Hi all you wonderful people who contribute to this site! My lovely man found his way off the rollercoaster today and lost his battle with CBD or whatever brain disease he had. We celabrated together on our 50th wedding anniversary with a minuscule bit of cake for him, and lots of anticipation throughout the week as I put up old photos and the cards that had arrived. I bought him a card for him to give to me and he managed to leave a small mark inside it with a pen. I read out the one I had for him about all the usual things husbands do that annoy their wives, like leaving up the toilet seat and fiddling with TV remote, the usual sentiments I got in a card for him. The one I chose for him to give to me was full of love and forever, just like his usual ones to me. He spent most of the day asleep and I spent most of it with him, and our oldest son and his wife joined us and we drank lemonade and ate chips and dip and cake. Another son found the cake and I added decorations I kept from the 40th, along with champagne bottle shaped candles and gold candles as I had no time to find a 50.
He was developing aspiration pneumonia at the time and the doctor was consulted by phone as it was weekend. When she had made her examination only a week ago on his arrival, I had quietly remarked to her that what she saw was probably the best he would be. But never did I think he would leave me so quickly!
The pneumonia came about I think because I fed him and it went down the wrong way. His swallowing seemed to get increasingly difficult and gulpy in the week before we left hospital. It was aggravated by a gentle nurse who obviously had not struck CBD before and was in denial of the dramatic change in his new patient over only a few days. He gave my man his meds with apple sauce and did not wait long enough for him to swallow before he added an extra chaser of another teaspoon of apple sauce. In days following, I warned all who gave him thickened fluids to wait for him to swallow and frequently the liquid remained in his mouth without him managing to swallow. He seemed to have lost that ability somewhere along the way, no matter what position he was in.
In all, it was not unanticipated! But the speed was shocking!
Now his suffering is at an end, I have one redundant POA I fought to get in place - and which he signed illegibly a week ago; and a redundant 28 page form to claim a financial subsidy from the government - which I believe I no longer need to fill in, as all will be sorted by his death! He would be so pleased to know he has won the paper war!
My lessons learned. Take time to smell the roses, the herbs, but not the wasp nests! Live each day as if it is your last together! Fight for knowledge of these beastly diseases to be recognised by all doctors so that can diagnose earlier and give others some small chance to try treatments to stave off, or hold back, its progression; and God willing, some specialists will find a way of slowing progression, or stopping it! As they seem to be beginning to in the research mentioned in the Scientific American!
I know you all know this! I don't think it is something I will stop looking for, but I have a few other bits of 'unfinished business' I have to deal with before I can get back to this site again. Thank you for your prayers and support, and above all for your friendship circle around the world!
I hope that my posts and comments are of use to other CBD sufferers and their carers, and that they assist you all to plan, for the most part, ahead of the advances. The experience of each sufferer is likely to be different, but beware all of you of the speed at which it may progress and get help to put legal processes in place while you are able, and any other essentials for your care. This means recognising and accepting what is happening, and not ignoring the progression, however slow or fast it may seem.
Love you all! Thank you for words of wisdom and support along our way. Will keep a watch for your joys and sorrows! And I will spread the word!
Hugs to you all!