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

Anne’s husband was diagnosed with bulbar onset MND in May 2020. He died in their local hospice in December 2021. For carers week, Anne shares what a day of caring for him involved.

“I want to start by highlighting that no two days are the same. Caring for someone with a progressing disease means that you are constantly catching up, adapting, and struggling to keep on top of things as the disease changes. I would ask myself questions like whether I’d be a good carer next week as things change again, whether I’d be able to keep up with his needs, and how on earth I would do this. But you just do. Below is what a day of caring for him looked like, with recognition that the following day could be markedly different as he lost the ability to do something else.  

The morning would start with getting out of bed. We’d try to keep a set time and routine, but the time of getting up often varied depending on how settled the night before was, and how tired we both were. It would be determined by things such as how many times we had to get up during the night, and whether either of us managed any settled periods of sleep. We would both be very tired.  

My first job was to get my husband up out of bed and support him to use the toilet. This was followed by a shower. He could step into the shower cubicle in the early stages of his disease, and he never lost the ability to walk short periods with assistance, which helped from the perspective of caring. We had a shower stool to allow him to sit while I washed him then dried him, first with a towel and then a hairdryer set on low to make sure he wasn’t wet and wouldn’t get cold.  

Next, I would move onto shaving. It was a relief to us all that I got better at this over time! But, as his neck muscles deteriorated and his ability to hold up his head became difficult, shaving became harder and less frequent.   

Then, I would brush his teeth, which was incredibly difficult as he had issues with swallowing and would choke on excess saliva.   

Finally, I would get him dressed. This is a difficult task when someone can’t move, and I had to manoeuvre his limbs to get them into clothes. You learn which clothes are easier to put on, but that can also change.  

This whole process of getting him up took about an hour.  

Our bedroom was upstairs. Earlier in his diagnosis, he could go downstairs with a lot of help. Later we had to use a stair climber. This enabled him to move between downstairs and upstairs, but it is a huge piece of equipment which is difficult to manage as just one person.   

Once downstairs, because of his swallowing difficulties he couldn’t eat and drink normally and needed to be fed  through his PEG tube (a tube which goes directly into the stomach). I would give him two bottles of Ensure (2x220ml), plus cooled boiled water. His medications would also need to be crushed up and dissolved in liquid form so that I could pass them through the tube. And then I’d need to make sure that the area around the tube was clean and dry.   

He needed to be fed, using gravity feeding with a syringe, three times a day – breakfast, lunch, and dinner – and then a fourth smaller feed at around 9pm. Each feed took about 30 minutes. We thought about overnight pump feeding, but felt this was not practical because of the number of times he needed repositioning during the night.  

After the feed, I would spend time clearing saliva, support with going to the toilet, and making him as comfortable as I could. Because of the broken sleep during the night, my husband was so tired during the day. We moved the bed downstairs to enable him to rest during the day, but getting comfortable and settled was hard, and so sleep was fleeting.   

We had help and input from consultants, specialist nurses, occupational therapists, speech and language therapists, local authority, dieticians, feeding tube support, and so on. This input meant that we’d sometimes have appointments in the morning or afternoon.   

An appointment required pre-planning and getting someone to come with me. Travelling was difficult, particularly because of his saliva issues and needing to clear saliva so that he didn’t choke. A 2pm appointment, for example, meant leaving the house about 1pm-ish. The person helping me – often a friend – would assist with getting him into the car. I could sit near him to clear his saliva. We borrowed a wheelchair so that when we got to the hospital for the appointment, we could pull up outside. Manoeuvring was a two-person job. I’d get the person helping me to go in with my husband. I would go and park the car and then come back to be with him for the appointment. We’d have to follow the same pattern on the way back – get the car, have help getting him back in. Once we were back home, he tended to be very tired. He would try to sleep, before we did the next feed.  

When night came, we would use the stair climber to go back upstairs. I would get him washed and changed, would assist with getting to the toilet, and then into bed. Getting him into a comfortable position in the bed would take many attempts, and even when he got comfortable, this tended to only be temporary. I would have to get up several times during the night to reposition him or take him to the toilet. His choking on saliva was a real issue at night and was quite distressing.  Because he had no voice it was difficult to let me know of his distress and so I could never properly rest. If we were lucky, we might get a few hours of unbroken sleep. During the night it all seems more difficult. And then morning came, and we would start the process 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.