Dementia of the Preoccupied: How Multitasking and Being Attached to Technology 24/7 is Creating A Dementia Effect on Society

I read this just after getting home from the restaurant where I’d left my credit card after paying because I was preoccupied with making sure Ralph was at ease. We’d been dining with another couple. The woman knows about Ralph’s condition, I wasn’t sure about her husband. Ralph began to repeat himself a bit and I became overly convivial. I knew Ralph was fading since it was after eight. But it took forever to get the check and while I was writing in the tip, our friends introduced Ralph to acquaintances at the next table. One was a man who once contributed, sight unseen, to a non-profit organization Ralph headed. Ralph became confused and anxious about how they knew each other, and I became anxious to get out of there. When our waitress came running with the credit card a few minutes later I was embarrassed. But I can’t say I was surprised.
So this article really hits home.

Going Gentle Into That Good Night's avatarGoing Gentle Into That Good Night

lifestyle dementia technology multitaskingNeuroscientist and author Frances Jensen, in describing what normal life has become for most of society, calls what happens neurologically dementia of the preoccupied.

It’s an apt term. It’s also the brain mimicking dementia symptoms, because our brains aren’t wired to do continual rapid attention/task shifts nor is it wired to multitask.

Despite a lot of evidence that a 24/7 connection to technology (produces a neurological condition, which includes changes to the structure of the brain, known as digital dementia) and multitasking are not only damaging the brain long-term, but they also reduce productivity dramatically (the effect neurologically is exactly the same as staying awake for 24 hours or more or smoking marijuana), a 24/7 connection to technology and multitasking are still seen as badges of honor and are highly prized both professionally and personally.

The problem with multitasking is that we can’t really multitask. Neurologically, we are wired to focus all our…

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“In The Zone”

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.

OOPS

So I was about to write about a little snafu caused by Ralph’s memory lapse the other day but then I had my own cognitive issue.

We received a less than friendly email from a neighbor who has been complaining about various issues. In the past when he has made requests we have always complied. This time he was mad because a dumpster on our rental property was not emptied on New Years Day. The email was sent to our business email address and to Michael, the guy who manages the property since we “retired”. In the past we have always bent over backwards to make him happy—hiring people to police the grounds, adding an extra dumpster pick-up day, acquiescing to his zoning requests to put in a swimming pool and build a wall. This time I was admittedly annoyed at the snotty tone of his letter and emailed Michael that I now wished we hadn’t offered so much in the past. Unfortunately I was emailing from my phone, was slightly distracted, and hit “reply all” by mistake.

The neighbor was not amused.

And I can’t blame my screw up on cognitive impairment. Wait, maybe I can.

As followers may have noticed I haven’t written here for a few weeks. Since Ralph was  functioning more or less as usual, I took a short hiatus, taking care of the essentials but not thinking quite so much about our situation–a small case of burnout.  And I am not alone.  Supposedly caregivers of Alzheimer’s spouses have a higher rate of anxiety that could impair cognition. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp

The hiatus is over and I am feeling calmer about my life, but don’t tell anyone. MCI and Early Alzheimer’s have given Ralph his built-in excuse for life’s big and little screw ups . I need my own.

Pure Ralphness Now and Then

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.”

A Mountain or A Molehill of a Bad Night?

I have been avoiding writing this entry, wondering if I can skip it, but if this is to be an honest chronicle, there’s no leaving out the unflattering, ugly and/or embarrassing parts.

Ralph fell on Friday and ended up in the emergency room. He’s fine, but the experience was unnerving and upsetting on several levels: as a reality check on our life together now, as a glimpse into our possible future, as a mirror into my reactions.

Ralph had injured his back last Monday and spent the next four days in serious pain. He did what he always has done with his back issues in the past —lay on his back with a brace and took painkillers. I brought him food and Advil, but to say I was attentive might be an exaggeration since I went into Atlanta for someone’s birthday dinner without him Tuesday night and was in and out of house the rest of the time, actually finding as many reasons to be out as I could.

By Friday he seemed much better. When I got home from the grocery story at 5-ish, he was sitting on the front porch talking on the phone to his sister. I was glad to see he was back to his usual afternoon routine but also vaguely annoyed with him for no particular reason except maybe caregiver fatigue as I schlepped in the grocery bags by myself. Minutes later while fiddling around in the kitchen, I heard a crashing noise. I assumed it was the dog, but—and here’s where the embarrassing, unflattering part starts—a thought slipped into my head along the lines of, if that’s Ralph dropping dead it serves him right for sitting out there not helping me with the groceries.

Of course, it was Ralph. He lay crumpled face down on the ground by the porch steps. He was not moving. What had I just wished on him? To twist the knife a little more, that very morning he’d asked me out of the blue, “What will you do when I die?” In response I had laughed uncomfortably and changed the subject. What if he’d had a presentiment?

He was conscious but unable to move his legs. His speech was slurred. I thought, stroke. I couldn’t and knew I shouldn’t move him. So I made the 911 call.

Ok, here comes the next embarrassing part: The EMT said that Ralph didn’t seem to have had a stroke or broken any bones, a relief of sorts, but that he smelled liquor on Ralph’s breath. I got defensive and said all we had in the house was white wine, which was true, and how much could he have imbibed in the two hours I was gone. The EMT said I shouldn’t be embarrassed if Ralph was tipsy when he fell. Right. I was more than embarrassed. I was half-hoping it was a stroke because that would be less difficult to explain than allowing my 68-year-old cognitively impaired husband get so drunk he fell off the porch.

On the 45-minute drive behind the ambulance, I called both my kids to prepare them just in case it was a stroke although I very calmly told them it probably wasn’t. Meanwhile I was composing titles for my next blog entry in my head, along the lines of From the Border of Early Alzheimer’s into the Abyss.

At the emergency room, Ralph was awake but very out of it. He had no memory of falling or riding in the ambulance and didn’t understand where he was. I panicked oh no this is going to be my life from now on. I have read so many blogs by wonderful people caring for their seriously debilitated spouses, but I wasn’t ready to be one of them.

The hospital tests clarified that Ralph had not had a stroke. And that his alcohol level was way over the legal limit. I was horrified. How had I allowed this to happen to him? Was he an alcoholic and I his enabler or was he a guy with a bad back and a worse memory who drank some wine on an empty stomach because his wife didn’t bother to make him lunch before she went out and he forgot to eat)? Either way, I was at fault. The medical staff didn’t seem very concerned—a 68-year-old man drank too much and tripped was the general consensus.

But to me and to Ralph it was a nightmare. I had never witnessed him so totally confused. And each time he asked me to explain his current situation, he became more deeply upset that his life had come to this point. “I am a man who is in control,” he repeated shaking his head.

As I drove him home minutes after he was released, he’d already forgotten we had just been at the hospital. I panicked. Was this his new memory level? I dreaded what I would be dealing with the next day and every day to come.

In the morning Ralph woke up sore, but he remembered the fall and the hospital. If anything, his memory was sharper than it has been for a while. He was mortified, worried that someone we knew had seen him in the hospital. I assured him no one had. We discussed how much he had drunk. He didn’t know but he had eaten very little and drunk on top of his meds and a lot of Advil. I explained how alcohol exacerbates cognitive impairment. He has not exactly sworn off his lite beer forever, but hasn’t had one since. He says he is more groggy/foggy than ever, but it seems to me that his memory is better and he has more energy. We are both relieved, enjoying life the way you do when you have just skirted disaster.

But for those five hours Friday night, I saw what our future might hold—Ralph’s nightmarish confusion, my cold calm covering inward fury—and it wasn’t pretty.

Joy Still Happens

Today we went on our annual Christmas tree hunt. We have cut down a tree on the farm almost every Christmas since we moved down here.

Ralph and I still remember the first time, 25 years ago. Piled into our old Suburban with our two kids, our friend Amelia and our two dogs, we drove all over the land we had just purchased. We didn’t know our way exactly and the roads were overgrown so we got stuck several times as well as a little lost, although Ralph wouldn’t admit it. He shot mistletoe out of some very tall trees—who knew that’s where you found mistletoe—and cut down two beautiful pines, one for our family and one for Amelia’s. Then we drank hot chocolate. It could not have been more greeting card perfect.

But of course life changes. Amelia moved out of our lives. The dogs died and were replaced by several generations of new pets. The kids grew up and although they have never have missed a Christmas yet, I worry every year that this season will be our last together as a family. Then there is the change in Ralph himself. He used to be the center of activity and now often prefers the sidelines, napping when the others go off on adventures.

And it has become harder to find a decent pine. There aren’t as many out there, either because we cut down the good ones or let them grow too large. For the last few years, Ralph and I have dragged along grandkids or nieces, city kids who try to be patient but quickly get bored traipsing through fields. But this year there is no one around but the two of us.

So I expected Ralph to tell me that looking for a tree would be “too much trouble”– his current catch phrase regarding so many activities we used to enjoy. Frankly, in this case I was secretly thinking he might be right, that a bought tree, with its perfect limbs, might be a pleasant change from our usual Charlie Brown monstrosities. But Ralph surprised me.

He was eager to go out tree hunting. And he remembered for two days straight that we were going to go today. He even made sure we gassed up the truck before we started. And off we went. Although our paths were mowed during the recent wedding preparations, the grasses are back up high and it was our normal bumpy ride, but at least there was no rain and it wasn’t too cold.

Soon, not far from our pond, we noticed a tree with potential, despite a flat side. I suggested we tag it with a pink ribbon, but Ralph insisted that he would remember where it was. After a lot more driving, also jumping out of the truck opening gates and stomping through high grasses, we found another tree, a tall one in a thicket of our old cow pasture. This one I made him tag. We spotted our third possibility in the fenced pasture directly behind the house. Ralph was happy to tag this one, and I took a picture to compare to our other choices.

By now Ralph had no clue where the other two choices were—or that we had seen other potential choices at all. As he followed my directions back across the pond, we joked about his memory in a way we don’t any more. And then we agreed, almost casually, that his condition was likely to get worse. Ralph’s potential future with Alzheimer’s has become the elephant we don’t always acknowledge taking up half the room, but in that moment of acceptance, it seemed less scary.

Because we were having too much fun. Both of us. There we were, two sixty-something-year-old cynics driving around in a beat up truck debating over the perfect height and shape of straggly pine trees as if our lives depended on making sure we didn’t end up with a bare spot in the branches. And it was great.

Lately I worry that we no longer connect as equals. It bothers me that Ralph is not interested in all the issues and concepts we used to discuss/argue about so energetically. Not only has he lost his appetite for current events but what is worse, he doesn’t want to challenge me about anything more important than whether he’s taken his pills. When he talks about the dog and the weather or repeats and repeats his anxiety about some mundane issue that has long been settled, I feel myself patronizing him. Not a good feeling. I have to remind myself who he has been in his life.

But this afternoon I didn’t have to make myself remember what I used to enjoy about being married to Ralph; I simply enjoyed being with him.

 

The Ever Changing New Normal

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.

Appreciating the Common Cold

This will be short because I don’t have much time to write today. Ralph is sick in bed with a very bad cold and I am playing nurse—note, I said playing and nurse, not being or caregiver.

In the old days when Ralph was sick, I always complained, at least to myself, about what a baby he was. Now I find myself offering to make him toast and tea. I make pots of homemade chicken soup. I have skipped scheduled meetings and almost cancelled a trip Ralph and I both agree I should take with my son.

Yet I feel none of the resentment I usually feel around my never-ending sense of responsibility toward Ralph.

Why? I keep asking myself until I realize that it is much easier to deal with the fact of Ralph with a concrete, physical, medical ailment. Not that the brain changes connected to Alzheimer’s are not medical or the plaque build up in his brain is not physical. But for me there is a psychological or maybe I should say magical thinking difference:

What Ralph calls his fogginess is frustrating to manage or even face because it is hard to quantify. Maybe his namenda and donepezil make a difference, maybe they don’t. Maybe I sense him losing more memory lately and being slower on the uptake or maybe I’m looking at his every sentence too closely and reading too much into his slips. I don’t know and don’t always trust my guesses.

On the other hand, a stuffed nose is a stuffed nose and a fever of 102, while serious, can be measured going up or down. The efficacy of cold medicine is uncertain but plop plop fizz fizz what a relief a cold can be. After all, we both know he will recover from it—tomorrow or the next day his nose will stop running, his fever will drop, and physically at least he’ll be “better”. His memory? Not so much.

Mourning Ralph’s Memory Loss As Well As My Mother

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.

My Mother’s Death

I was planning to write today about my changing identity as caregiver since Ralph’s MCI diagnosis  but plans go awry…

My mother passed away this weekend.

I always thought that “passed away” was a euphemism to avoid because saying a person died was more honest and direct. But “passed away” is exactly what my mother did. Her breathing and heartbeat slowed; her expression cleared from pain. She suddenly looked much younger, her face holding all the ages of her life—the baby she’d once been, the young woman, the matron, as well as her current 96-year-old self. Her lives/life seemed to pass through her and drift away.

We did not get along when I was growing up or when I was young or even youngish adult. Ours was a competitive relationship filled with criticisms,resentments, recriminations. But we made a kind of wary peace and  began to get along much better in the years after my father’s death in 1990. She divided her year between Florida and Pennsylvania by then but liked visiting en route and arranged to have her hip replaced in Atlanta so I could be the one to care for her during her convalescence. When her health gave out ten years ago, she ended up in my house. Partly it was practical—I had a mother-in-law suite—and partly it was emotional. She told me that she knew she could maintain a certain semblance of independence with me and implied that our cooler relationship meant her life would be calmer than it might be with her other kids with whom she was closer.

Care-giving does not come naturally to me and my old grievances against my mother did not make it any easier, but for the most part our arrangement worked surprisingly well. She had a paid caregiver. I visited her downstairs daily. In the early days she came upstairs to our space regularly as well, although with time that became harder and then impossible. She was relatively independent for probably the first five years. Then, as her health deteriorated further, I had to become more involved. And these last two or three years, first at home and then most recently in the nursing home where she moved last year, her needs and my responsibilities became increasingly intense.

I am not going to pretend I am in a state of high grief. Being with her so much for so long during this long process, I know she was ready; frankly I was ready too. For a long time I had stopped thinking of her as “mother.” She had become the helpless elderly woman I cared for almost impersonally. As the old grudges evaporated, so had much of the mother-daughter/love-hate angst that bound us.

But we had our moment of closure. My mother cared a great deal about appearance and was perpetually critical of how I looked. On the Thursday before her death, in the last moments she was even partially cognizant, she looked at me suddenly and said words I had never heard from her before. “Your hair looks nice today.”