As we’ve been travelling the last three weeks, I’ve realised how very lucky we are that, 1. That we can afford to travel, 2. My husband could and would take time off work, 3. We have stayed in some wonderful places, 4. We have been able to visit and meet some wonderful friends, and 5. Living with dementia has not yet stopped us from travelling, nor me from living better than the public perception of people with dementia.
And yet, not all of the travelling experiences are so positive, as being away from my regular routines, and relaxing more highlights a number of significant changes in my abilities, increases in my deficits, and whilst I constantly challenge myself to focus on what I can still do, it is hard to ignore the changes, hard not to miss the disappearing abilities, or the vast amounts of knowledge that have simply gone into hiding!!
This is painful for me, and also deeply painful for my husband to watch.
The one thing I really miss whilst living with dementia is the increasing deficits in my memory, as no amount of it software can rectify or support me. Spellcheck, and my BUB are there for my language, spelling and maths deficits, and various others supports help a number of things, and even though the amount of support required is increasing, I can still find ways to function in meaningful ways.
But, the loss of knowledge of music and composers is perhaps the thing I miss the most, and no amount of support seems to help it. Once, I could play the piano, and read music. Those abilities disappeared some time ago, but my ability, with help, to eventually recall a piece of music was in tact.
The canvas of my musical knowledge is becoming blank.
I am deeply saddened by the loss of my memory of music, and whilst I still enjoy listening, especially to classical and jazz, I no longer can recall who or what I’m listening to. Whilst once, I had a deep knowledge, particularly of those two genres and the sub categories within them. A year or so ago, I was reduced to for example, knowing it was Bach, but not which piece. Now, a new change, is that I cannot tell the difference between Mozart or Mahler, highlighted recently at our visit to two concerts at La Scala in Milan.
This is an extraordinary loss for me, and extremely painful, highlighted in Milan, and leading to many tears and a new depth of sadness about dementia, and right now, I am having trouble not getting lost in the sadness.
Of course, I must, and will rise above this, if at all possible. I am after all, a glass half full kind of girl. But I dread the day when that may no longer be possible, for me, and my dear husband. His sensitivity and insight into the pain of this new depth of loss of knowledge about music, his willingness to sit back and allow me time to lick my own wounds without trying to help, is seriously appreciated. After all, what can he do about it, other than hold my hand, and my heart in his.
Music is, as we know, is an important activity for people with dementia, and can awaken memories for so many.
Right now, it just makes me want to cry a lot.