Simon’s story

Becoming a carer

I care for my Mum who has Alzheimer’s. I care for her full time and live at home with her. She was first diagnosed about 5 years ago, but as she gets older her needs are just increasing.  For my work I used to care for patients with dementia. I’d have up to 25 patients on my ward I was looking after but it’s so different when it’s your own Mum.

I have struggled with my mental health for a long time. Around 11 years ago I had a mental breakdown which meant I had to leave my job. My mental health is something I must continually look after. This is even harder when the stress of looking after my mum is getting increasingly worse because her needs are increasing, it feels like I am barely keeping my head above water.

It is constant when you are a carer, and I am just not able to live my normal life. I cannot work with my caring responsibilities and so we do not have much money coming in. I have been with my partner for five years, normally by this point we would be living together but I can’t when I need to support my mum at her home. It so important that I do self-care to stay well as I have struggled in the past. As a carer though, it’s hard to start the day off every day with this stress around getting mum up and ready. She is normally more disorientated in the morning, and it feels so physically demanding to get her ready for the day. So, straightway I have got to put myself aside to help her.

Leaving Mum at day centre

More recently I have got Mum into a day centre, which she goes in 5 days a week. When I first left her, it felt like role reversal, like when you have to leave your toddler at nursery, and you are just scared of leaving them with people you don’t really know.

The day centre gives me some much-needed respite. With Mum though, it feels like I am watching another bubble pop in a sheet of bubble wrap, each week another going. Before she went in the day centre, we would go out and about and I would talk to her as much as I could. She does not get that at the day centre because there is so many other people there. It is hard to see that its making things progress more, but I cannot look after her all the time.

I know the time is coming to look at Mum going into a care home, I am meeting with the social worker in a few weeks to talk things through. It brings up so many emotions though. I feel guilty for not being able to continue to look after my mum. I am worried about the financial side of it too, my Mum owns her house, and she will be self-funding.

I have two brothers who live locally, and they help some alternative weekends, but they have their own health problems, and they work so they cannot help out much more than that. I was also the one that did this for a job, so it feels like and assumption that I am the one who is best suited and so should take more of the responsibilities. It is strange it still feels very gendered, like if we had a sister, she would be the one taking care of Mum, because women are often seen as ‘naturally more caring’.

The importance of support

It helps to have a very understanding partner. She gets when I am feeling down about everything with Mum and having my brothers means I get at least some respite. I cannot imagine caring day in day out without them. We also are lucky to have a social worker that is good and proactive, I feel confident she will try and help us.

I think it is so important to reach out as a carer, it makes a difference just knowing you are not on your own. People need to know, you cannot and do not have to just plough through on your own, there is a safety net for you.  Self-care is so important, for me, I already feel a bit fragile anyway, so you have got to be so aware of yourself and your limits. If you just keep going you will crack. I think when you are caring, you can get into this mentality of ‘I’ll just get through another week’ – but it keeps adding until you cannot cope anymore. It is not good for anyone.