Floundering

 “Good morning, love.”  I move around the bed to help my Bert out even though he can manage by himself.

“Who are you?”

“Same old me,” I say with a smile.

“Do I know you?” He is teasing me.  He is a master at that.  I laugh and look up.  He must want a hug.

My Bert looks back at me.  The vacancy in his eyes seems more evident today.  More apparent that he sees without seeing.  Perhaps the macular degeneration has progressed, I surmise.  I reject that thought.  His last check-up was better than the previous one. 

I hug him.  “OK now, chop chop, it is club day and Tee will soon be here to get you ready for the day.”

There is no response, no return hug, and no acknowledgement except for a querulous, questioning anxious look.  

Reality is a sucker punch.  I do not want to believe what is slowly dawning. 

My brain is lethargic, refusing to process.  No.  This cannot be.  It is too soon.  My Bert’s brain is being ravished by Alzheimer disease but he is still here.  He still makes me laugh.  He is steadfast, true and reminds me so often that he will love me forever.   Is there love without memory? Forever is not, cannot be today.  Please, not today.

I am a fish, a flounder, perhaps.  There is no graceful sinuous, gliding, smooth movement in my usual element.  There is no buoyancy, rather, I am beached.  Floundering.

I am an open wound.   I am hurting, mentally, physically, emotionally.

My learned mantra which up to now has helped me navigate the Sturm und Drang of caring for a loved one with dementia is a platitude.  That formerly helpful phrase: “It’s the disease; it’s not your loved one,” has become a cliché that has lost all its weight and substance to console.

This is my Bert.   How can my Bert not know me?   In rapid rewind motion I see our entire life together.  The highs and the lows, the ordinary and the extraordinary experiences of lives lived well.  So rich a life; such an interesting journey; I must hold on to that or lose my very self.

My brain tells me this is the natural progression of the disease.  My heart refuses to understand.  My hearts does not have room for this new phenomenon.  I am floundering.  A spectre hovers.  It walks with me and whispers: “Yes, this is your new reality.”  I am walking covered in a veil of sadness which seems firmly attached.   There is no escape.  I fear this will be my constant companion.  It is called grieving.

Another cloak has descended on my shoulders.  I must know me for my Bert to know me.  Even as I note the convolution I realize that as I have been living for two now I must also love for two and be a mirror of myself for my Bert.  It will be a show and tell of our love, our life, our togetherness.

My ship has listed, my world tilted.  The shadow grows.  The light is dimmed.

The Meander: Today my Bert is my Bert.  I am exactly who I am and should be.   All is well. Tomorrow?  Well ‘tomorrow is another day.’  I may be me or who knows?  I may be someone else or no one, whatever the disease chooses.   I know in my Bert’s heart I am forever his Paula. That certainty is my ballast.

Remember: “It’s the disease, not your loved one.”  “It’s the disease, not my Bert.”  Repeat.

18 thoughts on “Floundering”

  1. Dearest Paula, I have no words but these: I am so sorry. I am with you in my heart. You have a big heart, the kind of heart we all aspire to have. You will never know how far you have spread the love you exude in every word. Take it on faith that it is infinite. Wendy xoxo

    1. Andrea, thank you for this heartfelt comment. I am learning that having days when things go well depend on me. We are masters of our fate in large part. I have decided to forge ahead with hope and not look back with regret. I think that will result in more days going well.

  2. Paula, my dear sister friend, What can I say? Please remember dear, how much we love Bert too. We are here, and we will do our best to be the friend you can rely on always. Love you lots.

  3. Well, first off I dont believe you went over board in your post this week. You were merely expressing yourself. So what if you embelish here or there a bit, it’s all part of the story and part of how you were feeling.
    The next thing I want to say is, I know just how you feel, because I have been there once before myself. Lucky me, I get to experience these same feelings twice. That’s my sarcasm kicking in. Lol
    The first time I had a family member with Alzheimers not recognize me, was my grandmother(on my dad’s side) many years ago. I was a young child at first. My grandmothers disease began early for her and lasted many years. Being a kid I dont recall many memories of her but as I got older, into my teens and early twenties; I understood much more. At first she knew who we were when we went to visit her in the hospital(in those days, in the small town where she was born; nursing homes didnt really exist); but as time went on, that changed. Before we knew it, she stopped speaking & had that “vacancy in her eyes” when she looked at us. That blank stare. She didnt know us. It broke my dad’s heart and brought me great sadness. But I knew that was the nature of the disease.
    Now with regard to your circumstance, the dynamic is different; but the outcome the same.
    You are totally correct, reality kicks you in the teeth suddenly when your not ready; that’s life, it dont care. I’m sorry to be blunt but I feel have to be honest with you; as your friend. During these times, you need to lean on friends, family and counselors for support; that will get you through the dark days. Trust me, it will.

    I do have to say, using a flounder fish as a metaphor did make me chuckle out loud. You are the queen of quirky funny metaphors.
    Grieving these losses and adjusting to these new norms is hard, but you are the strongest resilient women I know and I know you can do it. Believe in yourself and have faith.
    You can do it.
    I think I have talked your ear off long enough( based on my long ass response; i just hope I was able to help and offer even a little bit of comfort to you.
    Anyway, till our next post.

    1. Hey there, pal. If you were not blunt it would not be you so don’t be sorry. We are marching in tandem on similar journeys so I expect you to read, react and tell it like it is.
      I am so happy that I do have family, friends, counsellors, other professionals to lean on. I don’t know how I would manage without that support.
      By the way, I think I am more often a dolphin but as I thought about how this development hit me and I floundered I could not help seeing myself as that eponymous fish. Then again you do know I have a humour that is somewhat askew from the norm, whatever that is.
      Thanks for your comment. We can do it!

      1. Hey Paula,
        I’m so glad you found some comfort in my long response to your post. I will admit, I dont always understand your brand of humor as it is unique, but I do enjoy all your quirky metaphors and your humor(when I understand it). This caregiver journey is a long and painful one as you know, but take comfort in knowing your not alone and there is help. That’s how I look at it anyway. Keep fighting the good fight, you have more strength than you know.

        1. Thank you. Much appreciated. It is that weird, quirky, sometimes macabre humour that keeps me going as well as all the fantastic help and the love and wonderful friends.

  4. Oh my darling friend. My dear Paula. There’s so much I want to say and yet the words won’t come out right. Maybe it’s enough to say that as you wrote, I was right there, feeling and seeing every moment, understanding, and loving you both.

    My dear Paula. Sending you warm hugs and strength for this day.

    Love,
    Cynthia.

    1. Cynthia, sometimes words are not enough and sometimes they are more than enough. This comment is more than enough. Thank you, dear friend.

  5. It’s a difficult road you are walking, but you are brave and you will survive. The love you and Bert have shared over the years is still alive and will sustain you both. My heart is with you, Paula.
    Adele

    1. Dear Adele, thank you for your warm and caring comment. You are correct that the love is alive and well. I am depending on that to sustain and strengthen me on this most difficult journey.

  6. Your honesty and bravery fills me with awe. I know your meanderingsin regard to your journey with Bert’s disease will help others as they navigate this difficult journey.

    1. Thanks, Denise. It is my aim to inform, educate, give solace and some comfort to caregivers. I gain so much when I share my own journey. Writing it down in a format that is different from my journal is a form of therapy.

  7. So eloquent. So truly you. It IS the disease; it IS NOT your Bert.

    I have just learned that Dadie Perlov has joined Bert’s community. Three daughters, eleven grandchildren, one great-great-grandchild now join your community. And, in common with you, hundreds and thousands in the shadows.

    You are the torch for the rich life and journey that you and Bert shared and lived. Who now will look after you to makes sure that torch never goes out? The thousands of us in the shadows really care.

    1. Thank you, dear Larry. Yes, I know about those in the shadows as it is their love and care that keeps me going on the dark days. Now I am one of the many in Dadie’s shadow, keeping her in my thoughts with love.

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