Category Archives: Caregivers

Portrait of the Writer as a Woman: My New Year’s Resolutions, 2016

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UnknownDecember 2015 was a very rough month for my writing. In fact, I believe I only got one blog done, and nothing on any of my books. One of our cats was diagnosed with uncontrolled diabetes, had stopped eating and drinking, and was doing an excellent imitation of a Zombie-cat: she could have done a cameo on The Walking Dead without any previous acting experience.

Tom and I hadn’t even realized that cats could get diabetes.

After the first shock of the diagnosis, we were hammered with the cost of the insulin: $389 for 10ml. I began to weep, despite the fact that the vet said that bottle could last as long as 6 months. All I could think was that one of my babies was going to die because I couldn’t afford her medicine. Tom was too deep into shock to register much of what happened after he heard the diagnosis: he just assumed it was a death sentence, so I don’t think he heard much of the consultation beyond that, though he did hear the cost of the medicine.

Apparently, human insulin, $25 for the same amount, doesn’t work as well on cats, and the more expensive one has been shown to put many cats into remission.

Not cure.

Remission.

But I didn’t have $389. I’d just spent almost $500 on new tires for my ’99 Jeep Wrangler: my old ones had no tread, and winter was coming to the mountain. Without off-road tires and 4-wheel-drive, no one can make it up here. Over the past few months, as my car had broken down several times, with parts simply wearing out from age, I’d also paid our mechanic $2300 on a “back-up vehicle.”

Which wouldn’t start.

images-2So I didn’t have the $2300 I’d spent on my back-up vehicle, whose insurance is more costly since it’s a “classic.” I thought the insurance representative was playing a joke on me in May when I bought the ’94 Jeep Cherokee Sport, but, apparently, it is considered a “classic,” and so my insurance is higher. So there was that cost: $89/month since May, on a “classic” car that I didn’t even have, and for which I bought new tires, a new windshield, new brakes, etc. Yet it was still sitting at the shop because, despite my mechanic’s insistence that he could start the car, I couldn’t. Ever.

I still can’t.

Only now it’s sitting in my driveway.

Waiting to be towed back down to the shop, where we’ve decided to “swap it out” for another vehicle. Or, at least, to swap out the $2300 I already paid and apply it to a more reliable (read, it starts right away when you turn the key, not three days later if you’re lucky) “back-up” car.

stethoscope-1-1541316And then there were all the medical expenses.

Since the blessing of Obama-Care, my deductible has gone from $500/year to $7K in 2013, to $8.5K in 2014, to $12K in 2015, to $15K in 2016. Needless to say, I’m still paying off the “deductible” bills from 2013. Despite the fact that it is illegal to have a medical insurance deductible higher than Obama-Care’s $3K, the President or Congress or some idealist didn’t realize that you cannot have “government” health care provided by private,  for profit providers, like Blue Cross / Blue Shield (who is the only provider of Obama-Care, as far as I can determine), nor can you force other for profit insurance providers to lose money. So, technically, as my insurance provider has constantly assured me every time I’ve protested or vociferously complained, my deductible is only $3K a year.

My “co-insurance,” which I never had before and which is, apparently, unlimited, makes up the balance of what I have to pay each year.

I say deductible, you say co-insurance… let’s call the whole thing off.

So there’s that, too.

And then we got slammed with Trixie’s “uncontrolled diabetes” diagnosis and the cost of the preferred insulin.

IMG_1005My grief over the thought of losing Trixie because I didn’t have the money for her medicine encouraged the Vet to suggest that I save for the medicine that might put her into remission, while using human insulin to keep her alive and out of the Zombie-cat mode.

I’ve spent the entire month of December managing Trixie and her hypoglycemic crises. Yes, that’s hypoglycemic, as in her blood glucose falls too low. The Vet insists that this is good, and that she might already be going into remission. Apparently some 15-20% of cats can go into remission on any insulin, relatively quickly after they start treatment. We can’t know if it’s happening with Trixie yet because she needs to stabilize, and the Vet has had to lower the dose virtually every day this past week.

These are the kind of things that prevented me from writing in December 2015.

They’re also the kind of things that made me think of how different writing can be for a woman than for a man.

After all, though I’m sure Tom could take care of Trixie if he were forced to, he mostly hurriedly volunteers to take the dog out to the bathroom or to shovel 4-6′ snowdrifts away from the vehicles and the gate rather than to test her blood glucose or give her the insulin shots. Mommy is the one who does that.

Mommy also watches for the Invasion of the Zombie-cat, which means Trixie is hypoglycemic and could go into a coma or have brain-damaging seizures. It’s Mommy who rubs the Karo syrup on her gums when she becomes non-responsive and sits staring at the wall. The one afternoon I went out to do some food shopping and get a medical massage (which helps reduce my hemiplegic migraines) and asked Tom to keep a “close watch” on Trixie, he promised to do so but went out to work in the barn and was out there all afternoon. In fact, when I got home, he didn’t even know where Trixie was. Oh, he knew she was in the house since the cats don’t (can’t) go out up here on Big Rock Candy Mountain because of the wild animals, but he hadn’t been in the house himself to see where or how she was.

These are some of the events that have made me re-evaluate my usual New Year’s Resolutions: I was born a woman, but I believe I was also born an artist.

The artist in me chose writing as the medium through which to express herself, so any Resolutions have to include the fact that I’m a writer simply because that’s who and what I am.

Resolution 1:
Write More

images-5I must write more blog posts, more regularly, as I was doing for most of 2015.

If that means that Tom must do more grocery shopping and meal preparation, as he’s been willingly doing since Trixie’s diabetes diagnosis, then he’ll have to do more of the household chores as well. We’re both liberated, and we’ve always shared the chores. Now that one of my jobs as a woman and as the Mommy seems to be nursing the sick animals, Daddy will have to do more than half of the chores. We’re both retired, we both have our own businesses, but his is more seasonal than mine, while mine is much more time-consuming than his. Therefore, it’s off to the market and into the kitchen more often for Tom because Mommy, who nurses any of the animals who’s ill, needs to blog more.

My blog-reading audience is actually contacting me via the twitter and the book of face and asking me to blog more, asking me if I’m all right because I haven’t been on the social media sites during December, asking me for suggestions about what shows or films to watch (I mostly blog about entertainment). They keep telling me they need my blog posts.

They are the boss of me.

I resolve to blog more.

Resolution 2:
Lose Weight

Me & PatrickI know some of you don’t believe that’s me there with Patrick, but it is. The year was 2000, my second novel, Only with the Heart, had just come out, and since he’d optioned my first novel, The Kommandant’s Mistress, to star in it himself, he asked me to come out to LA so we could meet in person and discuss the book. (We’d talked many times on the phone in the previous 6 years, but had not met). And that was not my heaviest, my highest weight. Of course, I don’t even recognize myself in that photo with Patrick, let alone in the photo Tom recently found of me at (almost) my highest weight, when we met and fell in love in 1994.

Between 2005 and 2007, I lost 275 pounds.

I don’t know how much more than that I lost because my therapist in Ohio wouldn’t even let me look at a scale until I’d lost 40 pounds (she brought the scale in to her office and weighed me). I was at 450 the first time she let me look, and I wanted to die of shame. Instead, I resolved to conquer my eating disorder and get my weight back under control for my own health.

Here’s how I did it: I ate whatever I wanted but only when I was hungry, and, even more important than that, I stopped eating as soon as I was no longer hungry. I didn’t continue eating until I was full. Not even just a little full. I put the food away as soon as I no longer felt any hunger.

That meant I ate several small “meals” during the day. It meant that if I wanted to eat ice cream, for example, or a candy bar, then I ate that as a meal but stopped if I found I was no longer hungry even if there was only one bite of candy bar or ice cream left. I kept telling myself that I could always have it later.

I ditched my parents’ Clean your plate rule.

I threw away the Three Meals a Day rule.

I didn’t care if anyone else thought my “diet” was balanced or not.

I have an eating disorder. In the past, it manifested mostly as anorexia, when I lived on sodas and sugary iced tea rather than on food, dropping down to 120 pounds (I’m 5’8″ with a large frame: my non-dominant wrist, at my lowest weight, is 7.75″ around the bones). After my first book was accepted, the anorexia changed, for some reason, to compulsive overeating: I literally could not stop myself from eating, even if I was in physical pain from eating too much already. And I was a complete failure at bulimia, which horrified my therapist when I said that to her after I sought help.

Drugs did not help me: I had an allergic reaction to virtually every one I tried, or it made it impossible for me to lose weight.

Restricting my food intake by calories or types aggravates the eating disorder.

Weighing myself daily does that, too.

Because my Muncher mother used to starve us children.

Women who practice Munchausen’s by Proxy — called Munchers by law enforcement and medical professionals who discover their abuse, torture, and killings — do so much damage to their children, it is virtually impossible to heal it all. They’re more than the female equivalent of male serial killers because they do damage to their own family members and to others dependent on their care — in the privacy of their own homes, where no one sees them, and with few people believing those who tell what is happening within the home.

M is for Munchers cover w mask 1In any event, I needed to lose weight for my health — even though I had no obvious medical problems — as well as for my own self-esteem, but I had to do it in a way that would not trigger the Muncher-abuse-induced eating disorder, which I and all my siblings suffer from. That’s how I came up with my eating plan.

Because it had to be for the rest of my life.

I lost the 275 pounds and, mostly, I’ve kept it off.

When my favorite cat died of heart failure in 2012, my grief tipped me over into the eating disorder again, and though I knew it was happening, I couldn’t stop myself. That’s what makes it an eating disorder: you cannot stop yourself without help. I gained 50 pounds before I got my eating disorder under control again.

Then I hit what has to be one of the longest plateaus in weight-loss history ever: 2012-2014. I didn’t gain any weight, but I didn’t lose any either. No matter how little I ate or how much I exercised.

Last year, I re-dedicated myself to my personal eating plan, and I lost 26 pounds.

My doctor insists I only have the original, re-gained 50 pounds to lose, and so now I only have 24 more to lose.

I think losing 50 pounds would be better (taking me down to 150), but he insists that I’ll look like a skeleton and that he’ll be really annoyed with me if I lose more than 24 additional pounds. I say it’s my body and I can lose whatever amount of weight I want. But… this is a woman thing, I think, and even writing about it too much is treacherous because I begin to convince myself that if I could only be anorexic again — which happens after I don’t eat anything for a few days — it would all be so much easier…

And I would be treating myself just as my serial killer Muncher mother did: starving myself.

As my first therapist asked me, “Would you do that to a child of yours? Would you ever do that to one of the abused, abandoned, neglected cats that you rescue?”

No, no I would not.

So, I resolve, once again, as I did last year in Jan 2015, to continue to lose weight.

In a healthy way.

Resoultion 3:
Write More

POV cover 2015 webI will finish the revised edition of my 2001 book Mastering Fiction and Point of View. Not only have writers, experienced and new, published and not, been asking me for the new edition, but my editors actually were planning on publishing the Revised, Updated, & Expanded edition in December 2015. But I didn’t get it finished. I didn’t even get to the point where I could give it to my editors for their feedback.

Was I blogging too much?

Was I spending too much time on social media?

Was I working too much on my memoir of life with a serial killer mother, M is for Munchers?

Was I doing too much of the household chores, errands, etc?

Was I too busy learning Kundalini Yoga?

Was I spending too much time watching movies with Mads Mikkelsen — for blogging, of course…

Was I spending too much time staring out the windows?

Whatever I was doing, I do agree with my editors that I was not spending enough time working on the revision of my POV book.

I resolve to work on it until it is finished, get it to my editors so they can give me feedback, rewrite — taking their suggestions into account, and then get the book back to them so they can publish it without having to change the cover again.

They are also the boss of me, and though it probably won’t take them (or their graphic artist) too much work to change the words 14th Anniversary Edition to 15th Anniversary Edition, I really need to get this book done.

Resolution 4:
Walk More

pink-fitness-center-1432405When I originally lost that 275 pounds, I not only ate only when I was hungry and stopped when I was no longer hungry, I walked. Not fast: we live in the mountains, and you can’t walk fast in the mountains. At least, I can’t. But I walked every day.

I started with 5 minutes a day for a month. Then I moved up to 10 minutes a day. Each month, I added 5 minutes until I was at 30 minutes a day.

Despite eventually dropping down to 175 pounds, which was not the lowest weight I’ve ever been at, or even what I considered “normal” for most of my life (that would be 150 pounds), I was thinner than I had ever been. I was wearing smaller clothes, higher heels, and feeling better about my body than I ever had.

Walking, even slowly — I walk about 1-1.5 mph — can dramatically change your body shape. It takes a lot longer than running, but I can no longer run. In 1995, I fell down a mountain in Wyoming and shattered my L leg and ankle. It took 3 years to heal from the surgery, which replaced most of my bones — which had shattered into such fine dust, the surgeon had to use a surgical vacuum to get the bone out of my leg — with metal plates, bolts, and really big, long screws. Both the surgeon in Wyoming and the surgeon in Ohio, where we lived, told me I could never run again. They said that the plate would buckle and take the entire bone it’s attached to with it, necessitating another surgery and even more extensive recovery time and physical therapy.

They told me I would have to become a Walker, and this was long before most of us had heard of The Walking Dead.

I’ve walked since then.

In 2008, I was eventually walking 45 minutes a day, albeit at the same 1.5 mph pace.

Then I got a stress-fracture in my pelvis.

The doctors at the ER and those at the Sports Medicine Center told me “humans weren’t built to walk 45 minutes a day.” I think they’re all crazy: what did humans do in our ancient past, before we had animals to ride or vehicles to transport us? Still, that’s what all of them except my GP kept telling me. In any event, the stress-fracture side-lined me for several months while it was healing.

Two years ago, I discovered, during my annual physical, that I had virtually no vitamin D or calcium in my blood, and, after a bone-scan, that my bones are thinner than they should have been for my age. It’s a condition known as osteopenia rather than as osteoporosis, I guess because the bones didn’t just snap and break. They eroded over time with exercise (bones are supposed to release calcium etc into the blood when you exercise: that’s how they signal your body to send more calcium there and the bones get stronger), but my bones were too thin to begin with, and the doctor suspected that the osteopenia, combined with my exercise, caused the three stress fractures I’ve had in the last 10 years (2 in the pelvis, one in the foot).

The most likely reason for the osteopenia and the virtual lack of vitamin D and calcium in my blood?

Childhood dietary deficiency.

That’s another word for being starved by your Muncher mother.

I took supplements until I got into the low normal range, then began walking again, but I had to start all over again with the 5 minutes a day and adding 5 minutes a month routine.

In 2015, I walked 30 minutes a day, at 1-1.5 mph,  81% of the time: 297 days out of the year. I didn’t walk at all in February because I had bronchitis. That means I actually walked 297 days in the remaining 11 months.

When do I walk? After I feed the cats their breakfast — canned food, which is the only time of the day they get it; the rest of the day, they eat from the buffet of dry food — at 5 a.m. Why so early? Before we moved to Big Rock Candy Mountain, when I was teaching, I used to get up at 5 to write for at least 2 hours before I went to teach my classes at the University. Our cats thought that since I was already up, I might as well feed them breakfast.

Though I’m now retired from University, the cats still think breakfast is served at 5 a.m., and for much of the year, here in the Desert Wilderness, the temperatures are in the 90s before 7 in the morning, so, actually, walking after serving them breakfast at 5 works for this writer-Mommy, because I usually write after that.

Though I only lost 26 pounds in 2015, I lost 5 inches all over (except my bustline, which is genetically large… to Tom’s delight). In the past, when I was anorexic or “dieting,” losing an inch off my waist, hips, etc equaled losing 10 pounds of weight. Not so with walking. It may take longer than it takes with running, but walking gets you to the same place eventually. And you end up thinner at a higher weight.

This year, I resolve to continue walking and to add 5 minutes a day to each walking session.

I’ll walk 35 minutes a day, at 1-1.5 mph, and my goal is to walk at least 90-95% of the time.

Resolution 5:
Write More

The Zombied Trilogy Book One webIn January 2015, the first volume of The Zombied Trilogy was published: Love is a Many Zombied Thing. According to my editors’ plan, the 2nd and 3rd volumes of the trilogy were to have been written, edited, revised, and published in 2015.

I think it didn’t happen because, in 2014, I began completing their suggested (major) revisions to my memoir, M is for Munchers: The Serial Killers Next Door. That book has taken me years to write, and not just due to the editors’ suggestions about changes. I entered an earlier version of it in a contest in 2007, and was given enough praise and critical suggestions for me to completely change the way I was doing the book, given its subject matter. So I know I had an entire manuscript of the book, with a different title — which none of the judges in the contest liked, by the way — in 2007.

After Love is a Many Zombied Thing was published, I felt a blank about where the second and third books in the series should specifically go, although the editors and I were clear about where they should generally go. In short, I had the ideas for the remainder of the trilogy, and the editors heartily approved the ideas, but I didn’t know how to start book 2.

As is my usual practice when something won’t come in a book, I begin working on a different one. That’s how I began the revisions to Munchers.

But what stopped me from writing any of the other books was the intense grieving that writing the memoir caused.

I thought I’d done all the grieving when I wrote and revised Munchers originally.

Apparently, I had not.

The grief almost overwhelmed me.

Though Munchers was published in 2014, the grief prevented me from finishing Zombied on schedule. By the time I finished Book 1, I had already missed the deadlines for Books 2 & 3. My editors were not pleased, though they claimed to understand the grief-delay.

I resolve to finish — or at least to start — the final two books of The Zombied Trilogy.

After all, those characters, and my readers, deserve to have the story finished.

Resolution 6:
Spend More Time
With Those I Love

Ling and SophieThat means Ling (L) and Sophie (R) as well as Trixie. After all, Sophie is the one who has Feline Stomatitis, an auto-immune disease or disorder, whom we would have had to put down if extracting all her teeth, including the roots, had not put the disease-disorder into a manageable state. She gets NSAIDs every other day. Each time we’ve attempted to increase the time between doses or to reduce the dose — to protect her kidneys — the painful inflammation and swelling of her gums, tongue, and throat return. In the wild, she would have starved to death, in great pain. We have to get her blood tested every three months, to monitor the kidney function, and she’s staying steady — at an already slightly elevated rate — so Mommy has to take care of her, and that includes checking her mouth every time I give her the meds to make sure she’s doing fine.

Ling and Sophie are the ones who contracted Bubonic Plague in 2012 (and gave it to us) and almost died. I didn’t even know Bubonic Plague still existed when we moved here, but it still exists all over the world, not just in laboratories, but in dry, arid climates like the American Southwest. We already almost lost them once.

IMG_2520 It means spending time with Sascha (middle) because she’s been operated on twice in the last two years for cancerous tumors on her lower lip that have gotten so close to her jawbone that the Vet promised she would never take Sascha’s jawbone, even if the suspicious cells became malignant. When Mosie died, we didn’t even realize she had cancer until the week before she died: she began breathing strangely, and X-rays revealed the tumors. Though Mommy checks Sascha’s mouth regularly, the next surgery and pathology report — if there is one — could reveal malignancy rather than “suspicious cells.”

IMG_2397It means spending more time with Shooter Tov, the oldest of our cats (12 this month), who has FORLS. I can’t recall right now what it stands for, but 20% of Rescue cats have the condition, which has also been found in the skeletons of sabre-tooth tigers. The enamel of the teeth doesn’t re-form, eventually exposing the root or simply breaking the tooth, leaving the animal in great pain. Additionally, if the affected teeth are not removed, the disease moves into the bones of the jaw, face, head, neck, etc., killing the cat.

Shooter’s already lost 3 teeth to FORLS, two years ago, and two weeks ago, he began crying out if anything touched his face. Two more teeth have broken, exposing the roots. He’s having surgery Wednesday (and has been on pain meds until the Vet could get him in: it takes special expertise to get the teeth, root and all, out of the jaw, so that the disease will not eat away the jawbone).

I know that, even if the Vet had to extract all of Shooter’s teeth, he’d be fine. After all, Sophie’s had no teeth for over 2 years now, and she not only eats dry food just fine, she hops, skips, and dances around the house like she owns the place. Still, Shooter’s in pain now, so I’ve also been nursing him for the past 2 weeks, and he’ll be in more pain after the surgery: he’ll need Mommy, whether Mommy thinks she needs to write or not.

IMG_2417IMG_2429I resolve to spend more time with Baxter (top) and Mr. Eli (bottom), who are virtually always with me in my office while I’m writing, not because there’s anything wrong with them, but simply because we rescued them and they deserve love and attention even if they’re not sick.

IMG_2165I can’t forget Sadie-Doggie, who had to have a molar extracted last month after she began vomiting and we discovered an apricot-sized lymph-node under her jaw. Her immune system was trying to fight the infection from the rotten tooth, but it was losing. It the infection had gone systemic, she would have died. Because she’s part Border Collie, part Terrier, and part Hound, she has the loose neck-folds of a Hound, and we didn’t notice the lump till after she was vomiting.

I love all the pets we’ve rescued, and have been devastated each time we’ve lost one. As one of my friends who also rescues cats said, upon hearing of Trixie’s diagnosis, “We know they’ll most likely have health issues because they’ve been abandoned, neglected, or abused, but we have to just act as if each day with them is the last. Because it might be.”

This year, every day, I’m going to act as if each day is the very last I’ll ever have with each of my babies.

Because it might be.

Resolution 7:
Don’t Forget Tom

I know this might sound corny after 22 years together, but sometimes I probably do take Tom for granted. After all, he’s a reliable, faithful, good man, and I certainly don’t “forget him” on purpose. Other things drag at my attention — like a dying cat — and it takes me a while to remember that’s he’s right there beside me, grieving just as much. He completely morally supports my writing, and so stays out of my office and doesn’t disturb me when I’m writing — no matter how long I’m at it. (He sometimes even makes dinner, fixes a plate for me, and puts it in the fridge for me to eat after I’m finished for the day.)

Tom’s gotten up with me every single morning at 5 since Trixie’s diabetes diagnosis to take Sadie out to the bathroom, wash all the animals’ breakfast dishes, and give me a kiss before he’s gone back to sleep, and I’ve headed for the treadmill. (He’s horrified that it’s still dark when I wake him: when he worked, he worked second shift virtually his entire career, so it was always light when he woke.)

Though he doesn’t admit to panic over the animals when they’re ill, he’s clearly stressed. He could probably use some more attention and comfort, too.

He also was diagnosed with diabetes himself last year, and though he lost the 20 pounds as directed, and mostly keeps to his “diet,” he has suddenly decided that he needs to take care of himself better.

And I need to love him and appreciate him more.

I need to tell him so.

Because each day might be the last.

Resolution 8:
Read More
Books-1

Because it makes me happy.

Final Resolution:
Write More

stock-photo-20291293-vintage-woman-writerBecause it’s who I am.

And because, sometimes, as women, we have to make a greater commitment to our art due to all the other things vying for our attention.

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Filed under Blogging, Books, Caregivers, Cats, Creative Writing, Editors, Memoir, Munchausen's by Proxy, New Beginnings, Point of View, Real Life of a Writer, Writing, Writing & Revising

Normal Forgetting, or Alzheimer’s?

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After my grandfather died, my grandmother was, understandably, grieving and depressed. During that time, she found herself increasingly forgetful and began to fear that she was developing Alzheimer’s dementia. Since I’d been a full-time Caregiver for an (ex)boyfriend with Alzheimer’s, then written a novel on it, she called me one night to ask me the very frightening question: Is my forgetting things normal or am I getting Alzheimer’s?

First of all, everyone forgets things, and there are many reasons to become forgetful for extended periods. It does not mean you are developing Alzheimer’s. Some of the things that cause extended periods of forgetfulness that might frighten you are these:

  • unrelieved or extended stress, and that includes relationship problems, financial difficulties, being laid off from work, worrying about children, health problems, going back to school as an adult, being a full-time college student while also working full-time, having a new baby, being a Caregiver for anyone who needs full-time care and attention, etc.
  • certain medications, so if you’ve added new medications or increased the dosage of prescriptions that you’ve been on, check with your physician or on the Internet to see if forgetfulness is one of the side-effects
  • grief or depression, which can be caused by health problems of your own, as in if you’ve been diagnosed with cancer; loss of a loved one, through divorce, death, moving to another part of the country and losing your friends; losing your job, not getting an expected promotion, not receiving something special that you wanted, etc.
  • lack of sleep, which many people never think of since as we age, we need less sleep, but if you get too little, especially if it’s because of stress or grief, then it compounds your forgetfulness
  • not eating properly, and there can be many reasons for this: illness (short term, like the flu; or long term, like cancers), working too much, grief (when you just lose your appetite), excessive dieting (not eating enough to maintain your bodily functions, including giving your brain the only fuel it can use — glucose — to help it work properly), overexercising (and not eating enough for the work your body is doing, so that your body begins to use its own muscles as protein for nutritional needs)
  • dehydration, which can change your entire personality as well as make you forgetful

Now, let’s say you’ve eliminated all these areas which might be causing you to be forgetful. There is such a thing as “normal forgetfulness” which everyone experiences from time to time. You forget where you put your keys, you forget that you had a meeting and miss it, you forget to phone a family member when you were supposed to, you forget something at the grocery. Everyone has these episodes, and you don’t have to be stressed or ill or grieving to forget things. They are normal.

How do you know if it’s normal forgetting? You find your keys an hour later. You remember what you wanted at the grocery as soon as you get home. You remember your scheduled meeting the next day at work when you see the co-worker with whom it was scheduled. You remember you were supposed to call someone when your phone rings (and it doesn’t have to be the person you forgot to call).

Most important of all: You realize that you’ve forgotten something.

Normal forgetfulness does not continually increase, expand to other areas, or become disabling. You usually remember if you are given a cue; for example, someone asks where you usually put your keys, in your purse or on the hook by the garage door, and you recall where they are. Your vocabulary remains intact, i.e., you remember the names of things, even if you can’t find them. So, you realize that you can’t find your keys, but you don’t forget the name “keys” or what they’re for. You do, in fact, know that you’ve forgotten something, even if you don’t remember it as quickly as you’d like.

In short, you usually do remember what you temporarily forgot. That is normal forgetfulness, and all of us experience it, no matter our age, at various times.

What’s abnormal forgetting, or signs that something more serious may be wrong with you? (And this is if you are not experiencing the extended forgetfulness caused by grief, stress, depression, illness, medication side-effects, etc, since the elimination of those factors usually returns your memory to normal.)

  • Forgetting the day of the week and not being able to figure out what day it is even if you look at a calendar.
  • Forgetting which key is your house key and not being able to let yourself into your house, despite trying all the keys on your ring.
  • Forgetting what street you live on, which house is yours, what city you live in, or how to get home from the grocery.
  • Forgetting a family member’s name or relationship to you, even after someone else has just reminded you of it.
  • Forgetting who the President of the country is.
  • Forgetting what year you were born, or when your birthday is. (Your own birthday, not that of your great-grandson’s nephew’s fiancée.)
  • Forgetting your pet’s name, your spouse’s name, your child’s name, etc.

But the most important sign of Alzheimer’s or another type of dementia is this: forgetting that you forgot.

You simply do not realize that you have forgotten something. You have no idea where your keys are, but you don’t even know that you need to look for them since you need them to drive. You don’t remember your daughter’s new phone number but  you also don’t remember that your daughter even has a new phone number, even though it’s written down and hanging in an obvious place.

You don’t just forget your anniversary: you forget that you’re married or that the person living in the house with you is your spouse. You don’t simply forget your son’s birthday: you forget you even have a son even though his photograph is on your mantel. You forget that you even went into another room to look for something, in addition to forgetting that your were looking for something in the first place. These are not “normal” forgetfulness: they are signs that something organic is wrong with your brain.

Serious forgetfulness may not be Alzheimer’s. You may be having TIAs (Transient Ischemic Attacks, or little strokes), which are painless and which affect memory. You may have something else wrong, such as a non-life-threatening brain tumor, that can be cured with surgery, radiation, or medication.

How do you know when constant, increasing, disabling forgetfulness may be Alzheimer’s?

  • Daily functioning declines along with your memory (you can’t dress yourself, you forget you put something on the stove and it catches fire, you forget to eat or to keep food in the house)
  • Cueing (such as hints or notes) do not “return” your memory; looking at a grocery list where you’ve written “fruit” doesn’t remind you that you wanted to buy apples or bananas
  • You forget the names of things or what their function is, and nothing helps you recall them, and I’m not talking about technological things or how to use an iPad. I’m talking about keys, coffee pots, knives; how to turn the bathwater on, how to turn the kitchen sink water off.
  • You’re unaware that a memory problem exists; in other words, you forget that you are forgetting things (other people begin to notice it, but you no longer do)

The Clock-Drawing Test

One of the simplest, least expensive “tests” for normal forgetfulness versus Alzheimer’s dementia is the Clock-Drawing Test. Simply ask the person with memory “problems” to draw an analog clock — not a digital one — and put in the correct time (tell the person the time so s/he isn’t looking at a clock while drawing it).

The Clock-Drawing Test is scored in the following manner:

  • 1 point for the clock being in the shape of a circle
  • 1 point for having the correct numbers in the clock
  • 1 point for having the numbers in the correct order on the face of the clock
  • 1 point for having at least two hands on the clock: one for the hour and one for the minute
  • 1 point for having the hour hand (even slightly) shorter than the minute hand
  • 2 (bonus) points for having the second hand
  • 1 point for having the correct time drawn on the clock (after being told by someone else what time it is, not after looking at a clock)

A score of 4-5 is considered normal. (Please note that the Clock-Drawing Test cannot indicate mild cognitive impairment, only more advanced impairment. It also cannot distinguish between cognitive impairment caused by TIAs and Alzheimer’s, for example.) A normal clock drawing virtually always determines whether a person’s cognitive abilities are in the normal range, no matter their advanced age, stress level, etc.

If you know someone with Alzheimer’s, please take time to visit him: though s/he may not remember your name, the emotional connection is usually still there (unless the person is in the final, end-stages coma, but, even then, you can still talk to him). If you know someone who is a Caregiver for a loved one with Alzheimer’s, take them out to dinner, give them to a day off by volunteering to stay with the Alzheimer’s victim yourself, take the Caregiver some place special as a treat. Caregivers need love, attention, and care, too. Sometimes, even more than the Alzheimer’s victim.

Visit a Nursing Home or Assisted Living Home for Alzheimer’s victims: though they may not know you (or you, them), they are acutely sensitive to emotional auras, will sense your kindness and caring, and respond positively to it. You can make them happy just by sitting and talking to them, listening to music with them, bringing them flowers, etc. When I was originally researching my novel on Alzheimer’s and assisted suicide, I visited many Nursing Homes and Assisted Living Units. The fact that I was happy and smiled brought much joy to the residents; some of the mobile ones actually walked around with me, sometimes holding my hand, though they never spoke to me, simply because it made them feel good to be around me. You can do the same. It will make them happy. It’ll make you happy, too.

By the way, my grandmother, who, for a few months, was more than usually forgetful because she was grieving the death of my grandfather, to whom she’d been married for almost sixty years, was not experiencing the beginning stages of Alzheimer’s. She was depressed. She was grieving. Over time, her memory returned to normal, and thirty years later, when she was in her late 90s, her memory was still perfectly fine.

Except when she forgot where she left the car keys after she’d just finished carrying in all the groceries and putting them away, and realized that she’d forgotten the walnuts for the fudge she wanted to make and had to go back to the store for them, and thus needed the car keys. As in, right then. So she could make her famous fudge.

Related Posts

Pathetique: Struck by Alzheimer’s Again.
When one of my dearest friends became its victim

Only with the Heart: My Life with Alzheimer’s.
I learned about Alzheimer’s the way most people do: involuntarily

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Pathetique: Struck by Alzheimer’s, Again

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For Keiko
& Bacon

Yesterday I discovered, in the most horrible way, that one of my dearest friends for almost 30 years, has Alzheimer’s dementia, and is in the advanced stages. I am visiting San Francisco this weekend and have been trying to reach my friend and her husband in order to take them out to dinner. As they are both in their 90’s, I was not surprised to discover they had moved: I assumed that they no longer wished to drive and had moved into San Francisco proper to make use of its public transportation system. When I called, however, I got the shock of my life.

Someone answered the phone — a woman whose voice I didn’t recognize, and who turned out to be the Day-Nurse — and informed me, after I’d told her who I was, that my friend Keiko didn’t know me. I hadn’t even know Keiko was ill, let alone with Alzheimer’s dementia, so I just said, “What?” and the Nurse, quite uncompassionately, I’m afraid, simply handed the phone to Keiko.

Having been a full-time Caregiver for an (ex)roommate with advanced Alzheimer’s for 6 years, I immediately recognized the symptoms. Keiko claimed she didn’t know anyone by my name. She said she didn’t know the town in Ohio where we first met, and where, as a classical pianist, she taught me piano for five-six years while I was a graduate student (because I’d always wanted to learn to play the piano). She said she didn’t know anything about any books I’d written (she has all mine and has read them). She sounded increasingly upset and distressed. Then the phone dropped from her hand. The lovely, empathetic Nurse returned to the line, said, “See? I told you,” and then hung up on me.

I called back and asked to speak to my friend’s husband, who was apparently out at the bank. This time the Nurse gave me the number of the main desk to the apartments where they live: it is an Assisted Living Unit. I left a message for Keiko’s husband, Bacon.

Then I grieved.

Being intimately familiar with Alzheimer’s dementia, I realized that, though she is still alive, she is lost to me already. That is one of the painful tragedies of Alzheimer’s dementia: it steals its victims’ lives long before it kills their bodies.

Later, I spoke to Bacon. He put my friend on the phone again. This time, with him home, she sounded much calmer. Still, she did not know me. Then, he apparently retrieved the email I’d sent them this week with the photo of how I look now and showed it to her.

“I know you,” she said happily. “Is this you?”

Bacon said that when he showed her the photo earlier in the week, she also remembered me. “Unfortunately,” he said, “she goes in and out.” Unfortunately, having dealt with Alzheimer’s for so many years myself, I understand what that means: when I go to have dinner with them this weekend, she may remember me briefly, for a few moments at a time, but then she will continually and incessantly ask me who I am.

If she remembers me at all.

I’m going to their home on Saturday night to have dinner since Keiko is too ill to travel. It frightens her to the point of hysteria. That means, despite Bacon’s assurances that she’s “not that bad,” that she is, in fact, quite ill with Advanced Alzheimer’s, and only feels safe in her familiar, home environment – and only when he is with her (as evidenced by the fact that she was so upset after the Nurse handed her the phone when I called the first time, despite her being at home).

If a trusted loved one is there and the victim, despite his increasing loss of memory, still feels safe around the Primary Caregiver, the victim will feel calm when the Caregiver is around. The victim may also feel safe around others simply through intuition, even without knowing or remembering the person.

When I was researching my second novel, Only with the Heart, to get some healing and knowledge beyond my own experiences with Alzheimer’s and Caregiving, I visited many Assisted Living Units and Nursing Homes. The residents there were in various stages of moderate to Advanced dementia, but invariably, they liked me, wanted to stand close to me, hold my hand, hug me. A couple asked to come home with me though they had never met me before. The Directors of the places I visited, as well as my own therapist – who specialized in treating Alzheimer’s victims and their families – explained that sometimes dementia victims can sense kindness, patience, love, empathy, etc., just as children can. When they do, they feel safe with that person.

I hope Keiko will feel safe with me.

Last night, while Bacon and I were making plans for me to contact them Friday after I arrive in San Francisco, and exchanging cell-phone numbers, I heard Keiko continually speaking in the background. Bacon apologized, telling me that she thought I was coming to dinner that night.

Time has no meaning for an Alzheimer’s victim. There is only the present.

I grieved off and on all day and night yesterday after I discovered how ill my friend Keiko is with Advanced Alzheimer’s. Though I look forward to spending time with her and her husband on Saturday, I am not confident that she will know who I am. I hope, at least, that she feels safe enough with me to not be distressed while I am there. I know Bacon will be happy to have an old friend there who understands what he has been going through, a friend who intimately understands his loss, his pain, and his terrible grief.

I also realized for the first time, to my surprise, that when my (ex)roommate Dick had Alzheimer’s and I was his sole Caregiver, I experienced a range of emotions: anger, depression, confusion, rage, sadness, despair.

But not grief.

You see, I’d actually broken up with him, yet again, just before I bought the house. He convinced me to let him move in with me, as roommates. For some reason I still have never figured out, I agreed to let him move in with me and share expenses. However, he was in such late-moderate to advanced stages of Alzheimer’s — whose symptoms I did not recognize at that time — that he was unable to pack and move himself: his grown children came up to Ohio from Georgia to pack his things and move him. It took nine months before he actually moved in.

What a tragedy it turned out to be.

Yesterday, when I was grieving the loss of my friend, Keiko, I realized that I had never felt grief over my (ex)roommate because I had never been in love with him (which was why I’d broken up with him so many times over the years) and didn’t even like him when I let him move in with me. I also realized that, in my novel, my characters Claudia and Sam, who lose Sam’s mother Eleanor to Alzheimer’s, never grieve. They experience rage, sadness, depression, frustration, anger, guilt – all the things I felt myself when I was a Caregiver – but not grief.

Because I had not felt grief.

Of course, I also had not known that he had Alzheimer’s until after I’d moved out of the house I’d bought. But knowing that Dick had had Alzheimer’s would not have made me feel grief. I didn’t feel that emotion because I didn’t love him. It’s as simple and sad as that.

I love Keiko. I am grieving. I’m sure I will grieve even more after I have seen her, probably for the last time, on Saturday night.

I also realized that I will have to add a scene to my second novel, though the revised edition has already been published: a scene where Claudia and Sam grieve, inconsolably, the loss of Eleanor before she dies. Because Claudia and Sam do love Eleanor. Very much.

Someone once told me that the hardest part of death is that, though you can continue, all your life, to love the persons you lost, those people are no longer there to love you back. That is true of Alzheimer’s, too, only its victims are “no longer there to love you back,” despite your loving or caring for them, long before their bodies finally die.

Keiko used to play classical piano. I loved to hear her. She was wonderful. Because I didn’t start piano lessons until I was an adult, my hand and arms muscles were already formed, and I could never make my hands and fingers play the music I heard in my head. Keiko could, and she played beautifully.

Her husband says she can no longer play, though she still sometimes understands the word “piano” and sits at it. Not playing. Just sitting. I wept for over an hour after he told me that just because I know how much her music and playing the piano meant to her. And because I know how much her husband used to love to listen to her playing while he was working in the garden or around the house.

This, then, is for Keiko.  Beethoven’s 8th Sonata (sometimes referred to as Sonata Pathetique ), 2nd movement: Adagio cantabile. With love.

Update (28 Dec 2016): Keiko did remember me very well when I had dinner with her and Bacon when I was in San Francisco in 2013. Unfortunately, she deteriorated so rapidly that she only spoke once more to me, with the photo of the three of us together in her hands, and she kept asking me why she hadn’t seen me at the Home, and telling me that I’d looked “pretty in my Nurse’s uniform.” After that, she couldn’t remember me even with the photo. She didn’t realize she was suffering. She didn’t know she was ill. But her poor husband Bacon was showing great strain and depression the last time I spoke with him. Caregivers need at least as much love and support as the victims of Alzheimer’s, even when they live in an Assisted Living environment and have the help of staff. If you know someone who is a Caregiver, please take her out to lunch, or give her a break from the 24/7/365 nursing responsibilities.

Related Posts
Normal Forgetting, or Alzheimer’s?
Only with the Heart: My Life with Alzheimer’s.

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Only with the Heart: My Life with Alzheimer’s

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It is only with the heart that one can see rightly:
what is essential is invisible to the eye.

Antoine de Saint-Exupéry
The Little Prince

I learned about Alzheimer’s the way most people learn about the disease — involuntarily, when someone they are involved with gets the disease and they themselves are forced to become full-time Caregivers, as I was. My ex-boyfriend, Dick, whom I’d been dating off and on for several years, decided that he wanted us to move in together after I was purchasing a house. As roommates. Despite the fact that I’d broken up with him several months previously, and despite the fact that we were no longer involved in a relationship, I decided to share a house with him. I have no idea why I let him convince me to allow him to move in with me, but I did. I believe Dick had Alzheimer’s at that point, but, because I was completely unfamiliar with the disease and had never known anyone who had it, I didn’t recognize any of the early symptoms of Alzheimer’s dementia.

For instance, when we decided to move in together, we also agreed to buy Mortgage Insurance, which pays off the mortgage should one of the owners die. Afterward, however, Dick denied ever even having that conversation with me. I was hurt. It never occurred to me that he simply couldn’t remember having that conversation or agreeing to purchase that Insurance. I thought that, for some reason unknown to me, he was simply being spiteful.

Soon after we moved in together, Dick began having serious troubles at the University, where he taught Mathematics. Though students had been complaining for a few years already that he was difficult to understand when he lectured — and, conversely, he complained that they were inadequately prepared to take the Advanced Calculus classes that he was teaching — the complaints became more frequent and vociferous: to the point where the students walked out of his classes en masse, went directly to the Chairman, and insisted that Dick simply made no sense.

Dick was then assigned lower-level Algebra classes, which outraged him because it was, as he claimed, degrading for someone of his intelligence to be teaching such basic classes. Unfortunately, despite Dick’s “keen intelligence” the same scenario ensued in the lower level, basic classes. Dick had a drop-rate of 98% — the highest at the University. He blamed it on the students’ lack of preparation. Once again, the students blamed it on the fact that he made no sense, adding that whenever they asked him questions, he yelled at them or gave nonsensical answers. Dick was then assigned the Basic Arithmetic classes. The Chairman must have thought that anyone could teach those classes without difficulty.

Unfortunately, because the Chairman didn’t know Dick had Alzheimer’s — because nobody knew that Dick had Alzheimer’s — the Chairman was wrong in believing that Dick could teach the simplest classes. He couldn’t.

Dick was forced into early retirement in the middle of the quarter: a friend took over the classes. Dick was simply unable to teach any longer. In hindsight, I realize that the Alzheimer’s was beyond even the moderate-advanced stages by then, but no one knew it at the time. Not me, not his colleagues, not his family or friends, not even his physician.

Dick became depressed. Unbeknownst to me, he called his grown children, both of whom lived in other states, and told them that there was no food in the house and that I was forcing him to eat dirt. Imagine my shock and horror when, one evening, the police arrived at the house, telling me that Dick’s daughter had called them and said it was an emergency, that I was starving her father, “holding him prisoner,” and that Dick had called her “in fear of his life.”

As soon as the police came, they examined all the cupboards and the refrigerator, all of which were full of food. They also saw the partially eaten roast still in the pan on the top of the stove. They asked Dick if he’d eaten any of it. He said he didn’t remember. I told them I was a vegetarian and hadn’t eaten meat for over 10 years. While they were standing there, Dick went over to the pan and began tearing off pieces of meat, stuffing them into his mouth.

The police looked at each other. They looked at Dick again, who, at that point, was about 30-40 pounds overweight and had a huge belly. One of the policemen made the remark, to Dick, that he didn’t look like a man who was “starving to death”. Dick then pointed to me and said, “She forces me to eat dirt.” The officers asked him to show them the “dirt” I was forcing him to eat. He went over to the cupboard, opened it, and took out a dish of homemade, dark chocolate fudge with walnuts. He peeled back the foil. Over half the dish was gone: I’d just made it that morning. And I hadn’t eaten any.

Both officers, who knew us since we lived in a small village, went over to the pan of fudge. They asked if they could have some. “It’s dirt,” said Dick. “With rocks in it.” The officers ate some. “Damned good dirt,” said one, while the other asked for the recipe so his wife could make it.

They then asked Dick if he’d called his daughter and told her that I was starving him. He looked confused. They asked if he’d told her there was no food in the house, or that I was forcing him to eat dirt. He pointed to the fudge: “This is dirt,” he said. The officers apologized profusely and left. Dick asked me why the police had come to the house. After I explained it, he said, “But why did the police come over?”

Whenever his daughter called the police again, they refused to come to the house.

I thought Dick had “lost his mind”, but Alzheimer’s dementia never occurred to me. I knew nothing about it. All I knew was that ever since we’d moved in together, he seemed constantly to be lying, forgetting things, accusing me of being a liar over the most ridiculous things — like not doing the laundry, which was sitting, clean and folded, on his bed — having more car accidents, getting lost when he went to the grocery or to his daughter’s home for holidays.

Once, a Highway Patrolman found him by the side of the road in Illinois — two states west of where we lived, and nowhere near his daughter’s house in Georgia where he’d been traveling for Thanksgiving — confused, agitated, wringing his hands, crying. The officer only managed to reach me because after he contacted the local police, based on Dick’s driver’s license, which also happened to be expired, they’d given the Patrolman my name and my phone number at the house.

Dick’s daughter, who’d been desperately calling the Georgia Highway Patrol and all the hospitals when her father hadn’t arrived after five days, drove up to Illinois to get him and take him to her house. Her husband drove Dick’s car. Even then, she didn’t suspect Alzheimer’s, or, if she did, she never told me about it. Instead, she accused me of being selfish by not coming down to Thanksgiving with him and forcing him to drive alone (I hadn’t gone down to any holidays with him since before we’d moved in together, because I’d broken up with him, but I guess she didn’t remember that, or else he never told her that we weren’t in that type of relationship any longer).

Dick continued to deteriorate. Most important to my professional life was the fact that he seemed to “get increasingly sick” when I took out a loan to write my first novel — a loan for which he was in no way responsible since we were merely roommates sharing a house together: we were not married and had no finances in common. He constantly raged at me for taking out a bank loan to write “a stupid novel”, called me names, tore up what I was working on (no computers then — it was all handwritten) so that I was forced to hide my work, and stealing things: like my pens, paper, written drafts of the book, and research materials. I thought he was trying to punish me by keeping me from writing the novel by acting helpless. I did believe that he was really depressed — not because he had Alzheimer’s and was losing his memories — but because I was writing full-time, and he was jealous.

Dick often denounced my writing full-time, especially because, according to him, I’d been “stupid enough to take out a bank loan at 17 7/8% interest to write” since my own University would not allow me to take the year off with pay. Every day when I wrote, he’d literally break into my locked office where I was working, screaming things like, “Everybody has dreams and nobody gets to live theirs, so why should you?”

I admit that I began to hate him.

I very much regretted having moved in with him, especially since I’d broken up with him, once again, just before purchasing the house.

But since people like my parents and family had also always mocked me for wanting to be a writer, and had actually tried to prevent my doing so, I thought it was something all writers had to put up with. I still never suspected anything like Alzheimer’s.

I knew Dick was jealous, but didn’t understand why.

I was an English major/Professor who’d wanted to write since I was 6. He was a mathematician. What did he care if I took a year off work, took out a bank loan to live on, and wrote a novel? When he “calculated the odds” of my writing a novel that could actually get published as “less than 1 in a million, and by the way, closer to 0 than to 1”, I thought he was just cruel, and remembered why I’d broken up with him at least 10 times over the years we’d been dating, and wondered, furthermore, why I’d ever agreed to move in with him in the first place.

Dick’s condition worsened. He didn’t eat unless I cooked, but then called his daughter immediately after eating to complain that I was starving him. He didn’t go anywhere unless I forced him to leave the house, like when I took him to the Doctor’s office, but complained that I’d taken away his keys, locked him in the house (with me, I guess), and was holding him hostage. He didn’t even get out of bed. He never got dressed. He wore the same pair of mangy underwear even if someone came to the door and he answered it. He only talked to me to swear at me and call me by his ex-wife’s name. The only other person he talked to was his daughter: to complain that I was abusing him.

I thought Dick was doing everything in his power to keep me from writing and, determined not to let him control me, I continued writing even as I was taking care of him. I got pneumonia twice within 9 months. The second time, I got pneumonia with pleurisy, a very painful condition, and had to drive myself to an Urgent Care Center on Christmas Eve because Dick refused to do so, insisting that we were “divorced” and calling me by his first wife’s name. When I got angry that he kept calling me “Deborah”, he’d laugh and say it was just a joke.

Some joke, that Alzheimer’s.

His condition worsened when I returned to school, though his depression apparently lifted somewhat. He continued calling me “Deborah”, whom he’d divorced almost 30 years earlier. He accused me of having an affair with a previous boyfriend, one I hadn’t even seen or spoken to in over 15 years. He accused me of stealing money — how I could’ve done that, I do not recall. He accused me of trying to poison him. Probably by forcing him to eat dirt. The supposed adultery, theft, and poisoning he relayed to his children. Dick’s daughter drove up from Georgia to confront me, insisting that her father was ill and that I needed to take care of him better. I asked her to give me a break from taking care of him — I’d been doing it for almost 6 years — by taking him to Georgia to live with her, putting him in a Nursing Home or Hospital or Assisted Living Unit in Georgia, where she could be close to him. She was outraged. She claimed that she had enough to do with two small children, and that, besides, it was my responsibility as his “girlfriend.” When I told her we were only roommates, she just stared at me, her hands on her hips.

His son, in medical school in Michigan at the time, refused to take any more of his father’s phone calls, repeatedly calling Dick “crazy”.

Then came the physical violence.

My first novel, The Kommandant’s Mistress, had not only been published by HarperCollins and sold to publishers in 10 foreign countries, but had been reviewed extensively and well in most major, important publications, such as The New Yorker, Glamour, The San Francisco Chronicle, New York’s Newsday, and, most important, in The New York Times Book Review. One day, when an especially prestigious review came out, after Dick screamed at me and punched a few holes in the walls of the house, he got into fisticuffs in public with complete strangers at a local doughnut & coffee  shop. The police escorted him home with a warning that they would arrest him if he ever did anything like that again. As soon as the front door closed, Dick turned and screamed at me, “I’ve done more in the world of mathematics than you could ever dream of, and you’ve gotten more national and international attention than I ever have, and all you did was write a stupid little novel.”

I realized then that, no matter what was wrong with him — still, never suspecting Alzheimer’s — our arrangement as roommates was over. I had to move out.

Then he hit me. Punched me, really. Right in the face.

He threatened to kill me, and, indeed, raised scissors and stabbed them at me.

I left the house.

I found another place to live.

I began to see a therapist, who advised me never to be alone in the house with him while I was packing my things, and to begin sleeping at the new house I’d rented. I did. On the last day at the old house, when the movers came to get anything I couldn’t move myself, Dick, calling me “Deborah” over and over, beat me up right in front of the three burly, male movers. All of them were so terrified, they simply stood there. None of them came to my aid, and they refused to come back into the house until the police arrived and made Dick leave the premises until I was moved out.

We’d lived together as roommates almost 6 years, and I’d been his Caregiver the entire time. He’d attacked me physically, threatened to kill me, destroyed my personal property. Yet I felt guilty for leaving. I don’t know, in hindsight, if I would’ve felt less guilty had I known he had Alzheimer’s. Perhaps his children, especially his daughter, might have stepped in sooner to help care for him, I don’t know.

I only knew that I had to save myself, and save myself I did. From Dick and his violence, Dick and his jealousy over my professional success, Dick and his rages, Dick and his crippling depression, Dick and his incessant lying. Dick and his Alzheimer’s.

It was only afterward, when he kept coming over to my new house and asking me when I was coming home, stopping me in the street or at the grocery and asking why I never came home anymore, that I began to suspect that something was seriously wrong with Dick.

Something besides jealousy over the fact that I wrote a novel that actually got published. Something besides the fact that my novel got good reviews and won awards. Something other than my promotion to Professor and my being awarded tenure at the University. Something was wrong with his brain. When I told my therapist, who happened to be an expert on Alzheimer’s, her eyes widened. She was the first person who began questioning me in detail on some of Dick’s behaviors. It was she who suggested that Dick not only had Alzheimer’s, but that he was in the late-moderate to advanced stages, and that, furthermore, she suspected Dick had had Alzheimer’s when we first moved in together, if not several years before that.

I was stunned.

As I began to research Alzheimer’s, I saw more and more evidence that Dick did, indeed, have dementia of the Alzheimer’s type, and had had it for years. Certainly he had it all the 6 years we lived together, but he had also exhibited signs of it for several years before that.

For a long time, I was saddened and depressed myself.

Then, in an attempt to heal myself, I decided to write a novel about my experiences with Alzheimer’s dementia and as a full-time Caregiver: Only with the Heart. It helped me heal because I was honest about my feelings as a Caregiver. I also tried to understand what it must be like to be a victim of Alzheimer’s: to lose your memories, your life, your very self. Eleanor, the character in the novel who has Alzheimer’s, narrates the second part of the book, after she has Alzheimer’s. Many readers have thanked me for helping them understand what their own parents or spouses had been going through. Publishers Weekly wrote, “It is a testimony to Szeman’s skill and artistry that Eleanor, stricken with Alzheimer’s, is perhaps the most reliable narrator in the book.”

Irish folksinger Tommy Sands, who lost his own mother to Alzheimer’s and wrote a song to her called “Good-bye, Love, There’s No One Leaving”, graciously met with me while I was writing the book and told me that, every time he performed that song, he felt his mother’s spirit on the stage with him. He was honored that I wanted to include it in the novel — as a song that Sam plays for his mother Eleanor — and said that his mother would have liked me.

Here’s Tommy’s song, as well as his commentary about his mother’s Alzheimer’s and his guilt about putting her in a Home.

Good-Bye Love There’s No One Leaving
(Tommy Sands)

Now is the moment of parting,
I can feel all the fear in your hand

Leaving a home full of memories,
on the verge of a strange new land

It doesn’t seem so long since the last time,
the first day you took me to school

Searching for words that are gentle,
being brave so the tears don’t come through


Good-bye love, there’s no one leaving

Good-bye love, there’s no one leaving

How swiftly the years seemed to follow,
but I never could see you grow old

We both turned the hay in the summer
and we sang when the winter was cold

And the stories I tell to my children
are the ones that you told me before

But the story now slowly unfolding
is the saddest story of all

Good-bye love, there’s no one leaving
Good-bye love, there’s no one leaving

I don’t know how much you can hear me,
but you seem quite content on your own

Are you drifting away to the summer
of the days of your childhood at home

And just when I feel I’ve betrayed you,
I am lost and I don’t know what to do

You smile and you whisper, My darling,
you must go and take your wee ones to school

Good-bye love, there’s no one leaving
Good-bye love, there’s no one leaving

And Tommy’s comments, which he also told me when my boyfriend and I had lunch with him during an Irish folk-song festival, where he sang this song. (By the time we met Tommy and he graciously gave me permission to use his song lyrics in the novel, his mother had already died.)

[1995:] I couldn’t help but feel a sense of betrayal as I led my mother out through the door of the family home for the last time. She had Alzheimer’s disease and we weren’t able to look after her anymore. I could feel the fear in her hand, just as she must have felt the fear of uncertainty in mine the first day she led me out to school. Early the next morning in the unfamiliar surroundings of the residential home I sat with her, not wanting to, or knowing how to, leave. She was the one who came to the rescue as usual. “You must go and take your wee ones to school,” she whispered suddenly. She had done her duty, now I must do mine. We still wave good-bye nearly every day as she drifts with dignity further and further away from the pains of the earth towards the perfection of the heavens. My thanks to the great people in Kennedy’s Home, Rostrevor, for being so good to her.
(Notes, Tommy Sands, ‘The Heart’s A Wonder’)

My novel Only with the Heart was published to critical acclaim, and is on the recommended reading list of most Alzheimer’s Chapters across the country. After writing it, I did feel that part of my own pain had healed. I also thought my experiences with Alzheimer’s were over.

I was wrong.

About 13 years after I’d left Dick, just before I was to move out of state, he appeared at my front door. My boyfriend opened the door, realized who it was and, locking the screen door, called to me. When I came to the door, Dick asked when I was coming home.

Without saying anything, I closed and locked the door (my therapist and the police had advised me to do this, for my own safety, whenever Dick showed up). Dick wouldn’t leave. He kept standing on the front porch, wringing his hands, crying, shouting, “Just tell me when you’re coming home.”

I phoned the police, who had been there many times before to escort Dick back to his house, trying always to explain to him that I didn’t live with him any longer, that I hadn’t lived with him for 13 years, and that he had to stop bothering me.

That was the last time I saw him: one of the officers was trying to convince Dick that he had to go home, the other was phoning Dick’s daughter and telling her that someone would have to drive up from Georgia to deal with this ongoing situation, Dick was swinging at the officers while trying to persuade them to get me to come home with him. He left the premises in the back of one of the squad cars, and one of the officers drove Dick’s truck home. The officers later returned to make sure that I was all right. They were always very good about that: protecting me from someone who, through Alzheimer’s, had unfortunately not only lost his memory but become physically violent.

Only with the Heart was born out of my unwilling experiences with Alzheimer’s and with being a Caregiver 24/7/365 for almost 6 years. My “patient” did not die and release me from being his Caregiver. Instead, he became violent, threatened repeatedly to kill me, and attacked me. A part of me died, many times over, because of Alzheimer’s. The part of me that survived left Dick and his disease so that I could live. Dick has 2 grown children and an ex-wife who, I imagine, have taken good care of him. If they put him in a Home, then he was well taken care of by the staff. I don’t know whether he’s still alive. If he is, I know that he doesn’t remember anything about me or most of his life by now.

That is the saddest part of Alzheimer’s dementia: it steals lives — the victims’ and the Caregivers’ — long before it ever kills the victims.

And, so far, there is absolutely nothing we can do to even slow it down, let alone cure or prevent it.

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