Dementia’s Song

I’d like to share a very personal story with you, one that may resonate with your life experiences if you know someone with dementia.

No doubt this condition takes many routes. Some happen quite quickly. Others occur in a slow ebbing spiral, descending almost without notice, until one day the stark differences become painfully obvious.

It demands a very high emotional price, certainly from the one personally experiencing it, but also from those surrounding them. Watching the progression can be numbing, knowing there is so little that can be done.

Each person living through the changes must face their own emotional challenges, which of course are impacted by physical, mental, financial, and spiritual concerns.

I’m guessing that no two experiences are alike, but that there can be help and healing through sharing. That’s why I’m writing this post. I cannot know what assistance it may provide, but saying it here helps me and I hope it opens some doors for you.

Recently I awoke at 4:30 in the morning with a poem inside my mind, waiting for release, asking to be written. I hadn’t been expecting it, and yet it was there. So, I rose and wrote it down and felt a strong urge to put it into the world.

Here it is.

Dementia’s Song

I hope she knows me today.

My mother sits in her chair.

More than half faded from this life.

I cannot tell if she knows me.

And her stare gives nothing away.

I am left to wonder.

Is any part of her still here with me?

Once so sharp.

Now

With so few words.

Is there any promise for tomorrow

Or is that hope gone,

Like the sun winking out

At the end of the day

On the far horizon?

I wonder

Can I surrender

This fantasy inside of me

That I have any control

Over her staying?

I wonder too

Will her love remain

Here with me

When she finally leaves?

Perhaps that is for my heart to decide.

I want it to be so.

I hope she knows me today.

This was written after I’d visited my mom only to discover she didn’t seem to know me anymore. It left me fully disoriented, my world upside down. How could we have had such a good interactive conversation just the day before? Hours ago, that’s all, just a few hours.

I watch her trying to assemble words into sentences. The words will not come. They are like a skittish kitten hiding under a bed. The more you try to coax them to come out, the further they retreat from you.

Something obvious occurs to me.

I have no control. I cannot do anything to change this. I feel helpless.

And another thing occurs to me. Perhaps she feels the exact same way.

I wonder, how am I to deal with this?

A word shines brightly inside of me, grabbing my attention.

Acceptance.

It doesn’t mean I don’t try to help or be supportive, but it does mean I accept the reality we are experiencing. The wisdom inside this teaches me to accept all outcomes. It alerts me that my suffering is caused by my resistance to accept what is.

It is important for me to feel my feelings, to dive headlong into them, rather than trying to avoid them, even though I know it will be painful. By now, I know that it is far less painful to acknowledge my feelings, rather than a prolonged avoidance or resistance to letting them come into the light.

So, I will try to sit with no expectations and just be with her, accepting what each of us is experiencing and centering in love, as best as I can.