Tag Archives: Alzheimer’s

Alzheimer's River

Alzheimer’s River

Posted on by

Last Sunday, a friend asked me if I was going blog about that morning’s service. The service, billed as “the service with too many river metaphors,” was rich with takeaway possibilities, so why not? I’m sure I can find an Alzheimer’s River in there somewhere.

Two thoughts from the sermon pushed themselves up for me, demanding attention like islands in the middle of a river. Both were spatial: beginning versus end and opposing banks.

Beginning versus end (north versus south)

At the beginning of a river (north for us), the water is fresh, mostly unpolluted. Standing in it, swimming in it, immersing yourself in its currents might be delightful. You would feel the strength of its current even though the river is still simple, young, and unmuddied.

During the southward journey, the river swells with complexities at each bend and through each community along its path, taking on more life, more volume, more pollution, and more mud.

Opposing banks (east versus west)

The waters on one side of a river can be very different from the waters on the opposing side. One side might be turbulent and fast-flowing, the other calm and easy. Your experience in a river depends greatly on where you are in it, not only the clean, calm north versus the muddied, fierce south, but also the turbulent east bank of the river (in our example) versus the calm west.

The sermon was written around social justice analogies and anecdotes, and they were perfectly delivered. I took in all of it, but that wasn’t what I took away.

Alzheimer’s River

I chewed on these two ideas a bit this week: the experience at the beginning versus the end of the river, and how you position yourself along the banks of the river as your journey down it.

Lately, most of my takeaways and metaphoric exploration relate to my mom’s journey, or at least the part of her journey that she shares with me. This sermon was no different.

I can’t take mom back to Minnesota, back to the beginning. We’re deep in the south, entering the mouth of the delta now, where we’re slowly splaying, losing bits and pieces in the dead zone as we work our way to the ocean.

I can’t stop the flow of the river, but I can help her find the less turbulent bank of it.

Last week, mom started cooking and left her pots on the stove unattended three times. At least three because we know of three burned or scorched food incidences. Mom is an energetic, multi-tasker. Even when she was in her thirties, she would get distracted and walk away from a pot on the burner. I reminded dad of the time when I was in high school, and the burned cabinets around the stove had to be repaired. It’s not all about the Alzheimer’s, but the Alzheimer’s makes the situation muddier, mightier, and not in a good way.

Calm waters

I can’t take mom to the beginning of the river, but I can help her drift towards the calmer bank. She loves to cook and we love her cooking. I believe working through tasks, like cooking a meal, helps her do vital brainwork and stay engaged in the present. I want her to keep doing as many things as she comfortably can. Although I can’t be here every day to help her cook, I can help her cook while I’m here. We can cook double and triple meals so that she can label and freeze them for later. When she wants to pull a meal together, she’ll pull out the labeled freezer packs and will feel good about serving food she cooked.

It’s not perfect, and she may pull together mismatched bags, but who cares? Mom and dad can float calmly on the west bank, enjoy a meal she prepared, and chew a little longer on the gifts that she has always given our family.

Into the ocean

I’m not ready for the ocean.

Not much was said about the very last part of the river’s journey, after it passes its most profound point in New Orleans and splays into the delta, spilling all its complex richness and all of its mighty might into the slow, vast, heaving of the ocean. I can’t control the speed of the journey of the Alzheimer’s River towards that ocean, but maybe I can help mom get a purchase in the overgrowth of the banks, pull into the calm waters, slow the journey a bit, share more memories, make more memories, and find more of the joy that this river allows.

©Copyright Pennie Nichols. All Rights Reserved. 2018.
Sit with me

Just Sit With Me

Posted on by

Sunday morning service. Can you sit with me?

What was I scared of?

Last Sunday, the service kicked off with a reading of Dr. Seuss’s What was I scared of?  (Spooky pale green pants with nobody inside ’em.) The service continued with readings from Jesus Christ Superstar songs that sometimes drifted into melody and verses from Jesus’s last days. Children’s stories, humor, songs, and big-little messages. A great service. I paused to tell the guest minister that I enjoyed it on my way out.

The service was good, but I didn’t take personally.

Yet the last words (Just sit with me) sat with me. Even as the Sunday hours ticked off, I could feel the weight of those words. Just sit with me. As I worked my way through the days of the week, my head worked backwards through the service, deconstructing the parts (love, compassion, powerlessness, fear). By Friday, the service was mine. That guest minister was speaking to me.

Keep watch with me. 

That’s all he asked. He didn’t require that they fix anything. They needn’t rescue him from the dark journey. Just sit with me. But they didn’t. They fell asleep.

I get it. Even if they had wanted to do something, what could they possibly do? I get shutting down in the face of fear and powerlessness. But he didn’t ask them to do anything. All he requested was, “Keep watch with me.”

I’ll sit with you.

I feel helpless in the face of the Alzheimer’s bull that bullies my mom.  How can I fix this? I can’t, nor can I change the course of her journey. I can, however, sit with her.

She’s afraid. I’m afraid.

What was I scared of? examines fear on many different levels. Fear of other, fear of difference, fear of change. We’re all afraid.

There is very little I can do, and I know I can’t protect her from that bull, but I can sit with her. That’s something. And perhaps in this situation, it’s everything.

©Copyright 2018 Pennie Nichols. All Rights Reserved

 

Alzheimer's bull

Alzheimer’s Bull

Posted on by

Is it OK to ask? Is it Alzheimer’s?

How’s she doing?, you ask.

The answer depends on how you’re asking the question?

Are you asking about how her days are going?
Mostly OK. Although the answer sometimes sounds like a question: Mostly OK?

Maybe you want to know how she’s feeling?
She mostly feels good. You can hear the white-noise rumble of worry. But she’s happy. Now and then (not every day yet) she has a clap of confusion, fear even. But she mostly feels fine.

Or maybe you aren’t asking how she’s feeling. You mean: How’s her body holding up?
Great! She’s slowing down a bit but she can still run circles around me.

You know that, though, don’t you? She’s always been fit as a fiddle. You aren’t asking about that at all, are you? Maybe you feel a little confusion about what (and how) you’re asking, teetering along the edge of morbidly curious.

You ask, How’s she doing?, but you’re curious about where she is on the Alzheimer’s spectrum.

Is she still driving?
Does she still bake ginger snaps?
Will she know who I am?

You’re confused about what and how to ask, but yes, yes, and yes. Like I said, she’s mostly ok.

She misplaces more things than she used to. Sometimes she repeats her questions. The forgetfulness surfaces most when she’s anxious. Before a gathering at home or an event she needs to attend. Any disruption to her routine, really.

She’s pacing and repeating questions today because I took dad to the ER at 3 a.m. this morning. She’ll probably misplace something before I get home.

Placebo

And how are YOU doing? you might add.
I’m mostly OK.

But I’m not sure how you’re asking that question either.

Perhaps it’s: How are you feeling?
Helpless, to be honest.

Or maybe you mean: How are you helping?
Honestly, I don’t know how to help. I just show up for a while each month.

I’m a placebo. I don’t really do anything. I’m a beneficial effect even though I can’t attribute those benefits to anything I do. I help because mom believes I help. Like a patient who feels the effect of the placebo.

Alzheimer’s bull

Her Alzheimer’s doctor says we’re lucky. Unlike many of his patients, mom is not in denial. She’s facing this with her headlights on, staring deep into the bull’s eyes, fingers clenched around his horns. Aware. She’s a slight thing; the bull is not. She knows her chances, but she’ll make him work for every lucid drop he tramples.

We’re lucky because mom is engaged in her treatment. Mostly lucky. Sometimes the awareness makes her anxious. Anxious because she’s sure she’s about to forget something if she didn’t already forget something.

How’s she doing?
Sometimes, she’s anxious.

Anxiety is a trigger for misplaced purses, repeated questions, and stunted errands (What was I looking for?).

Anxious twirl

The cycle is vicious.

I’m holding Alzheimer’s  by the horns. I don’t want to forget anything. Did I forget something? I feel anxious. I can’t find my purse. Did I forget something? Sometimes I forget but I’m gripping Alzheimer’s by the horns. I don’t want to forget. Did I forget something? . . .

Anxiety is like the picador’s lance in the bull’s back. These picas may provide clues about which side the bull is favoring, but they don’t make the bull weaker. Just more anxious.

A good night’s sleep helps. A steady diet of brain puzzles and predictable tasks deflates the bubble of anxiety. Sometimes I can help. Sometimes more than just by placebo.

Party

Mom turned 80 this month. If you turn 80, you deserve a big party. It’s significant.

Mom deserved a party. But she also didn’t. Expecting a big party would spiral, the bull making hooved donuts, mom holding his horns with all her slight might, spinning through the air dizzily, helpless.

How are you doing? you might ask her.
Who are you? she might reply.

She didn’t deserve the anxiety of expecting a party. So we pretended there wouldn’t be one, until thirty minutes before the open-house (not technically a party) started.

Who’s coming? she asked.
Everyone. I said.

And they did. And the bull didn’t have time to swing her through the air and drop her dizzy in the middle of fifty plus family and friends. She only had time for wonder.

How did you do that?

An Alzheimer’s silver lining? She’s never been an easy person to surprise, but that day we did. The bull was napping as she navigated gracefully through the waves of family and friends who came to greet her on her significant day.

You should have been there.

Changes

Being here on a regular basis, the changes aren’t as shocking.

The change is not sudden, like the one you might feel if you’ve been away for six months or more. And it is sudden. The change isn’t gradual. Yet it is. It’s bull.

The bull takes long naps in the pasture. But events are inevitable and can’t always be a surprise. Events wake the bull. Sometimes suddenly, with a snort. Or it can be gradual, lazy stretches, then a slow spin. Sometimes only slow, but if he feels the pica, he’ll jerk anxiously into a faster spin. I dread the day when there is no spin and he just charges full force. Even a good night’s sleep and a full bottle of placebo won’t help then, but for now, we’re still napping and going for an occasional spin. The changes are sudden and gradual, but not as big as the bull yet.

Corn

Last week we harvested and put up corn. Putting up creamed corn involves several steps as well as some specific timing and methodology. That’s enough to make the bull pound his front-left hoof hard into the dirt, especially since mom’s picky about her creamed corn. This time, we also had the utility-room sink situation.

We need lots of ice.
I already bought the ice. It’s in the freezer.
Where are we going to put it all? I need my sink. You should have fixed the sink.

The bull is beginning to spin her.

I’ll get some big tubs or coolers.
They have to be big. You need to get ice.
The ice is in the freezer.
This is going to be hard. How are we going to do this without the sink?

Once she begins to brush the silk from the ears, the bull calms down. There’s an occasional snort (Those tubs won’t be big enough. What we needed was the sink.), but mostly the bull naps through the blanching, creaming, and bagging, waking occasionally to repeat three or four questions. It’s the planning that sends the bull into a twirl. Busy hands . . . something (I forget) mind. Busy hands are good.

Cutters

At the end of the first corn operation, we cleaned up.

Go on. I got this.

The bull seemed to have been lulled into a deep slumber by the predictable rhythms of blanching, cutting, creaming, and bagging. We would all sleep well that night and start the next day fresh.

It started much the same.

We need lots of ice.
I already bought the ice. It’s in the freezer.
This is going to be hard. How are we going to do this without the sink?

Then the calming rhythm settled over us as we picked, shucked, and de-silked. Inside, we set the blanching pots to boil.

Where are the cutters?
I don’t know. Where did you put them yesterday?
I don’t know.

Twirling bull

That bull wasn’t as deep in slumber as I had thought. We can’t find the cutters. It’s hard, after all, to keep things from flying out of control and out of sight when you’re gripping the horns for dear life. Dad dashed to the Tractor Supply to buy their last corn cutter. We would need at least one to replace the one we had borrowed.

While we searched high and low (literally), mom had turned my blanching pots off.

They’re not boiling yet, she pointed out.
No, you turned them off.
I can’t do anything right today.

My heart splattered on the floor. How do I step this one back?

The pots boiled soon enough. I blanched, and she cut. She decided to use her favorite knife instead of the new cutter.

You didn’t find the other ones yet?, you ask.
Nope. I even looked through the garbage and in the freezer.

Caretakers

Dad only picked half as many ears on that second day, probably a good thing. We were all tired, and dad wasn’t feeling right. That’s the other question you might ask.

How’s he doing?
Honestly, a little less than OK. This is hard on him.

We neglect the well-being of the caretakers. My grandfather (mom’s dad) took care of my grandmother as the bull twirled her in vicious circles. I saw the weariness climb like choking vines up his limbs, around his trunk, as he cared for my grandmother.

How’s she doing? everyone would ask.

I don’t think very many asked him, How are YOU doing?

Go on, I got this, mom said at the end of the second corn operation.

My heart was still on the floor. Why did I stick that extra pica in the bull’s back?

I’m going to finish some work, mom. Then I’ll shower and take you to Dirt Cheap.

Something to throw off the bull and let dad rest a bit.

Salvage stores and recoveryAlzheimer's

Mom loves salvage stores and she brightened when I suggested it.

I hate to shop, but a salvage store isn’t like shopping. It’s more like an adventure, and it’s perfect for anyone who’s been spun for two days by an anxious bull. You don’t have to remember the shopping list. You don’t need a shopping list at all because you can’t know what you’ll find there.

The inside is much like any scrambled mind.

  • Diapers stacked next to bags of pinto beans, next to bottles of Armor All. On purpose.
  • Plastic spatulas, hair clips, rat traps, and shoe laces intentionally hung on the same rack.
  • Furniture in-between racks of dresses and purses.

It’s not necessary to remember where things are because they’re not where you would remember.

We laughed and oooh, look!ed for a couple of hours, hours well spent away from corn cutters, far away from my computer. The bull was sound asleep.

We came home with beeswax foot products, chocolates, paintbrushes, boots, and more. We also brought dinner to dad.

How’s he doing?
He’s mostly OK, but he needs some attention.

What can I do?

They’re watching dad today because the electrical system in his ticker is off a bit. Atrial or one of those flutters. Mom has been pacing since 3am. After spending time with dad at the hospital, I bring her lunch.

You’re a blessing, she says.
No I’m not, I think. I’m a placebo.

I’ll stay here until they release dad tomorrow. He’s doing OK but it’s better to be here.

I’ll linger until he’s home with mom. I don’t want her to spend the night alone.

I’ll sit here, doing nothing really, until the bull dozes off again.

How are you doing?, you ask, maybe a little unsure, a little confused about what and how to ask. 

It’s OK. You can ask.

I’m OK. I’m just trying to be here for mom. For dad too. Trying to pay attention. 

I’m just a placebo, but even placebos can calm an anxious bull.

©Copyright Pennie Nichols. All Rights Reserved, 2018
It's not why I come. It's why I look up.

Uncertain Journey

Posted on by

A couple of months ago, I made a decision. I didn’t have time to do what was involved, but part of the decision was to make the time. I made the time to begin an uncertain journey.

Monthly One-Week Visits

Once a month, for one week, I go to the “farm,” my folks’ place. They live a mere ninety miles away, but due to my long hours and endless projects, months can slip away between visits.

Earlier this year, mom was diagnosed with early stages of Alzheimer’s. Months between visits suddenly seemed unacceptable, so I decided to make a change.

Once a month, I throw a bag of clothes and my computer in the car, and the dogs and I head to the farm. I set up a docking station in the house we rent from my parents and spend a week in our little country home in the water hollow, just down the field from my parents’ home.

I’m not sharing this as a brag. I don’t have a clue what I am doing. In fact, I felt a little selfish at first. Even though I’m working, the visits are a nice break. I don’t have the worries and distractions that pressure me when I’m at home (in the city). I don’t have to feed or coddle anyone. In fact, I get coddled! Mom shows up with clementines and cashews. Dinnertime? I just show up. It’s already prepared.

Am I doing this for me or am I doing it for my parents? Can I make a difference given my ridiculous work hours?through the field

I’ll answer the second question first.

Yes. Absolutely yes.

While I spend most of the eighteen hours I’m awake sitting in front of my computer, I can take a five-minute walk and I’m in mom’s kitchen. I walk up the field three to four times a day, sometimes to join my parents for a meal, sometimes to help mom do something, and sometimes just to visit. But can I make a difference? Just as doubt was setting in, I realized that the insight I gain during the visits and meals are helping me identify ways to help. This is a new journey for us, and although it’s not one I’m thrilled about, I’m blessed and joyful that I am able to be on board for it.

Regarding the first question: “Am I doing this for me or am I doing it for my parents?”

Both. Why shouldn’t it be both?

For me: The visits are self-indulgent. They take me out of my work bubble. I may not work less while I’m there, but I move more, look up more, breathe better air. I have a break from the regular pressures of home, and I get a little spoiled.

For my parents: This is an uncertain journey. The uncertainty is unsettling. I may not know how to help, but I know it helps to talk, share ideas we’ve found, and be present for each other.why I look up

The Magic of Making Time

Remember I said I didn’t have time to do this, but decided to make time? It’s true.

My garden had gone to weeds, the walls in one room need to be torn out and replaced, all of the windows in my house need to be replaced, the shed needs to come down, two ponds need to be dug up and moved . . . The grass and weeds keep growing, the dust and webs keep collecting, the dogs keep shedding, and I can’t keep up because I work ten to fifteen hours a day. I didn’t have time.

What happened when I made time? The list of to-dos didn’t magically diminish, but, magically, I have more energy and vision for tackling that list. I’ll continue to make the time for this uncertain journey, for myself and for my parents.

Enjoy the photos I took on my walks between the water hollow and the main house (it’s not why I go but it’s why I look up when I do).

©Copyright Pennie Nichols. All Rights Reserved, 2017.