Paula’s Story – Carers Week 2023

This Carers Week (5th-11th June), we are highlighting the realities of providing unpaid care for a loved one with MND. With the theme of this year’s Carers Week being ‘Recognising and supporting carers in the community’, we are shining a light on people’s experiences of caring by outlining a typical day for them.

This story may be a difficult read and contains topics you might find upsetting. It highlights Paula’s experiences of providing care for her husband. It discusses loss, bereavement, medical processes, and disease progression.

Paula’s husband was diagnosed with MND, age 49. He lived with the disease for two and a half years, throughout which time Paula provided care, and navigated social care systems. Paula shares here her experiences of providing care. Following his death, she has since gone on to work in social care.   

“When you’re providing care for a loved one, the day is long. I’d get up in the morning and give my husband pain relief before I could get him ready. Once that had had time to kick in, I would get him out of bed, transfer him to his shower chair, give him a shower, shave and then dress him. This was a slow process of lots of manoeuvring and constantly working out the best way to do things. I would then change his bed and put bed sheets which needed cleaning in the wash. 

Once he was ready, I made breakfast. In the earlier stages of his disease, he was able to eat soft textured food which I would prepare and feed him. But as his disease progressed, he received all his nutrition through a PEG tube, where the liquid nutrition passed through a pump and into a tube connected to his stomach. I would need to keep his PEG tube clean and as dry as possible between feeds to avoid infection or blockage.  

I would try to get a quick shower at this point, but there is emphasis here on quick because he hated being alone. To be honest, I would usually cry when I was in the shower. I felt so sleep deprived and utterly exhausted. The day also felt quite lonely. After his diagnosis, his friends started to drift away because they couldn’t cope with seeing him the way he was. This was compounded by the fact that MND affected his personality and behaviour. I felt socially isolated. 

When you’re caring for someone, you still have to do things like go shopping for groceries. However these things become operations that take an enormous amount of pre-planning. Someone needed to come and sit with him so that I could go shopping. However, if they weren’t trained in his care needs (as they often weren’t), I was incredibly time restricted by how long I was able to be away from him for, particularly as his disease progressed.  

I was also still needing to work. As we live rurally, we struggled to get carers to provide care at home – there was a scarcity of anyone available. When we eventually found someone, I then had to spend time training her up to look after him and to do all the things which I’d learned to do.  We had looked at care homes, but as he was under 65, many were unsuitable for him, and those which were would have struggled to deal with his needs and the intensity of care he required. I ended up having to pay for a carer to move into my house to provide care when I was at work.  

The focus each day was on keeping him as safe as we could. I battled our local authority, and care companies. When I was home and the night-time rolled around, I would get him back into bed. I would get up with such frequency throughout the night to move him, support him, and deliver pain medication, that I think I averaged about 2 hours sleep a night.  

We continued to patch together support to get us through each day. But it was the most physically and emotionally exhausting thing I have ever done. There needs to be much more awareness at government level around what providing care for someone with MND is like, because carers desperately need and deserve support.”

Help us to improve systems for people affected by MND. If you would like to be involved in shaping our policy work on care, improving systems for people affected by MND, or sharing your experiences, please get in touch on policy@mndscotland.org.uk.

You can read more about other ways to get involved, such as through joining our people in policy group here.

We are here to support you. If you are currently facing issues with care, or providing care, please get in touch with us on support@mndscotland.org.uk. We offer services like advocacy to help you to understand your rights and support you with navigating issues such as care. We also offer wellbeing services, including counselling for anyone affected by MND.