The canvas of my musical knowledge is becoming blank

musicAs 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.

31 thoughts on “The canvas of my musical knowledge is becoming blank

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  4. Dearest Kate, thank you for sharing about your loss. For me, I think of this period as a time of mourning. It’s the realization you no longer have the same ability as before. When it is something that you loved and treasured, it is that much more difficult. Give yourself time to grieve. Perhaps during this time you will come up with a new strategy to tap into your remaining musical talents. Thoughts are with you…. MB Big Hugs.

  5. Thank you Kate for sharing your story with us all. I can appreciate how devastating the loss of your relationship to music must be. It must feel as if you saw in technicolour and now it is just a washed out shade of gray. There is no silver lining in this cloud…just loss. I have no words of comfort because I know of none. Yet you are still finding a way for your sense of self to shine brightly from the page. I can feel and hear you loud and clear. I can feel your anger and your courage and your care. That is your own special music, deep in every cell of your Being. That is eternal and can never in it’s core be less than bright and true. A cloud has been pulled to obscure somethings from view but your inner self can never be diminished no matter what waves of destruction wash over the surface. That is what we all must hold to, those who have to live with the stripping away of memory, our own or that of a loved one. I am sending such blessings as are mine to give to both you and your husband. .•*♥*•.

  6. Dear Kate – I love music too but my memory about composers etc has never been great. I just know I love a piece of music when I hear it. Just enjoy the music and go with it. Bron xo

  7. Dearest Kate, I can so relate to everything you have said. You have described exactly how it is!!!! Whilst we were still able to travel, I took Ralph to so many wonderful places, the highlight being Africa (a place he had always wanted to travel to), but like you say, these amazing experiences also highlighted the deficits. Another level of grief and loss. I feel for both you and Pete and send all my love. I know that once you work through this, you will continue the most amazing pathway you have taken in advocating, sharing, showing strength and trying to make a difference. I am not sure if you are already back, but we will catch up when you are. If not, enjoy the rest of your trip, and lots of love. xx

    • Thank you for being there, and our friend dear Jenny. We did not Ralph, but know and love you, and do know you know EXACTLY what we are going through… see you when I get home, mid July xoxox

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  9. hugs n kisses darling kate, you will cry a lot then back into your sunny self dear one i am sure of this. we are counting the days till we see you when you home, keep enjoying the wonderful places you are seeing. love you, xxxxx

  10. Just read your blog dear Kate. I’m feeling very sad for you. Enjoy your trip and especially meeting such lovely people. Max has settled in very well. He is beside me purring as I type my morning emails. Happy travels. Love to you both xx

    Sent from my iPad

    >

  11. Thank you for sharing such a personal account Kate. I’d like to share it with staff because as you know, it becomes too easy to get bogged down in the task based activity in residential care. Little reminders that you’re caring for a Person are so important xx

    • Thanks Rhonda… just now, the pleasure I used to experience listening to classical (not all) music has almost completely disappeared, so I simply have to listen to what does fill me with joy!

  12. I hear you and we send our love and we are thinking of you. It is very hard to accept changes that occur every day at times, but, as you say beautiful lady, what can you do. Frustrates the crap out of me every day, but, then I think about all the positive things you have taught me and that is a reality check for me. Thank you Kate.

  13. Oh Kate. My heart aches with you and for me as I remember Gregory’s losses with music. He was close to a concert pianist with pieces like Ballad #43 from Chopin. This is an athletic piece, with the likes of Horowitz playing as an encore. It took G only five years to master this piece and I enjoyed every note (and clunker) lying on the sofa nearby. When we sold the grand piano that adorned and filled our living room, I cried, Gregory remarked “At least I can still listen to my CDs and have more music than I know what to do with.”

    And music continues to be such an important part of his (our) life. It brings him peace and at times tears of beauty. He can no longer play and no longer knows his Bach from his Beethoven but he is happy and enjoys his music so much. We hold hands and listen to Chopin (among others) and do not need words. Other times he loves being “under his headphones” and disappearing into the music.

    As for your husband, be grateful but do not be sorry for him. It is your path but he has, from his heart, chosen to walk it with you. If that is not what love is all about than I do not know love. I am sure he would have it no other way! It is what he must do. In a joyful way “carried on the shoulders of sorrow,” you are allowing him to do what he must!

    I am sure none of us would have ordered it this way but we do have the choice: lie down and die or hunker down and keep going the best we can! Not really knowing you as a dear friend, I none the less can honestly say, “Kate, I love you and send you positive, healing emerges every day!”

    Fondly,
    Michael

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