Drowning, paddling harder and staying afloat

Many days it feels like I am drowning from the symptoms of dementia, and last night my husband and I were talking about the changes that are taking place again, and the fear we both feel when I might not be able to keep myself afloat. It is not the most comfortable emotional journey, constantly feeling like I am being pulled under the current, swirling around almost out of control, people looking on but basically helpless to intervene. My husband feels helpless much of the time, and I know he also feels like he is failing me not being able to ‘fix’ things. It is definitely a male trait to want to fix things, although I am very much like that too. The notion of drowning might be why I have previously titled my personal story My Unseen Disappearing World, as when you are drowning, you also disappear.

swan2Much of the time, I feel like a swan, calm on the surface but padding faster and faster below the surface to stay afloat. In the Inspector Lynley murder series books, he uses that analogy to describe his mother who he suspects has Alzheimer’s disease. Christine Bryden uses the same analogy in her book Dancing with Dementia, and it perfectly describes what it looks like to others. Some days it is becoming like a mother swan, flapping her wings on the surface to protect her offspring, and the struggle to fight the symptoms of dementia is becoming more obvious to others. The paddling is imperative to maintain my dignity, as it is humiliating to show the symptoms.

This image depicts perfectly why I continue to blog. Blogging is helping me stay connected, it is building up my memory bank, my personal repertoire of stories and activities. It helps my family and friends stay connected to my world, on the days when I cannot easily express it to them. Blogging has also pushed my brain cells, worked my neuroplasticity hard as it constantly forces me to go to the dictionary to look up words, forces me to use a calculator over and over and over, it forces me to review grammar and language in general, the part of my world that has been the most impaired. I always wanted to be a writer, and thinking, writing and then blogging has allowed me to continue to live a positive, actively engaged and meaningful life. And, it helps me keep paddling below the surface, keeping me afloat to stop me from drowning.

17 thoughts on “Drowning, paddling harder and staying afloat

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  5. Your courage and strength are very humbling Kate. If there is any way at all I can assist you to remain a truly lovely swan (myth has it they sing before they die), please let me know. I so enjoy your blogs and the imagery you use to convey the struggle for serenity in the face of something that threatens to dismantle your very essence. Your friends know you will always fight and often transcend the cruel fatalistic advice from doctors.

  6. Kate, you astound me with your ability to sit calmly with your husband, and chart the changes that you perceive are happening in this dementia train ride. Do you have a third party to review what you think is happening?
    My own experience with my wifes journey, and this is in retrospect, was that a number of her intellectual traits were undiminished, while others just literally disappeared. Pharmacological intervention after a delayed diagnosis, certainly destroyed the former and the train sped up after that.
    I guess each and every journey is different, but I encourage you to keep up the blogging because you are good at it, and work like hell on the others and slow that train.

    • Hi Jeff, I think we’d have to say, we don’t sit calmly discussing these things, there is usually quite a storm and lots of tears and questioning. And quite a few ‘why me, why us, why this?!!” But like all storms, afterwards there is usually calm, and for me writing about it helps to clarify things, and see the positives as well. My husband says reading these types of blogs is very upsetting, as it is too confronting, But, he says, they also help him. He was going to respond on the blog, but rang me instead as it was too painful for him. We drift in and out of calm and storms, and all the emotions inbetween! Our third party is usually our children, who don’t live with us any more, so see things from a distance now, often with great clarity. And a couple of friends who know us really well. Thanks for sharing parts of your own journey with your wife too.

  7. You do a great job at stimulating those brain cells – at paddling. Keep going. And in respect of what George Hume said above, and Kate’s reply – you don’t have to have physically met someone to to have been affected by them. I’ve been positively influenced by your tenacity and dedication, for example. Your “never tell me never” attitude. And I’ve never physically met you.

    You call you personal story “My Unseen Disappearing World”.

    I like the phrase “My life ….. disappearing by the day”.

  8. Hi Kate – I agree with George. It is not necessary to have “met” you in real life to admire and respect you and learn so much from your wonderful blogs. Yes, indeed, keep paddling, Kate and I hope the blogs help you as much as they help all of us 🙂

  9. Keep paddling Kate. Everyone who knows you or has even just met you once will hope you can stay afloat for a long time. You are indeed a swan, graceful and hardworking. A glowing example to those of us who can complain of the most trivial aches and pains.

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