Tag Archives: Between MCI and Alzheimers

The Theory of Alice–A Politically Incorrect Review Revised

Alzheimer's and the Arts, , , , , , , , , , , , , , ,

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.

Pure Ralphness Now and Then

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Sometimes I think Ralph is more like himself now than he was before the cognitive impairment, that some essential Ralphness that was covered up by ambition and testosterone has emerged—a more thoughtful, family centered, openly vulnerable Ralph. The Ralph I always wanted to believe was hidden under his tough exterior but almost never saw.

But sometimes I think some essential Ralphness has gone missing and that I am living with a stranger. A trivial example: A few days ago I was working out the seating arrangements for our Christmas dinner. How to organize folding tables of various sizes in order to fit 25 people around one table in a 12×14 foot dining room requires a lot of geometry. Geometry is not my strong suit, while Ralph has always been a genius at spatial thinking. So after struggling with small rectangles of graph paper for two hours, I begged him to help. He had absolutely no interest. Even when I warned him that I would be moving around tables, including his beloved handmade pine table, he stayed calm and passive. When I told him there might be a hole in the center of the “table” I was creating, he surprised me by sweetly offering to cut me a piece of plywood to cover with foil to use as a hot plate.

On one hand I was relieved. For most of our marriage I could not make a decision about where to hang a picture or place a chair without being second-guessed. And “second guess” was sometimes a euphemism for harsh criticism and/or barked orders. Now I have free reign; whatever I choose he embraces.

On the other hand, I used to argue back at Ralph’s second-guessing until we came to some kind of creative if anger-fueled consensus. His logical, practical mind balanced my intuitive, impulsive one. Now I have to pick up the practical, logical slack, and I don’t like it.

Well that’s not completely true (nothing in dementia, or life, ever being that black and white or clear-cut). I am proud of myself for mastering my new skills. But increasingly I also feel weighed down from carrying the weight for two of us—always having to consider what Ralph needs as well as what I want.

And then there is the emotional shift in our relationship. The shift actually began in the years before his diagnosis—our marriage went through a wonderful honeymoon period about five years ago, as he became a gently more loving husband. Now he is so overtly dependent and openly grateful that I find myself a little condescending. But again, no black and white here, because I always thought that Ralph was more dependent on me than he could admit just as I was more dependent on him than I could admit, so we balanced each other.

And here’s the rub. It’s not that our balance is off now—although it often is lopsided—but that it’s different. I find myself secretly missing what I used to hate and hating what I used to miss about Ralph. But what I love about the new Ralph is that the man who used to scrutinize every decision in even more minute detail than me now doesn’t bother over-analyzing the future or the past. Instead he is learning to embrace the good moments and let go of the bad, whether mountains or mole hills.

Post script: I began this post almost a week ago. A few days ago our numbers changed and the tables needed rearranging. Ralph was suddenly the enthusiast, helping open and folding tables, figuring and re-configuring. And when we all gathered at the table last night for Christmas Eve, Ralph commanded from his usual seat, first chair on left. And a few hours ago Ralph made his usual December 25th comment: “Best Christmas ever.”

The Ever Changing New Normal

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Eighteen months ago I was sitting in a six-week support group I had recently joined for caregivers when a new member walked in late, sat down and burst into tears in. She was a young woman in her late forties with a child in college and another in high school. Her husband was a former economics professor no longer able to teach due to his Early Onset Alzheimer’s. While she struggled to maintain her high pressure banking career to support their family, he spent his days in his home office playing chess on the computer and supposedly organizing his files. She tearfully described what a mess the office had become. She said he was depressed and angry and she was not sure how to go on.

At the time I was full of pity and secret relief. Her husband seemed so much further along the Alzheimer’s path than Ralph. Interestingly enough, her husband was the one person Ralph genuinely liked in the care-getters group which met at the same time as our care-givers group.  Ralph complained continually about having to listen to people drone on in his group, but when givers and getters came together for a luncheon when the six weeks series ended, he made a point of going up to the former professor to shake his hand and wish him well before we left.

Flash forward to the present. On my way to the grocery store this afternoon after a morning of office work, I realized that Ralph was not at home in his usual spot on the porch or out in the field mowing, but at his barn office/painting studio where he keeps a few files, his fishing equipment, and his art supplies. Ralph has always been a talented painter and always said that once he retired he would take it up more seriously. But despite my nagging, he has not lifted a paintbrush.

Still I became briefly excited.  Now that  the weather has turned cold, sitting on the porch smoking might be less appealing, so maybe Ralph was going to buckle down and begin to paint again after all.

But no. Ralph was sitting in his messy office, smoking a cigarette  with his dog at his feet.  When I walked in and asked what he was doing, he  said he was organizing his files.

Mourning Ralph’s Memory Loss As Well As My Mother

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A friend called to offer condolences yesterday concerning my mother’s death. Having cared for her mother for several years, she reminded me that people who have not been through the experience don’t realize the amount of energy expended. Then she added, “At least you will have new energy now that you are done being a caregiver.”

Not quite. As I explained to my friend, my caregiving has just begun.

Just the day before her call Ralph and I had gone to the Memory Center at Emory for his six-month check up. Although it did feel a bit odd heading out only two days after my mother’s death, these appointments are like gold and I was not about to re-schedule.

It was a rough visit. Although Ralph did not have to take the big battery of tests this time, our NP Stephanie did one brief test, giving him a name and address that he was to remember. A few minutes later he had no clue what she had told him to remember. She offered a clue that might have tipped him off that the last name was his, but it evidently didn’t help since he made a wild guess.

This small memory failure felt more demoralizing than all the previous results we have received over the last 18 months. It was so stark: no retrieval was possible. The box where he’d stored the memory was simple empty and he knew it.

Also upsetting, although a matter of stating the obvious, was Stephanie’s warning about driving. While Stephanie reiterated that Ralph’s motor skills and problem solving are still fine, she said he should limit driving alone because she’s had “dozens” of patients at his level of cognitive ability who became dangerously disoriented when something on a usual route changed; confusion combined with anxiety caused them to drive off course, sometimes for hundreds of miles. “We don’t want to lose you,” she said gently. The truth is that I already do the driving when we’re going anywhere together these days including his last two fishing trips to Florida—actually, the time before last he drove, took a wrong term and got us lost before I used my phone GPS; I drove us down last time. We hadn’t talked about why I’m the driver though and now it was out there on the table. Stephanie agreed he could still drive himself to Atlanta for his weekly therapy appointment, but the writing is on the wall. And Ralph could read it perfectly well. He looked beaten down even as he smiled in jovial agreement.

Then there was the discussion of activities and depression. Ralph’s lack of activity worries her. She has increased his dose of anti-depressant and he reluctantly agreed to sign up for an art class and to go out with me one night a week. This was major: although Ralph, who has some genuine talent, always said he was looking forward to painting in earnest once he had some time, he has not picked up a pencil or brush for two years. I have nagged him about classes of course, but he has refused. I’m glad he has finally agreed, but his meekness was disconcerting. I know that my own emotions are on edge as I deal with my mother’s death, but I could tell that Ralph was processing Stephanie’s words differently than he has in past meetings.

As soon as we were back in the car, he turned to me and asked, “How long do you think I have?”

To live with a modicum of dignity and awareness was the unspoken second half of the question.I answered the only way I could.  “I don’t know.”

Then I drove him home and dropped him off before heading to the funeral home to pick up my mother’s ashes.

DRIVING AND PAYING

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A few days ago Ralph had an appointment at the same dentist’s office he has frequented for thirty years. When I first made the appointment, I asked if he wanted me to come along. He said I should just write out the directions (he doesn’t use GPS). A lot of me wanted to agree since I don’t much like giving up the time—an hour each way plus the visit itself.

Then reality set in. After confirming the appointment a couple of days ahead, I began to worry about sending Ralph off on his own. I imagined him circling Atlanta, lost on streets that have been familiar to him for years. Fortunately, if  sadly, Ralph decided he wanted me to drive him after all. The anxiety was too much for him.

So I drove him into town and read People Magazine for an hour in the waiting room. Then I paid for the visit with my credit card and drove us home.

Driving and paying are small acts.

But they epitomize just how much our lives have already altered since Ralph’s diagnosis of MCI. Ralph, the man who spent his career as a self-proclaimed entrepreneur, no longer is comfortable or even interested in handling money. Ralph, the fix anything guy who was refurbishing and selling old telephone trucks for a living when we first met, prefers not to drive at all. And impractical, absent-minded professor type Alice, who couldn’t balance my own checkbook or change a tire to save my life and whose kids still tease me about my nervous driving, has taken over all the practical issues in our life.

Driving and Paying: changes that not only  define our daily mundane routine but  serve as metaphors for the larger, psychological and spiritual landscape we have begun to inhabit . And it is scary to examine that landscape, not only for Ralph’s future but also my own. But in my next few postings, I will try–if the daily and mundane don’t get in the way as they usually do lately.