A day of coming and goings. Alice’s mother’s funeral is on Wednesday so there were many things to organise to allow ‘my lovely’ to be away for the best part of two nights. It might just as well been a month for amount of things that had to be arranged. First of all, there was the evening session with the carers. Tonight, Carla, one of the Ross nursing team and our most regular carer came to do the 9.30 session and then stayed on in the spare room above me ready to carry out the morning duties, getting me up sitting on the edge of the bed, giving me my morning cup of tea; then my orange juice and my daily mineral and vitamin tablet, Berroca ; then breakfast, a shave and cleaning my teeth with my electric toothbrush..’My lovely’ normally gets all is done before the 7.30 girls arrived to give me a shower, dress me etc .
On this occasion Carla carried out his duties very proficiently before Emma, the other carer, joined her to carry out the next stage. In the meantime’ my lovely’ got about four o’clock to catch various trains to get her to Cornwall in time for the funeral. I’m not quite sure how it works but I know she’s going to be away tomorrow night and then back late the following day. So it’s Carla again this evening with Jane’ the sheep in the background in case things go wrong as she is more familiar with the house, than Carla.
It’s amazing the amount of things that Alice had to think of in advance. quite apart from the medication and the meals. It was a real military exercise. I must say everybody says how wonderful Alice is. I really should tell her more often. I much appreciate what she does for me. No matter how good the other carers are, there really is no substitute who comes even close to her. I suppose she understands my needs better than anyone else. Having said that, Carla, who is our most regular morning carer, was very good and picked up on most of the things that needed to be done.
Paul ‘the computer’ popped in a couple of times to tweak my computer; the hoist man turned up unexpectedly to do the annual maintenance check and the district nurses came in to take some blood as a result of my recent visit to Papworth. What with struggling with Dragon. most of the day in between all these comings and goings. the time passed swiftly. The problem is that from about 6.30 p.m onwards I begin to feel pretty exhausted and cannot be very good company in the evening, although up to that time I am usually pretty perky but go downhill fast. I just want to go to bed except that the longer I stay in bed the longer I have to put up with the painful joints, so I always hang on until the 9.30 carers come in.
Reading this again I’m very sorry that it is rather dreary but then I suppose we are all entitled to our off days. I include these details of how I feel in order to share them with other MND patients so that they realise that they are not alone.
Two good things to report, to finish on the right note.The sheepskin lined electric foot warmer that Smiler and Kimberley gave me for Christmas has being a great success in un- freezing my icy cold feet.
I also have to look forward, hopefully only until tomorrow, when Paul is going to bring me an infrared device that will enable me to operate my iPod ,on its Bose speaker stand, I have over 5000 pieces of music (mainly classical) on my iPod and feel deprived of late in not being able to play them. I really miss my music. The remote control has to be pointing precisely at the iPod and I really do not have enough strength in my fingers to press down on the right buttons. So, being able to operate it from my laptop will open up an entirely new chapter for me.
In trying to decide what to add to today’s blog that might be of interest to readers. I decided to use an extraordinary clip about a couple who had reared a baby lion cub who had lost its mother. It was released into the wild and then reunited with them, a year or two later.in the jungle, where he had been released when he became too big to keep at home, It really is the most amazing sight to see this lion who has spent the last year or so in the wild, in his native surroundings, rush up to these people, greatly excited like a dog, licking them and wagging his tail (or do whatever lions do to show they are happy and not about to bite your head off !!). He even brought his wife to be there. Click here to watch this amazing clip.(I just hope that I have not used this clip on an earlier entry.)