Sparked by Words

Perhaps to Dream

 

Sometimes being in a corner feels like you’re trapped in a locked box. Sometimes the road buckles on the way to nowhere and the signs to return home are obscured by curves behind which you can’t identify the landmarks. Sometimes the darkness is so dense that sunlight doesn’t lift the pitch enough for you to see. I’ve been there for the past twelve months or so, maybe even two or three years, getting deeper and deeper into a funk. I can’t write because I’m too tired and overwhelmed by responsibilities over which I have little control and less chance of escaping. The life of another person depends upon me but my own life also demands attention, and there’s only so much of me to spread, to give, to take care of it all.

I haven’t had time to write. Or maybe I haven’t taken time to write, certainly not the amount of time I need to direct to my books. Writing means so much to me, and I still think and dream writing. I scribble my brilliant ideas on scraps of trash paper, and my genius insights snare my attention from the daily tasks at hand. But dawn comes before the sun rises, and dusk finds me anxious and headachy most days. Sleep is illusive and not long enough, and healthy exercise is something other people accomplish.

On the surface this must look like depression but I know it’s not. It’s Life 101 catching me at my heels, surrounding me with the reality check that it isn’t going to end soon, and when it does, it will only be because someone I love has passed. The fanged wolf waits at my door; I don’t know when he’ll lunge. He will though, I know he will.

Someone I love has Alzheimer’s disease. She needs everything an infant needs, except that she continues to regress and to subsume me. Because she cannot speak on her own behalf or assist with her care, the disease having destroyed every essential facet of her executive function. I must act for her, choose for her. I do not fear death, hers or mine, though I fear a vacant life, a lingering death.

I wonder how she can live with no ability to remember anything she once loved, to plan an activity, to anticipate the next day’s events or even the next hour’s. I fear how long this fractured existence might continue because she is old and I am aging. I’m weary. I’m frightened by what I witness of this illness as it destroys so many others with a long, slow crumbling of the brain and body that can only be described as a harrowing existence. Someplace between dark and blank. Barely what we recognize as human – yet they are, and she is.

Alzheimer’s disease demands a waiting room. We wait and we know what we’re waiting for. Regular life is suspended between the what-nows and the emergencies and the bills that still must get paid. The clock stops in the interim between the earlier life where things moved along with occasional crises and temporary high points, and the ordinary moments that filled most days.

Now it’s a steady decline to an end mark I will know by its certainty but still don’t know anything about at all. The interruptions happen, always when I’m unprepared because that’s the job description of interruption: a trip to the hospital, a UTI, a violent outburst, a more precipitous mental decline than the day before. The unexpected events that inhabit well-planned days now doused in chaos and fear.

Yet the hours progress and the calendar page changes. When can I start to live again, to plan around my needs and desires? To write my books and engage in their publication process?

So the New Year’s Resolution I wrote six months ago, End, Begin, Again, the commitment to write as best I could, seems a lazy attempt at humor. It was a snapshot of my giddiness at facing another year with less accomplished than the previous year, and so much that I might do in this new one. I want to write, all excuses aside. I want to paint, to travel, to take classes and learn about some of the many subjects that interest me.

I want more time with my family – my husband and sons, my daughters-in-law, and my beautiful grandchildren, especially the youngest of this special brood as they live 350 miles north of us. We see them rarely, they can’t grasp who we are.

I want to write for my blog and work on my books, then embark on the tough road of submitting queries to agents, and probably of prepping my books for self-publication. Because as I worry and wonder when I can squeeze in a few paragraphs, I hear the clock’s persistent tick and know I must get ready for the next day. It will come and I must be prepared, especially for the unplanned. There is not enough time to write.

 

Except. It’s time for me to get serious about what I can do, to focus on what I must do. Stated here:  Begin again. I will write, no longer wait for endings to grace me the time to get on with my life. I’ll continue as I have for eight years to be at my mother’s side with love to assure her she isn’t alone, making choices to keep her comfortable, being vigilant to keep her safe. It’s what I do and will do loyally to the end but it can’t be the excuse for inaction.

Perhaps to dream I will write.

Watch me write.

I am writing.

 

 

 

Clock and book image courtesy Google images, Pixabay

Man in a boat image courtesy Google images, Pixabay

Sunrise image courtesy Google images, Pixabay

 

 

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Comments on: "Perhaps to Dream" (26)

  1. My heart goes out to you and your mother. What a wonderful gift you are giving her. I know how challenging it is. Poor John’s aunt lived with us—from age 89 to age 97—until she went into aged care for the demented. The last four or five years were taxing but rewarding.

    Liked by 2 people

    • You and Poor John have huge hearts and compassionate souls to note the rewards of assisting someone with Alzheimer’s disease or other dementia. It used to be that cancer was on everyone’s mind as the greatest health scourge – now it’s Alzheimer’s. Praying for a solution of some kind. Thanks for your words of comfort, Peggy.

      Liked by 3 people

  2. Shari,
    Eloquent, hearth felt and heart wrenching post. Your writing about this journey you are taking with Alzheimers is perhaps (in my opinion) more potent, more far-reaching than any novel penned.
    I believe there are reasons we all end up on certain paths. Our lesson is not to squander those experiences but to use them to help others. Whether you write or not you have never squandered.

    Liked by 2 people

    • Thanks, Judy, that validates what I’m doing, both with my mom and in writing. I appreciate your support. You know that I’ve written a novel about some of the experiences of living with someone who has Alzheimer’s. Now to get it published – I think there’s a market because everyone wants answers. Or at least a discussion. So I hope I haven’t squandered what I’ve learned.

      Liked by 2 people

  3. I cannot even imagine what you are going through these days even though my own father had Alzheimer’s. It was my brother who had the duty you have now. I saw a little of how the experience took its toll on him but most I heard secondhand from my mother. I hope you can snatch those tiny bits of time for yourself and enjoy them. You know where I am if you need to vent or need a shoulder.

    Liked by 1 person

    • What a kind thing to offer, Glynis, thank you. I have the support of my husband, sons, daughters-in-law, and four wonderful grandchildren, so I’m only a phone call or short visit from something joyous. Until you are in this journey of being immersed in the life of someone who has Alzheimer’s, you don’t know what it’s like – as you discovered. Sadly, more and more people are finding out. Of course, my mom can never leave. Thanks for being a friend on whom I can count.

      Liked by 2 people

  4. I wonder why it is so common to miss what it is not there anymore, and ignore/don’t appreciate it when it was in front of our eyes… Enjoy your mother, others we cannot do it. All the best.

    Liked by 1 person

  5. Courage, Sharon, and lots of it. Hugs.

    Liked by 1 person

  6. Dear Sharon, I will pray for you and your mother. Write as best you can, and be generous with your self-praise for accomplishing this. And know that you are not alone. Let me know if I can help in any other way.

    Liked by 1 person

  7. My heart goes out to you. You give so much of yourself to those you love. Your mother would be proud. I’m sorry…I just can’t imagine not getting to have the moments with her you so deserve. You’re a strong one. Those grandkids…kids of yours are so blessed to call you theirs. ♡

    Liked by 2 people

  8. so sorry, dear Sharon. somehow we must balance the ‘don’t sqander time’ urge against ‘enjoy today’ – at least for me, the idea of time running like sand thru fingers is something I struggle against, lest it choke away joy. being joyful helps everyone …

    Like

    • I agree that being joyful helps but when you deal with someone who suffers from Alzheimer’s there is no way out until the end. I can’t walk away because I simply can’t. All of us who are family members talk about the incredible stress level. Thanks for your comment, Daal.

      Liked by 2 people

  9. And your experience with this and your advocacy will make your writing even more sublime as only experiences, time and the wisdom that comes from all of this can.

    Like

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