I spent a reasonable comfortable night apart from the fact that my right shoulder became very painful around 3 a.m. Fortunately, Craig, who was sleeping in the spare room above me, had arranged to come down at 1.00, 3.00 and 5.00 to turn me and that always seems to relieve the pain. The problem is that I have become so weak I cannot lift one leg over the other and my arms get very easily trapped under the sheets. Also, although I can roll slightly from my side to my back and I don’t seem to be able to move my body into a comfortable position so being turned over at regular intervals has become a necessity.
We got up just after 6.30 when Craig admitted to having a splitting headache and not feeling at all well. Obviously I was concerned for him and insisted that he went straight home. This as much as anything was selfishness it on my part so as to avoid catching whatever virus he had contracted. Anything that affects my breathing could certainly land me up in hospital and I’m certainly not relishing that idea.
Sam the second of my carers came at 7.00 a.m. to discover that she was on her own but Jane mucked in and between them we got through the usual tasks of morning tea, showering, dressing and transporting me into my study chair before Sam left and Jane took over, giving me my breakfast, shaving me and supervising the teeth cleaning. Then, being familiar with the wrist splints I need to wear in order to operate the computer, Jane completed those jobs before leaving me to my own devices. I mentioned all these procedures in order to emphasise the number of things that one has to do in order to get going in the morning that most of us would take for granted and not give a second thought to.
Alan and Neil, technicians from Possom arrived this morning to remove their equipment from my office which, of course, I can no longer use. In fact I’ve been requesting the removal of this equipment for well over six bleak eight months in order to save the NHS the leasing cost. At the same time we looked at an alternative alarm , anticipating the day when I can no longer use my arms.
The one we settled for has a large button, on a flexible arm which clamps to the back of the chair, one each side, and can be operated from a touch from my head. They were really helpful. The only thing we didn’t manage to sort out was a voice activated telephone but I suspect, in the end, I may have to use Skype.
We also looked at what sort of alarm I could use in bed once I’ve lost use of my arms. They left a transmitter which can be activate the normal responder by sound. It has a little microphone which I’m hoping I can house in the corner of the respirator, which, when I shout into it, will activate the responder that Alice carries around with her. My only concern is that the sound of the respirator itself may trigger off the alarm. I shall try it out tonight or tomorrow night. In the meantime Jo (our lovely MND coordinator at Adenbrooke’s) had sent me a baby alarm to try out. However, how I’m supposed to make a noise wearing the respirator I’m not sure. In any event. I don’t think, ‘my lovely’ would want to have the sound of my breathing through the respirator and the wireless .all night. What we would probably do is to use that during the daytime with the receiver in the kitchen breakfast room, I should be able to shout into the microphone at my end to attract ‘my lovely’s’ attention.
Â After lunch,’ Paul the computer’ turned up to give Jane a bit of a break and as it was an exquisite day I got them to put me into my wheelchair cycle spent two or three hours garden while Paul tinker around with my laptop. That all work very well as just about the time I thought I would come in, ‘my lovely’ retirement from a triumphant visit for mothers 100th. Birthday in Cornwall. It had been a great success and granite was particularly pleased with the telegram from the Queen in addition to a birthday card from her. I suppose some poor secretary has to spend day after day filling in these cards on behalf of the Queen, as they must be more and more centurions reaching that right old age, everyday of the year.
Much as I appreciated the efforts of all the people who cared for me while ‘my lovely’ and being away, I must admit I was very pleased to see her home as no one understands my needs, and attempts of them as well as she does.
Fortuitously, I received some photographs, the like of which have not been seen since the year Granny was born so it seems appropriate that I should reproduce for the readers. Just click here to see them.As always, be patient as these photographs taken minute or two download.