Thank you for that Christine. What a long nightmare for you both. Your post proves just how valuable 'awareness' from those who care or are directly involved(partners etc) in this whole area of dementia, truly is. Where clinicians might seem vague or perhaps not really in tune with the sheer depth of day-to-day trauma, simply due to the nature of their regime and possibly not an in depth association with dementia per se, we, as carers/partners see in detail both physical and psychological outcomes/presentations. That is really so very important in any context, especially if and when hospitalization comes into play.
DLB is not so common as AD, but I see it in the Care Home where I work as a volunteer. It often mimicks Parkinson's in respect of movement (as you have shown earlier in your post). They always suggest early diagnosis is imperative for DLB and this must be an irritant for you based upon your own story. I trust you will already have spoken with the applicable specialist, with regard to appropriate medication - a tricky area here. Beyond the pharmaceutical, I have seen positive reactions to music therapy in the Care Home. But as stated earlier, the one-to-one which you will know all about in depth, is very different. In the Care Home one has
both the environment geared to dementia, numerous Carers, the always revealing 'play off' between residents (when what seems to be nonsense, actually works in terms of communication, i.e. dementia world). Night time brings about its own challenges, even if talking about depression (my own direct experience a decade or so ago) as it magnifies and seems prone to a range of symptoms which are subtle and yet profound - they feel very real and yet where do they evolve from? The brain is still largely unknown and a damaged brain moreso. But, as I find almost daily in the Care Home, once you apply 'humanity' to even the most traumatic situation, whether by a hug or simply being there to comfort and calm, it is not hopeless. I mentioned once that as a child I experienced truly terrifying nightmares. My father would come to the bedside, hold my and, often for hours, until I fell asleep, calmed and comforted. Different from DLB and dementia of course, but something basic, primeval, not easily answered nor in need of too much introspection - our humanity. And in those early hours when you are on tenterhooks, probably exhausted and in and out of despair, that might seem rather simplistic, but without that unique human element I feel we are lost.
And again, your posts are so very valuable. You are living the situation with your husband and that truth set down with all the inherent emotion and angst, provides solace and genuine awareness for those who just might have been disregarded or let us say, not taken too seriously in early days, as with yourself.
With warmest of wishes.
