1.   Five years ago, I began using a notebook for medical documentation.  My husband went to an appointment with his neurologist.  When he returned, I asked, “So what did he say?”  “I don’t remember,” was the answer. I went to the next appointment and sat with him and the doctor in the treatment room.  The doctor, a man from the Middle East–Egypt, perhaps?–ignored me.  I was part of the chair.  The following visit, I brought a spiral notebook.  Not only did I ask pointed, intelligent questions about the medications  and my husband’s condition, I also took notes.  Surprise! Dr. Egypt’s attitude changed.

The notebook has been a huge help over the years, since my husband sees several doctors now: a different, more respectful neurologist, a psychiatrist, a G.P. and a geriatrician.  I keep track of blood pressure, weight, meds, and recommendations, since my memory can’t always pull up details, especially after five years of treatment.

2.  The next adjustment we made was the whiteboard.  My daughter gave us a small magnetic whiteboard to stick on the fridge.

It helps me maintain my sanity.  I can refer him to the board instead of answering, “What’s on the agenda today?” multiple times in the morning.  The above date shows the impact of the corona virus.  You can see that we’re not doing much.  Still, the whiteboard has been a big help.

 

3.  Me:  Did you take your pills?

Him:  I don’t remember.

Every morning, I set out our meds and supplements before breakfast.  Obviously, this was an important adjustment to make.

 

4. When we sold the house and moved into our apartment, I labeled cabinets and light switches.  These days, I’ll notice him searching the labels to find the cabinet with the storage containers, or the drawer with the foil.  A side benefit arose when my five-year-old granddaughter was visiting.  She said, “I can read this!  It says teas!”

5. Within the last year or two, my husband’s sensing of temperature has altered. He seems unable to judge what clothing is appropriate for the weather. He also needs coaching about which jacket to wear.  I’ve reluctantly taken on the role of clothing police.  Unless I intervene, he’ll wear the same shirt and pants day after day.   Same issue for nighttime.  He’d sleep in his long underwear and pajamas, then sweat through them all.

Some other not-so-great memory lapses I let pass.  Just like with teenagers, you have to pick your battles.

My husband’s memory loss has impacted life in so many ways.  I used to become furious because he kept throwing recyclables into the trash bin, and I had to fish them out.  He still puts crumpled boxes and containers in the trash, and I still fish them out.  The only change is my attitude.  Now I’m resigned to the task.

It’s been tough to adjust to this reality.  I still have moments of rage, despair, sorrow, self-pity.  My caregivers’ group is a great support, and a good source of ideas for making life bearable, and sometimes even better.

 

 

 

Finding a Thin Silver Lining

Here we are, two seniors.  One with dementia, the other recovering from a respiratory infection.  I know I’m vulnerable to any sneeze-born disease.  My husband forgets to avoid touching doorknobs or shaking hands.

We haven’t gone to the gym, or to dancing, or to the library.  My anxiety is extreme.  But something good has come out of this: we’ve begun walking.  Tramping down the Rail Trail seems to be the only safe way to exercise and keep in touch with humanity.  The schools are closed, so a lot of folks are out on the trails.  One senior woman we passed stuck out her cane and said, “Six feet away!”

In our short wanderings, we’ve discovered nature and New Paltz anew.

view off the bridge over the Wallkill River

We’ve encountered auditory splendor as well as visual delights.  The spring peepers are in full voice. Some other frogs with deeper voices (more of a clack than a peep) are also  in a mating frenzy.

This tiny frog, small  enough to sit on a quarter, has a big voice.

The birds are returning and claiming their territories.  Cardinals, robins, redwing blackbirds–we hear them all.  Even a pileated woodpecker banging on a tree.

For those not familiar with our area, the Wallkill River is a tributary of the Hudson River.  The Wallkill is unusual because it flows north, originating in Sussex County, New Jersey.

The Wallkill Valley Rail Trail is 23.7 miles of linear park in Ulster County, New York.

So thanks, I suppose, to the corona virus, we’re getting to appreciate the outdoors.

 

There’s a man in our neighborhood who walks his two white huskies every day.  The dogs are fluffy and clean and lively.  When my husband sees them, or any dog, he says, “I’m glad we don’t have a dog.”

I say, “They’re good company.”  And I feel a bit sad.  Now we live in an apartment complex with a no pets rule.

We did have a dog a couple of years ago, when we still lived in the big house.

We got Saachi, a Jack Russell terrier, because my family, friends and I thought a dog would be good for my husband with dementia.  He could have a routine, go for walks, get some exercise, and enjoy a companion.  Dog therapy.  We chose a Jack Russell because my good friend has an Irish Jack who is a dream dog, cute and well-behaved, and small enough to carry.

Saachi arrived in the fall.  It fell to me to take the puppy out at midnight to do her business.  Of course she was lonely and she cried when we put her in the crate.  I made a nest of towels next to my bed, leashed her to the end table, and she slept there, where I could reach down and reassure her with a pat.

When we started to train her, we hired a special dog whisperer who was quite costly.  He gave the three of us lessons, but my husband couldn’t remember the lessons, and I already felt overwhelmed by my responsibilities.

We considered fencing in part of the yard so we didn’t have to take her out as often.  That was a really expensive proposition: $2000+.  And we still had to worry about the red tail hawks living in the woods, who might fly down and snatch up a little puppy for dinner.

While all this was happening, I was recovering from a foot operation.  When I was resting on the day bed with my foot up, Saachi would lie next to me.  I enjoyed her company.  Sometimes I’d throw toys for her to chase around the bedroom.

Once I was hobbling around, we tried puppy school.  Saachi behaved horribly.  The trainer put barriers around her, to block her view of the other dogs.  It didn’t help.  Saachi barked like a maniac the entire time.  I was flustered and embarrassed.

She was just as bad in public.  We took her into PetSmart and she went crazy when she saw another dog.  The same thing happened when we walked her in town.  We took her to doggy day care, so she could run around with other dogs.

After another two disastrous puppy school sessions, the trainer suggested that she give Saachi private lessons.  The first day the trainer arrived, we all sat in the living room.  “I’ve been thinking a lot about you,” she said.  “Saachi is not a good fit for your life style,” she told us.  “She needs lots of exercise and intense training.”

We knew this was true.

The trainer continued.  “I know a family whose Jack Russell just died.  They have two boys and a fenced in yard.  They’d be interested in taking Saachi.”

Yes.  We let her go.

And when she left the house with the trainer, we fell on each other and cried.    We really loved that dog.

Lesson learned, but my heart still aches when I remember Saachi.

 

 

 

male selkie

I have another world where I go, a world I created almost ten years ago.  The kingdom of Karakesh grew from a small book I wrote for my twin godchildren. Writing about  Karakesh and the characters that inhabit it can absorb me for hours.  At 4:00 AM, when my restless mind is worrying, I often focus my thoughts on the story instead of my concerns.

Most of the main characters are middle school age, as that is the audience for the books I write.  All of them, males and females, seek answers to the universal  questions: Who am I?  What is my purpose?

           In Book I, Tangled in Magic, Agatha’s focus is on family.  Left without parents, her goal is to find her brother.

  Rami pursues her art and vocation as a weaver in Book II.  Miela chooses a solitary life to forge metal jewelry and utensils.

    In Book III,  Prince Emric’s passion is music, but he’s expected to assume the throne.

All these characters contain parts of me, but they are also unique personalities.  They speak, and I listen and record their words.

Writing is the most diverting, fascinating escape for me since my independence has been curtailed by caregiving.  It is enormously important and satisfying to see the work come to fruition.  It also lets me be more than a full-time carer.

My editors at Handersen Publishing and I are putting the finishing touches on Book IV,  Ripples of Magic.  The protagonist in this story is Demara, a girl who is half Traveler, half selkie.  The selkies, or Seal People, are faeries who can shapeshift from seal to human by removing their sealskin. Demara longs to be a selkie like her father.

All three books are available on Amazon.  www.amazon.com/author/ellisk

 

 

I’m a maker of art.  I always have been.  Excluding folkdancing, I’m most happy when I’m working on a project.  Since the onset of my husband’s dementia, I’ve found escape and solace in quilting and writing, with occasional forays into drawing.

Sometimes I coerce my husband into sewing a quilt project with me. 

We made this quilt for dear friends in California.

After mailing that off, I took a couple of days to make placemats for a beekeeper we know.

And today I’ve returned to my big project, a king size quilt for our bedroom.  I should ultimately have 94 fan blocks.  I’m about halfway there.  My workspace looks chaotic, but it’s really quite organized.

More quilter’s tools:

These projects keep me feeling productive and give me focus and satisfaction, rather than wallowing in a caregiver’s emotional stew.

And it’s so much fun to surprise someone with a quilt.

 

My husband is a nice guy. He’s thoughtful and helpful and generous. He has a big heart. In spite of the dementia, or maybe because of it, he’s become even more helpful. Several times a day I hear, “Is there anything I can help you with?” When we’re out doing errands, I’ll think he’s walking behind me and find he’s vanished. In a minute or two, he’ll reappear. “I was helping a woman with her bags,” or “I was holding the door for that mother with the stroller.”

However, he does have his weak points. One of these is his impaired sense of rhythm. Add to that twenty-five too many pounds, difficulty following a dance pattern, moderate memory loss, and you’ve got a guy who is not a dancer.

My husband and I have been going to community folkdance sessions for perhaps five years.  Most of the dancers are over 60.  Some are beginners, and some, like myself, are more advanced.  Many have been attending Thursday dance for longer, and yet still only do the basic, simple dances.

Enter Ari, an experienced dancer with a low tolerance level.  A few weeks ago, he told me that I should tell my husband not to try the harder dances.  I balked.  “Don’t you hold sway over your husband?” he demanded.

I was upset. Normally I back away from confrontation; I abhor and fear conflict. Yet  I called Ari out into the hall and we had words.  Then I cried in the bathroom for a few minutes.  But next time he came to dance, it got worse.

Ari was doing a tricky dance next to my husband, who couldn’t keep up.  “This dance is too hard for you,” I heard Ari say. ” You should sit down.” (Imagine what the world might be like if we told children, “Don’t do this, it’s too hard for you.”)

“Screw you!” my husband replied, to his credit.

Ari huffed his irritation.  He threw up his hands dramatically, drawing everyone’s attention, and went to a different part of the line.

Which is what he should have done in the first place.

To my knowledge, there has always been an unspoken folkdance etiquette: If you don’t want to dance next to someone, you move away.  Simple.

You don’t tell someone not to dance.  This isn’t a performing dance troupe.  It’s a bunch of seniors who love folkdancing.

Two of my friends supported me in confronting Ari.  But his actions had tapped a huge, complex emotional response in me.  I was furious that anyone would be unkind to my sweet-tempered, ill husband.  And I was hurt by Ari’s lack of understanding. This small incident brought out all the anger, sorrow, frustration, loneliness, and guilt I carry as a caregiver, as well as a new protective instinct.

What words were exchanged escape me now.  I was too upset.  I only remember the last thing I said.  “That was mean!” I snarled, as I threw my belongings together and left. My husband trailed after me, totally confused as to why I was so upset and leaving early.

The incident had me in tears on and off for a few days.  I realized that Ari and I had the same desire: to enjoy dancing without someone’s interference. Nevertheless, he “made a bad choice,” as we say to kids.

By report, Ari still doesn’t seem to feel much empathy for my husband, or for me as a 24/7 caregiver who just wants to enjoy folkdancing.  The highlight of my week is being able to dance without having to monitor my husband for an afternoon.  At the dance center, he’s safe, he’s active, and people are accepting and good to him. Well, with one exception.*

I will not give up attending folkdance with my husband.  The experience, though, has scarred me. But it also surprised me, because I discovered how protective I am.  Mother bear, indeed!

Update: Ari apologized.

 

 

 

For the past three years or so, I’ve been searching for an activity that my husband with dementia would enjoy.  In his healthy days, he was good with machines.  He liked fixing chair legs and picture frames in his workshop.  He built bookshelves.  He had a shed full of tools and supplies, from a radial arm saw to a lathe, and a cupboard brimming with boxes of nails and screws.

Two events put an end to his grand projects.  We moved away from the house with the workshop and he was diagnosed with mild vascular dementia.

First, I tried to interest him in sewing a quilt.  Since he liked machines, maybe this would engage him.  I supervised and he measured and sewed.

He made a beautiful quilt that today graces a wall of our living room.  However, that was five years ago.  Now we make quilts together. I do all the measuring and he sews the seams after I’ve set them up for him.  I get the feeling that he’s not really interested and is just sewing to indulge me.

Another activity that I tried was jigsaw puzzles.  I hoped he’d work on them while I was otherwise occupied, doing desk work or writing.  No, he has color weakness, and this made doing puzzles more of a frustration than a pleasure.

Coloring mandalas with colored pencils was a total bust.  So was making cloth baskets.

A friend who is a potter suggested my husband might like to work with clay.  She has a studio and, though semi-retired, still teaches a few students.

When we arrived for our first session, we each got a pound of gray clay.  Our friend showed us how to bang out the air bubbles.  Then my guy dove in. For an hour or more, he shaped the clay.  I’d never seen him so absorbed in anything creative.  This first lesson, he made a cat-like animal.  The second session, he made a coil pot with a lid.

The third time, he rolled out a thin slab and curved it up into a dish that he stamped with designs.

I’ve since wondered what is different about working with clay.  Maybe it is the sensuality of the medium.  Maybe he feels powerful having an effect on a glob of mud, and creating something.  In most other aspects of his life with dementia, he’s dependent on me.    He can’t drive, can’t remember what day it is, or what we did that morning.  I can only imagine how he feels: powerless, frustrated, confused.

Whatever the reason, he loves the clay.  And I’m thrilled to have found a craft that makes him happy.