Tag Archives: Between MCI and Alzheimers

ON LABELS, ROLES AND MARRIAGE WITH ALZHEIMER’S

Caregiver/Spouse Issues, Uncategorized, , , , , , , , , ,

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There has been quite a bit of discussion lately on the blogosphere about how to label or not label people with dementia, specifically whether the word “sufferer” is verboten. I am not yet brave enough to discuss the issue in detail [although basically I’m all for not labeling, but I’m also for being free to label myself any way I want without feeling as if I’ve broken some rule], but it’s got me thinking a lot about labels in general. Not so much Ralph’s as my own.

And maybe LABEL is the wrong word. Maybe I mean ROLE.

Over the last couple of years, I have grown to think of myself more and more as Ralph’s “caregiver” and have heard myself talk (pontificate?) about what being a “Caretaker” entails. It’s such an easy catchall phrase. But now I am beginning to rethink just how I should describe myself.

During the last ten years of my mother’s life I was the primary “family caretaker” although there were always professional caretakers on hand to do the often literally dirty work. She was in my house and I was the one making decisions about her care. I was the one writing checks to those care professionals out of our joint account. I was the one informing my siblings when I sensed a problem. (I was also the one complaining about my siblings and being complained about—butt-calls and miss-directed emails kept us all more informed than we’d like on both counts.) I was the one sitting in the emergency room at least once a month toward the end.

She became less and less my mother than my responsibility, my duty.  Ironically, that was when my patience increased. The unresolved conflicts between us became irrelevant, dissolving like the thread doctors use to stitch up torn skin. At some point I stopped feeling like a daughter.

But as fraught as the mother-daughter relationship can be, the husband-wife relationship  is fraught in a whole different way–especially in a marriage with a man whose mental world is shrinking while mine is not.

Am I more wife or caregiver? As much as my marriage and relationship with Ralph have changed, despite my new sense of being the decider, I am not sure which way to answer that question.

Because he still annoys me the way only a husband can. The other day he was repeating one of his boastful but charming stories for the third or fourth time in half an hour. That immediate repetition I didn’t mind—it’s the Alzheimer’s speaking—but I have probably heard that story over a hundred times in our life together, since long before any memory loss, and frankly I’m sick of it.

And because I still use that bitchy tone I have always reserved especially for him on occasions of mild to extreme annoyance. Although the issues are smaller these days than in the past, I’ve noticed that my annoyance can be just as extreme. What’s changed is that Ralph doesn’t shout at me or storm out the way he used to. Instead with earnest sincerity, he asks me not to use that tone because it makes him feel bad. And then I have a complicated wifely reaction of guilt and resentment, based on our history and all the times we made each other feel bad.

On the other hand, I still feel the need to get his opinion and advice, on business decisions, on family matters, on what blouse to wear. Of course Ralph used to be extremely opinionated, always ready to give advice whether I was ready to receive it or not. Now he is easily swayed by what I think and really has no opinion on most matters, political, social, or sartorial.

So, yes, Ralph’s reactions to daily life and to me have changed since his diagnosis of Mild Cognitive Impairment/Early Alzheimer’s. But I am not thinking about  Ralph right now, but about me, however selfish that sounds. I am worrying how I may be changing.

I have that luxury because Ralph’s mental state is on a plateau; his memory and other symptoms have held steady for the last year. Therefore our marriage is also on a plateau, part purgatory and part second honeymoon, as we watch for signs of the deterioration everyone agrees will be coming sooner or later.

Meanwhile my emotions regarding Ralph, while tempered by my awareness of his diagnosis and prognosis, are pretty much the same as they have been since practically the day we met: a crazy quilt of guilt, contentment, resentment, protectiveness, impatience, loyalty, recalcitrance, affection, annoyance, love and occasional hate.

And my self-definition—creative independent woman, passive helpmate, head of household, housewife, caregiver, care giving wife, wife who cares for, wife who wants to escape to Tahiti—remains constantly in flux. I am the woman I’ve always been, but I’m someone else as well. That caregiver word is there, stuck in the middle, not yet in capital letters.

IMG_0130(This crazy quilt belonged to my grandmother. Note the centennial snippet.)

“Memory Loss Associated With Alzheimer’s Reversed For The First Time”–If It Sounds Too Good To Be True….

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A friend sent me a tantalizing press release concerning a study run by UCLA and the Buck Institute, which claims that a “Small trial by UCLA and Buck Institute succeeds using ‘systems approach’ to memory disorders.” (Note direct quotes from the press release will appear here in italics.)

Wow, a cure for memory disorder! In amazement, I stop reading.

So has UCLA had the major breakthrough we’ve all been waiting for and were told was years away?

And what is a systems approach?

I start reading again until I understand that what was involved was a “36-point therapeutic program that involves comprehensive diet changes, brain stimulation, exercise, sleep optimization, specific pharmaceuticals and vitamins, and multiple additional steps that affect brain chemistry.” This program was devised by Dr. Dale Bredesen of the UCLA Mary S. Easton Center for Alzheimer’s Disease Research and the Buck Institute for Research on Aging.

The real science involved here sounds controversial and is far beyond my ability to analyze. Most of us have been told that Alzheimer’s is caused by sticky plaque build up in the brain but Dr. Bredesen conducted a study that found “that Alzheimer’s stems from an imbalance in nerve cell signaling.” Therefore Bredesen says that “a broader-based therapeutic approach, rather than a single drug that aims at a single target, may be feasible and potentially more effective for the treatment of cognitive decline due to Alzheimer’s.”

And golly, 90% of those in the USCLA study “displayed subjective or objective improvement in their memories beginning within three to six months.”

A problem is that that there were only ten patients in the study. Having just read Thinking Fast and Slow by Daniel Kahneman, I am hypersensitive to misleading studies in general and studies with overly small pools of participants in particular. Ten patients is a pretty small pool.

Then there are the  “patients” themselves as described in the press release:

Patient 1 had two years of progressive memory loss. She was considering quitting her job, which involved analyzing data and writing reports, she got disoriented driving, and she mixed up the names of her pets.

Patient 2 kept forgetting once-familiar faces at work, forgot his gym locker combination and had to have his assistants constantly remind him of his work schedule.

Patient 3’s memory was so bad that she used an iPad to record everything, then forgot her password.

These three patients sound like Ralph at least five years ago, back when we were still joking about his memory slips. Actually they sound a lot like me right now.

Basically the pool was made up of “patients with memory loss associated with Alzheimer’s disease, amnestic mild cognitive impairment or subjective cognitive impairment (in which the patient reports cognitive problems.” No surprise that the “One patient who had been diagnosed with late stage Alzheimer’s did not improve.”

But still, that most did improve is good news.

The bigger problem for me is the breadth and intensity of demands from participants (and those who care for them). Bredesen’s program requirements include:

  • eliminating all simple carbohydrates, gluten and processed food from her diet, and eating more vegetables, fruits and non-farmed fish
  • meditating twice a day and beginning yoga to reduce stress
  • sleeping seven to eight hours per night, up from four to five
  • taking melatonin, methylcobalamin, vitamin D3, fish oil and coenzyme Q10 each day
  • optimizing oral hygiene using an electric flosser and electric toothbrush
  • reinstating hormone replacement therapy, which had previously been discontinued
  • fasting for a minimum of 12 hours between dinner and breakfast, and for a minimum of three hours between dinner and bedtime
  • exercising for a minimum of 30 minutes, four to six days per week

Bredesen said the program’s downsides are its complexity and that the burden falls on patients and caregivers to follow it. In the study, none of the patients was able to stick to the entire protocol. Their most common complaints were the diet and lifestyle changes, and having to take multiple pills each day.

The good news, though, said Bredesen, are the side effects: “It is noteworthy that the major side effects of this therapeutic system are improved health and an improved body mass index, a stark contrast to the side effects of many drugs.”

Just reading this explanation exhausted me. Call me lazy, call me selfish, but I can’t see Ralph and me signing up for this regimen any time soon.

Ralph’s Famous Adventure in Hog Killing —or Keeping the Stories Alive Despite Alzheimer’s

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

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I was making dinner the other night when Ralph called me out to the porch where he was having his daily late afternoon cigarette and beer listening to the radio. A story on All Things Considered had piqued a memory from his childhood.

“Have I ever told you about the hog killing?” he asked.

Oh God, not the hog killing story again, I thought as he launched into it. How many times over the years have our kids and I have heard this story–how he was a little kid visiting relatives on a farm with his family one fall during hog killing season, how his easily hysterical mother started shrieking, how the gory killing is mixed into a memory of getting ice cream cones. But it’s a better story in his telling than mine.

“You know you should write that story down,” I told him. “All your stories, actually.”

He nodded. “Yes, I should.”

This conversation is not a new conversation. Every few weeks we agree he has a lot of great stories, and is (or was) a natural storyteller of the Southern charm variety. I suggest he get a notebook and write the stories down. He says, yes, he definitely will do that.

But given Ralph’s inertia fed by his place on the Alzheimer’s spectrum, that’s only going to happen if I make it.

And so far I have been a slacker. I tell him and myself I will get a notebook and set aside time each day for us to work on stories, but then I let the whole idea slip off my radar as quickly as it slips from his. His excuse is cognitive impairment. Mine is laziness at making one more effort. The discipline it will take for me to get him to get the stories down is the same discipline I need—and have so far lacked—to get him to exercise more. His lack of enthusiasm gets me off the hook and feeds my own penchant for lethargy.

But I am making early New Year resolutions. I need to get Ralph walking before he puts on more (not to mention my inches and pounds). More important, I cannot wait until Ralph and I are both inspired to record, whether on audio or in writing, his stories.

Because otherwise the day will come when I ask him to tell me one or he tries to remember, and the story is gone.

Finding the Right Words for Ralph’s Condition

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I have been struggling with terminology lately after reading essays by people who do not want to be called victims or patients just because they live with dementia.

I totally understand. I hate victim theology.

But I am also uncomfortable when I hear the word hero being batted around. Or survivor. As if the world owes gratitude or praise. Why does dealing with a certain disease or a disability make you heroic? Don’t most people deal with something? And what seems unbearable to one person is no big deal to another because everyone’s pain threshold—physical, emotional, and psychological—differs.

I don’t think of Ralph as a victim and he certainly would never describe himself that way. He would say he’s a guy with a memory problem. Of course, that’s not quite the whole story either, but I respect how he sees himself. So I usually don’t say more unless someone presses or unless Ralph is going to be in a situation that might be awkward; for instance his art class teacher knows why he has difficulty finishing each painting and knows she has to tell him he’s ready to move on to the next or he never would—not a simple memory problem but easy to manage. He loves his class. And the paintings once he’s told they are finished.

And Ralph is frankly no hero and has no desire to be one. He does not want to acknowledge anything in common with others in his condition. He won’t attend a support group for MCI/Early Alzheimer’s. He is not interested in educating the public on the condition or talking about it. He also doesn’t have much interest in fighting the manifestations in himself, in exercising his brain or his body. He is going “gentle into that good night” watching the sunset from his chair on the porch.bird night

Ralph is not a victim, not a patient, not a hero. Not suffering from Alzheimer’s or dementia.

I tried out a new term with him the other morning. I explained (for the umpteenth time because this is one fact he chooses not to remember) that, yes, his brain shows the plaque build up connected with Alzheimer’s, that there is no telling how quickly or slowly the Alzheimer’s will progress but so far his meds are holding his memory function steady. He accepted both the facts and the term I offered.

So from now on if anyone asks, Ralph is on the Alzheimer’s spectrum. Not a perfect description, but it works for us.

18 Months Post Diagnosis of MCI–Where Are We in Memoryland?

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I just realized that I began blogging about Ralph and me in April of 2014. Is that only a year and a half ago? It feels much longer, as if Ralph and I have gone through years and years of changes in the last 18 months. At the same time it feels as if the two of us are stuck and not moving forward at all.

FEELS is the operative word. Feelings are subject. Feelings can’t be trusted.

A lot of things happened—deaths, weddings, children moving away, friendships evolving, business crises. The accumulation of events big and small that form our lives. But how much as really changed in terms of Ralph and me. Have we moved deeper into Memoryland.

To gain perspective I went back to my first post to compare and contrast the salient points:

RALPH’S DIAGNOSIS:

Then: He “does not yet have the disease called Alzheimer’s. He has the CONDITION called MCI.”

Now: Still true as of his last test results at the Emory Memory Center

WHAT HE REMEMBERS:

Then: Impersonal facts like those on Jeopardy, His Meds, His Daily Routine, How to Drive

Now: He watches Jeopardy but not so much. He still retains facts, but not quite as many. He still can take his meds from his weekly box. His daily routine looks about the same on the surface although his actual day has shrunk. It is hard for him to get moving before 10 am or stay up past 8 pm. And he does a lot more sitting

WHAT HE FORGETS:

Then: Who people are. Conversations. Memories, especially bad memories…

Now: Fewer conversations are retained. More people and also facts seem lost. Old memories too.

WHO HE IS:

Then: “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…Passionate about his farm and his dog…able to fix anything with his hands…a voracious reader.”

Now: Here is where the changes start. His personality is if anything even sweeter, even less aggressive. He no longer has an interest in analyzing numbers, facts and human nature. He may still be able to fix things with his hands but he doesn’t have much interest. Changing a light bulb becomes a major occasion, not because he can’t but because “it is so much trouble.” There has been a shift. A subtle withdrawal from the world we share that cannot be measured by memory tests.

OUR RELATIONSHIP:

Then: Eighteen months ago, I wrote, “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.”

Now: I don’t know if I can honestly make that statement today. According to tests and my own comparison, Ralph is still functioning adequately with my support, but I have more trouble recognizing the man I married. There is a vacancy, a growing disconnect, that I sense but can’t measure.

Perhaps the greater change is not in Ralph at all, but in me. The relief I felt at first when we finally received a clear diagnosis for Ralph’s cognitive changes has shifted to something between acceptance and resignation. The support he requires weighs heavier.

We get along well on a day-to-day basis We still laugh together, usually in the mornings when he is sharpest, but we have less and less serious conversation either about the world around us or about ourselves. Sometimes, in a burst of ebullience, he’ll declare how much he loves me. And I love him, but the love is different and not exactly ebullient.

18 months ago I was a spouse learning with my husband to deal with his cognitive condition. Now I am not sure how to describe our relationship. I often feel more parental than wifely. But saying so feels (that word FEEL again) inaccurate and unfair. Because whatever we have become to each other and whatever we are becoming together and individually changes every day.

2 ALZHEIMER’S QUESTIONS NO ONE CAN ANSWER

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DOES HE KNOW?    IS HE HAPPY?

These are the two questions people ask more than any others once they learn that Ralph is suffering cognitive loss due to Alzheimer’s.

Both questions should be easy to answer:    YES or NO.      Yet I can’t answer either for sure.

1. DOES HE KNOW?

What Ralph knows and what he acknowledges may or may not be the same thing.

He’ll be catching up with an old friend on the phone and I’ll hear him say, “I have a memory problem,” as if it’s just another inconvenience of aging like someone else’s arthritis.

I’ll show my annoyance about something he forgot to do, like feed the dog, and he’ll rightfully if self-righteously chastise me, “You know I have a memory problem.” Of course I immediately backtrack. (Not easy for an inveterate  nag).

But if the word Alzheimer’s comes up in general conversation, or more often in the media, he chooses to disassociate himself. There’s a TV commercial for Namenda that particularly bothers him because he  takes Namenda. He does not want to identify with the sweet old man on the screen. “I don’t have Alzheimer’s,” he’ll announce. “The doctor said I don’t have Alzheimer’s.”

Often I just nod. After all, his most recent cognitive tests show he is holding onto the smudged borderline between Alzheimer’s and Mild Cognitive Impairment. But if I slip and remind him, “The doctor explained what it means that you have the plaque build up associated with Alzheimer’s,” he’ll go very quiet.

And if I ask him pointblank how he thinks he’s doing, whether he senses any changes in his cognitive abilities (changes I do sense but don’t bring up), he says no, he’s fine. If I mention  a specific cognitive lapse, he denies it.

I understand:   He wants to be in control.

2.  IS HE HAPPY?

 He SEEMS to be, at least as happy as he’s ever been:

He laughs more. He’s less impatient. He loves his dogs. He loves his nutty buddy ice cream cones for dessert after dinner, which he also usually loves (without the critiques of my cooking he used to make). He loves his cigarettes and his lite beer. He loves sitting on the porch. He loves his farm. He says he loves fishing although he doesn’t often make the effort to fish anymore. He loves me, as he’s told me more times in the last six months than he ever did in the previous 40 years we’ve been a couple.

But what he’s thinking and feeling inside I don’t know. For a man who loved to talk politics and philosophy all night, he’s gone awfully silent.

And really, if you ask whether he was particularly happy before his memory began slipping, the answer would also be I don’t know. He’s always been moody, though less so now. And like many men of his generation, he’s never been big on revealing or analyzing himself.

Still, I can’t help wondering if boredom is the reason he sleeps so much now that he’s not interested in what’s going on in the world–or if not boredom, a desire to escape from thinking about his situation. He doesn’t voice the fears he must have about his future, and I don’t push him (well, a little) or ask point-blank if he is happy. I don’t want him to ask me back.

I am not sure how I would answer…

Ralph and Lola

daily life with MCI/Alzheimer's, , , , , , , , , ,

lola day 1

So we have a new puppy.

Ralph is devoted to his lab Zeus. The two of them spend most of Ralph’s waking hours together, up in Ralph’s office, where Ralph supposedly paints while Zeus dozes, out on the porch where Ralph drinks beer and smokes while Zeus dozes, or at the kitchen table where Ralph eats and reads while Zeus begs for scraps when he isn’t dozing. One reason I can’t get Ralph to go out to dinner, let alone away for a vacation, is that he doesn’t like being away from Zeus.

But Zeus is eleven, maybe older. He has epilepsy. And weighs at least 85 pounds. Big dogs don’t live as long as small ones. So for a while I have been worrying about what would/will happen when Zeus goes. We are not dog buyers usually. Our dogs have come to us through friends or through the pound or because they wondered up tagless. But given the reality of Ralph’s prognosis with Alzheimer’s, I began to think a companion dog with special skills might be in order. Plus I loved the idea of a non-shedding  fluffy dog and maybe a dog that was in the 30-pound range. I also worried that if I waited too long, Ralph would not be able to help with training a puppy—I am not by nature a dog person myself and have never trained a puppy. So last month I registered with a labdoodle breeder to be on the wait list for a mini-doodle puppy.

Evidently a labdoodle is not in my future however.

Because ten days ago I walked into my gym and my Pilates instructor announced she had just picked up a stray puppy and didn’t know what to do with it. The dog had wandered or been dropped at a busy neighborhood intersection. She’d already been to the vet who found no i.d. chip. Everyone in the gym was gaga over the lab mix puppy, which had on a collar but no tags and seemed underweight but not mistreated. With her pale blond coat and dark eyes, she looked like a mini-Zeus. Very mini. Whatever part of her is not lab is something small, a terrier or maybe a beagle. She—my teacher, not the puppy although come to think of it her too—gave me one of her most winning, beseeching smiles. I called Ralph. We agreed to foster the puppy and maybe keep it if no one claimed her. The signs and Facebook announcements were already going up.

Ralph immediately named her Lola, as in “whatever Lola wants…” My granddaughter came to visit and fell in love. So did my daughter. Zeus not so much. Ralph and I tried to keep our distance in case someone showed up. But Lola was, is, awfully cute. No one called. I took her for shots and signed her up for puppy class. She began to house train in earnest.

Which means I am house training her. I am also feeding her and teaching her to sit and come—as far as I’ve gotten in basic dog etiquette. Basically I do all the disciplining and getting up at the crack or dawn and at midnight for “do your business” walks. Ralph cannot keep straight what and when Lola eats or how much to feed or that she needs to go out when she whimpers, but Lola adores him and vice versa. He is the one she sleeps with on the couch. She follows him everywhere when she is not following Zeus, who has gradually learned to tolerate her. I admit I resent that she needs me as soon as I sit down at my computer, and I also resent that she prefers to snuggle with Ralph. It is baby rearing all over again.

But I realize it is good we have a dog to train now rather than later, when it would be too much for Ralph even from the sidelines. I was about to write this up this afternoon when my cell rang.

“Do you have Lola?” Ralph was calling although I thought he was downstairs with the dogs.

“No, you saw me go upstairs.”

“I came up to the barn. I thought you had her and now I can’t find her.” Basically, he couldn’t remember if he took her with him to the barn or left her in the house. I said something snarky that I shouldn’t have and ran downstairs calling her name.

“She isn’t in the house.”

“Stop blaming me. We have to find her!”

Ralph’s calm in a crisis was always one of his signature traits, but not anymore. He began to panic, the way he does these days.

I went outside and called her name but was worried myself. We live on acres and acres of pasture and farmland. It would take no time at all for a small dog to disappear. At the front of the house, I called again. She came running from the direction of the barn.

The good news: Lola comes when called and will probably grow into the perfect companion dog for Ralph. The bad news: I really can’t expect Ralph, who has raised countless dogs over the years, to keep track of the puppy he loves.
ralph and dogs

ps.  Ralph says he thinks we should get the labdoodle puppy for Lola to play with.

Learning to Love Ralph’s Mental Check Ups

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“We” had “our” six month check up the other day at the Emory Memory Clinic. “We” and “our” are operative words because I probably get as much out of the appointments with our Nurse Practitioner Stephanie as Ralph does. The visits are medical but also psychologically therapeutic and unlike any other doctor visits I have ever experienced.

I admit it never starts well. Ralph asks if we really need to go all the way there (I have learned not to mention the appointment until that morning). And the waiting room time is always uncomfortable, Ralph and I  both secretly looking around at the other couples—everyone present is in a couple whether husband/wife, siblings, parent/child, or cared for/caregiver—trying to guess which person is the patient. I frequently realize I have guessed wrong when the person I assumed was impaired is the one who heads up to the nurse station to sign in. Ralph gets anxious because seeing people with his diagnosis but more advanced into cognitive impairment forces him to consider his own future. I get anxious for pretty much the same reason.

But once we are in the actual room, I am probably more myself than at any other time these days because we are together with someone who knows our situation, who does not look sympathetic but slightly askance at anything we say. This visit Ralph was to have a battery of tests to check his status. The tests take about 45 minutes; I actually thought of sneaking down to the second floor to say hi to a friend who works in the building. Instead those 45 minutes were filled with conversation with Stephanie about my concerns and worries. When I mentioned issues I don’t bring up anywhere else or to anyone else out of some probably misguided mix of embarrassment and guilt—and there are issues I do not bring up in my support group or even here—she responded with matter-of-fact solutions and understanding of someone who has witnessed all the permutations of cognitive impairment. My tendencies toward defensiveness, guilt, and self-justification melted. I could see clearly where I thought Ralph was on the continuum, that his memory seems to have held steady but his energy, curiosity and interest in the world has faded.

And then Ralph returned from his testing in buoyant spirits. He felt he had done really well on the test. And he had. Although he got more questions wrong than he thought, the score on his memory has held steady. (Shout of thanks to Namenda and donepezil.) He still qualifies as Mild Cognitive Impairment and is holding Alzheimer’s at bay.

We are scheduled to return to see Stephanie in six months. She said that if it was inconvenient since we come from a distance, we could skip that appointment. No way. I am looking forward to it.

My Caregiver’s Dream I’d Rather Not Analyze

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My dream:

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

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

My panic at Ralph’s initial disappearance

How much fun I was having without him

The indistinguishable noises that were his attempt at words

Ralph buried alive

My power to scoop the sand away

Ralph’s nonchalance after I dig him out

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

Ralph’s muffled life

 

Reminders of Alzheimer’s Reality

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This must be my week for videos. A few days ago the leader of my local support group sent this three-minute video About Alzheimer’s, from the Alzheimer’s Site blog,  tracing the changes in a person’s brain during the course of Alzheimer’s.

The film follows the areas of brain cells that die off as plaque and tangles increase, not information I didn’t know but stated/shown with a matter of fact approach I find refreshing. While I have to say that Ralph’s case does not follow the pattern in the film exactly–his memory for language has not been the first area compromised as the film suggests—the visualization and concise explanation are useful. I can imagine returning to watch the video from time to time to keep me grounded in the scientific reality I sometimes (perhaps willfully) forget.

Meanwhile at the group meeting yesterday, I was reminded just how different everyone’s situation with dementia is, and how lucky I am, so far. I attend rarely because the meeting conflicts with my Thursday morning Pilates class—and frankly I depend on that 45 minutes of intense concentration on breathing and stretching and keeping my shoulders out of my ears—but class was cancelled at the last minute and I was already walking out the door so why not.

It was a good meeting. Honest give-and-take, practical information. In the other group, all married couples, most of the spouses are still borderline Mild Cognitive Impairment like Ralph, but in this group the caregivers seem to be dealing with parents and spouses who are at later stages. One woman, “Jane,” mentioned that her husband has recently had to be moved into a care facility

When the meeting ended, she and I began to chat. It turns out her husband is 67, Ralph’s age. Okay, I thought, he must have started having symptoms earlier. Then she said he had been diagnosed exactly two years ago. Around when Ralph got his testing results.

I teared up for the first time in two years. How lucky Ralph and I are compared to others struggling with Alzheimer’s. And how cocky I have been in my fool’s paradise. Thanks to Namenda and Donepezil (plus a generic version of  Lexapro for anxiety), Ralph is holding more or less steady, but suddenly the reality of these videos and the stark contrast between Ralph and Jane’s rapidly deteriorating husband brought me up short: This is real life and Alzheimer’s isn’t going away.

So this when morning Ralph turned to me and said, “Coffee in bed and NPR, what paradise,”  I agreed. I’ll live in our fool’s paradise as long as we can.