Tag Archives: anger and joy in Alzheimer’s

The Larry David Cure for Dementia

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LARRY david

It was just turning 8:30 pm. As usual, Ralph was already in bed with the lights out. He goes to bed by eight most nights and will sleep past eight in the morning if I let him. He is genuinely tired, but I also suspect that he doesn’t know how else to fill the time. Neither books nor television hold his interest for very long. Neither does music or the kind lengthy conversation he used to be famous for.

I was in another room half reading the newspaper, flipping TV channels, thinking a little guiltily about a recent comment from Going Gently into That Good Night about the way those with dementia suffer.

Mostly, though. I was feeling sorry for myself over having another long night alone—no need to remember that in my thirties and forties, a night to myself without family would have seemed a gift; that’s another story. Suddenly I stopped clicking.

Because there on some random cable channel was The Larry David Show. Actually an hour and half of Larry David episodes was listed on the schedule. I rushed into the bedroom and turned on our set in front of our bed.

Ralph grumbled when I woke him, but he sat up. After all,

“I am nothing like Larry David,” Ralph said when I reminded him how the kids used to tease him that he was Larry’s spiritual twin,  (Of course they teased me that I was the spiritual twin of George’s mother on Seinfeld) but soon he was sucked in. Ralph began to chuckle. I began to chuckle. Sometimes I had to explain a character who had been introduced earlier, but Ralph had no trouble following the complexity of the wit. We laughed out loud at the same jokes.

The three episodes flew by. It was ten o’clock and Larry was over. Some lame movie started, but  I wasn’t  ready to go to sleep. Miraculously, neither was Ralph.

I switched channels. Another miracle: there was Seinfeld.

seinfeld

And one of the classic episodes. Jerry’s car is stolen by his mechanic; Newman and Kramer try to make their fortune with a mail truck full of recyclables; and George, after being sent briefly to a mental hospital, can’t get a tune from Les Miz out of his head.

“This was fun, wasn’t it,” I asked and Ralph agreed. As he rolled over to sleep, I turned off the television plotting what other comedies we might watch.

Then I tried to sleep, but George’s damn song was in my head.

“Master of the house,” I sang softly.

Ralph hooted. I repeated the line. Soon we were whooping it up like five-year-olds.

God it felt nice. I honestly cannot remember when we last shared such a genuinely good time. No soft-pedaling or covering for memory lapses, no manipulating behavior, no compromising my needs for his, no resenting the limitations of our life.

Just Ralph and me laughing away on the same joyful wavelength.

THE ELASTICITY OF TIME–DEMENTIA AND MY TRIP TO THE DENTIST

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shutterstock_246443827

I was waiting to get a tooth pulled the other day, breathing nitric oxide into my nose while my teeth were held in a kind of vise, when I had an epiphany of understanding…. I realized I was experiencing something akin to how Ralph lives everyday.

Sitting immobile in that over bright, antiseptic office I had nothing else to do but turn inward. And frankly ideas began to percolate. I became completely caught up in my flow of ideas—how to re-organize my novel-in-progress now that my first (Playing Botticelli) is getting re-formatted as an e-book and my second (Inheritance) is out being shopped; how to deal with the HVAC guy who put the wrong size AC unit into my house, causing unspeakable damage; how to organize a campaign against Donald Trump; how to improve this blog. I didn’t care that there was no way to articulate my thoughts or that they flew out of my brain and away like birds from an open cage.

Fifteen passed minutes , maybe five minutes, maybe half an hour while I floated in time. It occurred to me, not for the first time, how expansive time can be when untethered from routine. I was living totally inside my head, and time had temporarily had no weight. I knew the dentist would come in eventually, but I didn’t know when and I didn’t really care. My sense of living in the present, chemically created in the dental chair, may be as close as I can get to what I imagine Ralph and others living with his kind of memory loss dementia experience all the time.

Or I’d like to think so because I like to think that Ralph is experiencing a rich inner life of thoughts and feelings teven if he cannot hold on to them long enough to express them to me.

Last night, for instance, he talked on the phone to our daughter for what seemed to me a good half an hour. Sitting beside him, I watched his face full of animation as he listened to her sort through some issues she is having and offered his advice, as he laughed at things she said and made jokes of his own.

He was so fully involved in the conversation that I was frankly a little jealous, dying to talk to her myself. But I didn’t ask for the phone because it was better to let him be the parent she talked to for a change.I am sure my daughter hung up believing she and Ralph had completely connected.

As soon as he put the phone away, I immediately pounced, asking him the basic questions I knew she’d answered—like whether or not she was going to take the job she was telling him about, and when exactly was she arriving for her visit this week.

He shook his head. “I can’t remember if she said.”

Of course I can get the answers myself from a quick text back and forth. As for the gist of their conversation, and what I really wanted to know….

              “It sounded like a good conversation. Did she seem happy?” I asked.

               He shrugged. “I think so. It’s hard to tell. She didn’t have much to say. We only talked a minute.”

RALPH LOVES TO TALK BUT… PHONE COMMUNICATION WITH THE KIDS

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PHONE

The big issues connected to Alzheimer’s and dementia are almost too hard for me to grasp at this point despite the never-ending stream of factual information pouring off the internet and in the media. It is the small moments that capture what it means to live with memory loss.  For instance:

When I get home in a grumpy mood after driving my daughter through rush hour traffic to catch a plane, Ralph is in his usual spot, the front porch rocking chair, with cell phone to his ear. I head inside without stopping to ask whom he’s talking to.

After all, Ralph has his regulars: one loyal friend who checks in weekly, his sister, and the oldest of our three kids.

He talks to his sister almost every day. Both have a lot of time on their hands. Often they can talk for over an hour. Whenever I ask what they talk about, Ralph shrugs. “Small talk.”

He talks to our oldest son almost every day. If Ralph is laughing, but again, I assume it’s Josh, but again when I ask what they’ve been talking about, Ralph says “Small Talk.”

Our much younger two kids love their dad but they are of the text not talk generation. Their phone conversation with their dad are fewer and farther between.

So I was surprised when Ralph came inside and said he’d been talking to our younger son Jacob.

Surprised and pleased until Ralph added, “I called him but he didn’t seem to want to talk. It was a short conversation. I don’t think he likes me. Was I a bad father?”

This is no excuse, but I was hot and tired when I answered with the truth. “Not exactly but not always very nice. You weren’t very supportive.”

Ralph gave me a heartbreaking hangdog smile. “I wish you hadn’t told me.”

“But you asked.” (I know, I know, I could kick myself.)

“You should have lied.”

By then I was already desperately texting with Jacob: Dad said he called but you didn’t seem to want to talk. / Really??? It didn’t seem that way to me but ok / I made it worse because I said he was kind of mean / LOL

Jacob immediately texted Ralph saying he hoped he didn’t sound “out of it” but he’d just  come in after riding his new bike home from work. Evidently they had talked at length about the bike during their not hour-long but not short conversation.

Of course, then I had to figure out to get Ralph to find the text since he never checks for texts on his fliptop unsmart phone.

I waited about twenty minutes, said my phone was dead, asked him to check his because I was expecting a message from our daughter to let us know if she made her flight. He said he didn’t know how. We looked together.

“No message from her, but look there’s one from Jacob,” I said casually and read it to him out loud.

“Why would he send that?”

“I don’t know. Didn’t you talk today.”

“Maybe so. I don’t remember. But this was nice of him.”

Guilt, angst, manipulation, all for nothing maybe. Or maybe not. Ralph went to bed smiling.

My Vacation from Caregiving–What Every Alzheimer’s Spouse Probably Needs

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I took a vacation from Ralph last week, a road trip through Quebec with my oldest friend. (The photo is Quebec City at night.)Quebec City At Night

Two years ago I cancelled a trip with another friend to Europe just days before I was scheduled to leave because Ralph had an anxiety attack. He had just been diagnosed with MCI and, I realize now, feeling scared about his situation. This time, our niece, who is a nurse, came to stay with her three daughters aged 11 to 21, another nurse friend and my 11-year-old granddaughter. In other words, I could be guilt free about leaving him behind since Ralph was in his idea of heaven: getting lots of attention from  a harem of six charming females without having to leave home. (He did go out for one meal but mostly they brought him back take-out if he refused to accompany them places.)

Of course I did feel guilty anyway. As I walked down beautiful cobbled streets, bought the perfect silver earrings, spent leisurely morning hours reading over croissants and coffee, ate one wonderful meal after another, I could not help asking myself, “Why do I need a vacation anyway? Life with Ralph at this point is just not that hard, especially compared to what other people handle every day.”

Then halfway through the trip my niece texted, “I see why you need a vacation.” Ralph had been asking the same questions repeatedly the way he does when he gets on a jag, and he had been over-feeding the puppy with senior chow immediately after her puppy chow breakfast with predictably unpleasant doggy results. That my niece, a trained nurse, was finding Ralph exhausting was oddly reassuring and empowering. I realized that escaping the daily patience/impatience tension and being able to care for just myself was exactly the break I needed.

The relief I felt was bittersweet. But then I also had to admit another bittersweet reality: that I never much enjoyed travelling with Ralph even before his diagnosis. Our trips together were rarely successful because they brought out certain unavoidable differences in our approach to living. I like(d) to wander and explore. He liked a destination and goal. I enjoy(ed) the adventure of travel, the getting slightly lost, the disasters as well as serendipitous discoveries . He has always preferred to be in control. I even like(d) airports because they’re so divorced from daily life. Airports always made Ralph anxious even before Mild Cognitive Impairment made them overwhelmingly confusing. I used to force him to take trips with me to interesting places. Once we were there, I could seldom relax because I was working too hard to make the experience fun for him.

So much of what I write in my posts implies that I have lost something because of Ralph’s condition, implies a certain marital perfection that just wasn’t the case. I don’t want to idealize our relationship. Coming home I realize I need to face both the reality of the past and of the future. I want to recognize our past for what it was, not with phony nostalgia. Just as I need to recognize the reality of the changes, sometimes small and easy to miss, currently taking place in Ralph  so I can prepare better for the future that is inevitably coming by learning how to work the HVAC, how to spend evenings in solitude, how to travel and enjoy myself in general without guilt. When I come to think of it, I should know how to do all these things anyway.

A Summer Moment

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Here’s a poem for a change of pace. I feel a bit shy posting it here, but It does capture Ralph’s life at this stage of his cognitive impairment better than  a longer explanation perhaps. I have had some trouble with formatting so hope this looks ok….

A Summer Moment

Black birds part the clouds, a river

fast and noisy as Mountain Creek itself

casting its black shadow across the grass.

The noisy rush of wing and throat and beating air

filters through the branches of dogwood and oak.

They come and come and are gone in a rush.

The air goes still.

Out on the porch where you rock and drink beer

the radio talks to you about tornadoes in Texas

and politicians whose name you rarely remember.

The dogs sleep at your feet, their dog breath

thickened by the smoke from your cigarette,

your brain a black river of lost thoughts.

Ralph Makes a Liar Out Of Me–By Reading

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Well Ralph has made a liar out of me (probably not the first time, and no doubt not the last).

In responding to Mary Smith’s comment on last week’s post, I wrote that Ralph doesn’t read anymore. And at the time it was true. He hasn’t read a whole book for several months. Similarly, these days the long newspaper or magazine articles he used to relish don’t hold Ralph’s interest because they have too many facts to keep straight. The kind of serious movies we used to see together are often too convoluted for him to sort and remember now; every one we have seen in the last six months has been “too long and confusing.”

He will still ask almost daily for a book recommendation, put the book by his bedside table, but then let it sit there unopened on the growing pile. Yesterday he asked me if he’d already read some 400-page tome on top of the pile, a non-fiction history I knew he’d begun many times. Instead of going through the motions of pretending that monster read was viable, I had a brainstorm and suggested a very short novella, Ashes in My Mouth Sand in My Shoes by Per Petterson, instead. Ralph sat down and finished it in one reading. A young boy’s narration of his relationship with his father, written with childlike clarity, Ashes turns out to be the perfect book for a man with a short attention span to read (or have read to). Actually, it is a lovely book for anyone to read. Petterson writes about children and about men with startling sensitivity. His other books tend to be quite dark (if wonderful), but Ashes is more elegiac and bittersweet. Ralph obviously loved it.

I have been struggling for a while with the dilemma of how to engage Ralph’s interest and exercise his brain, not with any illusions of curing him but because he still likes to be engaged and the old ways don’t work.

And short stories are, well, short. Plus the emotions and psychology they explore require exactly the kind of intuitive response Ralph remains adept at giving. In fact, if anything, he is more intuitive than he has ever been. So after he finished the Petterson, I gave him Tenth of December by George Saunders. Not exactly light fiction and very serious, but as I said, short. And if he reads the same story over twice, who cares. What’s more, since they are short we can both read them and discuss.

I am pretty excited to discover I was wrong to think Ralph was beyond reading. For now, the choices have merely changed, well changed and narrowed….I have no illusions that the narrowing won’t continue, but  enjoy what we can while we can is my new motto.

An Evening with Ralph and Bob

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Dylan that is.

The other night Ralph and I went to what was at least the fourth Bob Dylan concert we have attended together over the years. And since it was probably the last Dylan concert we will attend together, it was bittersweet. It has often felt as if our shared love of Dylan has been the glue holding us together as a couple despite major differences on politics, religion, childrearing, and who forgot to roll up the car windows before it rained.

Dylan has been a bond with our kids and our extended family as well. Ralph took his oldest son to a concert when he was about eleven and took our daughter when she was sixteen; our middle boy got gypped, especially given that he wrote at least one high school English paper on Highway 61 and looks a lot like Dylan (as do I according to one family joke). My daughter has kept all the vinyl records from our complete pre-1985 Dylan collection, but we still have a framed Milton Glaser graphic that came inside one of the album covers hanging in our bathroom. We also have a limited edition Dylan self-portrait print that my Dylan look-alike son gave us one x-mas and a long shelf of books by and about Dylan that my sister, another Dylan fan, has given us one at a time over the years. My daughter chose Forever Young for the father-daughter dance at her wedding last October, but first she and Ralph went through every Dylan song to find the lyrics that worked best. I am not mentioning all the hours of Ralph singing Dylan or the Christmas get-togethers set to Dylan instead of carols.

Yes, we are just a teensy bit fanatical.

Yet Ralph was not enthusiastic about going to the Dylan concert. He doesn’t listen to music much any more, and he considered getting dressed and driving somewhere (or being driven by me) “too much trouble.” But I pointed out that getting out of the house one night a week is literally what his doctor has ordered in a written prescription—she now writes prescriptions for things like “art lessons” and “no more than three beers a day”—so Ralph reluctantly agreed.

Of course our daughter and her husband were also going to the concert—she wouldn’t marry a man who wasn’t a Dylan fan– so we met them and some of their friends for funky Mexican beforehand. Ralph enjoyed the meal and the company although time and place anxiety kicked in as it does whenever he is out of his regular at-home groove. Fortunately I had reserved parking only two blocks from the venue, but Ralph, who strolls with his dog on the farm for hours, complained the whole five minutes that “we have been walking forever.”

There was a lobby full of people to contend with and the visit to the restroom, which frankly filled me with anxiety because it would be so easy for Ralph to get confused and lost. But all went well and we sat down in our seats just as the lights dimmed.

And there was that small 73 year-old man strutting his stuff and singing, in pretty good voice too, that he is “an artist, I don’t look back.” At other Dylan concerts purist Ralph has not appreciated Dylan experimenting with his arrangements, but this time he didn’t seem to mind  that Dylan only sang four or five songs that Ralph actually recognized, perhaps because he doesn’t remember the originals that well himself. And he loved Dylan’s harmonica riffs and his new version of Tangled Up in Blue. The new Ralph is non-judgmental. He just flows with the experience.

On stage experience and in the audience experience. In the past, Ralph might have been furious at the man in the row in front of us drunkenly spilling liquor everywhere and shouting requests for Isis when he wasn’t making out with his girlfriend. This time Ralph just laughed the guy off as part of the fun, a new story he might tell.

When we joined up with my daughter and her friends for a nightcap afterwards, Ralph told the story he has told ten thousand times, about when he was supposed to meet Dylan. Actually he told the store that night about six times before I stopped counting. For a man who goes to bed by eight every night, he was full of energy. I had to drag him away shortly after midnight. Walking back to the car, we passed a jazz club. Stopping to listen at the door, Ralph announced, “We need to come back here soon and do this again.” I agreed wholeheartedly, thinking what a magical night we’d had, how lucky we had this bond of music and family to remember. Maybe:

Ralph has not mentioned Dylan, the concert, or our night out since.

My Caregiver’s Dream I’d Rather Not Analyze

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My dream:

I am at the beach with children, either my kids when they were still young or grandchildren I don’t in fact have yet. A blue sky and the sound of waves. We are having a good time, digging in the sand and building sand castles, throwing a beach ball. Suddenly I realize I don’t see Ralph. I call his name. Since I know he is not much for going in the water, I wonder if he has wandered somewhere? Then I hear muffled noises, look around and find him nearby buried under the sand—buried head and all so I really only see the shape of him under the sand and really only the shape of his head because he [a Freudian slip typo I just noticed and fixed–I originally typed “she”] is buried vertically. But somehow those words are burbling up through the sand. When I scoop the sand away, he is still breathing and talking as if nothing is odd….

How vivid and obviously meaningful this dream is. When I woke up I knew exactly what it meant and how it tied in to Ralph’s Early Alzheimer’s. Then emotional self-preservation  set in and blocked my analytic powers. Now I literally cannot remember what about it seemed so important. But let me try to face, here in real time, why the dream scares me on so many levels:

My panic at Ralph’s initial disappearance

How much fun I was having without him

The indistinguishable noises that were his attempt at words

Ralph buried alive

My power to scoop the sand away

Ralph’s nonchalance after I dig him out

My annoyance that he doesn’t notice and keeps on talking

Ralph’s muffled life

 

Lessons from Laury

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I recently wrote about finding the film Still Alice a less than satisfactory portrait of a family dealing with Alzheimer’s. Well,  I just watched a wonderfully honest documentary Looks Like Laury, Sounds Like Laury from the PBS series America Reframed. Laury, a wife, mother and former actress in NYC, is filmed by a friend from before her diagnosis–when friends weren’t sure if they were imagining something was wrong–through the growing realization that dementia has taken root.

Of course, Laury’s situation is not exactly like Ralph’s or mine, or yours or your loved one, because no two cases are the same. The very idiosyncrasy of Laury is what rings so true. And the reactions of Laury’s friends and family (including her little girl’s articulate best friend since kindergarten) show not only how difficult it can be for those of us who are intimately involved, but for those who are less intensely involved but who care.

Sometimes I find it hard to know what to share with friends and acquaintances. And frankly interactions can be awkward. But as I have been learning, the support and understanding of friends, even casual friends, can be crucial.

Thanks to https://annahnemouse.wordpress.com for writing about the documentary on her blog and giving the link http://video.pbs.org/video/2365437114/, which will evidently expire on April 10. I highly recommend watching while you can.

Flowers and Laughter, Ralph’s Perfect Gift

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Ralph's birthday flowers

These are the roses Ralph gave me for my 65th birthday.

Sixty-five feels like a biggie. Like everyone I know my age (except Ralph who has been saying “I’m an old man” to explain his cognitive impairment since he was, well my age) I don’t feel old. Physically I am in good health; I get plenty of exercise and, despite from those pesky escaping words and names, keep myself mentally challenged. But at 65, the fact of no turning back is staring me in the face. I have begun worrying about my sight and hearing, about the limp that still plagues me 18 months after my broken ankle, about a certain timidity that has crept into my driving. To say I’ve been obsessing about this birthday would be putting it mildly.

But then again I have obsessed over birthdays  for as long as Ralph and I have been together.

And with good reason. For most of those forty odd years, my birthday has been a day of recrimination, guilt, and tears. He almost never remembered unless one of the kids reminded him and he was terrible about getting me a gift or arranging a dinner out. I started winding myself up in a knot of resentment days ahead so by the actual day I was impossible to please anyway. One year I locked myself in the bedroom in tears rather than eat the Kentucky Fried Chicken he’d picked up as my last-minute birthday meal. But with age come a little wisdom and more patience. Also small miracles.

Since Ralph was diagnosed with memory loss, his memory has actually improved in one area, my birthday. In fact birthdays, like Christmas and our anniversary, highlight the ironic upside of our life with Early Alzheimer’s—Ralph has become an overt romantic. Boxes of candy and flowers appear magically on the big days without prompting (at least none I know about). And I have found appreciation for his effort comes much easier, especially since I have embraced planning the celebration myself (this year, because it was a biggie—the end of middle age, the beginning of Medicare—has included dinners with friends and dim sum, both attended with Ralph, plus a trip to visit my son in New York by myself since Ralph is no longer willing to travel)

So yesterday morning, I lounged in bed drinking the coffee Ralph had made me when he walked in the bedroom with a bouquet of roses plus a card. I’d guessed he’d been out present buying the day before when I caught him driving into the driveway in his truck, and I have to say the fact that he picked out a card was probably more meaningful that the flowers. But they looked lovely, the reddest roses I’d ever seen. I couldn’t believe he’d found them at Kroger’s.

Proud of himself, he went off with the flowers to find a vase. But he couldn’t find one–I used to blow glass so there are vases on every flat surface in our house–so I reluctantly got up and found one for him him. Then he couldn’t get the flowers unwrapped. So I took them from him.

“They’re not real.”

“But they were in the flower cooler at Kroger’s.” He felt the petals and considered. “You know I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed. “Well these will certainly be a gift that lasts.”

“Yes they will,” I agreed.

“I thought it was funny that they didn’t have a scent. I was hoping that soaking them in water all night would bring it out.” He laughed a few minutes later. “Well, at least these will certainly be a gift that lasts.”

“Yes they will,” I agreed again.

We must have laughed together for half an hour. And again telling the story to our friends at dinner, especially after a friend suggested to Ralph, “Put them away and give them to her again next year.”

And again when another friend admitted she had a sunflower at home that was suspiciously fresh after three weeks and she better get home and check it.

And what makes the laughter delicious and the story one we’ll keep telling is that it could have happened to anyone, not just someone with cognitive impairment or Alzheimer’s related memory loss.

I have to admit, this has been the best birthday ever, or at least since I got that brownie camera when I was six.