Jess’ husband Neil lives with advanced MS. During lockdown she noticed a decline in his arm movement, which made independent drinking impossible for him. Here she tells us how she managed to hook up a hydration station, which gave them both a little more independence.
Neil first started having problems with his balance and eyesight, along with some other problems, when he was aged 20. He went to see his GP, who referred him to a neurologist in Aberdeen. One month before his 21st birthday he was given his diagnosis of multiple sclerosis. I met and started dating Neil when he was 27. He told me he had MS and I tried to be very understanding. I had a close Auntie who also had MS and she didn't seem to have too many problems with it at the time, so I remained positive. Looking back I had no idea of the real impact MS would have on us. Since meeting him, Neil has progressively gotten worse. The first symptoms were walking and bladder/bowel problems, he’s got a suprapubic catheter, gets transanal irrigation daily for his bowels and has had a Baclofen pump fitted to stop spasms in his legs. Neil is now unable to do very much, he can still communicate with me, but the carers struggle to understand what he is saying sometimes. He cannot eat by himself anymore, and has been struggling to drink.
Over the years Neil has been lucky to receive many grants for equipment he's needed. He used to be a fisherman who worked offshore and received a grant from the Oil Chaplaincy in Aberdeen to make the garage door electric, so Neil could get in and out with his mobility scooter. Then he received a very large grant from the MS Society for his sit to stand Genie wheelchair. We also got another very large grant from the Shipwrecked Mariners for a new bed so we could continue sleeping beside each other as a couple. It was very important to us that our daughter grew up being able to come in for snuggles with her parents and have movies nights. We have also made use of the short breaks grants from the MS Society and we hope to go on holiday this summer after Covid wrecked last year’s plan!
The start of lockdown was probably one of the most worrying times of our lives.
The start of lockdown was probably one of the most worrying times of our lives, I immediately panicked and cancelled most of Neil's care. I thought the best thing to do was to keep him safe and have as little footfall in the house as possible, so we had one carer coming in the morning and none at night (we only get twice a day care which is our choice as a family). It lasted about four days until I realised I needed the help back at night. Neil wasn't getting the proper personal care and attention to detail with just me doing it. For 12 weeks I struggled on, getting up to care for Neil, starting at 7am for an hour and a half of personal care and then helping for the half hour at night, I was absolutely exhausted. I tried and tried to get the council to restart the care, practically begging and having to email every second day, their excuse was that they had shut down the rotas and didn't have space! I found this unbelievable for somebody in Neil's condition and they knew we also had an eight year old in the house. Eventually it got restarted but it was a real battle with the council. On top of the caring there was also the home schooling of an eight year old to contend with.
There are some positives I can take from the pandemic, apart for all the extra time I had to help Neil. It was nice to not have to go anywhere. Before our daughter was often at clubs after school and it was nice to not be driving about everywhere. We got to spend a lot of quality time as a family and with Neil only getting worse it's time we won't get back. Bella and I bought some badminton rackets and played outside a lot and Bella also practised her hockey skills. We also started practising lots of different painting techniques we found on YouTube videos.
During the first lockdown I noticed Neil was losing the ability to move his hand to his mouth to drink, he has been using a drinking system called the Hydrant for a few years, which has been a god send. Neil loves drinking juice, he will drink four or five litres a day! I think this has had a positive impact on his health as it ensures he takes on enough fluids. In December, Neil got more Botox in his arms as they were so stiff it was getting really difficult to get his clothes on and off, however the side effect of that is limited movement of his arms.
Neil was constantly calling for my help to drink, as you can imagine to get through that amount off fluid it was nearly every five minutes. I'd leave the room to go and do the dishes or something and be called back for 'Juice!!' One day I remembered the SALT nurse (Speech and Language Therapist) recommending a product that could help. I went on the website and they have a device with a clamp and a long piece of wire for drinking. I thought that’s the tool for the job, but it was £140, far too much money for what it was, especially as we already had the drinking Hydrant and tubes with non-return valves.
I felt like these companies were exploiting disabled people by making things so unaffordable.
A few days later I had a light bulb moment when thinking about my old pram brolly and the bendy piece of wire it used to make the brolly move for the sun. I didn't want to cut mine up as it matches the pram, but I found a cheap one on Amazon so I ordered that. My mum also had an old brolly I could use. I chopped the brolly bit off the top and attached it to the holder which I clamped onto Neil’s head rest, so it can be removed for the carers to get access. So I had a bendable piece of solid wire with a clamp on the end to hold the straw and I can also move it out of the way of his face, all costing just £10!
I’m now really enjoying not being asked for juice every five minutes and I'm not exaggerating it was every five minutes or more! Neil just sucks away happy as can be and I leave him to it and get on with my chores or we can go out on a walk with the dog or to town knowing he's going to be ok getting a drink.
I'm now really ready for lockdown to be over! Neil was supposed to be getting a place at a centre in Elgin for one day a week just before lockdown to give me a bit of a break and to get him out of the house, but I don't know if or when that will happen now. We are also looking forward to going out for coffee and a cake. Neil and I really enjoying doing that together. We have our holiday in June to look forward to, it’s at Crathie Opportunity Holiday in Crathie, which is an absolutely superb place for someone with Neil's condition. It’s kitted out with hoists, beds, shower seats, repose mattresses, anything you could need they have, and it's absolutely stunning right beside the River Dee.
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