Being a carer for my husband with Motor Neurone Disease and Dementia

My husband was diagnosed with MND/Dementia about 8 months ago. It was obviously a shock to us both, but he actually seemed to cope with it really well. I knew then, that because I had worked as a carer for some years, I would want to care of him at home for as long as possible.

His dementia is not very severe, but it means he is very forgetful and struggles to do the right thing. For example, during the Covid19 outbreak he has been unable to understand or adhere to social distancing, so I could only take him to places where we did not have to do that.

I am now attending to all his needs, which keeps us very busy. He has a feeding tube in, so all his food and fluid goes through the tube, four times a day, as well as medicines.

I wash and dress him, help him get around. The hardest thing is remembering all the things I need to do, such as washing between his toes or belly button. Looking after one person is a lot of work when they can’t do much for themselves. I also try to help keep him entertained and engaged.

It is a privilege to care for the man I love and to try to ensure that the time he has left is as comfortable and happy as possible. I would not walk away from this job for anything. He really is a wonderful patient too.

However, I would be lying if I said it wasn’t hard work. It is all engulfing. My whole day is spent thinking about what I need to do next, whom I need to ring, what I need to plan for later in the day.

I think the main aspect of this situation is that you lose all thoughts about yourself. I sometimes forget to eat as he has all of his food via the tube. I have had to be really strict with myself and make sure I have a dinner every night, although it’s often not until 9pm, when we always used to eat about 5.30pm
I try really hard to catch an hour or two either in the morning or at night, just to have some quite time while he’s in bed. He loves the TV so it’s on all day. I like to turn it off and just be quiet and read my book or just do nothing. That is my time.

My only other space is a weekly trip to the shops for food. I never thought browsing round my supermarket could be a time of pleasure, but just having a couple of hours away is such a huge relief and allows me to regenerate. I have always thought of myself as quite a self-sufficient person, who doesn’t get lonely. However, I now really enjoy that short time every week with my children when I see them to go shopping. Just chatting and sharing how I feel is a great relief.

I have very broken sleep as I am always listening in case he needs me, so I never have a full night’s sleep. I may try to catch an hour’s doze on the sofa in the afternoon if he’s happy watching TV.

Guilt is something that I feel often as a carer; when you get things wrong; when you miss something; when you get annoyed. I think every carer suffers that to some degree.

My life is not my own but I feel I am doing the right thing, and even though it is hard I would not change this role I have. I am lucky to be so well supported by his “team” including the MND Nurse, Speech Therapist, Dietician, Respiratory Physio and OT/Physio. They all keep in touch so that I am able to discuss any worries I have and if I have a problem they are always there for me.

Recently I received a generous grant from the MND Association to help me buy a new tumble dryer. I am thrilled with it and now have lovely fluffy towels. The charity has been a great support and I have a volunteer who is available if I want to talk to anyone else.

I don’t know if any of us know how we would deal with this situation but I think that when the chips are down, most of us would want to look after our loved one if possible. I wish that I didn’t have to and that he was well and fit again, but that is not our journey so I will carry on caring as long as he needs me.