“What have I to do?  Where have I to go?”

Simple questions from a sound mind. Ones we ask ourselves {inside our heads} as we go about daily life planning our day, directing our activities. In contrast, these same queries from a confused mind are complex and disturbing to hear … at least they are to me. These two little questions have haunted me for some time now. It’s not easy to shut out their echoes inside my head.

 

Have you read my other Dementia Daze posts?

If you have, you already have a feel for the intensity of these repetitive questions from my beautiful mother, persistently asking the same two questions a hundred times a day. Sometimes so softly spoken it’s barely audible, a mere whisper, at other times sorrowfully, or blurted out in loud frustration, at times even angrily demanding, but always with a pleading undertone, accompanied with an equally beseeching look in her eyes … piercing at times and always searching for an answer through those expressive icy-blue eyes.

It’s not the words alone and what they suggest or reveal, it’s how they’re asked, the ever-changing emotion attached to her questioning plea that touches me profoundly and lingers with me long after I’m home in Texas with the vast Atlantic Ocean dividing us.

I so miss my mother.

Even when I’m with her, I miss that part of her that’s wandered off into oblivion. I miss our mother-daughter talks. I miss her quick wit and her humor – oh it’s still there in some ways and we occasionally catch a fleeting glimpse of drollery, but mostly it’s just vanished into the bottomless pit of dementia … absconded with her memories and thoughts.

Missing her is one thing! What’s harder to tolerate is the anguish that floods over me knowing SHE misses me and is incapable of expressing it rationally. Texas is far removed from her level of understanding. I can tell, not by her words, but by her eyes, her emotions and the agitation she projects when she knows it’s time for me to go “home”.

It takes all I have in me and all the strength of God to hold myself together as I depart from her and my devoted Dad. What I do know is that Mum experiences intense emotions. She feels the sense of loss when I leave. Though unable to express it, the emptiness is there .. it’s real to her. I guess that’s what disturbs me the most – that she can’t identify or express it, but she clearly feels it profoundly … at least in the moment.

Does the sense of loss linger with her? I don’t know. I pray it doesn’t.

I understand how greatly she struggles to make sense of what’s happening amidst the confusion swirling around in her mind. I cannot even begin to imagine what’s really going on inside her head, not being able to string two thoughts together. No real memories to connect people, places and events. Knowing who I am yet not grasping that I live in Texas … not understanding why I’m not always by her side.  She’s “living” back in the day when I was there with her, as a child or teenager I presume.

I often wonder what Mum’s thinking as she stares out the window? Does she even have thoughts? Is it just blank inside there where she lives? Does she see pictures inside her head? I believe she does, because I’ve heard her describe the fairies. Pretty little things that fly around and carry her away to where they live. “I’m away with the fairies” as she puts it.

I wonder if they are in truth God’s angels? I like to think that. It gives me comfort … and hope.

The dementia is progressing rapidly now. I see it. I feel her confusion and lack of understanding of what’s happening to her, and yet in so many ways she reveals that she knows all is not well – she’s aware that she’s incapable of looking after herself, of not knowing what happened 2 seconds before, or what to do or where to go at any given moment.

What have I to do?  Where have I to go?

I think it’s good that Mum sleeps so much now during the day, as well as all night. With sleep comes a sense of peace and the bewilderment is quieted. I’m grateful for that. My soul rests in that knowledge.

My Pastor friend Jeffrey reassures me that God converses with Mum in dreams, communicates with her during sleep and in quiet moments He whispers to her in a language she can understand. And she transmits back to Him. He knows her mind before she speaks or thinks. He has no need for words. Thank you God!

I feel comfort knowing this. Real conversations with God? In a language understood by both? What a blessing!  When His timing is right, when He has fully prepared her, He will take her home to be with Him, and peace will reign in her mind and her physical body will be healthy and whole again. I SO believe that.

Meanwhile, I am grateful for my Mum and for my Dad. Mum has expressed it often “Dad takes good care of me”. That he does – and he’s done so for 8 years with the help of care givers and others. He has shown indescribable love and devotion to and for the love of his life.

It’s what keeps Dad going now. His passion for painting and other activities set aside, surpassed by a relentless determination to be by Mum’s side until the very end. To her last breath. This is love in action. This is Agape love unmatched. I am touched beyond words and eternally grateful for my Dad, for his undying love for my mother and for me.

I thank our living God for His faithfulness, for His love, His sacrifice that we might be redeemed. I trust God, I place my hope in Him. When I am weak and emotions overtake me, I am reminded HE is strong … and when I rely solely on His strength, His yoke is easy. Then I rest easy. I’m at peace. I can go on. I can face each day with joy in my heart.

Lord God – you’ve got this!

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Read more from my Dementia Daze Collection