Alzheimer's · Book Review · family

The Benefits of Rust

Remember when I said I would be rusty trying to write again? I was feeling that rust this morning as it seized up my writing gears.

Today I wrote a whole post, deleted half of it, wrote a little more, made a meme, considered dropping the whole thing in the trash, and then decided to just stick it in a draft folder. Here’s the meme, though —predictable

Then I looked back to see what else I had written on this day in history.

Five years ago, I had written a book-review-ish post for a fellow blogger, Christine Grote. We had started blogging about the same time and visited each other’s blogs fairly often. Each of us was dealing with Alzheimer’s — me with my mother and her with her father.

We cross paths with so many people, especially in the blogging world. When I visited her blog today, I felt like I was visiting a long-lost friend.

Here’s part of what I published 5 years ago —

Dancing in Heaven — a sister’s memoir is a tender story of growing up with a severely handicapped family member.  Christine’s sister, Annie, was so developmentally handicapped that doctors predicted she wouldn’t live past the age of eight.  Through the love, devotion and tireless care from the whole family, Annie lived to be 51.

Christine weaves into the story the onset of her father’s Alzheimer’s.  That’s what I had been following on her blog.  Before Alzheimer’s, however, she had interviewed her parents about life with Annie.  When she asked her father if he had any regrets, he said,

“The biggest regret I’ve got of the whole thing is that she cannot speak.  Everything else I can deal with pretty much as it comes along.”

As I read that part, I felt a catch in my throat.  His Alzheimer’s has taken away his ability to speak.

Alzheimer’s seems to affect people in very different ways.  Some symptoms are universal — the loss of memory, for example.  But my mother has not lost her ability to verbally communicate.  She can be sharp-tongued and nasty.  She can definitely communicate.

2017 note: My mother did eventually lose the ability to communicate. She rarely spoke near the end, and when she did, it made little sense.

Christine’s father has fallen into a silent world.  He doesn’t speak often.  As I read his quote about regrets in Dancing in Heaven, I remembered one of Christine’s posts about a communication break-through they had experienced using a whiteboard, Resolving a Quandary.  How much more meaningful that post became knowing how precious that ability to communicate was to him!

Thank you, Christine, for your beautiful memoir.  It is sweet, gentle, and encouraging.

In the intervening five years, Christine’s father passed away as has my mother. Today, when I visited her site, I saw that she had completed her book about her father, Where Memories Meet.

I guess rust can sometimes be a good part of the adventure. It made me slow down and help me reconnect.

I can’t wait to read her book.

family

Moving On

“He was my mentor,” she said to me as she gave me a hug. “If there’s anything — really anything — I can do, don’t hesitate to call.” She was a woman doctor, a little older than me, who had known my father for many, many years.

I couldn’t respond. My eyes well up with tears at the slightest provocation these days.

This past Sunday in church, I stood in the communion line behind an elderly couple, he supporting her down the aisle, waiting for her to dip her bread in the cup and get it into her mouth before he took his. I felt the tears.

Then it was my turn. “The body of Christ broken for you,” said the pastor as he extended a chunk of bread toward me. My friend held the cup. I think she said my name as I dipped the bread. I was too busy trying to blink back tears to really hear.

Christ’s ultimate sacrifice of Himself, remembered every time we eat the bread and drink the cup, is echoed in the smaller self-sacrifice of the couple in church and the multiple self-sacrifices I saw as my father cared for my mother over the last years of her life.

When she thought that he was her father and argued with him about waiting for her date to pick her up for the dance, he seem unfazed. It had to have hurt — his wife not recognizing him and waiting for another man.

When she wouldn’t sleep in the bed with him — she sat in a chair all night, because there was a strange man in her bed.

When she served him inedible foods.

He patiently coaxed her to do the right things and kept her safe from the wrong things.

He learned to do new things — laundry and cooking — that had been her domain.

He finally made the difficult decision to place her in a nursing home.

Then he visited her every day. Twice a day.

These days, I have so many people offering advice.

“Just march right in and stand there with your arms crossed,” one person said as I told him about a deplorable incident at the nursing home where my father is staying for rehab.

“You can’t bring him home yet,” another person said. “You need to take care of you and get some help set up.” And she is so right.

“Isn’t it time,” asked another friend, “to think about permanent placement?” No. No, it isn’t.

My father was my mentor, too. He taught me what it meant to care for the elderly. Partly through having me work at a nursing home when I was young, but mostly through his example, his constancy with my mother.

When I hit a roadblock these days, I try to think, how would he handle this?

I can’t ask him anymore. That hurts just to write it down. But his advice-giving days are past, and it’s up to me and my siblings to figure this out.

How do I care for an aging parent? One who argues and cajoles and insists that he’s fine. One who falls and faints and forgets how to shave. One who all his life has cared for other people.

I think that the answer is one day at a time.

Looking too far down the road is scary.

For now, I’ll work to get him home again, and then work to care for him. One day at a time.

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At the Fenimore Art Museum this summer

I began this blog when I was helping to care for my mother. It was my formal extensive education in elder-care, given by the best teacher, my father.

Now, I’ve taken the fallen mantle. My role has shifted to becoming the primary care-giver.

And I need to set Hot Dogs and Marmalade to rest. Over the summer, I have felt this blog hanging there, waiting, waiting.

But I can’t write about him.

Not here.

Not now.

A to Z Blogging Challenge · poetry

Trolls

I have a little troll who likes to visit me;
The pleasure that he gets from it is more than I can see.
He crawls out nearly monthly, from underneath his rock,
And writes a little comment full of unkind ugly talk.

I’ve tried to just ignore him. I’ve notified police,
And pastors, friends, and family. I’ve asked that he just cease.
He changes names like t-shirts in an effort to conceal
His identity but there’s no doubt — this troll is very real..

Father Thomas, quite by accident, kicked a nest of trolls.
They railed at him (IN ALL CAPS) ne’er retreating to their holes.
They summoned other uglies, who joined the angry mob
In giving Father Thomas quite the hatchet job.

But Thomas preached forgiveness – and his words gave me a chill —
“Forgiveness,” he said wisely, “is an act of your own will.*
You may desire justice, but mercy may be better.
Dismiss the debt that’s owed you and forgive the debtor.”

I wanted to ask Thomas — “Does this apply to trolls
Who threaten and attack you and seem to have no souls?”
I knew what he would answer. At least, I had a guess —
Trolls are really humans. God does not love them less.

Created in God’s image. His breath, their breath — and more,
His mercy for their troll-ness, their awfulness He bore.
So daily now, I pray for him — this troll who visits me —
That from the hate which binds him he would some day be free.

*****

Father Thomas is Thomas McKenzie, an Anglican priest who blogs at thomasmckenzie.com. An audio of his sermon on forgiveness can be found here: Making Change, Part Five of Five

*What he actually said was, “This is just Christian ethical consideration for what you do in the event of trespass… Forgiveness relieves the tension in the ‘mercy versus justice’ option.”

A to Z Blogging Challenge

Love in Action

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Laity Lodge cacti.  The cactus “protects itself against danger, but it harms no other plant…” (from “The Power of One” by Bryce Courtney

L is for Love in Action.

Well did Monty Python choose a rabbit — the Rabbit of Caerbannog — to protect.

The retreat at Laity Lodge was put on by the Rabbit Room, an online community modeled after Lewis and Tolkien’s Inkling community that met in an Oxford pub in a room called The Rabbit Room.

The denizens of this online community now refer to themselves as rabbits. Unlike many online communities, Rabbit Roomers have multiple opportunities for flesh-and-blood meetings via events like Hutchmoot, the Laity Lodge retreat, and concerts.

A group rabbits yesterday turned into Rabbits of Caerbannog when I shared with them that “Joan Jackson” has continued to comment on my blog, although now all her comments go to my spam folder.

Below is their response:

It has come to our attention that repeated attempts have been made to shame and silence Sally, the author of this blog.

It is sad that bitterness could turn into something so consuming. If this weren’t such a damnable waste of time and resources, it would almost be comic that two elderly people would spend their last golden decades on planet earth acting like silly teenage girls. How foolish the human heart grows while seeking revenge. If there weren’t so much to be pitied about this sort of behavior, it would be laughable.

However, because this problem has persisted, Sally’s friends have decided to take action. Below is our plan.

First, we have offered to manage the spam folder for this blog. From this point forward, Sally will appoint a friend to manage her spam. The new manager of this folder will scan the first few lines of every message and immediately delete anything slanderous. No matter what is written in those messages, we will assume every single word to be false. We will not be shocked, and we will not be shaken. Anyone cowardly and immature enough to send anonymous messages over the internet has immediately lost all credibility in our eyes.

Secondly, as a team, we are committing to doing one act of goodness and grace in the world for every negative message received. For each attempt these attackers make to shame our friend, we will make something beautiful or healing for someone in need. Every venomous or poisonous post will result in tenderness and generosity being carried out by a team of friends who knows the wonderful woman that this blogger really is.

Hatred will be turned to laughter. Shame will be turned to healing. Darkness will be turned to light. And all of this will be done in a manner that not only turns evil to good, but that multiplies goodness exponentially. We will do this because this is what God does with broken places; he turns them around and makes them beautiful.

We praise God for this opportunity to stand in the gap for our dear friend. We also hope that a strong and definite stance will help our friend’s abusers move on with life. We stand about her as a shield, accepting her as she was, loving her as she is, and excited about who she is becoming.

Sincerely,
Friends of the Blogger

Like the Rabbit of Caerbannog, they will stand as my protectors.

Unlike the Rabbit of Caerbannog, their actions will not be destructive, but healing.

I couldn’t ask for better friends.