A Darker Day

Alzheimer disease has been called The Long Goodbye.    It is also The Long Grieving.  Over the last few weeks I have watched my Bert lose some more brain cells.  Now I am more instantly aware that it is happening.  That was not always so.  Prior to this it would take some prolonged period of imperceptible change for the loss to be noticed.

One morning he had his yogurt after his sandwich as usual.  The next morning he does not eat it and I ask: “Don’t you want your yogurt today?”

My Bert looks at his plate, his cup, and his knife then picks up the banana peel and says:” Oh, yes, I do.  I want my yogurt.”   He begins to put the peel in his mouth.  I stop him and give him the yogurt.  I do not wait for this to recur.   I know yogurt is now another item that befuddles his mind.  His brain no longer recognizes that so familiar item which has been a part of his breakfast for as long as I can remember.

My Bert now tells me goodnight and says he is going upstairs to bed.  There is no upstairs in our home.  In fact we live in a condo and have always lived in bungalows.  He needs to be reassured that yes, this is our bedroom, yes, this is our bed, yes, I will be sleeping in that same bed, yes we will be sleeping together and yes, Jan, Gerard, Ossie, Wendy, Marg, Meintje and a few more people, all who are already dead will be sleeping with us too.    I offer no correction nor explanation.   If my Bert is less anxious having them with us, well, come on in.

Each day my Bert tells me repeatedly how much he loves me.  I wonder if he is saying it to reassure himself.  Maybe it is just that familiar phrase he has been saying for so long and so often.  Maybe he likes the smile it brings and the:”I love you too.” I know it has not lost its meaning for him nor for me.

I sometimes catch a vacant look, accompanied by an unintelligible mumble.  I wonder what is going on in his brain.  Do the amyloid plaques cause any sensation as they fill up and kill off another cell?   What about the tau tangles? Do they emit any sound as the deterioration accelerates?  There is no indication of pain but I wonder if there is anything, any sensation that tells my Bert something is amiss.  I will never know.

My Bert is entering the late stages of dementia.  I am in the beginning stages of grieving.   

To see the Light you must live in the now, yet I cannot forget what was.   I remember the good times, the fun we had, the amazing life we lived but I am remembering in the past tense as if my Bert is the past.  I censor myself.  My Bert is still here.  There are still moments of absolute clarity and I can see what used to be in the here and now. 

Now I understand the ambiguity of memory.  It can be soothing and at the same time cruel.  Memory is the handmaiden of grief.  The mind of its own volition brings up memories and by definition that means the past.   I am remembering the then, the before and it is making the now unbearable.  The mind and my memories are not static or finite.  Therefore, neither is the grief.  I am grieving the loss of yesterday, last year, our beginning and yesterday.   My memory meanders with the mind’s stream of consciousness, skittering hither, thither and yon and grief is its partner.

My Bert is slowly leaving me.

The Light dims as I contemplate the inevitable.

Imagining the after is unendurable.

There is still some light.  The loss is not complete.  I grieve but do not yet mourn.

Not yet.

The Meander:  My respect and admiration for caregivers is immeasurable.   No matter how special this particular challenge is, the journey is heart breaking.  It tests the will.   It is an obligation made bearable by love.   You have no choice.     I know.  I love.  I hurt.  I am a caregiver too. 

18 thoughts on “A Darker Day”

  1. WOW!!! Paula, you just described a day in the life at my house. Watching my mother forget the familiar every day is truly one of the most heart breaking things. It’s been going on for months now. Each day more of her brain cells die, and the disease takes more of her every day. I have been grieving the loss of my mother for a few years now. The later stages of Dementia are the longest and the hardest to watch. I dont know how I’m going to find the strength to deal with it, but somehow I will have to. All we can do, is hold on to the good memories we do have and draw strength from that, cause that’s all we have left. I wish you strength and luck throughout your journey.

  2. Thank God that you have the gift of writing, Paula, and so eloquently too. From my own limited experience, I know it serves as a valve, if only until the next time. May you be able to keep on writing.

    1. Writing is my release, my therapy and my friend. Yes, I hope can keep on writing for as long as I can and need to do so. Your comment is appreciated, Erma.

  3. You are such an amazing writer Paula, you choose your words so poetically, and it just breaks my heart. I can’t imagine how sad and difficult this all is. But you help me feel it.
    Thank you for your bravery and caring. Thank you for sharing this with us.

    1. Kae, I do so appreciate your comment. Writing has become my therapy and friend. I need to write not only for myself but to share and inform those on this journey and those who may have to travel it. I also want anyone who reads my words to see not only the pain but the power of love to endure all things.

  4. So sorry to see you having darker days – was wishing for longer plateaus… Hugs and love to you both. Let’s visit soon!

    1. The good thing about the dark days is that they do not last and they help me to revel in the Light days which are still many. You know a visit is always welcome. Looking forward.

  5. Ah, Paula. Just saw this by using webmail. Your journey is so sad; I ache for you. Hope to see you both around April 3. I’ll phone in a few days’ time.

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