Magic pills? Wonder drugs? Snake oil?

She’s his advocate, his ears, his caregiver. She’s an attractive blonde, late forties perhaps, who takes care of her father in a new tv commercial. They look alike and maybe they’re really related. Perhaps it isn’t a made-for-tv reenactment.

The spot promotes Namenda (memantine hydrochloride) XR, a medication long prescribed for people with moderate to severe Alzheimer’s. The new extended release (XR) version, with seven additional milligrams of the active ingredients, offers once-a-day convenience. Used in combination with another commonly prescribed drug, Aricept (acetylcholinesterase inhibitor, AChEl), the two may keep symptoms from worsening, at least for a while.

This is one of those commercials that urges you to ask your doctor about this drug for your loved one. An announcer gives the laundry list of side effects: nausea, Screen shot 2015-01-31 at 5.05.22 PM_2vomiting, diarrhea, constipation, loss of appetite, dizziness, tiredness, weight loss, swelling in hands or feet, fast heart rate, easy bruising or bleeding, unusual weakness, joint pain, anxiety, aggression, skin rash, redness or swelling around eyes, or urinating more than usual. Makes you wonder why you’d want something that might add to your loved one’s misery. Frankly, I think all those “ask your doctor” commercials should be banned, but that’s a post for another day.

Peter has taken both drugs for more than five years with no side effects. His neurologist asked recently if I thought the meds were helping. “How would I know?” I said. She shrugged.

The commercial oozes warm fuzzies. We see the concerned, loving daughter, her young children, and her sweet-faced father who is included in their activities, but who seems vacant, absent. “All my life he’s taken care of me,” she tells us, adding that it’s her turn to take care of him.

All well and good, and we love her for her dedication. But, jeez, am I alone in wondering why we never see the caregiver’s frustration? Neither medication is a cure. The best science can do is slow the disease for a while.

And what can science do for caregivers? Is there a magic pill for us?

If a camera were mounted in a corner at our house, it would record smiles, yes, and silly laughter, but it would also record heated talk, lip-biting, teeth-gnashing, hair-pulling, and tears behind slammed doors. The camera would see me trying to read, uninterrupted, for fifteen minutes. It would see someone else cooking, cleaning, making appointments, counting out pills, and making endless cups of tea to sooth upsets, his and mine.

Oh yes, I know there is help for some of those tasks, but I can’t—won’t, not yet—delegate most of them. Our wedding vows weren’t the traditional ones, but I did, “…promise to honor and tenderly care for you…through all the changes of our lives.”

A camera would also see the occasional enveloping hug, and Peter asking, as he always does, “What would you do without me?” At my eyebrow-raised, tilted-head glance, he would change his question to, “I mean, what would I do without you?”

And, as we always do, we’d laugh at his little joke. Truth is, I often don’t know what to do without him.Screen shot 2014-09-13 at 11.08.38 AM

Header photo: Peter and I at river’s edge, 2014.

2016 National Society of Newspaper Columnists’ contest finalist. 

Memory loss associated with Alzheimer’s reversed for first time

I found this  post on Mark Wheeler’s “Seven Spheres” blog. I’m forever reading about all the facets of this huge umbrella under which we live — dementia. I grasp at any straw. The fact is that Peter is nearly 77, set as solidly in his ways as if he were cast in cement, and stubborn to boot. I’d love to try the methods described in this article, but I don’t think he’d go along with it, nor would I have the strength or patience to keep prodding. But by reblogging Wheeler’s post here, I hope at least some of my caregiving followers can glean help from his words and the research behind them.

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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2016 National Society of Newspaper Columnists’ contest finalist. 

Another good thing.


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For years, my husband has had bouts of hiccups that sometimes last for days. And sometimes his hiccups predict when he’s going to have a very bad head cold.

Such was the case a few weeks ago. Violent hiccups started in the evening, and by the next morning he could have starred in a Nyquil commercial — sneezing, coughing, aching — with hiccups thrown in for good measure. This went on day and night for four days. None of the usual “cures” work, not drinking from the opposite side of the glass, holding his breath, a scare, nor a spoonful of sugar.

Occasionally the hiccups stopped and I’d hope they’d ended. But I didn’t want to say anything lest I jinx him. “Doesn’t your chest hurt?” I asked midway through the ordeal.

“No, why?”

“I just think hiccuping so often would make your chest hurt.”Screen shot 2014-11-05 at 10.37.59 AM

“Hiccups? I don’t have hiccups!” he growled.

I shut up because, in that case, not remembering was a good thing. Never mind that in an hour they’d start again.

Stop.

 Start.

STOP!

The following week he didn’t remember the horrible cold nor the hiccups, and if his chest ever ached, he didn’t remember that either.

Sometimes, not remembering is a good thing, right?

Check … imagesor  not check? Screen shot 2014-11-05 at 5.27.36 PM

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

Give us this day.

The other morning we went to a favorite spot, Our Daily Bread, for coffee and pastries. While I waited for Peter to finish drooling over the cases of beautiful cakes and cookies, I watched a man about my husband’s age wandering alone near the cashier’s line.  He kept his eyes on a woman at a table across from ours, and finally he made his way towards her.

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Photo, Our Daily Bread.

After we finished Peter said, “I could eat another one, couldn’t you?” I ignored him, as I always do, and he laughed, as he always does.

We exited near the table where the man I’d noticed earlier sat quietly. The woman, obviously his wife, stood behind him, arms extended over his shoulders, slicing a croissant into manageable bites. She never stopped chatting with her friend, and he never seemed to notice he was being helped. She was doing for him what she’d probably done for their children when they were toddlers.

I thought, how lucky we are that Peter is still able to help himself, most of the time, so far.

Header photo: Butterfly visit.

2016 National Society of Newspaper Columnists’ contest finalist.