Monday, October 31, 2011

A Moment of Clarity

They're fewer and farther between these days, those moments of clarity my dad has. His progress has been steadily downhill. He stopped walking, stopped standing, nearly stopped eating. Speech is slurred even when he is trying to communicate, so only an occasional word gets through most of the time.

We cope by changing his routines. His bed now sits in the living room, where the futon used to be. Since it takes two moderately normal people or one strong one to transfer him from bed to chair to bed, this makes it easier. He's out where we can see and hear him. Since he doesn't stand up, we no longer put on his pants, but leave his legs covered in a very soft blanket while in his chair. Mostly he fusses with it, taking it off his legs until they get cold, but not complaining about the cold. We watch for it anyway.

His sitting up muscles are pretty shaky, so there's a whole routine associated with getting him to sit in his bed so we can give him water or transfer him to the chair. First, you have to get him to bend his knees. They're stiff as two-by-fours these days, and bending is accompanied by groans. We try to soothe him and apologize for any pain we're causing. Once bent, the knees and feet are dragged over the side of the bed. More groans, making faces. Then we grab his hand and slowly pull him up to a sit. Or something close to one anyway. Balance is not a current skill, so one arm around the shoulders tilts him erect, and we place his hands on the side railing and the mattress side, where he can grip and hold his position on his good days. Even then he's a bit of a moving target.

There's very poor hand-eye coordination, even allowing for his blindness, so on the days when he recognizes the bottle of water and remembers how to bring it up for a drink, he often misses on the first try. When he does make it, he drools some on his lap, and often chokes on what he swallows. He's mostly being hand-fed now, rather than watching him tilt his plate so most of the food winds up in his lap or chair for the dogs to help clean up, or tilt the spoon/fork so ditto. Breakfast is his best meal. Often he'll finish his bowl of oatmeal with fruit. Lunch and supper can be a few bites or a complete refusal. We don't force it. Sometimes he'll eat a cookie instead. Lately maybe not even that. He might not stay awake long enough to finish it. Or for that matter, not long enough for his daily phone call from Steve.

We've discontinued his vitamins and most of his meds unless they keep him comfortable. The nebulizer is more of a battle than ever, and mostly we hold it. On his good days he keeps pulling it out to look at it, or possibly to make sure we're paying attention to what he's doing. Even if I'm pouring coffee, I can hear the difference in sound from the next room when he takes it out of his mouth. Lately we hold it just outside his open mouth and trust his breathing will suck enough of the medication in to do some good. He's been known to knock our hand aside, whether holding nebulizer, pills, or coffee. He treated himself to a fairly warm lapful the other day.

With all that, this morning was a complete surprise. I'd just gotten him to the sit-up-and-balance phase of his morning routine, when he asked, "What's wrong?"

"What do you mean?"

"I find it hard to wake up, you come and go, Paul comes and goes. Am I dying?"

We've avoided that word in his presence lately. But this time he brought it up. He deserved whatever he could grasp of the truth. I sat next to him on the bed and put my arm around his shoulder. Partly it was to help him balance, partly it's because I've learned that touch can keep him focused for a bit. It worked years ago with kids, a light hand on their hand or arm while you talk to them, so I'm doing it with him too.

"Yes. You've been working on dying for seven-eight months now. At the moment you're just further down that road. You might last a few more days, or several more weeks. But," - answering the question he hasn't asked but I figure he likely would if he could frame it - "we're going to keep you here at home with us for however long you have. You won't be going to a hospital, or to a nursing home. You'll be with family." It seemed to satisfy him.

Or perhaps by then he'd forgotten the question.

Halloween Trick

The last runs of the day were pharmacy runs, taking meds from pharmacy to patient, either in home or care facility settings. The one I carried marked ASAP went to John Doe (not his real name of course) in an assisted living center. I did my usual by approaching the front desk and asking who I needed to see to sign for meds for John Doe.

Normally I'll be directed down that hall on such a floor to a particular nursing station. Only nurses are allowed to sign for the meds, since many of them are scheduled drugs. I wasn't expecting the reaction I got tonight.

First she gestured a co-worker over and informed him I was delivering meds to John Doe. Both then looked at me. The second co-worker informed me that he had been a patient there, but he was gone. "Gone", it turns out, is the euphemism for "dead." He'd been "gone" for a long time.

I asked him to clarify "long time". I'm thinking he died early in the month, now it's end of month, and somebody just hasn't caught up yet. No so. Not exactly. Long time meant years. John Doe died there years ago.

This so entertained them that they called up to 2nd floor and asked for his old regular nurse. "Hey, we got somebody here with medications for John Doe. They're marked "ASAP". .... OK, I'll send her up." She then started giving me directions to how to get to second floor. I guess the nurse up there wanted to tell me that John Doe had died years ago. I'd gotten the message. I declined the honor of hearing the message yet again from someone who actually knew John Doe. I believed it the first time. I even verified there wasn't a new admit with the same name. Nope.

Well, I still had deliveries to make, and now one of them was going to have to go back to the shipping pharmacy, and they closed at 7:00. I still had drops to make. Not a lot of time. While driving to my next stop, I contacted dispatch, told them the story, and let them contact the pharmacy to try to figure out why a ghost might needs his meds ASAP. (I think it's just a little late.)

Or more likely, why a second John Doe comes up on their computer with the first John Doe's old address. And who's not getting his meds tonight even though they're urgent.


One of my favorite local radio stations was sponsoring a contest tonight, with a chance to win your admission paid to a workshop just for answering the question about what kind of Halloween candy you were giving out tonight. The workshop? Learning how to use social media like Twitter and Facebook. How to enter? Go to their Facebook site....

Sunday, October 23, 2011


Steve has kept Fred here since his knee surgery. Fred gets outside into a fenced yard for exercise and doggie duties without anybody needing to get a leash and walk with him. With the exception of one weekend visit, when I put Fred in the car and drove out to Dassel, they've been apart. That ended Friday afternoon, at least for a bit.

Steve picked up Maria, his daughter, and came up here to spend the night so, among other things, both could attend/work the auction a couple towns down the road. This way they wouldn't have to get up super early Saturday morning and drive 100-plus miles before starting. Steve ran errands Friday on the way. His truck back was loaded with a few items he was moving here, not the least of which was his supply of dog food, since Fred eats about twice what Koda does. It was Steve's turn to supply some chow. Heading home the truck back was loaded with packing materials - bubble wrap, foam, boxes. Moving day has been set now for November 19th.

The dogs were in the back yard when the two arrived. After Steve was sitting in "my" recliner next to the back door, Paul let them in. Koda trotted right in. Fred waddled in until he was even with the middle of the side of the chair, suddenly realized his master and god was present, and jumped straight up over the arm of the recliner straight into Steve's lap! All 53 short-legged pounds of him, like he was a five-pound cat and not a basset!

Of course he didn't land quite like one. Steve claims he's just fine, however. Love heals a lot.

Wednesday, October 19, 2011

B & O? No!

B & O: it's not a railroad in a board game.

Well, it is that too, just not in this blog. But there's a back story first.

Last Saturday Paul drove his grandfather to the ER. We thought his catheter was plugged again. He wasn't passing anything, his bladder was backing up, and his discomfort level was approaching extreme pain. Since it was Saturday, we didn't call Randy to come out, but loaded him up in the car. We were hoping for some kind of information that would tell us there was more than just a short-term fix. These had been coming more and more frequently, and this was the third in a week. The usual fix was a back-flush to rid the catheter of whatever was plugging it, then letting it drain. It works fine, just isn't permanent. Not even long term, lately. And it needs skilled medical help. But hey, it was Saturday. Randy has a life too.

While they were gone, I did call her, just to fill her in on what was going on. We brainstormed about more long-term fixes, like increasing his catheter size from 14 to 16, thinking maybe that wouldn't plug so easily. She was willing to chat for a while, until her grandson started waking up. Then he needed her full attention. I promised to keep her informed, both as Daddy's healthcare team supervisor and as a friend.

When they left the hospital, Paul called me. Was there a close pharmacy that we had used that would have Daddy's insurance information? Because the hospital is 8 miles east of us, and his regular pharmacy is 17 miles west. Since we had stuck strictly with Target for him, he brought Daddy back home and drove off again. He had a prescription for B & O.

By now Daddy was feeling comfortable again. When he was in so much pain earlier, I'd given him an extra dose of what are usually his bedtime pills: hydromorphone and lorazepam. One kills pain, the other relaxes him. They had done the job - incidentally - of treating his problem, had we but known it. He wasn't having blockages, but bladder spasms. The medications relaxed the smooth muscle of the bladder enough for him to empty it, mostly during transport. An ultrasound in the ER showed an empty bladder. The B & O was prescribed in suppository form for the next times it happened.

So what's B & O? Belladonna and opium! Yikes! Not only does it sound dangerous, there quickly developed other issues with the prescription. First, Medicare won't cover it. They think it's a quality-of-life versus a medical necessity drug. More voluntary than necessary is how I heard it. However, if your bladder is backing up to the point you're in extreme pain and risking a rupture, it's not a necessity? The full price of the 15 pills that were prescribed is a mere $300. It could be covered if absolutely necessary, but....

As a suppository, it's just more difficult to administer, starting with getting him standing up to relocate to a place - like bed - where he can lie full out so we can get to the proper area. Mouth is so much easier.

It's so unusual a drug that Target couldn't get ahold of any until Monday. (Later they called back and pushed that date back to Friday.) Since he'd been having increasingly frequent spasming episodes, Friday might be too long a wait.

The prescribing doctor wrote the prescription out with out specifying the strength of the dosage. It is available in two. And since it's a Schedule II narcotic, every single "i" must be dotted and "t" crossed. So if we were determined to get this particular prescription filled, we'd have to get another, properly filled out written prescription and physically bring it in. We're used to hard copy prescriptions for his Schedule I drugs. It just meant that we'd have to contact his regular doctor, get him to agree this was necessary, have him write out what he thought was appropriate, and have me pick it up. During his office hours. Regardless of where work thought they wanted to send me at that time. With his regular drugs, we call in the refills with a week of dosages left so there's time to play with.

All of that might have been worth the effort except for one thing. The combination of opium and belladonna might very well depress his breathing, something he can't spare these days. If we were trying to hurry him out the door and underground, it might be just the trick. However....

Surely there were newer, better, safer drugs on the market these days to help with bladder spasms.

I told the pharmacist to tear up the prescription for B & O. I'd need to call his doctor on Monday anyway, now that we knew what we were dealing with, and ask for some kind of more realistic drug for his conditions. Worst case, we could retreat him with the same bedtime meds we'd used earlier. We wound up with something called oxybutynin, regularly prescribed for bladder spasms, though usually the kind that cause incontinence. 3 pills a day with meals. $3. A very slight risk of sleepiness so he shouldn't operate heavy machinery.

As if!

On Tuesday a doctor from the ER called us to let us know he had a UTI. Technically, 2 UTIs. The cipro, his latest antibiotic he took for respiratory issues, wouldn't touch either of these, but he prescribed something that would work on both the pesky bugs infecting his bladder this time. So Tuesday night I went back to Target pharmacy yet one more time to pick this one up. Another $3. 3 pills a day with meals.

And the little coupon they gave us with the register receipt this purchase gives us a $15 Target gift card with our next new prescription we bring to them. I got a new one at the beginning of this month. Daddy got 2 new ones this week. And now they give us the coupon?

Friday, October 14, 2011

Squirrelly Day

I suddenly realized it had taken me until about 3 PM to remember I'd killed that squirrel. Normally it's something that sticks with me for a while. I did remember it clearly: the acorn in its mouth, its running out in front of my car, my knowing it was timing it just wrong for it to survive the trip, the thump-thump as I rolled over it, the tail twitching as it lay behind me on the road. But that was the kind of day it had been so far.

At the time I was responding to Jessica's worried phone call. Fred had gotten caught under my dad's lift chair as he was putting it down after returning from the bathroom. Jessica was still in the bathroom and hadn't seen him there, and of course my dad can't. She reported that he made quite a cry of pain, and after being freed, limped and whined with each step. She clearly felt guilty about it, even though I reassured her that he'd just missed being caught under Steve's lift chair a couple months earlier and this really had nothing to do with her. We could hope he learned it was not a good place for a nap. Since her call caught me just as I was leaving the hospital from my allergy shots, I called work and informed them I would be even later, and why, called the vet for an emergency drop-off, and was heading home to pick him up.

It's not like Jessica could leave, even if she knew how to find my vet, across the state line in St. Croix Falls. She had her hands plenty full with my dad that morning, and they were to get even fuller. By the time I got home, Fred had perked up, quit limping, and stopped whining. I wasn't taking any chances. Not only is he not "my" dog, but Steve's, but his early history includes a broken pelvis and leg. I wanted to be sure he wasn't just faking "fine".

I actually lifted him in and out of my hatch for the drive over. Turns out he now weighs a hefty 53 lbs. You have to know that while he thoroughly sniffed the bushes outside the clinic door, he never raised his leg, an indication, I suspected, of some residual damage from the chair. Of course the second he stepped off the scale, he peed all over the floor!

Good thing they're used to that. Of course, they don't tell you if that means they add $5 to the bill.

They took him to keep for the day, at least, for observation, examination, and likely X-rays.

I logged in to work and headed for the cities. I'd have to be back to pick him up before they closed at 5:30. (Make a mental note: tell dispatch you need to be there by 5:00 or you'll never make it.) That's when I got the next phone call from Jessica.

Now my dad had felt fine when I left. He'd drunk a full cup of coffee, something becoming more rare as he tends to forget it's even there on his table unless he's reminded, and occasionally even then. But it was processing through - to a point. For the third time in under two weeks, his catheter got blocked and the bladder was filling uncomfortably. Very uncomfortably. I could hear him clearly in the background of the call. Jessica let me know that the part I had missed was him swearing at her due to thinking she was a nurse and was just standing by in his hospital room refusing to treat him.

Yeah, I get that.

Jess knows to call Randy when these clogs happen, and she comes out with supplies to back-flush the line, usually clearing the clog. Plan B involves replacing the catheter. Plan C involves the ER.

Randy wasn't answering. It turns out she was taking a day off. So Jess's plan B was to call the county and get the other nurse, Nancy. (Her plan C is the same as above, using 9-1-1 and the paramedics for transport. If Paul is in charge, he can transport his grandfather himself.)

Nancy finally arrived, tended to his needs, and then proceeded to berate everybody for what she perceived as his poor standard of care. The most obvious indication of that is what she diagnosed as a thrush infection (translation: rash) through his entire groin area. Yeah, we know about that. It's been an issue for weeks, about since he started his heavy-duty antibiotics for his latest respiratory problems. There was a ten-day course of treatment, and then a repeat. The thrush is a side effect. We've been working together to try napping with bare behind, soothing creams, Nystatin powder, you-name-it. Nancy called his doctor and got an order for Nystatin cream, to be applied twice a day.

All this process and keeping me informed took about three phone calls scattered through the morning, mainly while driving. Of course. Just because I have a busy workload doesn't mean I can't have a busy home life at the same time, long distance.

I then called Paul to pick it up on his way home from work. I was going to have to be home early - we'd known that but for other reasons and this day was turning out that it was even earlier than we thought - and we'd planned that it was a good night for him to run his errands and shopping after work while I watch Daddy.

Another call came from the vet. Fred was examined, and seemed fine enough that they decided he didn't need X-rays. I could pick him up today, and they were sending home a chewable painkiller just in case he was masking symptoms, as animals are wont to do. Two day's worth. And by the way, they trimmed his toenails. As a courtesy. They were too long and one was broken. Yeah, it was probably the one that dug a furrow across my wrist tattoo a couple days earlier. Even the scab is concave. Good dog. Really good job. That tattoo has been losing detail lately anyway.

Getting Steve the ongoing Fred updates took a few calls too. First problem was that he was sleeping and not answering his phone for a couple hours. When it's important, I tend to let it ring a few cycles to determine that he's not just away from it for a few minutes. Finally I left a message to call me, I had bad news. Of course, he called without checking messages first, so that was fun. Eventually, about six calls later, he was brought up to speed that Fred was OK.

So it was sometime after three that I relaxed enough to think about other things than whichever crisis was happening or details I had to organize, and finally remember that squirrel. And by then, I pretty much didn't care.


I'm not quite sure why I felt so jubilant leaving the doctor's office Wednesday. It was the follow-up appointment with her after, well, everything we'd talked about at my first appointment since getting insurance in April. We went over the hysterectomy, the allergy shots, my knees, the diabetes progress. The labs were back, I'm taking a new med, and there was lots to discuss.

We started with the fact she's leaving family practice to go into geriantology (sp?). Hey, maybe someday I'll be old enough to get her back again. Anyway, she discussed her coworkers until I was comfortable making a preliminary choice for her replacement as my primary physician.

We discussed labs and how often I need to repeat the tests, assuming the numbers are within normal ranges. I'm thinking I'm likely to lose my insurance again next year, due to the state budget changes, so I'm planning ahead on what to do before year's end and how to most economically schedule upcoming care. There will be labs again before year's end plus an appointment with my new doc. Allergy shots will continue, so I'm cramming in what I can on the fastest schedule possible for this year. Surgery is done, no follow-ups needed there. The knees will be ignored until Medicare kicks in. I got my flu shot and, after checking to make sure it's covered by the insurance, a shingles shot. (Not only did Daddy have to suffer from it, but Mom's sister got it as well, so I'm prone to it on both sides of the family.) Not having to face that myself was part of the relief I felt after that visit.

Remember I said there would be questions on the new medication? I was mostly referring in that comment to needing to inform my doc I was diabetic before taking a medication ordered because I am diabetic. I asked, she answered, and somehow after a lengthy explanation, I've decided I know nothing more than I did before. Perhaps just poor choice of wording on the label. Anyway, it's not actually a precautionary note.

What was a precautionary note was the bit about muscle aches. It happens in about 1 in 10,000 people. She said I'd be able to tell for sure if that's what was going on: if you take the kind of muscle aches you get from influenza, add getting hit by a truck to it for the intensity level. What it means is that your kidneys are failing, a protein is not getting metabolized, and you should immediately stop taking the statin drug, and have somebody take you to the hospital.

You won't be able to drive yourself.

One possible way to prevent it happening is to take something called Co Q 10. Co for co-enzyme. It helps metabolize that protein. Available OTC in the vitamin section. Oh, and for those pains in the feet? Not likely - though remotely possible - related to the diabetes. More likely a neuropathy, like Mom had. Take magnesium. Also available OTC, same place. So now there are two more pills lined up for their morning dispensing to swallow with that morning cuppa.

Speaking of the labs, the A1C is down to 5.6. Normal! For at least the last three months, the diet is working to keep the blood sugar levels down. Obviously I test the drops of blood to get readings at particular points in time, but this gives an overall. Overall it's good. Normal. Normal is good. Not an excuse to let up, however, no matter how tempting the box of Goldfish is that Paul left sitting out for the last few days. No, better to go buy my own box and take measured amounts with me to work for snacks, instead of the Cheerios I've been taking ever since last April. Yummy, but losing their edge. Switch to Goldfish for a bit.

Not exactly a lab value, but my blood pressure reading was 112/70. Last week at the allergist it was 113/69. That's going well.

Of course, likely that most important reason for the great feeling as I left the doctor's office was the first piece of information gathered. No, not the fact that I've lost 2" of height somewhere recently. That first thing they do, making you step on the scale. I've finally broken the 40 lb. barrier! Uh, that's as in 40 lbs lost. Just in case you haven't been paying attention. In fact, it's 41 or 42, depending on exactly where in the hundredths of a pound it registered at the very first time. I wasn't paying attention further than the first three digits back then. So not only did I break that mystical barrier, the one that's been resisting me for a couple months, but I did it after adding ice cream back into the diet.

Yeee Hahhhh! I can keep eating ice cream!!!!!! In fact, it's time for some right now...

Saturday, October 8, 2011

Reading the Label

Tidbit: Because I am diabetic, my doctor is now taking my slightly elevated cholesterol levels seriously.

Got that? Good. Keep it in mind. We'll come back to that later.

It is time to return to the primary care physician for the follow-up visit. I haven't been in to see her since all this started - after I finally got health insurance again - on April 11. We're following up on what has happened on all fronts: diabetes management, knees, allergies, surgery.

Before one of those visits, one goes in to the lab and gets a series of blood tests run. The results are back. Good news: my A1C dropped to 5.6, nicely within the 4.3-6 range that normal folks have. That means that over the long range - 3 months - I've been managing my blood sugar levels well. Bad news: the "bad" cholesterol in not below 100. The doctor reading the results (mine was on vacation) sent my pharmacy a prescription for Simvastatin. Generic for Zocor. The operative part of that name is "-statin". It's a cholesterol lowering drug. I picked it up and started taking it a couple days ago.

Having never taken anything like this before, and not being familiar with it through my dad's long list of meds, I decided to spend some time reading the label. I was particularly interested in side effects. This drug's list is mighty impressive.

Now, I do know not to get freaked out over every possible effect this medication might have. It is protocol for test subjects to have to report every teensy little thing. Got a cold? Report your sniffles in case they might be relevant. Sprain your ankle? Report the joint pain. Food poisoning? Report nausea and the runs. If twenty-five people in the study get the same cold and sprain their ankles, there might be something there (like uneven flooring in the testing facility?).

Due to reading labels, I expected that my Lisinopril, when I started it several years ago, might cause a cough. Well, I did get a cough, all right, but when we stopped the Lisinopril for a month, nothing happened to the cough. It turned out that its primary cause was allergies, not that I knew it then - me? allergies? ridiculous! - and since the substituted medication did wildly erratic things to my blood pressure, few of them good, back on the Lisinopril I went with no side effects. I'm still taking it, and my latest BP reading was 113/69. But the whole experience drove home the importance of reading labels.

This new med can cause constipation. OK, just keep the vitamin C at the elevated level of 1000 mg. instead of the previous 500 mg. I used pre-surgery. That fibroid seemed to hurry all digestive processes along for want of space, and now is the first time I can remember since childhood where that might be an issue. In fact, the opposite was enough of an issue for so many years that constipation hardly seems an inconvenience. If it is, work on increasing fiber and raise C levels some more.

It can cause nausea. Hmmm, maybe that's why you take it at bedtime? I suppose most folks have empty stomachs then, so no big loss. What a way to ruin sleep, though. But hey, more weight loss, right? And in summary, you might have the effect of not being able to keep food down, and what you do keep down you retain forever!

What else? Muscle pains. So who doesn't get muscle pains? How do you tell if the latest pain is medication or life induced?

May cause liver damage. Scary. Sounds like another reason to come in for regular lab work. I'm already doing kidney function tests because the ibuprofin can damage those. But at least they don't double up, but pick alternate organs to ruin. And hey, stay off Tylenol, which doesn't do much for me anyway, so no problem.

Here's my favorite: Be sure to inform your doctor if you are diabetic. Uh, hello? That's the reason I'm taking this in the first place! (Remember, I said we'd come back to that.) So what's it going to do to me because I'm diabetic? What happens when the big precaution is part of the reason it's important to take this medication in the first place?

Good thing I go in to see the doctor this week. There will be questions!

Thursday, October 6, 2011

Remembering Steve Jobs

The world is poorer today. On the other hand, maybe we should just think about how much richer we are for having had his particular genius for as many years as we did. If your particular technology wasn't designed by him, it was designed by a wanna-be in imitation. He brought computers home for many of us, made them pretty and portable, connected them to music and phones, put them in our pockets, and sent us back out in to the world with them. That's some legacy.