Sam Woodfin's Micro

Hittin' the Road in Style

Mom checking out my leopard-print steering wheel cover.

Note the lack of keys in the ignition. ;)

Waiting for the Schwan's Man: A Family Conspiracy

Mom wanted to spend some time outside, today, so I took a chair out for her to sit in, and brought her her electronic cigarette. Since I can't watch her in the yard and the dog in the house at the same time, I brought Jerry out, too, and we all just hung out for a while.

 

As it turns out, mom had caught a glimpse of the Schwan's man, driving by in his Schwan's truck, full of Schwan's ice cream. She was watching for him to come back by, with the intention of flagging him down and talking him into giving her ice cream.

No, she wasn't kidding.

 

I have no idea what Jerry was watching for -- he's completely unfamiliar with the Schwan's man -- but he was doing some heavy-duty staring, himself. (Only for a little bit. He spent most of his time  in the yard wearing me out.)

 

And this??? I didn't realize how damning this pic was until I got in the house and uploaded it to the computer. Now, though, I'm convinced they've been plotting behind my back!

Not Satisfied With Your Health Care? Change Your Provider

Not everyone has that option, of course. Living in a small town, I understand that. But I also know that changing health care providers makes some people nervous. My mom was nervous about changing clinics. I was nervous about it, too, and I'm the sort that will stand and argue with a doctor when I know they're wrong. But changing Mom's health care provider has turned out to be one of the best decisions I've made in a long time.

I've written a bit, before, about liking the new clinic; but her last appointment, a couple of days ago, sealed the deal, for me. We were only going in to get the results of a complete blood count they'd drawn for two weeks before. The clinic is only about a block away, and we walked to Mom's appointment. By the time we got there, though, Mom was a bit tired and winded. The clinic loaned me a wheelchair to push her home in. And, yesterday, they offered to help me get her a wheelchair of her own. We talked for a bit, though, and since we agreed that -- when she feels up to it -- the walking is actually good for her, we worked out a simple solution: They agreed to let me borrow the wheelchair, on the days that she needs it, in order to push her to her appointments. This way, she'll have the assistance when she needs it, without being encouraged to just sit down and stay there.

Another fantastic thing about the new clinic is that, instead of just telling me that Mom's test results were good, the nurse practitioner showed me all of the results, explained how they were to be read, and told me what each result meant. After years of being mildly anemic -- and I'll come back to that in a moment -- Mom's blood count was completely within the normal range, minus one or two small exceptions.

Her total cholesterol was borderline high, but -- and this is a big "but" -- one of the reasons for that is that her HDL cholesterol was high. HDL is widely considered "good", or protective, cholesterol, and I was thrilled with that particular elevation. The nurse practitioner never mentioned statins. They simply never entered into conversation, not even as some future option when/if her cholesterol rises later. Yay for no unnecessary meds!

Her protein level, while still within the normal range, was on the low end of normal. "So, more meat?" I asked.

"Yeah, more meat," he said. "Fish, chicken, whatever she likes."

Lastly, Mom has gone from mild anemia to a slightly higher than normal red blood cell count. I would worry about that if 1. a high red count weren't a normal response to COPD, and 2. the count had been high enough to concern her nurse practitioner. As things stand, though, I'm wondering if her long-term, low-level anemia may have been a side effect of some of the medication she had been on, before.

For this next bit, it's important to understand that my mom is not hypertensive. She does not have high blood pressure. I always ask for her numbers when her blood pressure is taken, and even in distress, her systolic isn't going over 140. Her diastolic would be lucky to hit 75. I'll reiterate: She is not hypertensive.

That said, she does have some circulatory issues, primarily involving her feet and legs. Some doctors call this "peripheral artery disease" and give her statins. Some call it "congestive heart failure" and give her blood pressure meds. Some give her both, no matter what they call it, but generally speaking, if she goes from one doctor to another, and I explain that the previous doctor gave her both losartan and a diuretic to increase her circulation because her feet swell, the doctor just goes along with it.

It got to the point that she would get dizzy. It got to the point that a previous clinic tried to add a calcium channel blocker into her ARB-and-water-pill blend. It got to the point that I had to ask one doctor if he'd even looked at her blood pressure results. (He hadn't.)

So, one of the first things I explained at the new clinic is why Mom had been given all of this blood pressure medicine, and that I'd taken her off of them. The nurse had just checked Mom's blood pressure when I explained this, and she was shocked that Mom had been on the meds, in the first place.

Don't take this next bit the wrong way. I'm a fan of losartan. Genuine fan. I've been hypertensive since I was 10 years old, and given a choice of medications (when I'm actually willing to take one), losartan would be tops on my list. As side effects go, ARBs (angiotensin II receptor blockers) seem both safer and less annoying than ACE inhibitors, diuretics, or the various drugs that work via controlling the heart. And losartan is the one I'm most comfortable/familiar with. As med-free as I prefer to be, if my blood pressure shot up, right now (and I'm labile like that), high enough to make me symptomatic in a scary sort of way (it's happened), I'd go beg someone for losartan potassium.

All of that said, Mom didn't need to be on an ARB. And this morning, via the wonder that is the Internet, I'm reading that losartan can cause anemia by suppressing bone marrow. Long-term losartan is gone from Mom's system. Long-term low-level anemia's gone, too. Correlation may not equal causation, but, over all this time, someone could have at least mentioned the damned correlation.

In closing: Health care should be transparent. If you aren't happy with your health care provider, if he or she doesn't listen to you and explain things to you, or -- and I can't believe I even have to write this part -- if they aren't really paying attention to what they're doing (which is a recipe for disaster regarding patients who are cognitively compromised), do your best to get the hell out and find another provider. Providers who spend time on their patients, who listen and communicate effectively, still exist. Rewarding those providers with your business is the best way to ensure that they continue to do so.

And rewarding yourself with care that you don't have to second guess is the best way to ensure your own well-being.

Hey! Are You Denying My Birthright?

"When did me and you start running around together?"

"Mom, you're my mother."

"Oh, hell. That's right."

It's that kind of day.

Futurity.org: Alzheimer's marker rises, falls with sleep

A friend and I had a discussion, yesterday, which started off about how Mom's dementia recently improved, then unimproved, and about how I couldn't figure out why. Then the conversation became a bit more philosophical. My friend says it's random. I can't accept that, in terms of biological processes. Cannot. I can accept that medical science doesn't know the cause for every effect in the human body, but I can't accept that the cause doesn't exist.

And, friend, if you're reading this, I'm right, too. Because biology and physiology are all about cause and effect.

And this new article from Futurity.org may help to shine a little more light on the "cause" end of that truthy tandem. The article (and the study the article is written about) suggests that some of the "randomness" may have to do with sleep patterns, and the ability of the body to clear amyloid beta from the brain during sleep:

“In healthy people, levels of amyloid beta drop to their lowest point about six hours after sleep, and return to their highest point six hours after maximum wakefulness,” says Randall Bateman, associate professor of neurology at Washington University in St. Louis.

Six hours? So, if Mom gets up at 8AM, that would put her highest level of amyloid beta at right around 2PM, also known as Spoiling for a Fight Hour in her post-diagnosis, but pre-MCT oil days? Correlation may not equal causation, but correlation between behavior and a related biological process? That's at least worth considering.

But then there's this:

In the new study, published online in Archives of Neurology, scientists report that the normal highs and lows of amyloid beta levels in the fluid that surrounds the brain and spinal cord begin to flatten in older adults when sleep periods are often shorter and more prone to disruption.

While Mom's sleep may be interrupted, she still sleeps a lot. 12 or 13 hours? Yep. That's doable. Unlike the expected pattern, Mom actually sleeps more, now, than she did when she was younger. I can't say for certain whether or not she gets six uninterrupted hours of sleep -- hello, aging bladder -- per night, and I don't know if those six hours have to be uninterrupted in order to reach a healthy level of amyloid beta clearance, either. But from a completely unqualified, total n00b persepctive, I'm wondering if the actual mechanism for clearing amyloid beta is diminished in some capacity, beyond disrupted sleep patterns, in people with dementia.

Wouldn't it have to be, in order for demenita to develop, anyway? At least if we're accepting for the moment that amyloid beta is the cause?

Pushing my doubts and questions aside for the moment, I still won't be rushing out to get Mom a script for Ambien any time soon. But I may start offering her some warm milk spiked with chamomile just before bedtime every night.

Another Klout Perk Perks Me Up!

Last time, it was a free Stephen King short story in e-book format. Tonight, I got a $25 discount code to use at ecomom.

As it happens, ecomom is currently offering free shipping on all US orders, so this was a huge "Hello, free stuff!" moment, for me. It also turned out to be a free-stuff-I-can-use moment.

First, I ordered a bar of rosemary and lavendar shampoo for Mom. Credible or not, if someone says that rosemary shampoo can help with dementia, I'm damned sure going ot try it. And guess what! Someone said just that. I wanted to order more than one, but, apparently, these things sell out quickly. One was all I could get.

I also ordered two large and one small stainless food storage containers. Mom rarely cleans her plate, so I need containers for the leftovers. Preferably easy-to-clean containers with no leechy chemical stuff in them, because she's got enough going on, already, kthanx. These seem to fit the bill. (Plus, I like them. Just plain old like them. I like durable things.)

I had a tiny bit of that $25 dollars left, and nothing else that I needed, so I ordered one heart-shaped lavender soap because some portion of the proceeds goes to an emergency fund for women with cancer.

And I am excited for all of these things. Thanks to Klout, I gained a bit of hope to top off an emotionally-exhausting day. And, if that rosemary shampoo seems to benefit Mom, at all (beyond, you know, cleaning her hair), ecomom will have gained an actual paying customer!

It's been a very hard day.

After a couple of weeks of consistently recognizing me, and knowing what my relationship is to her, Mom spent most of today getting me confused with my Aunt Bessie, hanging up dirty clothes, throwing my clean sheets in the floor, and just being mixed up a lot.

I can't find a good, solid reason for the sudden change. She's still taking the Aricept, she has healthy food, she has nicotine, she has caffeine. The only two things that I can come up with are a possible rise in carb intake and me not dosing her as heavily with the MCT oil.

One positive: She went to bed sometime after 10, tonight, but came back into the kitchen around 11:30. She said that she couldn't sleep, and that she was hungry; but she seemed a bit more clear-headed than she was before she initially went to bed, even if she did still mix up memories of me with memories of my aunt.

Beware My Fiery Green Thing!

I finally gave in. I stopped buying Mom (and myself) cigarettes. I stopped buying her disposable electronic cigarettes, too, since -- even when she didn't try to set them on fire -- they would only last her three days, tops. I gave in and bought her a more durable electronic cigarette.

The cost for a starter kit (which includes the working bit, a recharger, and two nictotine cartridges) was more than a carton of off-brand smokes, and more than twice that of a disposable e-cigarette. And it felt like I was spending a fortune when I bought it. Why? Because, on some level, my brain perceived it as spending $27 for one damned cigarette. Of course, that's the wrong way to look at it. That one damned cigarette has a life expectancy of a year or two, and a pack of four replacement cartridges will cost about as much as three packs of cheap regular cigarettes, but last about four to eight times as long.

So, in the long run -- in addition to making it easier for her to breathe, and easier for me to not worry about the trailer going up in flames -- that initial investment will save us quite a bit of money.

As an added bonus, I'm facinated by this particular e-cigarette because, instead of glowing orange or red to imitate fire, it glows green. Awesome green. Just puffing on it while I watch is like dangling something shiny in front of a magpie.

I'm currently forcing everyone who stops by to behold the glorious green flame of this e-cigarette. And, since not enough people actually stop by -- and because this is important, damnit -- I'm showing you, too!

For Tao's sake, just tell me how cool the damned thing is, so I can go back to taking pictures of food and bugs and vain self-portraits where I'm not just a backdrop for that gorgeous green light!

"I wish I had some peanut butter and jelly."

What NOT to say every time you sit down to eat, if you want the person who cooks for you every day to keep cooking for you.

Seriously, I'm considering going on strike.

The Aricept Must Be Helping

I say that not because I've noticed specific positive changes (and frankly, Aricept isn't supposed to actually help; it's just supposed to help slow the dementia's progression), but I quite suddenly have more time to work. Sure, I've been able to knock off blog posts through this entire experience, but blog posts are easy.

Drawing takes a bit more focus. And yesterday, I spent hours focused on just that.

For me, posting products at Zazzle takes even more focus than drawing (think repetitive tasks of the sort that eventually make your brain too numb for stuff like making design decisions and writing search-friendly copy). And yet, that's how I've spent most of today.

I think Mom's generally recognized me for a couple of weeks, now, too; even if she still calls me "him" when talking to the dog, and thinks that my clothes belong to my dad. That's piddly shit compared to your own mother thinking that you're some stranger paid to come in and help around the house.

In any case, it's been good to be a bit more productive than usual, and great that she seemed to understand that the work was something I actually needed to do. If the Aricept is truly responsible for that, I may even consider embracing modern medicine!