The Cupcakes of Desperation

My Brother came home from the bar last night with a couple of treats: two homemade cupcakes, each topped with frosting and a half Twinkie decorated to look like minions from "Despicable Me." He gave me the single-eye-goggled one and kept the double-eyed one for himself.


A quick Google Image Search reveals that Minion Cupcakes
are a thing out there in the world. Who knew?

Apparently, someone's child had been diagnosed with cancer and this was one of the ways they are trying to raise the funds for her treatment.
I am quite confident that, if you were to ask anyone in that bar (this being southern Florida), they would all profess to be adamantly opposed to Obamacare, opposed to government mandated health insurance, opposed to "socialized medicine," and, in addition, are all oblivious not just to the irony but the pure obscenity of having to hold a bake sale to raise funds for life saving treatment for a child (or anyone else, for that matter). My Brother lost his own health insurance last year when his employer unilaterally decided to drop it. Still, he would rather die (and doesn't recognize the increased odds of that happening) than vote for a Democrat. Instead, they all buy cupcakes at $2 a piece and hope things work out because that's the way it is.

On a not entirely unrelated note, my niece (12 years old) is facing her third open heart surgery this fall. Although her parents do have health insurance, and most of the direct bills will be covered, the incidental expenses, ranging from food and parking during hospital stays in Boston to lost income during parental custodial time off and additional doctor bills, means they have had to set up a (slightly more organized) fundraiser for her.

It's wonderful to live in a first-world country in the Twenty-first Century. I'd like to try it some day.

Mom, A Life: Part Nine

Mom, A Life: Part Eight

The Final Years

Dad was in a serious car accident just as they were building the new house. That, and the fact their contractor absconded with several thousand dollars necessary for the finishing work, meant the move was delayed, drawn-out and a little traumatic. They stayed with first one son and then the other (both of whom were living in town at the time) and eventually the place was completed.

In late 1997 Dad was diagnosed with prostate cancer and underwent cryogenic surgery. During follow-up another tumor was discovered and he began chemotherapy. As Mom described it from the x-rays, "It looked like a loaf of French bread wrapped around the back of his stomach." At first he responded well and they could see the tumor shrinking almost daily but suddenly something the doctors called a "wildfire" took over. In less than a month, on March 22, 1998, Dad died.

Mom continued to teach ceramics at the Senior Center and occasionally took on jobs either when she wanted extra money or just because she was bored. (She did a short stint as a dispatcher for a rental car company out at the airport one time.) She gave up driving and my brother, who had sold his house and moved in after his girlfriend died, chauffeured her around. In 2000, my brother managed to pull off a surprise 80th birthday party at the country club that included her children, grandchildren, most of her nephews and nieces, surviving sister and brother-in-law and a host of friends.

The remaining dozen years passed quietly. Mom's back had been giving her problems for decades. What with slipped and disintegrating discs and severe scoliosis she became hunched over at the waist and barely four feet tall. (She was 5' 6" most of her adult life.) As her mobility decreased she stopped going anywhere except ceramics class and doctors' appointments. We had always planned for Mom to live to at least 100, both because she thought that was a nice round number and also in hope she'd passed on longevity genes to the rest of us, but in 2008 I received a letter from her hinting at imminent problems. I moved in with Mom and my brother to help him look after her. The letter turned out to be a touch melodramatic.

Mom talked about moving to an assisted living facility but, although we got brochures and made some visits, her heart wasn't really in it and she stayed home. Her mobility became worse and she was plagued by occasional incontinence and so stopped going to ceramics out of what might best be called anticipatory embarrassment. She most definitely did not want her friends to see her deteriorating.

Mom was diagnosed with moderate Alzheimer's in 2010. She never discussed the diagnosis and I often wondered if one of the effects of the disease was that the implications never really sank in with her. She was put on a drug that noticeably slowed its progress, and for the six months immediately after the diagnosis she showed real improvement both physically and mentally. We even made one last visit to the ceramics class at the Senior Center.

Eventually, though she spent her days mostly on the couch reading and watching TV, although she no longer enjoyed watching sports as she found she didn't understand the rules or the point of the games any more and had no patience for anything lasting longer than a half hour or so. She read continuously, both magazines and large print books from the library.


She still dressed herself (with an increasingly eccentric creativity), made her own bed and did her own laundry (or tried to. We took that last chore away from her after she washed some disposables and filled the dryer with cubic feet of fluff). She had a great appetite and ate everything we made for her enjoying the occasional glass of wine with dinner. Although she had more and more trouble finding the right word, she never lost verbal capability and always recognized people. Her biggest problem was insomnia which could keep her bouncing up and down all night long and exhaustedly napping all the following day.

In February 2012, I noticed a decline in Mom's cognitive abilities. Despite the doctor's warnings about the inevitability of Alzheimer's, Mom had been so stable for so long that it came as something of a shock. During an appointment in early March, her GP noted a spike in her blood pressure and asked if she had a living will and DNR order on file. He recommended we post it on the refrigerator. Mom's insomnia was worse and she was a little more agitated than usual over the following weekend and then, sometime over night or, more likely, early Monday morning, her heart just gave out.

Mom died at home, in her room, Monday March 12, 2012, fourteen years after Dad. She was three months shy of 92.


Post Script

This sketch of Mom's life turned out to be a lot longer than I'd originally planned, yet it is still far, far too short to do her any kind of justice. I haven't mentioned her sense of adventure and willingness to try anything at least once. She'd go out in the woods with us kids to explore the "cave" we found. She had us all grilling Japanese food on hibachis and eating with chopsticks back in the '60s. She taught tolerance (no excuses) and encouraged intellectual curiosity. She's why I was listening to Stravinsky and Berlioz at age eleven and owned the complete Yale edition Shakespeare at thirteen (best junior high school graduation present ever!) and why I can cook for myself well enough to entertain in several different styles. ("You're either going to get married or stay single. If single, you're not rich enough to eat out every night so you'll starve if you don't know how to cook. And if you get married I'm not going to have some other woman complain I gave her a helpless son.")

Thanks, Mom. I love you, too.

An Unexpected Turn

Well, that ended on a weird note.

I took Mom to her doctor's appointment this morning. This one is her GP. Of course, she was up and down all night long ("Is it time to go, yet?") but she managed to get up and dressed in time to have breakfast and still be early to the appointment.

Which was a good thing because it was the first visit of the year with this doc so his staff had to spend ten minutes making sure all Mom's records were updated.

The only anomaly was her blood pressure which was high. We don't know whether that's a permanent change (it was low last time) or just a temporary spike due to the stress of two appointments in two days and the second one in the morning and being up half the night worrying about not getting up in time.

So the doctor takes a look at her BP readings and says, "Does she have a living will?" "Yes." "Does she have a DNR on file?" "Yes, I believe so." I know she has a Do Not Resuscitate order but whether or not it is on record with the appropriate people--all that was done long before I moved down here.

"You might want to tape it to the refrigerator, where they can see it," he says.

What just happened?

He gives me an open authorization for a blood and urinalysis work-up at the hospital and tells me to order it if I see a sudden deterioration in her cognitive functions. I mention having to give her step-by-step instructions on how to dress herself these past couple of days, but that, apparently, is not a serious enough decline.

It seems the doc is unable to just come out and say that the high blood pressure, if it continues, may cause her to have a fatal stroke. As warnings go, that was pretty subtle. Would someone else, who isn't the child of a nurse, get the point?

I've informed my brother. I'll look for a copy of the DNR later.

Layers

Just got through taking Mom to her dermatologist. We had a good session. Overall, the doctor was happy. He took scrapings of pre-cancerous bits from her face and head and something from her ankle to biopsy and scheduled another visit for six months from now.

The best result from my point of view is that I was finally able to convince Mom to stop wearing the blue fuzzy pullover she's had on for the past week. I laid out a complete set of clean clothes for her and gave her specific instructions on how to put them on (she's been known to wear her underwear on the outside occasionally) and she still managed to put on a pair of shorts before trying to get her pants on, too. I managed to catch her at that and then had to re-give step-by-step instructions for removing the two shirts she was wearing in order to put on the clean one I had set out. Fortunately, I had started her early so, even with the detours and restarts, we got to the appointment on time.

A couple of nights ago I tried to change her Exelon patch and couldn't manage to roll up her sleeve. (She gets a new patch daily on alternating shoulders.) Turns out she was wearing five shirts, all pullovers, at the same time. She claimed it was unintentional and didn't recall doing it. I don't know whether she put them on all at once or incrementally over the course of the day. I made her remove three of them before replacing the patch. She spent the next two hours folding and refolding the extra shirts, laying them out singly and in a pile, and rolling them all together as if to fit in a backpack before I convinced her to go to bed.

This appointment was at 1:00 in the afternoon. She has another tomorrow at 10:00 A.M. Getting there on time will be an interesting challenge.

Thinking of Alternative Therapies

Had to give Mom a sleeping pill last night after she kept popping out of her room every half hour. Three times in less than two hours. This was the fourth night in a row. I feel bad about it because the pill affects her memory (just what she needs) and leaves her exhausted and foggy the next day despite (or maybe because of) getting fourteen uninterrupted hours of sleep.

We have a doctor's appointment scheduled for next week. I'm thinking of asking him for a placebo and seeing if the psychological effect of just taking a pill will cause her to relax and sleep without all the side effects.

Otherwise, I hate the thought that the treatment for one issue is aggravating another.

Mom-Sequiturs: "Dammit, Jim, I'm a Doctor Not a Stripper!"

I took Mom to one of her eye doctors this morning.

As usual, on the trip in, Mom turned to me and asked, "Which doctor are we going to today?"

I had told her once already before leaving the house but I told her again.

"Ah, yes," she said, nodding. "But that's his work name not his real name."

Operation Pinocchio III: Mom's Excellent Adventure

So, I took Mom to the dermatologist today. The process began last evening.

"Remember, you're going to the doctor tomorrow."

"I am?"

"Yes. We're going back to have your stitches removed."

"I have stitches?"

"Yes. Four of them. In your nose."

"Really? Why?"

"Because last week the doctor removed a small tumor from your nose and stitched up the wound and now we have to go get them taken out. Why do you think I've been changing the bandage on your nose every day?"

"Well, I was wondering about that."

So, after a variation on this conversation this morning, and again in the car, we arrived at the doctor's office a few minutes early. After a short wait Mom was being taken back to the surgery room when we all heard an explosion outside and the power went out. It was heavily overcast and had rained earlier so the first assumption was lightning blowing out a transformer. A little later presumptive blame shifted to the construction site behind the building we were in.

Actually, only most of the power went out. Some of the lights remained on (including the ones in the room we needed) but all the computers and the air conditioning went out. As did the elevator. We were on the third floor.

The nurse (the same one who freaked out last week) removed (most) of the stitches and the doctor came in to check her work and remove the one she missed. Total time elapsed: five minutes. While she was working, the nurse assured us the doctor would help me get Mom onto her walker (which can double as a wheelchair in a pinch) and help manhandle her down stairs since the elevator was stuck with people trapped in it and nobody knew how long it would take to free them. The doctor assured me absolutely none of that would ever happen and we should just sit in the reception area until the elevator was repaired. Mom and I agreed that was the better option.

Meanwhile, the people trapped in the elevator had used the emergency phone to contact the fire department which arrived just about the time we made it out to the waiting room. Whereupon I had my brilliant idea for the day. I went downstairs and asked the firemen if they could help me get Mom out.

They could. They'd be happy to. They, in fact, had a "stair chair," a purpose-built contraption designed for this very eventuality. They just didn't have it with them in their truck. But the EMTs had one in their ambulance. Which the firemen were happy to call to the scene. They were a happy bunch of guys.

When the ambulance arrived, we all trooped back up the stairs (which are on the outside of the building accessible from a wraparound balcony) lugging the stair chair with them into the office where they strapped Mom in with a belt across her waist and crossed belts across her chest and the only thing keeping it from looking like an official straight jacket was the lack of arm restraints. They told her to keep her arms inside the chair and wheeled her out to the landing.

In addition to the wheels, a stair chair has a kind of thin, narrow tank tread device, long enough to cover at least two stair treads, that swings down from the back under the chair and acts as a slide so the chair doesn't bump its way down. It also acts, according to the firemen, as a kind of brake to keep the chair from descending too fast. With one fireman on the down side and one on the up side, two EMTs watching and me trailing behind with Mom's walker they eased her down four half-flights of stairs, around three landings and right out to my car.

Mom was delighted and thrilled and told my brother the whole story in detail when we got home. "Never rode in one of those, before!" she said. No matter how old you are, there's always the chance something new will happen every day.

Operation Pinocchio, Final Cut

So. The surgery was a success.

I told Mom last night about the appointment this morning and her first response was to act as if she'd known about it all along. But then she started to get anxious, asking who we were going to see, when and why. Because of the stress, the answers never sank in and she kept repeating the questions every five minutes or so. Finally, when she asked for the third time what was needed of her I replied, "Only this. Go to bed and get a good night's sleep." Which, surprisingly, she did.

I woke her at 7:45 and she had plenty of time to dress and have a small breakfast before we left. Three times in the car she asked where we were going and who we were going to see. When we turned into the drive to the doctor's office she said, "Why are we turning here?" On the entrance walkway she stopped and said, "Who are we going to see, now?"

Unfortunately, as she was being taken back into the surgical suite her nerves got the better of her and she had an accident. The nurse called me back and basically freaked out about not being able to deal with the situation and how I would have to take care of it. She kept going on and on while I explained I would need to go home to get a change of clothes for Mom. I left while she was still freaking. When I returned, the doctor had just finished the operation and a different nurse was applying a bandage to Mom's nose. The accident hadn't bothered either of them. Mom went and changed clothes.

The surgery itself only took fifteen minutes. We then had another twenty minute wait for the biopsy results. They came back clean and now we just have to return next week to have the stitches removed. (If I can get Mom to keep the bandages on. The wound was still bleeding a little as we drove home and she picked at it until the gauze came loose and I had to replace everything. Since then we've caught her trying to put hand lotion on her nose. It could be a long week.)

Operation Pinocchio

Mom goes to the doctor tomorrow for minor surgery. We went to her dermatologist a couple of weeks ago for her regular quarterly check-up and he froze off two spots (on her forehead and back of shoulder) and biopsied two more (nose and neck). The nose sample came back malignant. And, unfortunately, he didn't get all of the tumor in the initial biopsy. So tomorrow we go back to finish off the job.

I haven't yet told Mom about the appointment, for two reasons: One, she gets very anxious before doctor appointments, worries about missing them, worries about presenting herself, worries about things she can't control, can't sleep, gets up hours early, in general--worries. Two, it's at 9:00 in the morning. She isn't going to like that at all. The operation's going to take a couple of hours and it's going to be a lot easier to get in first thing and get it over with.

She's going to end up with a little divot in her nose. My brother already has one from a similar operation several years ago. Skin cancer is just one of the costs of living down here. The doctor originally offered a couple of alternatives to this surgery. One was radiation therapy but we figured if one operation was going to stress mom out 9+ radiation sessions would send her over the edge. The other was for her to see a plastic surgeon but, at 91 years and counting and never getting out of the house except for doctors' visits, we're not terribly concerned about the divot damaging her social life.

I'll tell her at dinner.

The Curative Properties of Barbecued Ribs

Monday being Labor Day, we had a "picnic" of sorts. We ate it inside, at the dining room table, but we had corn on the cob, barbecued ribs, beans, etc. The ribs took about five hours to cook and were falling-off-the-bone tender. Mom had a great time. She remarked on the food throughout the entire meal and it was fun to see a 91 year old woman wrist deep in barbecue sauce. We were done about 4:30.

Whereupon Mom went to bed.

Actually it was about 5 when she turned in, without announcing the decision to us. She simply went to her room and didn't come back out. For twelve hours.

Now 5 o'clock is about four or five hours earlier than usual and when she does go to bed at nine or ten she's usually up again an hour or two later saying "Good morning!" and toddling all over the house until we chase her back only to repeat the drill every hour until 3 a.m. She'll then wake up anywhere between 7 a.m. and noon. So twelve hours straight was something to remark upon.

Part of the reason, I think, is that we had a doctor's appointment Tuesday. Mom always gets a little nervous about missing appointments and being presentable and so forth and is frequently less random the day before. Tuesday morning she was up early, dressed to go out, bright, alert, sense of humor working. It was a fun day in spite of the thundering cloudbursts and the doctor freezing two patches (one on her forehead) and biopsying two others (on her nose and neck).

Tuesday's dinner was pasta with sweet sausage and onions in a marinara sauce. Tuesday night was the typical yoyoing between bed and the living room all night long.

Last night I served the leftovers from the picnic. In spite of falling asleep in the middle of dinner with a rib bone clenched in her fist, Mom enjoyed it immensely, and said so. When she couldn't stay awake on the couch and I suggested she retire for the night, we had an extended conversation regarding how to stay in bed and what she should do if she felt like getting up. She agreed to give it her best shot and, in spite of turning in at 8:30, didn't come out once until 3 a.m. (When we chased her back in again.) She was up early this morning, fixed her own breakfast, was sitting up straight and communicating in full sentences.

I reckon thar's somethin' in them ribs a'right.