Ms MacCulloch described the fight as a “David versus Goliath” situation, filled with “bureaucracy and box-ticking” to put essential care packages in place, with dementia paid “lip service” across the whole system. 

“The system is supposed to be there to meet our needs, but our needs have to fit in with the structure of care that they [authorities and service providers] are willing to provide,” she explained.

“But if our needs don’t fit in with that, then it falls back on us as unpaid carers, while trying to get creative about how we can look after ourselves at the same time. 

““I don’t have the energy to pick fights with the system. I’ve had to find my own solutions. I was banging my head against a brick wall, literally screaming into pillows, and nobody was there for me.

“When I need it, there’s really not anything there to help. The system pretends to care. But it’s still them against us but it’s all show. and it is the charities who are absolutely there to provide home – without that we’d have virtually nothing.”

The frustration from Ms MacCulloch is palpable. Not because she is a carer – but because she does not feel the system is there to help when things get tough.

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She has been a full-time carer since February 2024 and was part-time prior to that, since July 2022.

There are carers who come into assist with personal care for her mother but as the condition progresses, it is often unsuitable, leaving Ms MacCulloch to pick up the pieces.

“I try to keep up with whatever mum needs from me at any one time and it has made me have to find adaptable parts of myself that I didn’t know were there. You’re living in the minute, you’re in the hour.

“I can be up through the night, I can be all consumed through the day. We have a personal care visit in the morning and at the moment that has just gone awry because as mum’s condition develops and progresses, she is not ready to get up for them.”

“Nobody speaks about about the emotional toll in caring. We talk about mental health and we talk about physical health but emotional toll is what is a lot of the time creating issues.

“I can say I am physically health and mental healthy. I’m absolutely fine but I can be a wreck at the end of the day. I can hardly walk up the stairs sometimes. I can collapse into a couch. I can hardly move. That’s the emotional toll weighing down on my physical wellbeing.”

Lesley MacCulloch. (Image: Supplied)

A particular issue that causes anger for Ms MacCulloch is reforms on the right to a break for unpaid carers.

The right to a break was introduced through the Care Reform Bill in June 2025, with plans underway to implement it.

It allows carers to take sufficient breaks, often through respite, and places a legal duty on local authorities to put support in place.

But caring organisations have warned there has to be significant investment and resource invested.

“I feel a lot of contempt, if I’m honest,” Ms MacCulloch said.

“Politicians have decided that I can be approved to have a break. I look at that and imagine why that’s even a conversation. I am a human being. I’m the same as them. What an absolute waste of time and money.

“How can a politician sit there are reasonably justify, and ell me, that I’m entitled to a break. Of course I’m entitled to a break.

“Someone has to come in here and assesses whether I am worthy of a break, worthy of more help. It’s shameful.”

She added: “It is so lonely sitting there at 10 or 11pm with nowhere to go, nobody to speak to, nobody who understands me.

“I would love to have a government that really cared and actually trusted me. A government that wanted to truly, deeply listen in order to understand, and then act authentically to create what is really needed out here. I’m appalled at where we’re at in Scotland in 2025.”