Most days I spend at home writing. Working from home allows me many freedoms to care for things around here like caring for Bob as well as grinding out another story or dealing with store business. Thank God I have Julie at The Little Store™ to take care of most matters in town. I honestly couldn't contribute to the store if it weren't for Julie. She's been a lifeblood to me that I can't begin to express in words.
Lately, at home, I spend my days writing and working on store business upstairs from bed so that I can be with Bob. Yes, yes. Joey is right there with me making sure that if I happen to have a snack, he gets some too.
I have been staying upstairs more these past several months because Bob is in decline. His contracture seems more persistent than it did only a couple months ago when he could open his hand and drop imaginary gems into my palm. Now, he can barely get his hands to release those precious gems.
Also, he sleeps far more than he used to. Before, when he was sleeping, when I trotted upstairs, he would wake and stay awake until, probably, I went downstairs again. Now, he has trouble waking up when I show up. He also cannot remain fully awake while I'm with him. Even when I am cleaning, he just cannot seem to stay awake.
Here's what Alz.org says:
It is quite common for a person with dementia, especially in the later stages, to spend a lot of their time sleeping – both during the day and night. This can sometimes be distressing for the person’s family and friends, as they may worry that something is wrong.
Sleeping more and more is a common feature of later-stage dementia. As the disease progresses, the damage to a person’s brain becomes more extensive and they gradually become weaker and frailer over time.
As a result, a person with dementia may find it quite exhausting to do relatively simple tasks like communicating, eating or trying to understand what is going on around them. This can make the person sleep more during the day as their symptoms become more severe.
For me, his sleeping isn't as distressing as it is heartbreaking. It's like he's on this magic carpet ride alone when, in fact, he's supposed to let me on too. He's supposed to take me with him and be with him every step of our marital journey. Does that sound needy? Does it sound possessive?
I am needy and I am possessive with Bob. I'm also super protective and know that my protection only goes so far. At some point, he's going to leave me behind when all I want is to be by his side here and there.
I remember my mom once saying she wanted to crawl into the grave with our dad after he died. Now, I get it. I want to find the tunnel where Bob is heading so that I can follow after him.
The bittersweet of love keeps us loving someone even when their presence can only be felt in the oxygen we breathe or a brush of wind from the weather changing. We have no control over oxygen or wind. Our bittersweet is fleeting and a tad cruel. Like chocolate sitting in a pool of vinegar. We love the chocolate but the vinegar makes us cringe.
I write all the time now about Bob and this thing he has found himself in--this dementia. As writers, you can't escape writing about things you love--the good and the difficult. So far, I've written two stories--one a memoir coming out in November about Bob. And yet, another about Bob. That one is autobiographical fiction with jaunts into magical realism. I got the edits back a couple weeks ago. I'm still finishing up on that one. And another third, that will have Bob as a key character--another memoir--but will focus more on my journey running his precious store, The Little Store™. Both memoirs use humor as a way to deal with the horror of Bob's dementia, a dementia that has wiped his words clean off his tongue. The aphasia may be the cruelest element of Bob's dementia. But the jury's out on that. I'm waiting for a boatload of shoes to drop.
And we must hang in there, mustn't we? We must persevere. We do it for others probably more than for ourselves. We do it for our loved ones, for sure. I know I'm doing it for Bob.
We persist through our pain so that we can be helpful and encourage others. That's important, methinks.
Here's a twofer:
James 1:12 says this: Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
And James 1:1 says this: Count it all joy in times of diverse trials knowing that the testing of your faith produces patience. But let patience have its perfect work. That you may be perfect and complete, lacking nothing.
Like I said, my memoir about the precious time I'm spending helping escort my husband from this life to the next, will be out November 17th (Bob's Mom's birthday). And, yes. If you're wondering do I have reservations about adding something that promotes the story in with something so dear as my life with Bob? Yes. I do. And I wouldn't if this story were not so intertwined with our life. This story is me. This story is Bob.
"After reading, I was blown away by how it balanced raw emotion with a unique twist on time travel. It’s a touching story that anyone dealing with loss or big life changes can relate to. Plus, the writing is beautifully simple yet full of depth." ~Rahki Verma, NewBooksReviewer.com
God bless you all.
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