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.

I thought I had everything arranged.  An older gentleman acquaintance would come each Sunday to keep my guy company while I went to my writing group.  He seemed like the perfect fit: a learned yogi with many interesting stories and experiences to share.  We all got along well.  And as he was living on a small income, I would pay him to visit for a couple of hours.

Yes, I could leave my guy alone for three hours, but that brought on feelings of guilt and worry.  I know what he does when he’s left alone: he dozes, watches PBS New Hour, reads a bit, does a crossword puzzle, and scours the kitchen for anything sweet.  Is this so terrible, you ask?  No, not bad for an hour, but three hours is too long for my comfort. His brain, already dulled by dementia, seems to sink deeper.  He’s an extrovert and he thrives on company and activity.

Me, I’m an introvert, as I’ve mentioned in an earlier blog.  I’m also a writer, and writers need to talk, listen, and exchange with other writers.  I carve out the three hours on Sundays for myself, working with three dear writer friends.  We write, we read, and I learn from them, as they are often more informed and literate than I.

Yesterday, disappointment slapped me sideways when the yogi companion let me know he wouldn’t be coming on Sundays anymore.  “It’s too depressing for me,” he said.  “I can’t do it.”

I almost wept on the spot.  Oh, don’t I know how depressing it is to spend my days with someone who used to be lively, alert, with a wide-ranging mind and healthy body!   Where did that person go? I was awash in self-pity.  Those feelings that lie just below the surface came bubbling up: anger, sorrow, frustration.  And envy.  What would it be like to up and say, “I don’t want to do this anymore.” And walk away.

But I can’t.  I won’t.  And so I begin again my search for a Sunday companion.