Craig. I worked for Marie Curie as an assistant manager for their charity shop. It wasn't so much the financial impact I felt when I left, it was the emotional impact. I loved ending every day feeling like I was really making a difference. It was the hardest thing having to walk away.

Financially, obviously the greatest impact has been the rising cost of electricity and gas. We've felt the rising cost of living in general. We don't travel. We don't go out socially. Our money goes on food and utilities. We don't pay for any kinds of extras or treat ourselves.

Craig has his non-invasive ventilator, a cough assist machine which gets plugged in, a nebuliser which has to be plugged in, and a recliner which is also plugged in. Obviously we're in all the time, so the electricity is being used all the time. The heating has to be on. We use a lot of emollient to keep pressure sores away, so you've constantly got the washing machine on with bedding and clothes.

We're in receipt of benefits, so we're in a better place now. When we first applied, Craig was initially turned down for the personal independence payment (PIP), and we ended up having to go to tribunal. Craig was awarded the PIP and they also backdated it, which was great. Once that was sorted, we thought of Employment and Support Allowance, Carers Allowance and all the other benefits.

Craig has a multidisciplinary team both at the hospital and in the community. What I've found with the community team is that once a referral is made, they come out and work on whatever issue they find – then Craig is discharged. This means that when another issue presents itself, I have to go through the referral process again.

When Craig couldn't walk anymore, it literally felt as if it happened overnight, so he couldn't get to the toilet himself. Can you imagine having to make a referral to somebody to get the help for that? When you're not permanently kept on somebody's caseload that's what you're dealing with: constant delays.

Being under the care of the Marie Curie team has made a big, big difference. It's just amazing. It's not just the practical support. Lucy, a Clinical Nurse Specialist, would phone me and ask, "How are you this week? What have you been up to?" They really understand where you're coming from. She talks through anything that I feel like I need support with, in terms of having to chase things up.

I've got to a point where I just don't want to have to chase people. You feel like you're banging your head against a brick wall. I can ask the nurses, "Can you contact the doctor for me?"

Sometimes I feel as if I'm speaking a different language, then you doubt yourself. You think, "Am I not making sense? Am I asking too much?" When I say it to the Marie Curie team, they go, "No, I don't think that you're asking too much at all." It's such a relief to hear somebody say that to you.

I have two grown-up children who live at home, Sean and Christopher, and they work full-time. What people need to remember is, yes, Craig is terminally ill, but we're still a family. We still have the everyday. We still live life, a normal life like everybody else.

I wish more people understood that we're still a family. I constantly get, "I don't know how you cope," or, "It must be so sad and so depressing." Really it's not like that. Not to say that you don't have moments, but you don't constantly think, "He's dying. Oh, this is so awful. We're all sitting here crying." That isn't real.

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