Category Archives: Alzheimer’s and the Arts

“Florence Foster Jenkins”–An Example of The Elasticity of Marriage and the Caregiving Spouse

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I have learned most of what I know about history and society and morality from reading good novels and watching good movies (I admit I go to TV more for the escape). But fictional portrayals of family care giving in books and movies usually leave me cold. There’s too much sentimentality and nobility, or conversely cold conniving and self-interest.

When I saw Away from Her several years ago, I loved it for Julie Christie’s performance and because it moved me emotionally, but I wasn’t dealing with an impaired spouse myself at the time and accepted the soft focus presentation of  memory loss without question. I suspect that if I were to re-watch that movie  or Iris, based on the loving memoir by philosopher-novelist Iris Murdoch’s never-complaining husband, I might react with a little defensive impatience since everyone in both films  exhibits a niceness I obviously can’t always muster.

I certainly didn’t go see the new Meryl Streep/Hugh Grant movie Florence Foster Jenkins expecting to feel my soul exposed. But, I was shaken by how honestly it captures the complexity of a lopsided marriage in which one of the spouses has become the caregiver for the other.

The movie is about an actual Manhattan socialite known  both for her great philanthropy and for giving hilariously bad public concerts, including one at Carnegie Hall, despite having absolutely no singing ability, let alone talent.

I appreciated that there were none of the dreamy flashbacks or usual movie platitudes about cognitive loss that drive me crazy, maybe because Mrs. Jenkins does not have  Alzheimer’s. However  her ailment, with its own traumatic results, could be seen as an equivalent for the early twentieth century and required her husband to play a role many of us dealing with dementia issues will recognize.

And as good as Streep’s performance is in the title roll—and she is wonderful at making Mrs. Jenkins a real woman rather than an over-the-top caricature—even non-caregiver viewers will probably agree that Grant carries the movie.

Struggling to find my own balance as wife and caregiver, I found myself mesmerized by Grant’s performance as a husband forced to go beyond and at the same time fall short of normal spousehood. Others in the film might approve or condemn the decisions he makes concerning both his wife’s happiness and his own, but as Grant portrays him, the complex layering of his feelings for his wife at any given moment defies simple labeling like selfish or supportive.

And watching this husband try to keep his wife’s world intact as long as possible was painful and true—historically accurate evidently but also  emotionally real and close to home at least to me.

In other words, if you have a chance, go see it. And let me know what you think.

Still Time:                                       A Novel About Shakespeare, Memory and So Much More

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What a lovely surprise I found reading Still Time—an elegant, sharply intelligent but emotionally intuitive novel that happens to have as its protagonist a retired Shakespearean scholar spiraling into Alzheimer’s.

Shakespeare? Alzheimer’s? I admit I opened the book with dread. I am not a fan of issues-centered novels, including issues that affect me, in other words including Alzheimer’s. I dislike books that glamorize victims. I cringe at them when they’re pathetic and when they’re noble, perky, and uplifting. I avoid educational books; even the Alzheimer’s bible The 36-Hour Day left me cold. And I hate preachy books period, whether fiction or non-fiction, whether or not I agree with the basic message, political, spiritual, or nutritional for that matter.

And while I have more than a passing knowledge of Shakespeare, I can’t say that a novel promising to delve into literary criticism of his plays would exactly whet my reading appetite.

But Hegland held my interest in the Bard all the way through—well, there was a bit of skimming in some of the longer winded bits on Shakespeare.

As for the Alzheimer’s bit, Hegland is the first author I’ve read who makes Alzheimer’s both a central element in the novel and a metaphor for larger questions the novel raises about the human condition.

As the novel opens John Wilson is moving into a nursing facility . His beloved fourth wife Sally, who supports him, feels she has no choice. She cannot manage her work as a bee keeper and care for him any longer at home.

While Hegland takes us inside John’s interior world, particularly his rumination and meditations on language, time, and memory in relationship to his enduring passion for Shakespeare—he memorized his first play, Romeo and Juliet when he was 19—she does not pretend to explain Alzheimer’s. We see the shrinkage of his world, the graying and narrowing, but John is a very particular combination of mind and heart, not a generic representative. Not too many folks with Alzheimer’s express themselves most clearly in Shakespearian verse. Not too many husbands on the eve of being institutionalized joke lovingly to their beekeeping wife, “Beauty is in the eye of the bee holder.”

At Sally’s prompting  John receives a visit from his only daughter Miranda (named for Prospero’s daughter in The Tempest). The two have been estranged for ten years, ever since Miranda, then fifteen, accompanied John and his third wife to a literary conference in London. During the trip an incident occurred that scarred father and daughter in ways neither has been unable to share; each has therefore continued to misinterpret the other’s reaction.

So narratives lines from the present and the past twist together. John lives more and more deeply inside his mind, which remains alive to the language and the emotional resonance of Shakespeare’s plays even as he loses track of the concrete world around him. Meanwhile he and Miranda follow the confusing maze of their relationship to its center.

Miranda is not an academic scholar like John, but like him she is a lover for stories. And her talent and passion for video game art offer a provocative consideration of the creative experience and the evolution of creative forms.

At one point Miranda asks John which play is his favorite. Love’s Labors Won, he tells her and of course she thinks he means Love’s Labor’s Lost, but he explains, quite lucidly that Love’s Labor’s Won was actually registered but no copies have been found. Miranda understandably asks it the lost book is his favorite, “Because love won?”

“ ‘Because,’ he says impatiently, ‘it could be anything. It’s what we don’t…have, what we can only imagine. The possibilities.’ ”

Explore the possibilities of Still Time for yourself. I’d love to hear if you found it as profound as much as I did.

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.

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.

The Theory of Alice–A Politically Incorrect Review Revised

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After two back-to-back days of movie going last week, I got fired up to write a politically incorrect review. Something along the lines of:

The Theory of Everything, about brilliant but Lou Gehrig’s disease enfeebled Steven Hawking and his complicated marriage(s), is fairly standard, respectful bio fare but speaks to me about the nuances of living with a disabled spouse more than Still Alice’s Alzheimer’s stricken professor facing her deterioration with noble grit. Alice, like the earnest, follow-the-dots novel on which it’s based, struck me as an agenda film meant to pull heart-strings without making anyone too uncomfortable. All the chestnuts about Alzheimer’s —forgetting words, getting lost, not remembering names, faces, or recent conversations—get represented, but without much density or complexity. While Hawking came across as multi-dimensional, Alice, even in her worst moments, is always noble, essentially intelligent despite her impairment, and Julianne Moore beautiful even at her most faded. I hate the manipulation at the end when Alice’s daughter reads her a monologue and asks Alice what it means so we can hear Alice struggle to respond ‘love;’ hell, I couldn’t tell what that monologue was about. And of course I resented the spouse’s portrayal in both book and movie as a selfish jerk.

So those are the bare bones of the review I was writing in my head when I met my daughter for supper the other night. Just the two of us, a rare treat.

“I saw Alice,” she told me as soon as we were settled in with girl drinks.

“You did?” I asked genuinely surprised. I began to launch into all the things I thought were wrong with the movie. “Ugh, and that speech she gave.”

“I loved that speech.” She also loved the actress daughter who ends up moving back.

“But you wouldn’t move home to care for Dad, would you?”

“If I didn’t have a job and it was Manhattan I might,” she laughed. In fact, she and her husband are planning to move out of Atlanta in the next year, but she’s become indignant whenever I’ve raised the thorny issue of selling our farm when it becomes too much for Ralph and me. Now she added, “Really, I would love it if you and Dad moved wherever we end up. You could babysit.”

“And you could help with Dad.”

We laughed and proceeded to have our first in-depth discussion about Ralph’s condition. About whether Ralph counts as Early Onset Alzheimer’s given that my daughter noticed changes when he was barely sixty long before the MCI diagnosis; about how tense she gets around other people because she sees Ralph’s moments of self-consciousness and anxiety and how it breaks her heart; about how people who have met him in the last ten years, including her husband, don’t realize that he has changed in some essential ways; about what to expect down the road; about my frustrations; about her fear that she might inherit the Alzheimer’s gene (“but I would never have that test.”).

We were honest and respectful and loving. I left the restaurant a little elated, went home and told Ralph what a great time the girl and I had together. Also hugged him in pure exuberance. Moments of intimacy with my kids are hard-won and I will take them whenever and for whatever reason I can.

So as for Forget Alice, forget my griping in the first paragraph.

What a great movie, huh.

“In The Zone”

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Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.

The Arsonist by Sue Miller: Early Alzheimer’s Realistically Portrayed

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I read a lot of novels in the alternative universe where I write reviews for a publishing trade magazine. I try to read as objectively as possible to judge if the author’s language, characters and plot come together in a way that moves, challenges and/or entertains.

Once in a while a novel or story comes along that I can’t help connecting to on a more personal level, and that is definitely the case with Sue Miller’s new novel The Arsonist. The novel is about a small New England town where tensions between summer and year-round residents intensify when a series of suspicious house fires occur. The ostensible heroine is Frankie, a single woman in her forties returning home to stay with her parents at their summer place, and the novel largely revolves around her ambivalent romance with the local newspaper editor covering the fires.

But for me the central characters were the woman’s parents, the long-married Sylvia and Alfie. Though madly in love in the beginning of their relationship Sylvia has become increasingly disillusioned with Alfie, a self-important academic. Frankie has always adored her father and always been piqued by what she sees as Sylvia’s “only-slightly-veiled contempt, or disdain.” The reader is viewing Sylvia and Alfie through Frankie’s eyes, at least at first, and to Sylvia Alfie seems unchanged; but even early on my antennae went up—Sylvia’s protective yet resentful attitude to her husband and his “projects” seemed uncomfortably familiar.

And sure enough, it’s not long before Alfie gets lost driving home along long familiar roads and Sylvia has to admit, to herself at least, that Alfie is “failing, the thing they’d both been aware of in less critical moments, that they’d talked about, gingerly, over and over.” What makes the moment disturbing is not simply that Alfie has forgotten, but that he so quickly turns helpless and passively willing to let Sylvia take over.

I was hooked.

From here until I put the novel down, I found myself skimming through the descriptions of the fires, only marginally interested in the who-done-it mystery or the romantic moments between Frankie and her good-natured new beau. What I cared about with increasing anxiety was Alfie’s gradual but escalating loss of mental capacity and how Sylvia, a highly competent, self-aware woman still young enough to maintain her fully active life, reacted.

There is no sugarcoating or sentimentality here, and no easy solution. Without giving away more of the plot, I promise that Sue Miller captures exactly the reality of being the spouse (or child in Frankie’s case) of someone with Early Alzheimer’s. The guilt, the anger, the protectiveness, the moments of affection and the moments of furious impatience. I didn’t simply identify with Sylvia; I felt as if Miller had excavated my own psyche. Sylvia may be a fictional character, but she is me.