This is written from my own experience of living and caring for a loved one with MND/ALS.
At the beginning when everything is still new and you are busy coming to terms with the diagnosis, it’s easy to bury your head in the sand and not do anything to prepare yourself for what lays ahead. We were rather naïve about what having ALS meant, we hadn’t researched it much and hadn’t known any one with the condition, apart for Steven Hawkins.
We could have easily drifted along, being stuck at home because of covid and not really doing anything. If it wasn’t for the specialist MND unit at the hospital and all the people who worked for them, I’m not quite sure what would have happened to us. They put us in contact with organisations, as well as monitoring and advising us along the way.
The MND unit assigned an occupational therapist, dietician, physio, psychiatrist and speech therapist to us. I am aware that not all hospitals have a specialist unit so these things may not be available to you and you may need to seek these out yourself or request them through your doctor or consultant.
The MNDA, motor neurone disease association, are a fund-raising organisation in the UK, who support research and also give support to families. There are grants available for adaptations. They also have a group of volunteers who offer emotional support and advice, not only to the person with MND but to all the family.
The MNDA under normal circumstances would have been a great support to us. As a carer they would have offered me group meetings and individual support throughout Craigs illness and afterwards as well. Unfortunately, because of covid everything had shut down and even zoom meetings were not available. I did however have one lady who contacted me from time to time to check on me.
We tried to tap into as much support as was available at the time. Craig had been a fire fighter in our local town. We contacted their charity and were really touched by their support. We were assigned a worker who phoned us regularly to talk to us both. We felt like we hadn’t been forgotten, which was very important at that time, when we had limited contact with anyone.
As covid restrictions lifted we were invited to the firefighter rehabilitation centre, for a week’s rest bite. It was quite a long way from home and took several hours to get there but was worth it. The nurses were amazing and had lots of banter with Craig which he loved. He had a team of nurses looking after him 24hours a day, so it meant that I didn’t have to do anything. I had a hard job stepping back though, as I was so used to doing everything. His speech was difficult to understand, so sometimes I had to translate. I didn’t leave him by himself but I must admit it was nice to sit and eat meals without having to feed him. I couldn’t remember the last time I’d done that, usually we shared the same meal.
It also meant I could sleep without having to get up to him in the night. He had a buzzer that he pressed and a nurse came in to him. I’m hard of hearing so without my hearing aids I couldn’t hear the buzzer or the nurse, so I was able to have a proper night’s sleep.
The centre had gym equipment specially adapted and a hydrotherapy pool, as well as other things. He especially liked the hydrotherapy pool. They had a hoist to get him in and out. He also liked being surrounded by nurses all day! We visited the centre 3 times in total.
I was offered some counselling whilst I was there. I didn’t think I would accept but then I thought why not and actually it was good to talk to someone not involved. It’s always good to get someone else’s opinion and sometimes it helps you get things in perspective.
The local doctor’s surgery also had a carers group that I could have got involved with if covid wasn’t around. There were actually several different groups offering support, some specific to ALS and some general. I may well have utilised this support if I’d had the opportunity, I can’t honestly say because it wasn’t a choice I had. I know from meeting people afterwards, who have lost a loved one, everyone is very different in their need to talk about it. Sometimes talking with someone who has been through it, is more useful than talking to friends who may not have experienced the same loss. It’s also nice to talk to someone other than family, as you may find it is you who is supporting the family and not yourself. You being strong for them sometimes gives them the impression that you don’t need support. You must always make sure you are getting the support you need.
I am quite independent and like to think I can manage on my own and to some degree I did just that. I had Craig by my side, as my rock, even as the disease progressed, he was my biggest supporter so I wasn’t really on my own. I couldn’t have managed if he wasn’t such a remarkable man. For that I am eternally grateful. He made looking after him easier.
I realise however that everyone is not in this unique position and sometimes the disease affects people’s personality as well as their body, which makes caring for them more difficult. This is when utilising external agencies and charities for support becomes vital. At the end of the day, you have to do what is best for you.
Author: Anita Newton