Right or wrong? Left or right? Here or there?

Thoughts about my ability to live in this new world where I’m practicing to be a widow rattle around in my head like stray coins clanking in the clothes dryer.

When will I, or will I ever, sleep on the other side of the bed. When will I, or will I ever, stop walking around the bed on my middle-of-the night treks to the bathroom, when I could just roll out the left side?

Will I ever sit on the other side of the kitchen table where Peter always sat?

Will I ever be able to clear the cedar closet of the suits he wore to work (once he realized he had to wear a suit to work) or the Burberry all-weather coat he never ever wore, or the cowboy boots we spent hours shopping for in Santa Fe and that were too nice to wear?

And will I ever stop being his caregiver?

The answer to all the above is, probably not. Anyway, Peter isn’t gone, he’s just removed from the life we lived together.

It just wouldn’t be right to sleep on the left side of our bed, or to change my path to the bathroom, or to sit on the opposite side of the kitchen table. And now, even though he’s in a care facility with round-the-clock coverage, his care really is still in my hands. Anyone in care or in hospital needs an advocate because the carers, the nurses, the aides can’t be everywhere, every time, all the time.

But that’s neither here nor there.

I have no choice but to be Peter’s caregiver as long as he lives—or as long as I do—and I wouldn’t have it any other way. I know, if our positions were reversed, he’d take care of me. Oh, he wouldn’t bring me tea and he wouldn’t fluff my pillow, but he would make me laugh.

I’ve learned from my husband how to laugh at myself and life and him, always him.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

The tip of the iceberg didn’t sink the Titanic.

Who would ever think that something as inconsequential as a manicure would be the tip of an iceberg? Somedays I look at my hands — never my best feature — in despair. Nails chipped and split, cuticles like the pithy strips inside an orange.

Lately, I haven’t had time to indulge myself, because during the hours I have help for Peter I have to squeeze in shopping, errands, or all-important time to get together with friends. Yet, I make time to attend to his fingernails. He can’t, or won’t, do it anymore. His nails are strong enough to, well, pull nails, and they’re very difficult to trim. I have him soak his hands in warm soapy water to make it easier on both of us, but he complains and wiggles, although I think he secretly likes it.

And I drag him to get his hair cut and beard trimmed. I’ve tried to do both, but failed. I schedule our appointments back-to-back for my convenience. It’s one less trip, but it does take away from that bit of time for myself. Such a small thing, an iceberg’s tip, but underneath…!

images-1As dementia — Alzheimer’s — continues its march, I know more and bigger icebergs lurk. I already have a list of potential problems that lie ahead. The only thing this caregiver can do is lookout for laughs — lifesavers — and go full speed ahead.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Header: A “berger bit” iceberg in Alaska, September 2006.

Forever — is composed of nows —

For my husband to give me a meaningful card for our anniversary was present enough. But coupled with heart-shaped earrings in a beautiful little box, WOW!  With Leslie’s help — she offered him three choices — he picked the earrings and the handcrafted box to put them in. He doesn’t remember our Boxing Day anniversary, nor how many years we’ve been married, but some glimmer helped him choose perfectly.

When I opened the Leslie-wrapped present, he hung over my shoulder to see what he’d given me and why. “Our anniversary? Did I forget?” I said he hadn’t, and that the box and earrings were what he’d given me.

“I did a good job, didn’t I?” he said. “Did you give me something?”

“I did. That card on the mantle…and shoes.”

“Shoes? You gave me shoes?”

I laughed. “Two pair yesterday,” I said.

“Why?”

“Why did I give you shoes, or why did I give you two pair?

“Yes.”

“”Well, shoes because you’ve been complaining you don’t have any, and one pair because it was Christmas and the other pair as an early anniversary present…”

“Anniversary? Did I miss it?”

“No, it’s today, it’s ‘now,'” I said. I held the box up to show him Emily Dickinson’s line.

He shook his head. “I don’t know what that means.”

Hm, Dickinson is sometimes hard to explain. “It means ‘now’ should be treasured and celebrated, our anniversary, for instance. ‘Now’ means the present…right now…’forever’ is made of all our ‘nows.'”

I don’t think my stumbling explanation made sense to him, but he was pleased that I was pleased with “the present” he chose.

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Birdseye maple box, Mike Mikutowski Wood-working. Lapis lazuli earrings above, Cathy Guss

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Be gentle with yourself, you’re doing the best you can.

Notices for books by, for and about caregivers show up in my email every day. I follow blogs by women  who are caregivers, and by experts who advise them…advise us. The common thread is, be kind to yourself and remember, you’re doing the best you can at a very hard job.

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Monday, Leslie collected Peter at ten for Christmas shopping and lunch. She volunteered for the job. She, and Carolynn too, always lift his spirits and make him laugh with their teasing. I’m sure he enjoyed the day, even though he didn’t remember where they’d been.

After they’d gone, I spent a long hour on the phone straightening out a niggling problem, the sort of thing I despise doing. After that, I thought, I should go to the grocery. But, no, dammit, I would get coffee at Our Daily Bread, a favorite haunt. I’m so glad I did. While I dawdled over coffee and cranberry/orange scone, I read two excellent story drafts by writer friends. Un-in-ter-rupt-ed. I felt a bit guilty that I enjoyed being there without Peter, but I confess, I savored it.

As I was about to leave, a young woman waved from across the room. Stephanie, a gardener friend, worked her way to my table and gave me a hug. “So nice to see you out like this,” she said. “I know how hard things must be, but obviously, you have ‘time off’ today.” She’d just been to Florida visiting her father who has Alzheimer’s too. “I understand what you’re going through,” she added.

Stephanie, with her million-dollar smile and twinkling eyes, helped make my day.

After that, I did get a few things at Kroger’s. While in the card aisle, looking for an anniversary card for my husband, a wheelchair-bound, sweet elderly lady asked me to help her find a Christmas card for a dear friend. I picked out several, but cost was an issue. She really liked an eight dollar one, but wanted something in the five dollar range. I found one with a message she loved. She thanked me over and over.

I hope I helped make her day.

Leslie stayed for a cup of tea after she brought Peter home even though I knew she had lots to do at her house.

She made my day all over again.

This morning, both daughters texted, Today is the shortest day of the year. Won’t be long until time to cut the grass, as my dad always said on the Winter Solstice.

Their reminders made me chuckle and made this day.

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2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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This is the way he makes our bed.

Peter helps around the house…creatively. He can no long fix or build things like he used to, so he’s invented chores and ways to do them.

He scuffs at embryonic maple leaves and tiny pear blossom petals — they hitch rides inside attached to Nobby — off the family room rug with the edge of his shoe, then picks them up and carries them to the wastebasket. Using the hand vac would be quicker and do a better job, but he likes his shoe method.

After I’ve done my weekly run-through downstairs with the vacuum cleaner, Peter straightens the fringe on the rugs, sometimes with the dog’s wire brush, sometimes with a comb, once with my pastry fork!  I don’t care whether the fringe is untangled or not, but the pastry fork is off limits!

My husband has an ongoing obsession with picking up the tiny twigs that snap off the trees. He mounds them into piles in the woods or crams them into an empty birdseed bucket that I dump when he’s not looking. He polishes the kitchen countertops until they gleam, but he doesn’t move appliances out of the way to do it.  There’s no doubt where the coffeemaker, knife block, tea kettle, and mixer live because the unbuffed areas tell the story.

I’m usually up and out at least an hour before Peter is, but when I come back from my walk he’ll have “made the bed.” That is, his side of the bed is smoothed, pillows plumped, spread straightened. My side remains as it was when I crept out — strangled pillows, tossed quilt, crumpled sheets.

When I hang laundry out back, I often ask him to bring it in. He brings his jeans, his shirts, his socks. His excuse for not bringing my clothes, our sheets or our dishtowels is, “I didn’t know you wanted them!”

That excuse, and the novel bed-making, has ASD (Austism Spectrum Disorder, fka Asperger Syndrome) written all over it. It’s nothing to do with dementia.

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Peter charms this lass.

I’ve often said, my husband’s dementia is much easier for me to deal with than ASD. Neither can be “cured,” but ASD sometimes manifests as what I call “The Mt. Rushmore Effect” —stone-faced, remote, cold. And yet, the man I fell in love with all those years ago can be funnier, sweeter, and more charming than anyone I’ve ever met.

I’m sure Peter thinks his ASD is a non-issue since he’s lived with it successfully all his life; dementia, though, has foiled him and he does not go gently.

An excellent “Masterpiece Theater” series*, “Doc Martin”, makes both of us laugh no matter how many times we watch it. The Doc (Martin Clunes) is a highly intelligent surgeon who has a blood phobia and serious relationship issues with his patients, and with Louisa (Caroline Katz), the woman he tries to marry. Although sometimes cringe-inducing, the series is doubly funny to me, first, for its pure comedy, and second, because Doc Martin is my husband all over again. Peter doesn’t see himself, while I relate to Louisa’s devotion to and frustration with the man she adores.

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* “Doc Martin” is also available on Netflix.

 

Times change… years go by…

Thirty-three years ago today, Peter and I married with my daughters, Carolynn and Leslie as our witnesses, and a fellow Ohio University grad, Reverend Timothy Behrendt, as the officiant. Just us, on a snowy upstate New York day. Friends contributed to the raucous party that followed.

Our marriage was a long time in the making — seven years from the magic night we met. A lot of urging by family and friends, extreme measures by me, and a final ultimatum finally convinced Peter. For the past several years, he hasn’t remembered the day at all. When we agreed upon easy-for-an-Englishman-to- remember Boxing Day, we didn’t reckon on dementia moving in.

I wrote the ceremony, and borrowed from several poems, little knowing how prophetic they would be:

You are here, Carolynn and Leslie, to witness and to celebrate the coming together of two separate lives, to join Peter and Judy in marriage, to be with them and rejoice with them in making this important commitment. The essence … is the taking of another person in his or her entirety as lover, companion, and friend. It is therefore a decision which is not to be entered into lightly, but rather undertaken with great consideration and respect for both the other person and oneself.

So today we acknowledge the decision that Peter and Judy have made to share their lives with each other and with you.

Sharing, not at the expense of each other’s individuality, rather sharing by enhancing your own uniqueness through the strength of a common bond. Marriage represents a mutual arrangement in which each is the guardian of the other’s solitude. To affirm the distance between each other is to affirm the dignity of friendship in which each helps the other to grow continually, to be different, and to be alone at times.

Too often love is thought of as the answer to loneliness. Love is put in opposition to loneliness and is thought of as the antidote to the experience of being lonely. “Love, in fact, is a kind of loneliness. Really, to love is always to accept the otherness, the mystery of the other, and to refuse to violate that mystery…

It is a sign of great strength, rather than weakness, to let other people be and not interfere with the choices they wish to make.

Very likely then, the “Highest type of sophistication is love, namely the ability to let that which is different exist and be itself. True, that means an inevitable loneliness —but the loneliness of love is far to be preferred to the togetherness of blandness and characterless-ness.

To experience one’s aloneness is to experience who one is. Real love is the ability to say “no” to everything that seeks to dilute love into a kind of togetherness and to protect us from our solitude, while violating the solitude of another.”

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This year, again with son-in-law Bill’s guidance, Peter picked out a perfect anniversary card for me that read, in part, “Times change, life goes on, years go by …”

Well, ain’t that the truth?

All our lives together, forty years total, my husband has never done schmaltzy cards except for Christmas, our anniversary, and occasionally, my birthday. Now he has to be reminded several times over that those dates are coming up.

I, knowing he doesn’t like “sappy” sentimentality foisted on him, always buy a silly, jokey card. This year the cashier and I hiccuped with giggles at my choice: “Sometimes when we’re lying in bed, I look over at you and think, ‘I am so lucky…’ then you start snoring in that snorty way, and I think, ‘Well, that’s annoying, but I’m still lucky.'”

And I am.

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