Alzheimer’s Anecdotes, Chapter 11: Anorexia Unchained

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September 12, 2014. This morning, deep in pain as she often is (from other ailments, not her Alzeheimer’s Disease), Pam asked a “favor” of me–and anorexia raised its fleshless skull, peering out through empty eye sockets.

I got out a latex glove and located the menthol-and-camphor powered cream while my wife shucked her shirt and bra. These “heat cream” sessions require her skin to be available from right up in the hairline to all the way down her spine with side trips to shoulders and upper arms as well as lats and ribs. There isn’t a spot on that route that doesn’t hurt on my redhead, thanks to fibromyalgia, an early career as a world class athlete, and a whole host of other input factors.

“What,” I asked in shock, “do you weigh today?” It’s my responsibility to see that her weight is monitored…but in recent weeks, I’d blown it big time. Every now and then I’d asked her if she’d weighed that day. Every time she’d answer yes, usually giving a weight somewhere between 93 and 95 pounds. It was obvious her reports hadn’t been accurate; her shoulder bones were jutting up like beach boulders at low tide, nothing covering them but skin.

How had I made such an egregious error in monitoring my beloved, an error that could conceivably have led to her early death a la Karen Carpenter? It’s like this:

1. From the day we met, it’s been my practice to treat Pam as a high functioning human being who can be trusted 100% and whose word is gold, an approach that unfortunately had not been followed by many if any of the people around her during her earlier years.

2. Unfortunately, that does not–cannot–work without qualification when it comes to a person with Alzheimer’s. Pam has struggled with anorexia for most of her life, focusing on others, doing far too little to take care of herself, and generally disliking far more foods than she liked. But with the advent of her dementia, the problem has developed another (and quite typical) aspect: She often forgets completely that she has not eaten anything–or at least not very much–and when the lack of eating reaches a certain point, the very idea of food makes her sick to her stomach.

3. Also with Alzheimer’s, as I’m learning in part from an excellent book titled Alzheimer’s, a Beginning Guide (written by Frena Gray-Davidson of Bisbee, Arizona, and available on Amazon), it’s a really bad idea to simply ask if she’s done something–such as eating, or stepping on a scale. She may not remember one way or the other, in which case she’s likely to provide the answer she knows I want to hear.

Oo-oops!

When we were done with the heat cream application, I got out the scale and zeroed it. As a mini-athlete on the order of American Ninja’s Kacy Catanzaro, Pam’s five foot frame has an ideal weight of 100 pounds with her safe weight being 95 pounds. (According to me. According to her, she’s safe at 93 pounds.) Either way, we agree that dropping below her 90 pound “floor” screams, “Danger! Danger!” The lower she drops, the more noticeable her heart murmur becomes, the more pain she experiences, and the more she hates, really hates, food in all its forms.

Once any mammal is far enough into starvation mode, being repulsed by food is a normal response. Years ago, I remember reading an article about an ultra-severe Wyoming winter in which huge numbers of deer starved to death in deep snow and arctic temperatures. Air drops of hay were organized, but many of the deer were already too far gone. With a bounty of food ready to chomp, the starving deer ignored it, choosing death rather than the horror of forcing down a mouthful of hay.

I’d raised the alarm. Pam was spooked, too. What tale would the scale have to tell?

I got out the scale and zeroed it.

I got out the scale and zeroed it.

The tale of the scale was grim: 85 pounds. This is a potential death sentence for Pam and she knows it.

“When’s the last time I was down to 85?” She wondered. I certainly did not know; during our 18 years together, I’ve caught her a number of times at 90, a couple of times at 88, but 85? This was an unwelcome first.

Her former husband would know. “He used to bring me 6-packs of tacos from Taco Bell,” she said. “They were the only thing I’d eat.”

She was torn up, terrifically upset with herself. For my part, I’m not into guilt or self-recrimination these days but knew I’d blown it. Hopefully, it wouldn’t happen again any time soon; a number of things that were overloading my plate have recently moved toward resolution. I should be able to stay better focused on keeping Pam alive a while longer, which is of course my primary mission at the moment.

What to do? There was food in the house, but nothing she could face without first forcibly breaking her food repulsion with a severe effort of will. In the end, we left the house, got into the truck, and drove to the local Morningstar Café where we explained her problem and ordered her a hamburger patty with mashed potatoes and gravy, tomato slices, and a big glass of milk, plus a second order (without the milk) to go.

Pam may have Alzheimer’s, but she’s still a woman of purely indomitable will. She knew she had it to do and she did, forcing down 90 percent of all the food on her plate. Then we grabbed the to-go order and headed out to the truck. Oops; she needed a fountain drink to go; I rounded up a well-iced Coke–for which the owner of the café refused payment, saying, “It’s on me!”. Back out into the parking lot, and–oops again. Pam had not been able to hold it all down; she was vomiting.

Believe it or not, this gal is capable of “selective vomiting”. I’ve always marveled at that. She lost most if not all of the tomato slices and a bit of fluid…but only one tiny particle of meat. Most of the calories, carbs and protein included, stayed down.

Not that she didn’t have to fight the rest of the afternoon (it was around 3:30 p.m. when she finished at the café) and early evening to retain the lot, but by 7:30 she was able to ask me to get a cherry yogurt out of the fridge to top off her day’s intake.

“That went down smooth,” she smiled. Then, “Uh-oh.” The battle to keep from hurling was on again, just like that.

But she made it. To all you mundanes out there, what she managed to take in and keep down today may not sound like much–but in our eyes, it was a huge accomplishment. She and I will both have to keep an extra stern eye (or four) on her food intake for at least the next few weeks, but it should be doable. She has no intention of dying just yet, though this afternoon, battling to get down one more forkful of mashed potatoes with gravy, she stated several times, “I know I’m at Death’s door.”

She wasn’t far wrong. Her size zero jeans were falling off her today, or close enough to make no nevermind. But after eating at the Morningstar, “selective hurling”, and returning to the Border Fort, her body was already clearly recovering. Before we went to eat, the wrinkle lines radiating from her tummy were a marvel of wavy spokes radiating all across her torso as her belly button was gnawing on her backbone. Afterward, her stomach looked good, just a couple of minor wrinkle rays left out of a dozen or more.

“Do normal people like to eat?” Pam asked.

Her question was sincere. The answer, of course is (with some qualifications) a definite yes; “normal” people do like to eat. In that respect, the individual with Alzheimer’s can sometimes be anything but normal–and I, for one, had best pay attention to that fact.

8 thoughts on “Alzheimer’s Anecdotes, Chapter 11: Anorexia Unchained

  1. Hope she keeps eating well for both of you. And yes Pam, most people like to eat. I love food too much, and it shows. I sometimes wish I didn’t like it so much. I hope you learn to like food someday. The flavors can be intoxicating. We went to Golden Corral tonight and they ate that wonderful fish. I had some wonderful shrimp and lots of fresh veggies. They also had the Chocolate cherry cake, which I love.

  2. I’ll pass on your good wishes to Pam, but it’s not likely she’ll ever learn to like food in this lifetime. There’s a dish here and there she does appreciate when she’s not in “anorexia repulsion” mode, but even then it has to hit the plate perfectly or it’s no go. She does luck out occasionally; it’s just not often enough to keep her body well fueled on a day to day basis. I remember the first time I was fully aware I was in the presence of a true food lover. It was at a spiritual seminar venue years ago, the evening before the program got going. Several of us went out to find something to eat. My friend’s girlfriend, an attractive blonde in her thirties, had a blueberry compote that had her literally moaning in near-orgasmic ecstasy.

    I was quite amazed. I’d never before witnessed a relationship of that intensity between a human and a flavor.

  3. Good Morning fellow desert folks. Happened upon your writings via google search for a good pic of a centipede, mine scurried off before I could grab the camera, hope you don’t mind if I share with my lady friends many have no idea how big they can be.

    My brain cells have yet to kick in full speed for the day but your above posts about “the A” and your Pam hit deeply to home for me, a subject and condition so hard to understand, which is understandable in itself…. I hope to make some sense here. As I ventured into getting well my 2nd time around, my young and witty doctor suggested I eat my most favorite desert food every morning that I was able to stomach… with that started Strawberry Shortcake piled with Whip Cream at least 3 of 7 days per week for 1 year, shakes and malts are a bit easier to get down and workable with all their calories.
    Please pardon my long post, my heart goes out to your beautiful redhead, we are sisters of a condition hard to fathom by most. Today, I foolishly sometimes wish it would revisit me just for a day because of my weight but grateful so far it has not.

  4. BeachBum2U, thanks so much for commenting. I happen to be one of those rare husbands who can truly understand the condition because of having a brief (acute, not chronic) go at it myself around 40 years ago. I was at that time trying to be a “food purist”, avoiding a lot of processed stuff…and I paid the price, finding too little “acceptable” to eat and thus eating too little altogether. The story is worth a full post in itself, but long story short, I got down to that “deer starvation” mode where all food repulsed me vigorously.

    Fortunately, I was able to figure out (after just an hour or two of lying down sick) what I’d done to myself–but then of course the question was, how did I make myself eat? The ONLY thing I could come up with was…maybe a banana split, which my (now ex) wife and I managed to locate. I choked that down (whereas normally banana splits would be pretty much inhaled). It took two more days of struggle to get myself to the point of managing the same with a cheeseburger–and that did it. Once the red meat protein and carbs were up and running, I was back in shape and never let myself make that mistake again. But I remember the experience with considerable clarity and for that reason have a good deal of empathy for Pam and others (like you) who’ve had to battle “the A”.

    About the mighty desert centipede: No doubt because I built the Border Fort right down on, and to a slight degree, in the Earth itself, we wind up getting an average of 3 of those humongo centipedes in the house every summer/fall. This place is super-tight; not even the average bug can slip inside–but those flat bodied centipedes (plus one scorpion in the past 5 years) occasionally, I believe, manage to slip under the front door weather stripping.

    Fortunately, for whatever reason, none of them have ever headed for Pam’s room. Only once have I managed a safe capture and release of a centipede in the home–the one in the post. The rest of the time, not daring to let them get hidden in this still somewhat cluttered home (still working on that), I’ve killed them, on an average of 3 per year. This year, we already have our “quota” thanks to 2 kills just yesterday, the last one being a good 6 incher.

  5. Ghost, I hope Pam’s weight comes up soon. My favorite aunt died of dementia a few years ago. She would forget to do everything but smoke. She was emaciated when she died, even tho she and my uncle had moved in with my cousin and her family so she could be looked after. I pray Pam continues to nourish her body.

  6. Pam’s rebounding swiftly–as is usually the case. She has multiple family members assisting her with reminders to eat, me in the home full time, her eldest daughter texting her several times a day, and her daughter in law doing the same on weekends (when the daughter is busy with her own family and cannot contribute quite as much). One full day after bottoming out at 85 pounds, she had gained 2 pounds, up to 87. The second day of recovery, culminating in stepping on the scale about an hour ago, showed her at 88.3 pounds, another 1.3 pounds up. We hope to see her back to at least her “safe weight” of 95 within a maximum of two weeks from the starting point.

  7. Pam’s still improving rapidly, Sha, adding another 1.4 pounds to weigh in at 89.7 lb. this afternoon. So far, so good.

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