Tuesday, 21st May, 2024

[Day 1527]

Last night was Meg’s first night sleeping alone in her hospital bed which we have located into our repurposed ‘L’ shaped section of our downstairs lounge. When the professionals indicate have you considered a bed downstairs, there are many sequelae to all of this. For a start there are toiletries, clothing, and a variety of cleaning aids and towels to be considered. I am trying to set us a series of little systems each of which is as unobtrusive and clutter-free as possible. For example, I have liberated a little storage box into which Meg’s clothes can be placed ready for the carers to dress her in the morning. Similarly, various washing aids are located in the downstairs bathroom and so on. As it was Meg’s first night alone as it were last night, then I was slightly concerned that Meg might wait up anxious and distressed in the middle of the night and I would not have any knowledge of this. So I set up a little system whereby I have a little portable folding mattress and I know this is reasonably comfortable because I have used it before in the middle of the night. All it needed to make me comfortable given the temperature at the moment was a sheet folded double and a blanket and this was fine during the night. I also brought my clock radio downstairs so that I could drift off to sleep listening to some music and then be awakened with Radio4 coming on at 6.30am in the morning. This little system worked pretty well and I managed to get everything folded up and put away into unobtrusive storage locations. A couple of very competent care workers that I know well turned up at the appointed hour and they gave Meg a good body wash on the bed which evidently is now adjustable to ensure that they are working at a reasonable height. But a body wash requires a certain rolling of the patient from one side to another so can turn out to be a more complex procedure than might be imagined at first sight. Then it was case of utilising the newly installed hoist to get Meg into her wheelchair and then relocated into our Music Lounge so that I could proceed and get some breakfast into her. Porridge in a mug rather than toast tends to be an easier option nowadays and then we were ready to attempt to set forth for the first time in four days. I had found amongst other aids one of those squarish foam cushions in a vinyl case which I think a physio had supplied for Meg at some stage in the past so I thought it would be a good idea to add this to the wheelchair to enhance the comfort of the same whilst I was wheeling Meg first down and then up the hill.

Now the nightmarish part of the day started. The foam cushion which I thought would be a good idea proved to be a bit of a disaster because, as Meg does not possess any ability to seat back in a seat, she gradually slipped further and further forward which meant that her feet were in constant danger of hitting the ground and occasionally did so. This culminated in several instances where I could not propel Meg forwards as she was in a semi-recumbent position in the wheelchair with her feet on the floor. As we were crossing the road immediately in front of Waitrose, the traffic had come to a halt where I was trying to get Meg’s feet back onto the foot stays in order to get across the road. In fact, one of our Waitrose friends observed my plight and came out of the store to offer some assistance as did one of the Waitrose staff. So we consumed our normal coffee but I had to cut our visit short because it was evident that Meg was slipping further down (and none of us can actually move her back up the wheelchair again) The journey back proved to be particularly problematic. One fairly old lady (late 70’s I would say) offered her assistance in trying to get Meg into a more upright position. After I had proceeded some yards further on, Meg had slipped down even more and were feet were plonked firmly on the pavement about a foot in front of the wheelchair. Observing my struggles trying to move Meg’s feet back into a position where I could actually get her home, a passing motorist stopped his car whilst he, and a passing very helpful female helped me to haul Meg back properly into her seat. I took the opportunity to remove the cushion which I judged to be the immediate source of all of our problems and once this had been removed, I managed to make my home without further incident but very slowly. Just as I was arriving back home, the two carers turned up (two being necessary because Healthy and Safety are such that a single carer is not allowed to hoist Meg singlehanded although paradoxically I could do it myself once I have got myself sufficiently conversant with how the hoist works) The carers then take Meg down to her downstairs bed, make her comfortable, and then via the hoist and the transit chair get her down to her favourite armchair in our Music Lounge. The sitting carer came to relieve me so that I could, in theory, go off and do Pilates but after the traumas of the morning, I was more than happy for the carer to keep Meg company whilst I prepared some lunch. I desperately wanted Meg to get some sleep this afternoon bit it was not be. I did, however, go onto the internet and ordered some ankle straps which I hope will serve to keep Meg’s feet and ankles strapped to the frame of the wheelchair the next time we venture out. I have also asked that our doctor refers us on the Worcs Wheelchair Service but whether we meet the exact criteria for this I cannot determine and I have heard, on the grapevine, that there might be an 18 week wait in any case. But one can only ask.