I placed the package on a high shelf in the garage. Sometime later, I and the rest of the family would come up with a plan for dispersal. In the meantime, there were many other things to attend to—sending death notices to the California State Teachers’ Retirement System, to Social Security, and to an insurance company where Mike had maintained a small, paid-up policy. Getting multiple copies of our marriage certificate to include with the death certificates. Providing proper documents to the credit union that would allow them to remove his name from a joint account. Cancel Mike’s health insurance policy. Etc., etc., etc.
We gathered for Christmas only six days after Mike’s death. Scattered throughout the frivolity of that year’s celebration, and the extreme levity that Dale’s 70th birthday prompted, were remembrances of Mike, expressions of our collective and individual grief, and a recognition of our shared relief that his long and torturous ordeal was over.
February 2016
Dear Mike,
Awake at 4 this morning, I took my iPad from the bedside table and tapped it on. Up came Our Souls at Night by Kent Haruf, published posthumously. I’d pre-ordered the e-book in January and have been waiting for it with a combination of eager impatience and foreboding. Books published after an author’s death always worry me. What if the book wasn’t ready yet? What if putting it out into the world was simply a business decision made by the author’s publisher and family?
I may not even read Go Set a Watchman, the novel Harper Lee wrote in the ’50s, before she wrote To Kill A Mockingbird, and which is just now being published. Ms. Lee has been adamant over the years that she would not write or release another novel. Now that she’s 89, in assisted living, without oversight by her recently deceased sister and caregiver, the old manuscript has suddenly been rediscovered. Of course, it will be a huge moneymaker, but Ms. Lee is in no need of money. Someone else may be, though. I’m afraid to read it. On the other hand, if it’s only half as good as To Kill a Mockingbird, it will be well worth the read.
But the impetus for this letter is Our Souls at Night, Kent Haruf’s recently released novel and my early morning reading and ruminations, not the pitfalls of posthumous publishing. Although I’m determined to live in the present, plan for the near future, and trust the farther future to the forces of the universe, I’m often drawn back to our lives together, especially those last most difficult years, especially in the silence of the very early morning hours.
This early morning, I read Kent Haruf’s depiction of two old people—a man and a woman—who had recently become close companions, and were sharing stories of their earlier lives. The man, Louis, is telling Addie about the moment of his wife’s death. He and his daughter, Holly, were in the room with her:
“She stared at us with those big dark eyes like she was saying, ‘Help me. Help me. Why won’t you help me?’ Then she quit breathing and was gone. People say the spirit stays around for a while floating over the body and maybe hers did. Holly said she had the sense of her mother being in the room and maybe I did too. I couldn’t be sure. I felt something. Some kind of emanation. But it was very slight, maybe just a breath. I don’t know. At least she’s at peace now in some other place or higher realm. I think I believe that. I hope she is.”
The passage caused me to wonder if I’d left your bedside too soon after your final breath, if your spirit had hovered, seeking me while I, ever practical, was at the nurses’ station calling Nautilus. If so, I’m sorry. I’m sorry for that, and for so much more, though I do at least take comfort in having been with you during your last hours, and telling you things which, because of your constant movement, I’d not been able to tell you for years. And I take comfort that I was by your side, my hand on your arm, as you breathed your last.
Now, more than a year later, Kent Haruf’s character has raised the possibility that the spirit stays around for a while floating over the body, and I wonder if that was the case for you, if you were looking for me, and I wasn’t there. I’m reminded of how, in the early stages of FTD, before I had any idea of what was going on with your brain, you would call me on my cell phone, sounding angry, saying, “I don’t know where you are!” And I would tell you, the store, the gym, the writing group, and then, just minutes later you would call again: “I don’t know where you are!”
Once I came home from the market to find you pacing in front of the garage. “I couldn’t find you!”
I was always careful to tell you where I was going and when I would be back, and your rude, angry phone calls when I was away angered me. Now I know that no matter what I’d told you, or what notes I’d left on the refrigerator, you had lost the capacity to know where I was. Now I think your anger must have been based in fear. And now I wish I had stayed by your hospital bed longer, in case your spirit was trying to find me.
Marilyn
GATHERING
January 10, 2015
FTD had started chipping away at the essence of Mike some time in 2005, and by the time of his death in 2014, the image of the emaciated, lashing out, constantly walking shell of Mike had essentially overpowered memories of better times. Yes, there would be times when a song or an anecdote would remind me of the Mike I’d married, my close life-partner for the pre-FTD 38 years of our marriage. But for the last six years of his life, nearly all of my psychic space was filled with witnessing Mike’s decline, managing his care, struggling to keep him from being evicted from first one place and then another, fruitlessly trying to find a calming drug or behavior technique that would keep him from being a danger to those around him, and through it all I was watching helplessly as all semblances of financial security slipped into oblivion.
As is true for most of my contemporaries, communication through social media doesn’t seem quite right to me. Because of my work as a writer, though, I’d followed the advice of another writer friend and set up a Facebook account. This was several years earlier. I can’t say that it helped sell books, but I did find it to be a treasure when it came to reconnecting with long ago friends. So I posted Mike’s obituary on Facebook. Within hours, former students were posting tributes to him. He was the reason one now teaches music. Another is singing professionally. He was the only one she could turn to when, at the age of 16, she realized she was pregnant. His class was all that kept another student coming to school. And on and on, such touching tributes not only from former students, but from others who had sung with Mike, or under his direction. Several spoke of his many kindnesses. All reminders of the Mike who had faded from memory.
We organized a memorial service for January 10, so Subei could be a part of it before she went back to college in Ohio. Mike’s Florida niece, Beth, arrived on the Thursday before the Saturday service. The other out-of-towners came in on Friday. I’d invited anyone who wanted to sleep on the floor to stay at my place (no one took me up on that), and directed the others to a nearby “unfussy all-suite hotel.” I’d also invited the out-of-towners and other close friends and family to my place for drinks and appetizers that Friday evening. Left to my own devices, appetizers and drinks would likely have been hummus and spinach dip with pita chips and a few bottles of Two-Buck-Chuck in each color. But luckily for all in attendance, I wasn’t left to my own devices.
Sharon came in early to help, bringing with her multiple bottles of wine that promised not to offend the palates of my more discerning guests. She also brought with her some fancy cheeses and artisanal crackers. She and Beth did a run to the market while I gave the duplex the kind of cleanup job my mother would have referred to as “a lick and a promise.”
In my Art of Entertaining manual, the page of instructions for how to make things look pretty on a plate must be missing. I knew which cupboard held the pretty plates, but beyond that I was useless in the “make pretty” department. In my previous life, Mike had made things pretty while I took care of practicalities. Now it was up to Sharon to carry on in her father’s tradition. By 4 in the afternoon, when our first out-of-towner, Bill Schmidt, a
rrived, there was a vast array of appetizers beautifully displayed on the kitchen/living room bar, and acceptable wine ready to pour into Mike’s crystal glasses.
Soon there were more people crowded into my little duplex than it had likely ever seen before at one time. Kids and grandkids, longtime Southern California friends, people Mike had sung with, or taught with, or traveled with, told sweet, funny, quintessentially Mike stories. Most of the people in the room had experienced puzzling, at times hurtful, behavior as FTD was gaining a foothold, but other than close family, none had witnessed the anxiety-ridden, enraged, uncomprehending, combative version of the Mike that had filled my waking and sleeping life for the previous five to six years. Now, though, in this place filled with love of Mike, and of each other, pieces of pre-FTD memories pushed through the heavy dark clouds of the recent past, and the whole of the man I’d loved and lived with rose toward the surface of my consciousness, waiting to be restored.
JUST THE FACTS
Every drug listed is one Mike took during the course of the designated year. Due to gaps in my records, start and stop dates are not often listed, nor are dosage changes.
Attempts to treat Mike’s depression/anxiety through drugs often brought a positive change for a short period of time, though sometimes it took a week or so to see any effects. The positive change might last for just a few days up to a month or so, then Mike’s level of depression/anxiety would return to a pre-drug treatment level, as if he had a set point that was stronger than any medication could counteract.
2005
Behaviors:
Panic attack at choral concert.
It seemed that times of indifference and a general disinterest in me were becoming more frequent, though that was hard to measure. This wasn’t totally new behavior, but my sense was that the frequency of such behavior had increased. Generally, the changes were subtle and nothing others were noticing.
Prescription Drugs:
Zocor (simvastatin), 40 mg. Cholesterol-lowering drug. One of the more serious side effects is confusion and memory problems, though I wasn’t aware of that at this time.
Zoloft (sertraline), 50 mg. An antidepressant of the selective serotonin reuptake inhibitor (SSRI) class.
2006
Behaviors:
Indifference, disinterest more the norm. Increased dissatisfaction with all things Sacramento. Increased dissatisfaction with UUSS Music Director position. Ranting about politics, the behavior of others, whatever irritated him. Calm discussion was not often possible. Stopped regular exercise. Began weight gain.
Prescription Drugs:
Cymbalta (duloxetine), 30 mg. to 60 mg. For treatment of major depressive disorder and/or generalized anxiety disorder. The only side effect that might have been at play at this time would be agitation.
Wellbutrin (bupropion), 150 mg. (started 9/14/06, stopped 4/23/07). Antidepressant. May be add-on in cases of incomplete response to SSRI. May impair thinking or reactions.
Zocor (simvastatin), 40 mg. Cholesterol-lowering drug.
Zoloft (sertraline), 50 mg. Antidepressant.
2007
Behaviors:
Continued increase of indifference and self-absorption with me.
Occasional indifference and self-absorption now exhibited with others. Continued increase in dissatisfaction with life: Sacramento, loss of Yip Harburg project, need to conform to HOA’s requirements. Lessened ability to understand or accept the opinions of others. Increasing frequency of ranting. Incapacity to focus on positive aspects of life for even 15 minutes. Occasional difficulty keeping track of appointments or social engagements. Longer time periods of depression with increased severity.
Prescription Drugs:
Cymbalta (duloxetine), 30 mg. to 60 mg. For treatment of major depressive disorder and/or generalized anxiety disorder.
Lipitor (atorvastatin), 80 mg. (started 4/08/08). Drug class of statins. Cholesterol-lowering drug.
Topamax (topiramate), 25 gm. (started 9/26/07). Anticonvulsant. Sometimes used to treat bipolar disorder, borderline personality disorder, may have mood-stabilizing properties. (As of May 21, 2010, there was no data from any well-controlled clinical trial to show that Topamax was safe and/or effective to treat any psychiatric conditions.)
Vytorin (ezetimibe/simvastatin), 10 mg. of one drug, 80 mg. of another, lipid-lowering drug.
Wellbutrin (buproprion), 150 mg. (started 9/14/06, stopped 4/23/07). Antidepressant.
Zocor (simvastatin), 40 mg. (stopped 4/23/07). Cholesterol-lowering drug. One of the more serious side effects is confusion, memory problems.
2008
Behaviors/Events:
More pronounced indifference and self-absorption, including with others. Continued increase in free-floating dissatisfaction with life: Sacramento, my schedule, church choir details. Growing inability to understand or accept the opinions of others. Often self-centered. “Conversation” consists mainly of ranting. Unwillingness to focus on positive aspects of life. Growing difficulty keeping track of appointments or social engagements. Continued depression with increased severity. Complaints of headaches and generally feeling unwell. Calling Sharon in the middle of her busy workday, sometimes saying, “I don’t know where Mom is,” and wanting to talk at length.
Repeating the same stories as if stuck on them—how unpredictable his mother was, how he hated the squirrels that he thought were scaring the hummingbirds, how racist his younger brother was, etc.
No longer able to use ATM.
Prescription Drugs:
(Ongoing unless otherwise noted. 1 per day unless otherwise noted.):
ASA (acetylsalicylic acid, or aspirin), 81 mg.
Cymbalta (duloxetine), 60 mg. twice daily. For treatment of major depressive disorder and/or generalized anxiety disorder. The only side effect that might possibly have been at play at this time would be agitation.
Ritalin (methylphenidate), 5 mg. For suspected AD/HD
Topamax (topiramate), 25 mg. Anticonvulsant. Sometimes used to treat bipolar disorder, borderline personality disorder, may have mood-stabilizing properties.
Zetia (ezetimibe), 10 mg. Cholesterol-lowering drug.
2009
Behaviors/Events:
Self-centered, emotionally withdrawn, often unaware of others’ emotions.
Outbursts of frustration, diminished social tact.
Difficulty reasoning, poor judgment, can’t keep track of appointments or organize music.
So anxious about getting places on time, may show up an hour or more early, then leave, angry that what he expects to happen isn’t happening.
Watches same movies repeatedly, constant repetition of phrases and stories, “I never walk out of a movie,” “They called me Mikey when I was a boy,” etc.
Constant use of washing machine and dishwasher with very small loads.
Increasing trouble naming people, objects, facts and words.
Speech keeps regular speed and rhythm but filled with inaccuracies.
Can no longer function as choral director for Chanteuses.
Mandatory “medical leave” from Westminster Presbyterian Church.
Prescription Drugs:
Xanax (alprazolam), .5 mg. Generalized anxiety disorder, panic disorder.
Cerefolin-NAC. Prescription-strength vitamin supplement.
Concerta (methylphenidate), 27 mg. For suspected AD/HD.
Cymbalta (duloxetine), 60mg. Major depressive disorder, generalized anxiety.
Erythromycin Base, 250 mg. Antibiotic.
Lunesta (eszopiclone), 3 mg. Insomnia.
Namenda (memantine HCI), 10 mg. Alzheimer’s, though sometimes used for other dementias.
Trazodone, 50 mg. Antidepressant.
Zetia (ezetimibe), 10 mg. Cholesterol-lowering drug.
2010
Behaviors/Events:
Consistently self-centered, emotionally withdrawn, unaware of others’ emotions.
>
Increased outbursts of frustration, severely diminished social tact.
Difficulty reasoning, poor judgment, can’t keep track of appointments or organize music, has lost the ability to understand time sequences. Telling him we’d do something later in the day, or tomorrow, or the next week, was the same thing as telling him we would be doing it right now.
No longer licensed to drive.
Rather than showing up an hour early for an event, he now feels a strong need to go days earlier than scheduled.
Watches same movies repeatedly, though will often not be able to accurately state what he’s been watching. For example, after seeing “Singin’ in the Rain,” looping from morning to afternoon one day, I asked what he’d been watching. “Moulin Rouge” was his answer.
Although still repeating certain phrases and stories, he hardly ever initiates conversation.
Increasing trouble naming people, objects, facts and words.
Speech continues to keep regular speed and rhythm but is mostly inaccurate.
Sometimes refuses to shower, wants to wear same clothes day after day.
Continues to capably play the piano.
December 10, 2010, moved to secure memory care facility.
Prescription Drugs:
Lipitor (arovastatin), 10 mg. Cholesterol-lowering drug.
Cymbalta (duloxetine), 60 mg. Major depressive disorder, generalized anxiety.
'til Death or Dementia Do Us Part Page 34
