Lesley’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 Lesley’s experiences of providing care for her husband. It discusses loss, bereavement, medical processes, and disease progression.

Lesley’s husband Arthur was diagnosed with MND in September 2019. His disease progressed in the time of the Covid-19 pandemic, and he passed away at the end of June 2020.  The pandemic, combined with failures in statutory services, meant that support from social care, and housing and adaptations, came too late or not at all. For all but the final four days of her husband’s life, Lesley cared for him by herself. Here, she outlines what caring for him looked like for her. 

“I start with the evening because the evening and the night-time was the worst time. We dreaded it. We would both look at each other as night-time approached and gear ourselves up for the ordeal. I would get my husband dressed and ready for bed, clean his teeth (with toothpaste that didn’t froth up), and then transfer him from his wheelchair into bed. He wanted to always sleep in the same bed as me, and so we did that. I would set up his urine collection bag and sheath (a form of catheter), and prior to that, we used a bottle if he needed the toilet in the night.  

He had to be turned every hour. It was just me caring for him, so I would go round to his side of the bed and haul him into a sitting position. At the start, I would help him to use the bottle if he needed the toilet and then lie him back down. Later on, we moved onto the urinary sheath, which was fitted, but would sometimes leak. When accidents happened at night, I would have to roll him to one side and change the bed sheets and mattress toppers. I couldn’t put the mattress topper into a household washing machine, and so I would then need to bag them up, and a friend would come to the front door and collect the bag and take them to an industrial cleaner. It was during lockdown, so she would then bring them back and leave them on our doorstep.  

We also had a respiration monitor on occasions to monitor his oxygen levels during the night and the readings were sent automatically to the respiratory company to check whether they are okay. If he wasn’t getting enough Oxygen, someone would be called to come in.  However, wearing the electrical contacts at night-time was difficult because they wouldn’t tolerate much movement, and because I was moving him frequently, I had to be careful not to dislodge anything or alter the readings through moving him.  

The whole night was focused around toilet timing, his comfort, turning him over, using an aspirator, checking a respiration monitor, and moving his legs. His legs and feet got very cold, but the rest of his body was hot. He would have thick socks on, but we would sleep under a duvet cover or sheet as he couldn’t control his temperature. He had big issues with excess saliva, so I would use the aspirator (to suction the excess saliva) throughout the night if he gestured to it, or if I could hear that he was struggling. All of these night-time responsibilities meant that I was up every 30 minutes and would only sleep for very short windows of time, if at all.  

When the morning came round, I would transfer him into his wheelchair. I’m 5’1, and he was far bigger than me, so I worked out a way to move him. He would grab over me, and I would try and move him. Sometimes he would get dropped into the wheelchair because he had no way of helping me – our carpets were too thick for a mobile hoist. I would do his teeth, wash his face, and transfer him to the toilet or to the commode. If he was having a shower, it was a matter of transferring from the wheelchair to the commode and using that in the shower. After the shower, I would dry him to a certain point, and then wheel the commode back into the bedroom (he would still be wet from the shower). We would then transfer from the commode to the wheelchair.  

We live in a bungalow, so from the bedroom, we moved in the wheelchair to the dining room table, where he could eat, or as his disease progressed, I would feed him. At the earlier points in his disease, I would initially transfer him to a riser recliner from the table. But later on, when I was doing the syringe feed, he would end up in the wheelchair for longer than he wanted to be.  

Because of his MND, my husband struggled with constipation. This meant that throughout the day, I would spend a lot of time lifting him onto the commode. He was happiest when moving, so sometimes when he was transferred back into his wheelchair, we could go into the garden via a ramp which we had to pay for ourselves.  

When you are caring, it is incredibly hard to get time to sit down. You are relying so much on other people – the friend who took the washing away, support staff coming to visit (in particular the OT), and friends and family waving through the patio doors.  

As this all happened during covid, I spent a lot of time dealing with support staff, chasing up equipment, and then when equipment arrived and wasn’t suitable, it would have to stay at the side of the house. We got a hospital bed, for example, and between me and our OT, we managed to move everything into the lounge to make space for the bed. However, the bed had an air pump to help with pressure sores. It was so noisy so he couldn’t sleep anyway, and it was entirely unsuitable because it gave him no support when I tried to sit him up on the mattress for toileting because he was like a rag doll by that stage. We tried it for one night and abandoned it at about 4am.  

As night-time approached, we would look at each other with the knowledge that this was all going to start again.”

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.