Been a while and I suppose a lot of what has happened has been happening without me, with Dave in the home permanently since August , I feel bereft and no longer in control of what is happening with him hence the silence.
Today I had a call from the SALT people (Speech and Language Therapy) concerned and involved because of the effect the Parkinson’s is having on Dave’s swallow mechanism). The young girl was reporting back on his ability to swallow and said they were ‘pleased to be able to discharge him’ as the pureed food was being tolerated well and the thickened liquids (the equivalent of mixing polycell paste in your favourite drink- yuk) was helping as he had gained some weight. The fact that the drink now tasted disgusting and he has no choice over whether to drink it or not, is irrelevant, so it is working. Seemingly, once robbed of speech and stricken with the worst symptoms by the dementia condition, he is also relieved of all choices and these are taken on his behalf by others. I feel so bad at holding the control over all of this and I know if he could speak he would be venting his feelings from hell, in all colours of the rainbow and as loud and vociferous as is possible, and it is all so, so unfair.
My visits now take the form of mostly silence, aside from the animations of the other ‘clients’ who have a myriad of conditions and are in varying stages of dependence, and Dave staring blankly or sleeping for the best part of 20 minutes or more still under the influence of the sleeping pills they administer at night.
The carers tell me he needs a longer bed; his feet are touching and pressing on the bed footer and this assists in disturbing him.The bed has high sides like a cot to stop him falling or climbing out but he still manages to scale them and tries hard to sit up or stand outside of the bed, where he no doubt feels trapped. A very nice carer takes time to sit with him and she tells me that he is a nice man because he smiles at her. I feel a strange envy because I see only blank eyes sometimes, no speech, no flicker of interest and I feel like an outsider in my own marriage.I wonder what is going through his mind and how much he really knows of what is happening to him. It upsets me and I shouldn’t dwell on it, I know.
I need to raise this bed issue with the manager, even though they have all told me, it will need my intervention before something can be done.
Life goes on, each visit much the same as the last. I took in some different music, partly because I was fed up with repeatedly hearing the same Carpenters CD urging everyone to sleep incessantly and partly because I wanted to see if he would respond differently. I play a track from the past, a Dean Martin song and miraculously, Dave starts to sing along, it really was strange to hear his voice after all this time. So I spent the whole of that visit singing to him and the carers were joining in, it was a blessed relief from the usual routine.