Tag Archives: mild cognitive impairment

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.

Memory Loss and Money Matters

Caregiver/Spouse Issues, daily life with MCI/Alzheimer's, , , , , , ,

Yesterday I met with our new financial planner—Ralph would never have accepted the idea of a financial planner before now— and I was so anxious about the meeting that I left my laptop at the coffee shop where I’d just had lunch. Fortunately the coffee shop found my computer, and our retirement account is earning exactly the return the planner promised.

Money is not a subject I find comfortable to discuss. I have always been the artsy/intuitive, some in my family might say ditsy spouse. Even after I started working part-time in Ralph’s business office, using QuickBooks to make deposits, pay the bills and balance the books, I maintained the persona of Earth Mother not Business Woman. My domain was feelings; Ralph’s was the bottom line and money matters. (One important exception: using the example of my mother who used her coverage for her health aides, I successfully pressed Ralph to purchase long-term care insurance four years ago. Thank God.)
Since Ralph’s diagnosis, I have been thrust into the weird position of trying to think the way Ralph used to think about business and money. Well, that is not quite accurate because as I sort out our finances, I sometimes find myself disagreeing with the decisions he made.

Especially those he made in the last few years as his memory began to slip from his grasp. He had slacked off, clinging to outdated business habits and letting his assistant make more and more decisions. When she moved away and I became more actively involved at Ralph’s office, I saw the reality: while I worked ten hours a day, he came in at 11am and left at 3pm with an hour for lunch; he sat in his office reading magazines while I handled all the day-to-day matters. And yes, I was resentful to put it mildly. Still we continued to pretend he was in charge. He didn’t want to believe otherwise and frankly neither did I.

Then came the diagnosis of MCI/Early Alzheimer’s and suddenly there was no pretending we could go on as we had. We agreed that our longtime accountant and lawyer needed to know about Ralph’s condition early on. We quickly updated our wills and made sure that powers of attorney, including responsibility for health decisions, were in place.

As for Ralph’s business, the retirement that we had talked about, yet avoided for so long was now mandatory. Since Ralph’s business for the last 35 years had been managing rental properties he owned, selling the business meant selling individual properties one at a time, no simple matter.

As we began the process of talking to real estate agents and taking offers, it quickly became clear that Ralph couldn’t keep straight which real estate agent was which, which property was under contract, how much we should be asking, or how much was being offered. To tell the agents or buyers our situation would place us at a disadvantage, so I have found myself covering for him and acting as a kind of pseudo-go-between.

What has evolved is a kind of charade. The agents may not know officially about Ralph’s condition, but they have to sense something is odd. Ralph chats with them jovially, but I’m the one who responds to the offers. Ralph and I discuss the sales as if he is equally involved in the decision-making, but actually he cannot remember the details long enough to analyze them, so I make decisions with the help of our accountant and lawyer.

I have learned to be a tough bargainer, which I hate. I have learned to say no, which is incredibly difficult. I have learned to play on others’ sympathy, which has not been so difficult. Aging feminist that I am, I kind of like playing the helpless female.
And I have learned to manage our money, sometimes in ways that Ralph would not have accepted. While I have involved our son, another artsy type but with Ralph’s hardheaded business sense, in some meetings, ultimately I have made the tough decisions on my own. I had three closings in the space of six weeks. A fourth property is under contract now. I turned over some of our property to another management company that rented our office in the city. I now have an office at home.

Every day or so, sometimes three or four times within an hour, Ralph asks how much money we have in the bank. I tell him. Then he asks if we’ve paid off our mortgage. I tell him yes. Then he asks if we have enough to live on. I tell him yes again. Ralph, who used to walk and talk calculations down to the smallest fraction, doesn’t want to know details. He’s always satisfied with my answers. He trusts me completely.

Before MCI, I used to chafe at his controlling nature and complained that he didn’t trust my judgment. But the truth is, I was glad to shirk financial responsibility off on him. Now I have it, and it is lonely and scary, like so much of what being Ralph’s wife has become.

Is MCI Dementia?

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Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.

Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.

It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.

Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”

He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.

What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.

I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).

It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:

“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.

Symptoms of MCI include:

  • Difficulty doing more than one task at a time
  • Difficulty solving problems or making decisions
  • Forgetting recent events or conversations
  • Taking longer to do more difficult mental activities

Early symptoms of dementia can include:

  • Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble with the names of familiar objects
  • Losing interest in things previously enjoyed, flat mood
  • Misplacing items
  • Personality changes and loss of social skills, which can lead to inappropriate behaviors”

No surprise that Ralph hits the mark for all four symptoms of MCI.

As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.

He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.

Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.

Not yet.

If I Could Stick that MCI Diagnosis Back in Pandora’s Box…

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I just read a couple of study summaries showing that people often have “accelerated cognitive loss” for up to four years, even six years before diagnosis.

Ralph and I were aware of problems a year or so before the diagnosis, but four years or longer? I have to ask myself, why didn’t I notice sooner?

Well, if I am brutally honest, I did notice some changes, but they seemed to be improving our marriage so I didn’t want to look too closely or rock the boat.

God knows, I had already spent plenty of years obsessively analyzing what I perceived as his shortcomings and my weaknesses in our long up-and-down relationship—a marriage between strong personalities who loved each other but were frequently at odds. But about five years ago, with both kids out of the house, we seemed to have entered a second honeymoon stage.

If he forgot what I told him more often than usual, I was used to him not paying attention. After thirty years together, I was used to hearing his stories repeated and repeated; so what if he repeated them twice in a day instead of twice a week. And I was used to our screaming arguments—we both had tempers—but here where the improvement had come: he no longer held onto his anger. If we argued in the evening, he woke up the next morning with no memory that there’d been a scene let alone any lingering hostility. He was more affectionate and more relaxed. (Actually he still is.)

So if he was forgetful or unfocused that was a small price to pay. I did silently question some of the business decisions he was making, but I chose to ignore the small voice in my head warning me that he was being sloppy or inattentive, making faulty investments and letting our family business slide. It was easier to leave business decisions to him. I didn’t want the responsibility. Pure selfishness. Of course ultimately, I ended up stepping in and picking up the slack in a hurry.

What secret fears and anxieties pushed him during those months and years? How much was he aware he was missing or losing? How much was he covering up for what he couldn’t quite grasp any more?

And if we knew it was MCI earlier, would our lives have been better or worse? I thought I was actually relieved to know when we first got the diagnosis, but Ralph was only more frightened.

Perhaps conventional wisdom is right that knowledge and acceptance are the more mature route, not necessarily to bliss but to a quiet appreciation of each day. But sometimes I remember that oddly happy time and wish I’d put off learning the truth; why enter the gray uncertainty we now inhabit any sooner than absolutely necessary?

Travel–My First Crisis as an MCI Spouse

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One of the sticking points in our marriage has always been that I love to travel but Ralph doesn’t, unless it’s to go fishing. So I was incredibly excited last spring, just over a year ago, when a friend invited me to accompany her family on a cruise through Northern Europe. Two weeks all expenses paid! Even my airfare would be covered!

Aware this might be my last chance for an adventure, I was dying to go. Ralph had been given the neuropsychologist’s initial assessment of MCI by then and we had recently visited the Emory Memory Clinic for the first time. But except for repeating himself a lot, Ralph was pretty much the same self-sufficient guy he’d always been– working in the office every day, fishing with his pals, arguing about politics. I told myself he could certainly manage  without me. Still good wife that I considered myself, I told my friend that I couldn’t commit until I spoke to Ralph.

I brought up the trip with trepidation, not sure how he’d react. He might not enjoy travel himself, but he didn’t much like being left behind either.

“No question, you’ve got to go.” Ralph’s enthusiasm surprised me. “This is an offer you can’t refuse.”

He seemed more relaxed than I was  during the flurry of preparations. Over the next month I bought walking shoes, stocked the freezer with the frozen potpies Ralph loves, planned a long fishing weekend to keep him occupied at least part of the time while I was gone.

Then Ralph woke up one up one morning, five days before I was to fly to London, and announced angrily that if I went on this trip, I might as well not come back. I lashed back at him with resentment and plenty of anger of my own. How could he wait until the last minute? What would I tell my friend and her family? Why was he such a controlling bastard?

“It’s your decision,” he said before storming out of the house.

We headed to our shared office in separate cars. The cadre of supportive, well-meaning woman friends I called as I drove all agreed: Ralph was being ridiculous; he might have minor memory issues but he could function alone perfectly well.

I eventually called the Memory Clinic for professional back up; after all, I had heard our neurologist say that Ralph had ONLY MILD Cognitive Impairment.

Talk about a bucket of water in the face!  Both the nurse practitioner and social worker explained what I should have realized—capacity to function aside, Ralph’s fear had to be respected.

I went to him and apologized. He said if I really wanted to, I should go after  all. Then we talked with more honesty and intimacy than we’d shared for a long time. He acknowledged fears that his condition would suddenly get worse—“What if I get lost while walking in the woods by our house and you’re not here to find me?” “What if my mind just goes out all of a sudden?” It didn’t matter that neither scenario was likely; his anxiety was genuine and intense. And for this proud man to admit any fear was huge.

Which meant I had to admit my own fear: my own high anxiety about my new role as caretaker-spouse of a husband with memory loss. I had been in selfish denial about Ralph’s MCI while planning my trip, but part of me knew all along that going away for more than a couple of days would be a mistake. Once I said I wasn’t going, I was oddly relieved: What had I been thinking to plan such a trip?

My friend refused to let me feel guilty about cancelling. Her father refused to let me pay him back for the non-refundable tickets. The kindness of strangers is nothing compared to the kindness of friends.

As for the two weeks I didn’t travel to Europe, I have no regrets. In fact those two weeks were a gift because I ended up going with Ralph on that long fishing weekend I had organized for him, along with my daughter and her boyfriend, and while we were all together, they got engaged. Now if I’d missed that….

Drinking and Smoking and MCI

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II

I know, I know, if drinking and smoking are not good for anyone, their effect on people with memory loss has to be worse.

In fact one of the first things Ralph’s primary physician said after the diagnosis—no alcohol, no smoking.

But bad habits are hard to give up. And making someone else give them up is even harder. And to be honest, I’ve begun to wonder if maybe Ralph shouldn’t hang on to a few bad habits for a sense of normalcy. There are so many aspects of Ralph-ness he’s already letting go—the real estate dealmaker has lost his touch for number-crunching, the Bob Dylan fanatic doesn’t listen to music any more, the husband who used to only half-jokingly call himself the captain of the family passively agrees with every decision I make. Not that I’m complaining because Ralph’s temper has disappeared or because he’s become a sweeter, gentler human being; but the changes have spooked me a little.

God knows that for most of the length of our 35-year marriage I nagged Ralph repeatedly to cut down on both booze and nicotine. I have always been a bit of a stick-in-the-mud prude. I never smoked even as a kid and my drinking is limited to a very occasional glass of wine; after two I’m tipsy or worse. But I understand addictive habits; if there’s chocolate or ice cream in the house watch out.

Ralph has downed at least three or four cans a night for as long as I’ve known him. Well, actually, he probably drank closer to a six-pack many days. In fact when Ralph first started showing signs of cognitive loss, months before the MCI diagnosis, I thought his problems had to do with his Natty-Lite consumption (and I still believe it didn’t help). We talked about the connection—that he was always fuzzier at night, the same time of day he imbibed—and Ralph has actually cut down on his own. Now he drinks one or two, never more than three cans of lite beer around dinnertime, and not every night. Drinking less has obviously not cured his memory issues, and do I really want to take that bit of pleasure away?

As for smoking, Ralph went cold turkey when the kids were small and stayed nicotine free for over twenty years, but it only took one puff on a cigar at a Fourth of July party to get him hooked again five years ago. In retrospect he started smoking again around the same time that his memory began to slip, before we acknowledged it except as a joke although he may have been more worried privately than he let on.

At first he smoked just a cigar or two a day. He kept saying he was about to quit. Instead, he smoked more. He never smoked in the house; instead he’d find excuses to go off in his car or sit bundled up on the front porch on the coldest winter day lighting one cigar after another. All my nagging fell on deaf ears. The more anxious he became about his memory, the more he smoked. By the time he was diagnosed with MCI last spring, he was up to a pack a day. And remember, we’re talking a pack of cigars, cheap, skinny, smelly ones that have to be stronger than the equivalent number of cigarettes.

So last month, in an ironic turn of events, I found myself convincing him to switch back to cigarettes for two reasons: 1., he’d have to smoke a lot more of them to hit the same nicotine level he was reaching with the cigars and 2., my more selfish reason, the cigarettes wouldn’t stink up his clothes as much. The old Ralph would have fought me, but the new Ralph made the switch.

Now I remember how much I hate cigarettes smoke.

But two days ago I came across a 2012 Georgetown University study showing that nicotine may actually slow down MCI. I couldn’t quite believe, so I talked to the nurse practitioner in our neurologist’s office. She said the results aren’t in on Alzheimer’s-related dementia there is some evidence that nicotine helps with Parkinson’s.

Meanwhile, Ralph’s down to less than half a pack a day. So now I’m feeling guilty not only because he still drinks but also because he might quit smoking because of me. But I can’t bring myself to show him the Georgetown article.

Diagnosis: Mild Cognitive Impairment Limbo

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In my last entry Ralph realized his memory problem was serious enough to require a doctor’s visit. His doctor Andy recommended we make an appointment with a neurologist specializing in memory issues but warned it might take months before we saw anyone. Meanwhile he urged Ralph to get his cognitive skills tested by a neuropsychologist soon as possible.

The neuropsychologist was not exactly warm and snuggly as he asked Ralph preliminary questions. Ralph was defensive. Well, so was I sitting silently by his side. The tests themselves took three hours;  I waited in the lobby with a book. Driving home, Ralph said the tests were silly. He thought he aced them.

There was nothing silly about the second meeting, during which the psychologist gave us the test results. He did not mince his words in person or in his written report. Although Ralph’s problem solving skills and IQ were still high (though not as high as they used to be), his memory was down in the single digit percentages: MILD COGNITIVE IMPAIRMENT was definite and EARLY ALZHEIMER’S likely.

Ralph was angry, unwilling to accept the results. I didn’t tell him that I secretly felt relief because someone was taking my reality seriously. Or that I was petrified because someone was taking my reality so seriously, that it had a name.

Three months later we had our first appointment with our neurologist at the Memory Clinic.

More tests, same conclusion. But partly because Doc L. was such an easy-going, approachable and likable guy , we came away less worried. Mild Cognitive Impairment didn’t sound so bad coming from him.

A month or so later Doc L. did the spinal tap, a procedure that is relatively new in diagnosing Alzheimer’s but has proved extremely accurate.

A few days after that, I was caught in rush hour traffic and almost didn’t answer my beeping cell phone.But as soon as Doc L. said his name, I pulled over and parked…shocked he was calling me personally.

Ralph’s spinal tap showed the plaque build-up consistent with Alzheimer’s.

“But he doesn’t have Alzheimer’s Disease now.” Doc quickly reminded me. “He is still diagnosed with the condition MCI.” He has the condition, not the disease.

Not yet. Mild Cognitive Impairment– MCI –may not be Alzheimer’s Disease, but the plaque build up confirms that Ralph is not one of those lucky people diagnosed with MCI  who don’t have brain changes consistent with Alzheimer’s and might get better(go to Watching the Lights Go Out for a ray of ambiguous optimism). On the other hand, even for those like Ralph with telling changes, the boundary between MCI and Alzheimer’s is blurry at best, and research shows the timeline for development is unpredictable. It could take two years or twenty. Meanwhile, we have rewritten our wills, closed Ralph’s business and put our financial house in order.

“MCI,” I say when Ralph asks me to remind him yet again about his diagnosis. MCI I tell our kids and closest friends. MCI I tell myself.

No need to speak the word “Alzheimer’s aloud these days. Not yet, I tell myself, not yet.

Into the MCI Maze: Starting From Today

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My husband, whom I am calling Ralph at his request (see “About” above), has the Condition called Mild Cognitive Impairment. His MRI and spinal tap show that he has plaque build up consistent with the disease called Alzheimer’s, but as his doctor repeats, he does NOT yet have the DISEASE CALLED Alzheimer’s. He has  the CONDITION called MCI.

Some people with MCI slip quickly into Alzheimer’s or dementia. Others reach a plateau and stay there. For now, because of his medicines,  because he’s lucky, or because I’m in avoidance, Ralph seems to be on the plateau.

I admit I have not kept track of the changes in Ralph as well as I should have. I missed the starting line. And living with him day to day, I can easily miss  gradual alterations that others who see him less often find shocking. Since greater changes may be coming—ok, will be coming—I need a point of reference going forward, and here it is:

What he remembers:

Facts—He watches Jeopardy every night and is still a strong armchair contestant.

His meds—As long as I fill his weekly pill boxes (Namenda and Donepezil for memory and generic escitalapram for depression and anxiety).

His daily routine—He feeds the dog, takes a walk,  takes a nap, maybe spends a couple of hours every day in his workshop “organizing my tools.” Now that the weather has warmed up, he does a lot of mowing. By mid-afternoon he’s sitting  on our front porch, whatever the weather, listening to the radio and smoking a cigar. (I know smoking is bad but this fight isn’t worth fighting right now.) Mondays he drives himself to see his psychiatrist. He eats lunch at Burger King beforehand and stops at the post office afterwards.

How to drive— His actual driving skills remain strong although he drives more slowly, maybe a good thing. As long as I am there to give directions, he can drive anywhere day or night. Alone, he can find his way to certain key locations : his psychiatrist, Burger King, and our daughter’s house.

What he forgets:

Who people are—not just names but also that certain people exist.

Conversations—often enough that I assume anything I have told him will be forgotten–scheduling details, financial decisions, family issues. Of course, the upside is that I can tell him a secret and know it is safe. Plus he forgets arguments immediately.

Memories, Especially Bad Memories—Despite common assumptions, his long term memory is not much better than his short term but it is selective. He has forgotten quite a few specifics of his past, but they come back with prodding. What he has more trouble remembering are arguments, why friendships went awry and family estrangements occurred. Even when he’s reminded, he doesn’t feel the old angers. An unexpected benefit.

Who he is:

Sweeter than he used to be; less aggressive; more patient; less easily bored (because he doesn’t remember the twenty minutes of waiting for the doctor once it’s over); more in the moment.

But also less ambitious; less energetic; less adventurous; more passive; more dependent.

Still passionate about his farm and his dog; still able to fix anything with his hands; still a voracious reader (he says he can’t remember what he’s reading until he opens the book); still adept at analyzing numbers, facts and human nature (even if he can’t remember his analysis five minutes later)—in other words, although  I’ve been warned there’s no telling how long before MCI begins chipping more deeply into his identity, Ralph is still himself in the most important ways.