back to work… for ever

I was filling out my leave slip for the four days I was away preparing for, attending and recovering from Dad’s funeral, and just discovered that federal employees don’t receive any special bereavement leave. We can use our sick leave for that purpose, but I’d used all but 12 hours of sick leave over the past year visiting my dad in the hospital and getting tested as a potential kidney donor. So I had to take two-and-a-half days of annual leave out of the four I had left. I haven’t had a vacation–with the exception of the long weekend I took to visit Roger and Raymond in Tucson this spring–since I started this job. And with a day-and-a-half of annual leave to my credit at the moment, it doesn’t appear that I’ll be doing so any time soon.

When I got to work this morning, I walked in my office and sat down at my desk; I hadn’t even had a chance to check my email or voicemail when I got a phone call from the executive director. I thought she might be calling to welcome me back and express her condolences. I really should have known better; I suspect her Myers-Briggs is not inclined toward F on the Thinking-Feeling axis. True to form, she was having a crisis and needed me to sort it out, stat. On the positive side, it did keep my mind occupied for the next several hours.

day 2: arrangements

On Friday, we began with some of our difficult responsibilities. Dad already had purchased a number of cemetery plots–in fact, the receipt for their final payment had arrived while he was in the hospital–though he hadn’t yet chosen which one he wanted. Our first stop, though, was to the funeral home, where we had to provide the information to go into his obituary for the newspaper, and deal with all the details and arrangements for the viewing, the funeral and the interment. I don’t begrudge the staff of funeral homes making an honest living, but I’m disgusted at how much it costs to leave the world after you’re dead. It’s a couple thousand dollars just to walk into the funeral home, before you’ve even selected the casket, vault, flowers, cars, etc. My father, a financially savvy, frugal man, would have been appalled at the potential costs that literally were going to be thrown into a hole in the ground. In addition to the casket, which is seen for brief periods of time over the period of a few days, there’s the vault–the container into which the casket is sealed–which is never seen by anyone; at the interment the vault was covered by astroturf. These two items cost within a range of about $1,000 to as much as $12,000–each.

It’s not precisely that I begrudge spending money in someone’s honor, but this is a substantial amount that comes, at least immediately, out of my mother’s living expenses–compounding the injury, when Dad turned 65 just three weeks ago his substantial life insurance policy ended, so all Mom has now is a little bit of social security, and the stocks and mutual funds into which Dad had invested over the years (not insignificant, but which lost a great part of their value in the recession of the past few years). Mom’s by no means destitute over the longer term, but has little in the way of liquid assets more immediately, and that’s where the funeral expenses are drawn. And my sister and I want to help, but she and her husband have three kids, one of whom hopes to enter college this fall; and, while I do well for myself, especially as a single man, my own savings are about to be plundered for a new heat pump and either a new engine for my current car or a new car altogether.

Anyway, that’s just a gripe about the compounded injury when a person dies; you’ve lost not only the loved one, but suddenly your financial health potentially is threatened as well by the loss of their income and by the funeral expenses. I don’t know how poorer families cope at all in the face of a death.

After we’d chosen a casket and vault, and signed off on the preliminary cost estimate, we made our next stop at the florist to commission a floral spray for the casket. We went to a florist shop owned by a high school friend of mine, known for his beautiful work. We told him we wanted autumn flowers and colors, a favorite of all of ours but also appropriate because of the closeness of the date to the anniversary of Mom and Dad’s wedding, at which they’d also had fall flowers. Beyond that, we gave him no instruction, but just told him to create what he wished. When we saw it the next day at the funeral home, we were stunned; he’d gone far beyond even his usual fine work, and certainly had created something for which normally he’d have charged far more. It was an amazingly beautiful arrangement primarily of yellow, orange and red flowers among the greenery, with an occasional deep purple, and with accents in copper and golden-brown. There was some sort of needled evergreen-like branch threaded throughout, upon which were the prettiest little coppery white flowers; I’d never before seen conifer sprigs that flowered.

Our final stop that morning was to the cemetery to see where the plots were located, and to choose one of them for Dad. They’re in a new part of the cemetery, in a pretty little field bordered on one side by the woods.

In the meantime, my cousin Susan, who cuts hair for a competing mortuary in town, received permission from the funeral home with which we were doing business to come cut my dad’s hair. I’m amazed that she was able to do so for my dad–she also cut our grandmother’s hair after she died–but she did, and she did a wonderful, loving job.

We spent the rest of the day at home, where a steady stream of family and friends visited well into the night. We did go back to the funeral home that evening to view the body, just with family; walking into that room the first time was one of the hardest things I did all weekend, but within a little while my mom, my sister and I were sharing funny stories and memories of Dad. A little while later my brother-in-law arrived with the two youngest of my three nephews, and that was very, very painful. I can’t quite imagine what it’s like for Shane, at 8. At times he was almost blithely secure in his little boy certainty of Dad’s fate: he drew a picture of Dad playing softball in heaven with dead Brooklyn and LA Dodgers–Dad’s favorite baseball team–of the past. At other times, though, he was a pitiful little boy, crying but feeling embarrassed, wondering if “Grandaddy is really dead, or if the doctors and machines just made a mistake.”

post-death thought: donate life

As I noted in the previous entry, after nearly ten years of hell and until his sudden illness and death from an unrelated cause, my dad had about eight glorious fully active months of good health again, because he received a kidney transplant. Please, please, please consider filling out and carrying with you an organ donor card and/or the equivalent on your state’s driver’s license, and make sure that your family knows your wishes to be an organ donor upon your death.

If you work for the federal government (and similar policies exist for many states and private corporations), you are eligible for up to 30 days of paid leave to serve as a live organ donor, or up to seven days of leave to donate bone marrow.


In lieu of flowers for my father’s funeral, we suggested that family and friends consider making a donation in his name to a fund at the Virginia Transplant Center that provides medications for transplant recipients who cannot afford their own. I’d be happiest if people just completed their organ donor cards, but I’m also including the information for the fund below:

SEOPF
c/o Virginia Transplant Center
1602 Skipwith Road
Richmond, Virginia 23229
ATTN: MOB 110

SEOPF is the South-Eastern Organ Procurement Network.

day 1: the rest of the day

After getting off the phone with my sister Thursday morning, I had to find a way to get to Richmond and then to my family’s home (as I had reported, my car had become undrivable again after my return from Richmond the previous weekend). I immediately thought of my friend Craig, who’d loaned me his Santa Fe for almost two months this summer when he was vacationing in Europe. I had an old home phone number for him on my computer, though, and woke someone up–for which I’m very sorry, and I hope I didn’t panic her with that 5:15 a.m. call. I then called him on his cell phone, which went into voicemail, and while I was looking up his correct home number on my mobile, he called back and told me he would bring the car right over and that he wouldn’t need it before Tuesday. I started throwing clothes into a suitcase, interrupting that just long enough to let Craig in and then drive him back to his home. By 6:00 I was back home to finish packing, put lots of food and water out for Alex, and then drive Jeff home; by 7:00 I was on the road to Richmond, and arrived at the apartment about 8:45, where my mom, sister and I held each other, hugged and cried, talked on the phone with other family, and sat with two of the nurses from the Transplant Center who had become good friends of ours over the past few years, while waiting for my uncle and two cousins to get to Richmond to Covington to drive my mom’s car back (since my sister and I each had our own vehicles to drive) so that she wouldn’t have to try to drive under the circumstances.

We were at my parent’s house before noon, where we spent most of the day just in a state of shock, with a house full of Dad’s sisters and their families, and the beginning tricklings of what would become an almost unceasing flow over the next few days of family and friends, with every new arrival seeming to break Mom’s heart anew; just as she’d begin to calm, someone new would arrive to hug her and her heartrending sobs and protestations would begin anew. I try to understand intellectually the value of the visitation and funereal process in America, but I sometimes fail to grasp it, having just lived through it. It seems as though the family is kept so raw for the days up to and including the funeral; while other people come in, express their grief and leave, we were faced with theirs over and over again almost non-stop for several days, only having time to feel our own during the almost non-existent moments between visits and at night.

Food had started arriving even before we got home Friday morning, especially lots and lots of fried chicken and desserts (beginning with a box of more than 50 pieces of chicken brought by the family’s minister). I discovered that under these strange circumstances I, the thinnest member of my family–who at my own home never eats breakfast, sometimes skips lunch, and often doesn’t eat dinner until late, and have even been known to forget to eat–started eating almost non-stop; while my sister, who is overweight, threw up every time she tried to eat anything; and my mother just wouldn’t eat at all.

My sister slept on the floor of my parents’ room that night. I slept in my parents’ former bedroom in the old part of the house. The word “slept,” though, is not altogether accurate. I was up most of the night with acid reflux, while my sister and mother report that they slept only fitfully as well, and were up and around by 5 a.m. Friday.

day 1: a surprise and yet not

I knew, of course, as soon as my brain woke up enough to realize a phone was ringing and my eyes simultaneously took in the bedside clock display of 4:55 am: it could have been a wrong number, of course, but I knew.

Still, it wasn’t supposed to happen this time. Yes, Dad was very, very sick, but every single doctor, every single nurse kept reassuring us that he would recover; Guillain-Barr

day 1 aside: bedside mannerless

“Mrs. Watson? This is the hospital; your husband has expired.”

These were the cruel words, so cavalierly delivered, that greeted my mother at 4:30 a.m. last Thursday and changed her life–and mine, my sister’s and the rest of our family’s–irrevocably. The nurse used just those words, and didn’t ask if my mother were alone or not–fortunately, my sister was with her, to comfort her and to take charge during my mother’s resulting and understandable hysteria.

I wonder sometimes why some people, so obviously unsuited to a caring profession like medicine, especially direct patient-care nursing, choose such a field anyway. Throughout my dad’s long battle with kidney disease, peritonitis, and later his kidney transplant and most recently three weeks with Guillain-Barr

sometimes it /can/ be stressed strongly enough

I‘m back from Richmond, and I’m beat, after only two days. I’m not sure how Mom deals with the stress as seemingly well as she does, being much more directly faced with Dad’s hospitalization on a day-to-day basis; she does break down in tears every now and then, but I don’t see the same kind of physical manifestations I’m starting to see in myself–restless nights and grinding teeth, acid reflux, chest pain, backache, flagging libido, etc. I’m starting to feel a little overwhelmed again by the confluence of factors from work, home, car and family, similar to what I felt two years ago when I had the layoff, car accident, and family health problems all at once, which turned into a depression of sorts. Until just the past couple of days I’d felt like I’d been retaining a sense of perspective and ability to function, but now I’m beginning to feel like my coping skills might be over-taxed. At work it’s been a struggle to retain my tact and calm, skills my boss normally recognizes and for which she counts on me; at home I’ve been avoiding taking phone calls from anyone except my mom, my sister and Jeff. And I’m guessing that Jeff is just too polite and tactful himself to be honest about what a drag I’m being, given my level of fatigue, distraction and general whininess.

On the positive side, Mom regained power at her temporary apartment in Richmond on Friday, after just over a week without. She’s much more comfortable now that she can wash her clothes, keep food in the refrigerator and cook in. And I left a laptop with her so that she can check her email, at least.

Dad’s temperature, which earlier I had reported had returned to normal, actually still continues to fluctuate quite a bit, though at least it is no longer hitting the very high spikes of a week ago. Mom also is encouraged that he is shrugging his shoulders slightly and occasionally, insistent that this means the paralysis is retreating. I’m less convinced, unsure that this is truly a sign of recovery already or just a result of his being less sedated now than previously; I’m not sure that the paralysis had ever fully engulfed his shoulders, and it certainly had never involved his neck, which he has been able to move back and forth, when agitated, except when in the very deepest level of sedation.

On the less positive side, when I arrived Saturday morning we were kept out of the CCU because a sputum specimen taken from his lungs showed a very, very minute possibility that he also had contracted TB. Skin tests have continued to show negative, but the doctor says that while he doesn’t actually believe that Dad has TB, “a couple of cells on a slide containing three to four hundred looked slightly suspicious,” enough so that they needed to take the precaution of moving him to a negatively pressurized, isolation room. This has the effect of requiring us to put on robes (though by yesterday afternoon they had dispensed with that requirement at least), masks and rubber gloves when we visit him; it also results in much less traffic into the room even by the hospital staff, so that Mom now feels even more alone–and, I think, a little claustrophobic–while visiting.

And my car started experiencing problems again on the trip down and back, to the point that I’m now walking to work and will likely have to rent a car to get back and forth between here and Richmond the next couple of weekends until I can buy a new car. Toyota now is reporting that demand for the new Prius is much higher than anticipated and possibly higher even than is planned for production; 10,000 (of only 36,000 slotted to be produced) already have been pre-ordered by previous Prius owners, and the wait for new orders will be on the order of months. Since I now need a car more immediately than I had hoped, and both of my first choices–the Prius and the Mini–have months-long waiting lists, I need to go back to the drawing board and come up with a new, less desirable but more available choice that I might be able to purchase more readily.

And I still haven’t done anything about getting the heating and cooling system in my condo replaced.

the road to richmond

Unless I find something worth audblogging over the weekend, I’ll be incommunicado on the net this weekend. I’m travelling down to Richmond again this weekend to keep my mom company and to visit my dad who remains hospitalized indefinitely. I’m taking the laptop to leave behind with Mom, but at the moment she’s still without electricity a week after the hurricane, so I don’t know if power will be restored while I’m visiting. The apartment complex where she’s staying temporarily has had water service since Sunday, so she’s been able to bathe, at least, and my sister brought her a cooler of ice (which my aunt and uncle replenished when they visited her on Wednesday) and a battery-powered radio with weather and tv bands when she drove there this past Monday.

Dad’s condition is mostly unchanged, though his temperature has returned to normal, which is hopeful news vis a vis the hospital-acquired pneumonia. His blood pressure also has stabilized. Earlier in the week the doctors discovered that Dad was losing blood, so in addition to giving him a couple of units they had to do both an endoscopy and colonoscopy to try to find the cause; during the latter procedure they did find a couple of intestinal polyps, which they cauterized, and they are hoping that that has taken care of the bleeding. The nurse has reported a small amount of blood since then, but that could just be from the procedure itself. I’m hoping that Dad will begin to have some periods of consciousness while I’m visiting.

Otherwise, I’ll be reading by oil lamp and candlelight, and chatting with my Mom, away from any possibility of Internet, computer games and TiVo. And missing Jeff terribly, since I’ll be away not just this but most weekends for the foreseeable future, and he is away next weekend as well, vacationing on the Cape.