***
1
August 25, 2001
2001 was altogether a very tough year for me, he wrote, as though the year was already over. But he marked out altogether. That was better, more direct. He marked out very, and then for me. The opening sentence in his "Memoirette" had become:
2001 was a tough year.
That's a lot better, he thought. Then, he went on:
First, it was just a little fainting spell.
That seemed okay too, so he launched in.
After the first of the year, like most recent years I went down south to visit my aging mother. This time, since both children had grown up and moved away, my wife A----- went with me that time.
For months, I'd been feeling what I now know were symptoms of my condition. I had noticed at work that I didn't feel right when walking back from lunch. When I had to climb up a flight of stairs, I felt worse. My vision was disturbed, for instance. Everything looked as though it was lit in a painfully bright light ("photo-sensitive," they call it). I wasn't exactly out of breath, but my legs were weak - once in a while actually shaking uncontrollably for a minute or two.
The odd thing was, Although I felt strange and bad, I didn't feel like I was going to fall or black out. And I could both think and talk normally. When my symptoms were worst, sometimes it happened that I would cross paths with a colleague, and we would chat just as though everything were normal... As I imagine they thought it was. I do remember one time when someone said, "Are you all right? You look a little pale." I just said I had to catch my breath after coming up the stairs too fast.
And, sure enough, after a few minutes I could go along as usual.
He took a break, then read what he had written. That's okay, he thought. But why was he bothering to do this, just because his daughter suggested he write it down? He decided he'd come back to it later.
2
August 26, 2001
So, while I was at home, my childhood home, A----- and I took Mother to church on Sunday. Maybe it was a little stuffy in the sanctuary, I don't know. But once when we all stood up to sing a hymn, I sat back down again, hard. I'd actually passed out for just a second. I got right back up.
Mother didn't seem to notice, but A----- certainly did. "What happened?" she said with some concern.
Back home the routine started up again normally. I had gone to a cardiologist a year earlier, just for a routine EKG. There was something I liked about the doctor. But I wasn't thinking of medical help after the sanctuary incident. I was getting older, of course, working hard and sometimes facing stressful work situations, some of which lasted for as long as a week...
I couldn't help noticing that it was often after a working lunch that I had my light-sensitive, short of breath, weak legged episode. It was easy to find plausible causes of my little symptoms.
3
He had written three or four paragraphs all at once. He read it over and didn't see anything to change and was ready to move on. All without a break too.
Next, it was one night when I got up to go the bathroom. It was in the dead of night, say around 2 or 3 a.m. Rather than turn on the light, in the middle of the night I always sat down on the toilet. Still do, in fact.
No. He marked out the last two sentences and added this one.
In the middle of the night, I always sit down on the toilet, he wrote instead.
When I had finished, flushed and all, I naturally stood up and started moving toward the door. Next thing I knew, A----- was trying to pick up my head, which was tangled in the shower curtain where I had fallen.
"You fainted!" she said. "Did you hurt yourself?"
I hadn't, as far as I could tell. But I sure had lost consciousness for a minute or two. It was more embarrassing than damaging, but still...
The next morning, A----- and I decided I should go back to the cardiologist. Or maybe, just by coincidence, I had a follow-up or check-up already scheduled, I can't remember. But anyway, we went in to see Dr. S----- a few days later.
He checked me out, listened not just to my heart but also to what we said, seeming to know instinctively that A----- was providing the most useful information. He set up a hospital test or two - an ultrasound of my heart, for instance - but didn't seem particularly concerned.
When A----- told him of the fainting in church, he said: "You know, we all do that!"
4
Aug 27, '01
All right, he thought. Where should he pick up the story now? He tried to recall, Were there some other warning signs? There must have been, but - he told himself - Get on with it!
We had a little break in the workload at the office in early April, so I took a couple of days off, taking in effect a four-day weekend. A----- and I had been looking for a chance of something like that so that - new for spring - we could fix up and rearrange some things in the house. I can't remember what all was involved. Seems like there was stripping and replacing wallpaper at an early point.
That's it. Keep going; it's just memory now. Vivid memories at that.
Then, on the Saturday of that weekend, two days before I was planning to go back into the office, we'd been talking about updating our downstairs t.v. We found an appropriate replacement on Friday afternoon and didn't have too much trouble swapping it out with the old one in the den. Years before, we'd put a new portable inside a neat-looking wood console we'd had since we were first married, so that was the one we were swapping out. The new one eventually did go into the narrow space, and we got it all hooked up to a new DVD/VCR player we had bought only a few months earlier.
So far, so good, he was thinking.
So far, so good.
The next step in the spring re-do was to put a t.v. upstairs too, where we'd never had one. The little old one we were taking out of the old console would be just right. We even had an old wheeled t.v. table we'd been keeping in the attic for eons.
Right after lunch, we couldn't help ourselves, we just had to get the portable upstairs onto the new-old table. We talked about it and decided that A----- would take the one side while climbing backwards up the stairs, which meant that I was moving straight ahead, carrying a little bit more of the weight. We were already not young anymore, you know?
5
So that, next thing you knew, there was A----- climbing steadily backwards up the stairs holding up her side, while I labored along unsteadily behind, going forward. I was especially concerned to avoid scratching either the banister on the left or the stairwell wall on the right.
Up we went, step by step, talking to each other to be sure the other one was under control and was plodding along at the same steady pace. And then, after a minute, there we were. A----- had positioned the t.v. stand with the casters a little beyond the top step of the stairs. We set the little RCA down, just as we'd planned. Done!
6
A couple of years ago, right after the children had moved out on their own, we'd made a creature-comfort kind of purchase - quite uncharacteristic of us - in the form of a recliner chair. It was just a couple of steps away.
After setting the little t.v. down, I spotted that chair and said cheerily to A----- words to the effect that I thought I would just sit down for a minute.
The next thing I knew A----- was pounding on my chest, peering up critically into my face, while holding the phone receiver to her ear. Fortunately, it had a long chord; we don't have a cell phone.
"Is that 911?" I asked sweetly.
She continued talking into the telephone, but she nodded it was indeed 911.
"Tell them I'm fine," I said. And then I blacked out again.
When I came to, Sheila was still holding the telephone. She told me she had to go downstairs to let the EMT folks in. I told her pleasantly to go right ahead.
The heavy steps of the men carrying their paraphernalia boomed up the stairs toward me, and then one of them asked heartily, "Well, how are we feeling?"
I said comfortably that I was feeling okay, no chest pain or anything, no headache, I could move everything. He took my blood pressure and listened to my heartbeat. "But I think I lost consciousness for a second or two."
A----- spoke up.
While they carried me down the stairs, I was hoping the stretcher didn't scratch the banister or the wall.
While folks were scurrying around me in the emergency room, as A----- was registering me at the desk outside, I was feeling kind of cozy and sleepy, but alert. I answered everyone's questions.
After A----- had arrived at my bedside, the staff cardiologist appeared, studied the chart and had a conversation with A-----, and pretty soon I was admitted and taken up to a semi-private room (no one else was there). I think a nurse hooked me up to a heart monitor so that an alarm would sound at her desk in the hall if my poor old thing stopped beating, but I was looking at the rest of Saturday and all day Sunday with nothing to do but lie there, because of course they couldn't run any tests until Monday.
7
(By this point, he couldn't have stopped if he'd wanted to.)
A whole battery of tests indeed ensued over the first two or three days of the next week, including a CAT scan of my head. A neurologist showed up shortly afterwards and said I had a normal brain and my little episode - that's what they called these little fainting spells - my episode could not have been caused neurologically.
Other tests showed I had no arterial sclerosis, no blockages, had had no heart attack... When Dr. S----- came by after having reviewed all these results, he said I had a condition sometimes called "Athlete's Heart" (a surprising, if flattering discovery), where the heart under exertion sometimes beats so strongly that just about all the blood in the whole heart chamber is pushed out and not enough time is left before the next too-strong beat for the chamber to fill up again. As a result, not enough blood reaches my brain, and... Well, I knew the rest.
Eating causes exertion by itself, for digestion, so other exertion like walking uphill, or climbing up stairs, or lugging a somewhat heavy object was exertion on the heart too, for muscular exercise.
The upshot was that I should go to another hospital where they would implant a pacemaker in my chest. This little machine could help keep my heart from beating so fast that the heart chamber wouldn't fill up before the next beat came along.
And I would arrive at the other place Friday afternoon, just in time to spend the weekend.
8
Aug 28, '01
A week or so later when A----- and I returned home from the other hospital 90 miles away, we discussed the experience we'd been through. Over there our expectation from Dr. S-----'s team that I would be having a pacemaker implanted was re-enforced by a handout given us by the surgeon's team explaining what a pacemaker was, what a pacemaker was designed to do, and how to take care of a pacemaker. (One thing I learned, for example, was that the magnetism in those doorways you have to go through at libraries and stores is too weak to cause any problem, while the airport ones are too strong.) I had all weekend to study the handout on pacemakers.
So it was a surprise when I was on the gurney going into the operating room and the man who would do the actual surgery, whom I had not met before, talked instead of implanting a defibrillator.
I said "Whoa, wait a minute. I was told to expect a pacemaker." The surgeon explained whythe defibrillator was required for a condition like mine. It did seem like a higher level of security, I thought, but was it more than necessary? (I later have wondered how necessary even the pacemaker is.)
I told them to page A---- in the lunchroom so that we could make the decision together. This new guy wasn't happy at all but went away to do so. In 20 minutes he came back and said my wife hadn't answered the page, so I would either have to go ahead or go back to the room and hope it wouldn't be too many days before a new opening in the operating room could be scheduled. I said to go ahead.
When we got home, then, we looked over the spot near my left shoulder where the darn thing had been implanted. It bulged out a lot and was a little crooked. That didn't seem right, but apparently it was working and I seemed to be healing normally.
The health insurance at my job paid for all this. That defibrillator - the little instrument itself - had cost $40,000.
9
After five days or so, I noticed that my left arm and hand were a little red. The day after that there was a little swelling too. A----- called Dr. S-----'s nurse, who set up an appointment for an ultrasound on my arm for the next day. That took only a few minutes. Looking back, I can realize now that there was a little more meaning than there usually is in the way the technician said that my doctor would be contacting me soon.
...Because the phone rang just as we walked in the door getting back from the test. Dr. S-----'s nurse (W----), said could I please come right in. It seemed routine, so A----- stayed home.
I checked in at the desk as usual at the office, but instead of being able to sit down comfortably and glance at a magazine or too, W---- came out and said right up close to my face that I needed to start taking a blood-thinner right away. She said she would call in the prescription to my drug store right then and I should go get it and take the first pill before leaving the store.
I had a blood clot near my left bicep, another little blow. With the thinner and all, though, the clot seemed to dissolve and disappear over the next few days. When I went in for a check-up the next week, Dr. S----- explained that he'd been planning to prescribe a blood thinner anyway because when someone's heart starts beating too hard, a little blood could pool up for a few seconds in the bottom on the heart chamber, so it was good to slow down any possible clotting process.
Anyway, that was the beginning of a new regime of various drugs that I will be taking from now on: one to help relax my heart and at the same time to keep my blood pressure down, the blood thinner, and another drug to help the heart beat regularly without having to engage the pacemaker part of the defibrillator.
My work day had to change a little too, since I was to start taking a brief little nap everyday after lunch... to avoid muscular exertion after eating. At least most of it makes sense, and after a month or so, I starting feeling pretty good. In fact, I've been feeling better than I had in years!
10
8/29/01
Then, he couldn't help but remember, there was the other surprise.
Then came the final surprise.
I still talked with my mother down south every weekend on the phone, but of course I hadn't shared anything with her about all this health upset. She was still very much herself, but her dementia had progressed enough a year and a half ago or so that I couldn't rely on her own reports of how she herself was doing. A year ago, the family had arranged for Mother to have care-givers looking after her in the daytime, but A----- and I realized that we would have to be going down a little more often to see how she was doing for ourselves.
She was delighted in early May when I told her we would be dropping by again in a few days.
There had been some new developments before our last visit (when I had fainted for a second at church). The first was about eating. Mother had always had a good appetite. A fine cook herself, she enjoyed eating and had to watch her weight. She could really do much cooking now - it wasn't safe - and it wasn't surprising to observe that the meals care-givers prepared for her seemed less appealing to her than meals she'd usually had.
But it turned out to be more than that.
She and Dad had found a particular restaurant where they were really comfortable, and Mother had continued to go there, with friends or family, two or three times a month. Over the last three or four years, whenever A----- and I had visited, it was a settled question that we would take Mother to L---'s for dinner. She knew the menu up and down, even now, and could pick out just what she wanted. Only, by last January, she seemed more to be just going through the motions and just picked at her food.
The meals A---- had fixed for us during that two-day visit were just Mother's kind of thing, and healthy too, but she'd been much more interested in having ice cream afterwards than anything. Cookies were not bad either. The zest for food had dwindled substantially, it was clear.
Mother had seemed more tired than usual too, sleeping late in the mornings - totally new for her - and lying down on her bed for long naps in the early afternoon. She had been troubled by insomnia for a long time after Dad died in 1980, and by her bed she still had a radio and an old cassette player with tapes of old radio shows. But there was no insomnia anymore, as we'd learned before January.
She wouldn't have missed Sunday church, of course, but she hadn't wanted to visit with all the friendly folks who hung around after the service, as she had done even as long as I could remember.
She just no longer seemed to be the perky, engaged little old lady she had been.
11
8/30/01
Before we went down in June, then, the care manager let me know that Mother's doctor was a little concerned about a partial blockage in her bowel, and an appointment had been set up for a cancer specialist in that first week of the month. We had been planning on visiting soon anyway, so we timed it so we could take her to this new doctor.
He was a younger man than I had expected in a gerontologist, soft-spoken. It turned out he had the results of a lot of tests, including an MRI, I guess. Anyway, he took Mother into a private examination room to check her out and ask her some questions. A curious thing about Mother's intellectual state was that she couldn't possibly generalize as to her overall condition, but as accurately as ever she could tell you what she was feeling at the moment. "Does your back hurt?" "Do you feel tired?" "Do you have a headache?" That kind of question she could answer fine.
They weren't gone long. Then the doctor asked A----- to sit with Mother while he and I could "get acquainted."
Inside his private office, he showed me on a screen the picture of Mother's colon (he said, you know, not that I would know on my own). He pointed out a shadowy blob and said if we had it biopsied, we could tell if it was cancer. His manner indicated that wasn't the best option.
The family had agreed years before that, as I believe this doctor knew, that Mother had lived a long, good life and that none of us would want to prolong it into worry, suffering, expense (Mother was very frugal!)... particularly as her mind slipped away.
I asked What if we didn't have the biopsy?
"If I'm right, he said, and the mass is malignant, then your Mother will decline either rapidly or slowly. We would minimize her discomfort, with this in the colon, and I can alert Hospice now, if you want me to."
I told him to go ahead. "So what'll come next?"
He explained that the Hospice people - with whom he worked often - had to have their own physician and nurse verify the situation before they would take on Mother's care. They wouldn't intervene before in their judgment the end was six weeks or fewer away.
12
8/31/01
That was three months ago, he realized now, as he straightened up from the keyboard and monitor. His wife and he had been home after the funeral now about a week. He had returned to work only a few days after that talk with his mother's doctor. Hospice had started in after only a week or so. Mother had declined very slowly, not going permanantly to her bed until the last week.
His daughter told him that someone at work said their parents had learned that it helped the grieving period significantly to write something down. Knowing her Dad, she had encouraged him to write the story.
"It's been a very hard year for you, Dad," she'd said.
13
9/1/01
I guess I won't try to recall the details of the funeral arrangements and all that. Even though I knew it was for the best and was comfortable, even pleased, with the decisions we'd made about the Hospice care, her death still took a lot out of me. And I dream now, almost every night, that I am me, an adult, but I live in my Mother's house. So, I'm just worn out.
I'm the executor of the will. The house will be on the market in a few weeks. The process is complicated but - well - routine.
But it didn't seem quite right to...
But it doesn't seem quite right to just stop. So here is a closing thought:
You never know what to expect. I certainly didn't know I even had a heart problem back in January 2001. It's now just the end of August, and I have a lot of maintenance drugs to take and a little machine silently working under my skin up in my chest.
Mother has had a quiet decline and is at peace, as they say.
So it's been tough, but one thing, It can't go on forever, can it? I mean, so many unfortunate things have happened to me this year already, I feel confident - at least - we've had our quota of disasters for the whole year already! You know?
***
