The door doesn’t buzz for me.

This wasn’t a stick-of-butter-in-July-sun meltdown. No, it was more like a snowman-in-shade-at-34°F.  It had been lurking for several weeks. Things, little things, had begun to pile up when another snag with our long term insurance company turned me into a weepy, hand-wringing mess.

I don’t cry easily or often, but that day my eyes flooded as I stried to decipher the latest problem. As far as trying to deal with this particular issue, I’d bottomed out. I was doubly upset because I knew had to ask for help. For most people, I think, it is difficult to seek help from family or from anyone else for that matter, or even admit to needing it.

Leslie,  Martin and I were at their river place for the weekend. Les knew something was up and asked several times Friday evening if I wanted to talk. I stalled. “Nope, not yet, not now, not this evening, maybe tomorrow,” I said. But it was Sunday morning before I found my voice. I’d planned to leave by early afternoon to visit Peter, so if I were going to talk, it had to be then. “I’ve lost myself” I think I said, or maybe, more accurately, “I’m lost.”

“You. Are. Not. Getting. Alzheimer’s, Mom. You. Are. Fine.” Leslie reacted as she always does when I joke that I’ll probably have to move in with Peter soon.

“No-o, I know,” I said. “I am forgetful and addled a lot of the time these days, but this has been a really terrible year. The stress has finally gotten to me.”

“It has been terrible,” she agreed. And I thought, awful not just for me trying to bear up, or for Peter trying to understand, but for the rest of the family too, especially Leslie and Carolynn. They’re being brave for me. And strong.

I cringe when friends say how well I handle our situation, because a lot of the time I’m coming unwound. As always, utter panic grips me when I’m faced with bills to pay, numbers to compute, or when anything to do with financial matters smacks me upside the head. I’ve always fallen back on the excuse that I don’t do numbers. I do words.

I have no need to fret, but still I do. Luckily, we have good long term care insurance coverage, but unluckily, the company has penalized me for their own ineptitude more months than not for the seven years I’ve filed claims. Last summer, to deal with worsening, inexcusable treatment, I did what I do best: I wrote a letter and sent it to the company’s CEO. In detail and with exhibits, I described the hurdles I’d had to jump to get reimbursed. That letter got results and a phone call within hours. And within two days the nearly 12 thousand dollars owed were deposited to my account. For nearly six months there were no further hassles. Then it started again, and with other niggly things piled on too, the weight of a year’s worth of anguish bore down.

Slowly, but steadily, I began to melt

Leslie rolled her eyes, not at my fragile state, but because I hadn’t mentioned the issues sooner. “Mo-om, this is something I, we, can help you with. You don’t have to do this on your own. You’ve got enough on your plate!” She was right of course.

Well, now that I’ve exposed my distress here, I realize, once again, I shouldn’t not ask for help. Peter is doing as well as can be expected and I am fine as my daughter reminds everytime I buckle, 

When I left Peter yesterday and walked toward the door into the lobby, the alarm didn’t buzz. I punched in the code anyway. Nothing. I tried again then started to laugh at myself. The alarm didn’t go off because I have no ankle band to trigger it. I can just open the door and leave. Hm, not so funny after all.

Header: Snow storm Banff, British Columbia, August 29, 2010.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

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

Cobwebs of a mind.

On the spur-of-the-moment last week, I suggested we go to the DMV to get a photo ID for Peter.

“Why do I need one?” he asked.

“Because your driver’s license isn’t valid anymore,” I said.

“Why’s that?”

“It expired last year.”

“Why?”

“Because you decided you shouldn’t drive anymore. You kept getting lost.”

Inside, I was relieved there weren’t many people waiting. I completed the form for Peter to sign.

“Why are we here?”

“You need to have a current photo ID. You might need to prove who you are.”

He laughed. “Will I get a driver’s license?”

“No, this is only for identification.”

“Whew! That’s good. I get lost when I’m driving.”

“You get lost when you’re not driving,” I said.

“Good one,” he said, and laughed again.

After an hour’s wait, we were called. A nice young man took Peter’s information, then frowned. “Where were you born, Mr. Clarke?”

I waited to see if he would answer. He usually defers to me. A little smile tugged at his mouth and I knew he going to answer in a Cockney accent: “Bouhn in England, in’t oi, mate?” I cut him off quickly. “He was born in London…England. He’s been here on a permanent visa for almost fifty years.”

The fellow conferred with a co-worker. I knew what was coming. “Why didn’t you renew your license last year, Sir?”

“He can’t drive anymore, he has dementia,” I said. But that didn’t fully answer the question. They needed a current photo ID, even though he still looks like the photo on his license.

“Current U.S.passport?”

“He’s a British subject.”

“Current English passport or green card?” he asked.

“Not with us.” So much for spur-of-moment.

He looked at the clock. “If you can go home, get them, and be back before five, I can take care of this today.”

We made the round trip in record time. True to his word, he called us right away, and within minutes Peter had a temporary ID, with the promise that the permanent one would arrive within days.

And it did. When Peter looked at it he said, “Can I drive with this?”

“No, it’s just for identification.”

“Whew, that’s good! I don’t think I should drive anymore.”

For once I didn’t argue.

~ ~ ~ ~ ~

I stumbled across these haunting lyrics  to “Cobweb” by The Coral, an English rock group. If my husband could sing, or if I could, we’d sing this:

There’s a place where the creatures play
I’m going there at the end of the day
Who knows what I’ll find
In the cobwebs of my mind

There’s a face in a photograph
In the attic, beside the map
Closer to the tide
In the cobwebs of my mind

IMG_0753_2

 

 

 

 

From the watch-house to the marshes
Following the signs to Colwyn Bay
And ships from Eagle’s Way

We stick together through the thick and thin
Let’s go out, that’s where I begin
Now I’m lost inside
In the cobwebs of my mind

There’s a place where the music plays
I’ll meet her there at the end of the day
Who knows what she’ll find
In the cobwebs of my mind

When she moves her beauty falls
In the garden the masters call
She knows where I hide
In the cobwebs of my mind

She reads my eyes
She reads my eyes

 

Thinking for two.

He doesn’t worry about things; he just…seems to accept he can just do what he can do and can’t do everything. He’s always been the sort of person who doesn’t think too deeply about things.

I seem to be the one who’s finding it hard because everything as it was in our lives is finished. I’m 58 and I think if I was 70 I’d be more accepting of the situation, but I’m always thinking for two people and I’m exhausted most of the time.

The paragraphs above express my feelings, but I didn’t write them. The writer, Penny, is the caregiver for her husband Harold. They live in Lincolnshire, England, and her article, “Coping strategies,” was on the Alzheimer Society’s UK website several years ago.

I search the web often for ideas that could help us, so when I came across Penny’s piece I felt a certain kinship — Peter is English and I always wanted to be. Besides, Penny understands the therapeutic effects of a cup of tea. 

 

Tea in a china cup and a McVitie's biscuit.

Tea and a McVitie’s chocolate biscuit.

 

It feels like there’s always a next step; something else to think about…going to the day centre, …getting used to the day centre, … going more often, and now…trying an overnight stay and…respite.

For us, it was getting used to the idea of Bill who started taking Peter and Nobby to nursing homes three years ago. Now Bill drives Peter to physical therapy too. Soon, I’ll add more in-home care so that I can have some respite.

There are things I miss, like having someone to discuss things with. We’re having some decorating done at the moment and I might ask Harold what he thinks, but it’s not the same.

Oh yes! In the past year a number of small house repairs needed attention, plus some major things to deal with. Even though I knew Peter couldn’t manage any of them, I wanted him to listen and lend an encouraging word at least. But if I were to say anything he’d be upset because he no longer understands the problems, nor can he help anymore.

So I whine to my daughters and to a few good friends.

I don’t look forward too far, as I would just be worried all the time. 

Penny mentions missing the things they used to do together…caravaning and dancing…but she believes things could be worse.

One day at a time, is the motto I try to adhere to.

There has been more deterioration latterly and Harold relies on me more. But I have to learn to let go each time something is lost.

Harold was only 64 when he was diagnosed, Peter, 71. I think Peter is losing ground more slowly than Harold. What keeps Peter somewhat steady, I think, is that he is now, and always has been, so bloody single-minded, the effects of a separate issue. I never thought I’d be glad that was the case.

I have wondered about giving up work, although [it] gives me a bit of respite. But that would lead to another form of stress as it would affect us financially.

We’ve been retired a long time, and we’re OK financially, but stress related to finances plagues me almost daily. But that’s another post.

Penny and I have such similar concerns — I wish we were on the same side of the pond so we could share a cuppa.

 

Screen shot 2014-09-13 at 11.19.27 AM

©Nikki McWilliams digital print; original painted in tea.

 

Note: There will be more from Penny in another post.

Sources: Living with dementia magazine, The magazine of Alzheimer’s Society UK, and www.alzheimers.org.uk/magazine