Cleaning House

A week of massive cleaning out.  Around the house, I have been packing up clothes, paying bills, and discarding innumerable tiny scraps of paper, tissues, toothpicks, spent cartridges from electronic cigarettes, and the like.  I am grateful for my godmother, who once again jumped into the fray -- this time paperwork -- and uncovered the fact that my mother's insurance policies had lapsed.  Sing ho! for progressive.com.  Oh yeah, we got that baby insured!

I am also grateful to my mother's friend who came over and emptied the Drawers of Danger.  The Drawers of Dangers were... well... can you bring to mind any very personal items that would be really embarrassing if a casual acquaintance saw them?  Now imagine finding such items in the possession of your own mother.  Sorry, that was roughing my audience, I know.  But I had to share the pain.  (As my ecology professor said, the solution to pollution is dilution.  Now my brain has a little less ick and yours a little more.  Your kind services are noted.)

Beyond that, there is the cleaning out of the head.  I am surprised at how little I have met in the way of current feelings about my mother and her death.  Feelings from the past, I got plenty.  The one thing now is that I sometimes think about how we left her in that hole in the ground.  It just seems odd.  In much the spirit that I asked my mother when I was five, "Mommy, is it okay to walk on dead people?" I now want to know, is it okay to leave dead people in boxes in holes in the ground?

The anxiety bit me on Monday, and I was out of sorts for a couple days.  Out of sorts here refers to being uncomfortable and unable to stay on task.  As of the last couple of days, I am not completely out of sorts.  Sorts may be in short supply, but I at least have one or two on hand.  I noticed an interesting thing, though, which is that while I was anxious and out of sorts, I didn't have any trouble focusing on tasks which were important to me.  It was only the urgent-but-unimportant-to-me tasks that I couldn't handle.  Beating anxiety being one of my main goals at this time, it occurs to me that it may help if I make time for the important stuff.

Oddly, the thing I feel sad about is that fool of a feller.  I suppose because I had actual hopes for him, whereas I had given up many hopes in relation to Mom.  And because talking with him felt fun and exciting, whereas Mom... well, she was dying of cancer.  I am ashamed of feeling anything about a feller I have only known for a grand total of two months, but I will say that I have been doing some archaeology of the mind on this account.  I am remembering that an unpleasant aspect of sexism in my school experience was that boys were in charge of who was treated like a real person and who would be ridiculed.  Girls could also ridicule a person, of course, but my experience was that they mainly ridiculed me on the topic of boys, and so the net effect was that association with a boy pretty well indicated whether one got any respect or not.  Outrage at this whole state of affairs still dictates that I act too proud to acknowledge that having a boy matters.  Worse still, I think a little part of me is still waiting for their approval.  What would Martha Stewart say about how to clean up that mess?

Tomorrow I head out to my first Jewish women's study retreat.  This should be refreshing, enriching, and even distracting if necessary.  And it will fill my mind with more edifying topics.  The solution to pollution...

Shiva

Today is the second to last day of shiva, the Jewish mourning practice in which the bereaved sit on low stools in the house of the deceased for seven days following the death.  So the death must have been six days ago, I suppose.  Working backwards:

Today, I was feeling a little sorry for myself because I tossed and turned for hours last night.  When I finally got up, I discovered that my sister had the Migraine of Misery.  This after yesterday's Migraine of Morbidity.  So I quit feeling sorry for myself and made her some oatmeal.  I am glad to report that her situation has improved.  She now has the Headache of Horribleness.

Yesterday our godmother came to the house and brought good cheer and thoughtful reminiscences.  She really knew the good and the bad, and I can tell her a complex thing about my mother and she will both understand it and talk it slap to death with me.

Sunday was the day most people chose to pay their shiva visit.  We had a number of people from the temple whom we had not seen in years.  I can really see how my roots still go back around here, even though I have been gone for 13 years.  Simple things like memories about Christa McAuliffe that people don't have when they are not from the area of Concord, N.H.  The rabbi was wonderful to talk with as well.  She is wry and caring at the same time.  Our conversation with her covered such topics as, how could Anne Heche claim that lesbianism was a phase for her?  Might the heterosexuality not be the phase?  Also the rabbi's rubber duck collection.  Another congregant shared with us the history of fried gefilte fish, which my mother made for him once.

Saturday I went to services, and the rabbi (a different rabbi) talked about how I'd drawn my mother closer to the Jewish tradition in the last part of her life.  I also got to recite the Mourner's Kaddish and Kaddish d'Rabbanan  "for real" for the first time.  I thank Morty Berkowitz and Scott Korbin for enunciating so clearly over the years that this was no problem for me.  I was waiting for the other guy saying them to catch up.

Saturday I also confronted that feller I had the crush on, as he had not contacted me at all for the last two weeks of my mother's life.  I wanted to tell him that this really hurt.  He said that he had just gotten wrapped up in the daily grind.  And then he said, "Still friends?"  I cannot decide yet whether accepting a "friendship" in which he might be too busy to drop me a note while my mom is dying (for about a month he sent several messages each week, plus hours of online chats) would just degrade the concept of friendship. And of me.

Friday, my sister, her partner, and I sat around the house.  We had a couple of visitors and a few calls.  We blinked a lot and ate chips and french onion dip.

Thursday was the funeral.  We brought Mom's coffin to the cemetery in the back of a cargo van.  We told her we wouldn't let her be left alone at the funeral home, so we didn't send her there.  She stayed with us overnight.  The rabbi led my sister and I in "kriah," the tearing of the garments.  My sister took a ribbon to attach to her clothing, and tore it.  I had selected the shirt I was wearing for sacrifice, and tore that.

It was a graveside service, and the weather was bright and sunny with flowers and trees blooming.  It was the first day of blackfly season.  I really thought to myself, "I am trying to focus on the importance of this occasion, but it's all I can do to keep myself from making a spectacle by slapping blackflies constantly while I'm standing here next to the rabbi!"

The rabbi, being possessed of superior blackfly-ignoring skills, gave a very nice eulogy which acknowledged Mom's strengths and gifts as well as her difficulties.  She led a service which was long on respect and short on stuffiness and grandeur for its own sake.  A couple of poems, the refrain of a song Mom requested, the Kaddish, El Malei Rachamim.  The cemetery guys lowered the coffin into the ground, and everyone put a shovelful of dirt into the grave.  Then everyone formed two lines.  My sister and I walked between them, and everyone gave condolences.  Some spoke spontaneously, others gave the traditional condolence: "May Hashem comfort you among the mourners of Zion and Jerusalem."  This marked our official passage into mourner status and the beginning of shiva.  The rebbetzin gave me a bagel and two hardboiled eggs to be our first "meal" when we returned to the house.

Many people went to the reception which my godmother had arranged at the temple at that point.  I stayed, because it is a custom for Jewish people to fill a Jewish grave all the way to ground level.  Having gotten Mom this far, I wasn't quitting now.  Besides, I have a good relationship with dirt.  It is real.  It helps.  So I pulled out my hiking boots and put them on over my stockings, as the nice shoes my sister loaned me for the service had not been selected for sacrifice.

I had to be a little patient with people who thought I should "take a break" from shoveling.  I suspect that they were getting tired from watching me.  I was not tired.  But it was good to have a couple of people helping, as it went faster.

And then I had to leave.  The very first friend I ever made was there with his wife, and they volunteered to drive me over to the temple.  They gave me a moment alone to do whatever I had to do, but there was just nothing left to do.  I came to do this thing, and I had done it.  Mom was at rest.  So I had to leave her there and walk away.

Wednesday was Death Day.  Mom had been both withdrawn and agitated on Tuesday night.  we had Hospice over to evaluate what we could do for her, and she seemed to calm down a bit.  By 1 a.m., we all felt weird about going to sleep with Mom so close, but I said, "It won't be in the next few hours.  We should try to get a little sleep."  But we were restless.  I woke up with Mom at 4 a.m. for no particular reason.  My sister woke up with Mom at 5 a.m. and gave her meds.  Then around dawn we all actually got a little bit of restful sleep.  We woke when the nurse called at 8:30.  She said, "How's Linda?" and my sister looked into Mom's bed and said, "I think it's happened."

The nurse and the social worker came over right away.  By the time they had gotten here I had recited some verses that the rabbi has advised me to recite, opened a window, poured out any standing water, lit a candle, and covered the mirrors.  These Jewish customs serve to give the freshly bereaved some clue of what to do with themselves at that moment.  The nurse pronounced the death.  The hospice doctor arrived soon afterward, and we actually had a lovely "death party," talking about the things we had all gone through in the last months.

We called the rabbi and the leader of the chevra kedisha (the society that prepares the dead for burial).  We called the cemetery and asked them to start digging.  I typed the obituary into the online form, all except the time of burial.  Our godmother started calling everyone to let them know.

In the afternoon I took the death certificate to the town clerk and requested a permit for transportation and burial.  Since most people waiting for assistance at the town clerk's office all needed the same thing, I was not offended when she asked me if I was there for a dog license.  I went home to meet the chevra kedisha and make sure that they had what they needed.  Then my sister and I met with the rabbi (because the chevra kedisha was with Mom, she wasn't alone), who talked with us about the service and got material from us for the eulogy.

Our last act for the day was to rent the cargo van.  The helpful lady chatted with us about oh, were we moving?  Um, yeah.  We just have to move a couple of big items.

I cannot fail to mention that in the background this whole time were my sister's unflappable partner and my sister-of-non-biological-kinship.  They stayed with us the whole time and quietly did whatever needed doing, adapted to whatever moods we were in, and never required the least bit of attention or maintenance from us.  They should receive gold stars and also be put in charge of a worldwide training organization for friends and family members of those undergoing loss.

There is still so much to say about all of this, but I am going to post this entry now before it turns into a manuscript.  The last thing to mention is how much I appreciate all of you who have gotten in touch.  It makes all the difference.

Far

So, after spending most of Friday in a minimally conscious state, Mom livened up a bit on Friday evening. We went to bed around midnight (me and my fabulous sister-of-non-biological-kinship), to be awakened by hollering at 2 a.m. on Saturday. Mom was twisted up in bed, frantic because two friends of hers were in prison.

After calming her down a bit and explaining that the friends are not in prison, that it had been a bad dream, we went through three attempts to use the commode. I had not lived until I'd been peed on by my hallucinating mother. I have appropriated a nice caftan from her wardrobe to serve temporary pajama duty.

We got back to sleep at 5 a.m., and got back up to deal with someone being in prison around 9:45. Mom was very animated through the day, not sleeping at all, but fussing with the bedclothes and the blinds and the trapeze bar and anything else she could find. And she started counting. She recites numbers, sometimes in order, sometimes not. Sometimes quietly, sometimes emphatically. Sometimes in the middle of other words, sometimes all by themselves.

My wonderful sister-of-biological-kinship arrived with her partner on Saturday night. She stayed with Mom so the other sisters could sleep. She herself got very little sleep, because Mom stayed up most of the night, just dozing a little bit. Sunday Mom was slightly calmer. Slightly.

The hospice literature says that it is common for someone to experience a temporary surge of energy in their last few days. I regret to say that Mom may be experiencing a surge of energy for her last few days! I stayed with Mom from 4:30-6:30 this morning. She was still active in the rest of the morning, but my sister took over so I could pretend to sleep. Both of us heard her talking about someone or some dark thing at the end of her bed, and telling it that she wasn't going to go.

She has also talked about being in prison herself, about not being able to get out of the bed, about seeing her mother, mother-in-law, and brother, and about having to leave -- usually to go to the airport.

Some of Mom's hallucinations are distressing to her, clearly. And she is probably having normal feelings of trepidation about death. And she is experiencing those hard-to-define things that are not scientifically verifiable, but that seem to be pretty real in the vicinity of death. So how much do we validate her and help her with her feelings, and how much do we give her Haldol?

When the Hospice nurse came to day we consulted with her. She suggested a trial run of giving Mom Haldol every 6 hours, similar to what she was taking when she could swallow pills. We can see if she seems to be having a better or a worse experience in 24 hours. On Friday the end looked so near that we didn't talk much about what to do about meds except for the pain relief. Now that the end looks farther, we need a slightly more long-range plan. I will say that since her 3 p.m. Haldol and pain meds, Mom has seemed significantly more relaxed. She may even be drowsing a little.

My sister and I have decided that we are working on about 1 brain cell apiece. She says that eating a grapefruit boosted her brain cell count to 2. I may have to try this. We are doing one thing at a time, as seen in the following example, my tax return preparation process: 1. Get the stamp. 2. Affix stamp to envelope. 3. Seal envelope. 4. Put letter in mailbox. 5. Raise flag. So that's the sort of level we are on. We're feeling pretty ready for the big event here.

Near

Mom changed gears this morning. I couldn't rouse her enough to swallow her pills, and ended up crushing her pain meds, putting them in jam, and sticking them in her mouth. She responds with a smile when you speak directly to her, but has not spoken or focused her eyes. Which, by the way, are half open.

The nurse saw Mom today and described this as the "active dying" phase. In my family, we call it time for the death party. You know, where everyone comes to the house and won't leave until it's over. The nurse said that she looks very comfortable, and we have plenty of ability to give her pain meds, both crushed and liquid. The nurse and I both have a gut feeling that tomorrow is the day.

Yesterday was hard. Mom was in an odd way -- I could see that she had shifted a bit, kind of like she wasn't in her body as much as before. I felt like I couldn't be as warm toward her as might have been ideal. I wasn't quite up for a lot of hand-holding and happy memories and reassurances and such. There has, historically, been more to our relationship than that warm fuzzy stuff. Then again, perhaps the feeling of distance wasn't coldness from me. Perhaps it was just the wind between two points that had moved further apart.

Last night my sister from Massachusetts came up, which was so helpful. She got to hear and helped me remember this wonderful phrase: Mom admired her hairdo and said that it looked like she had a "professional hair creeper." I will have to find a professional hair creeper!

Other blessings: I was having a devil of a time coming up with money in the form of a check for the cemetery. I can't access Mom's checking account. Today her friend just wrote out a check to the cemetery for $1,060.00 and handed it to me.

We're handling this funeral ourselves -- no funeral home. After checking into the logistics and legality of everything, I couldn't find anyplace that would sell the required grave liner to me as an individual. So a very nice funeral director has ordered it on my behalf, as well as the casket. With no service fee from the funeral home. A nice tip and a glowing letter of recommendation are in his future.

Now I am just trying to figure out what sort of eulogy to write. I'm having trouble getting started. It's portraying the intersection of truth and higher truth that has me stumped in this case.

Channel Surfing

Mom is flipping TV channels in her head, I'm pretty sure. You know how, when flipping channels, you can hear an argument at its height cut off in mid-sentence, to be replaced by the voice of a consoling friend, which cuts to a scene of heart-rending drama? That's what my mother's conversation is like. As the advertisement in the Prague subway stations said, "Your cat will love... the feeling of... really smooth legs."

Sometimes something very real comes out, like a moment of crying in frustration that she doesn't want any more cancer. Thirty seconds later, she's talking cheerfully about how she's going to remodel the house. It is very strange and not entirely satisfying to try to express empathy and sympathy for something that only "exists" for 30 seconds.

She was rather angry this weekend. For example, I said good morning to her. She replied, "What is up with you!?" I asked, "What is up with me, Mom?" She said, "You're always all dressed up!" Um, sorry? I do get her clothes when she asks for them, but she eschews most clothing. Or maybe that was sooo five minutes ago.

According to the Hospice booklet, the time one to two weeks before death may be characterized by disorientation and confusion, talking to others not in the room, and use of symbolic language (e.g. Mom was sure we had to go to the airport). Check, check, and check. She is, however, still eating and drinking somewhat.

From the days to hours before death list we have sleeping most of the time and restlessness (during waking times, obviously). It's not on the list, but Mom is clearly hallucinating fairly much. There is no dog, no nephew, no box, no red nut. This last seems likely to be based on my application of red fingernail polish.

I am very tired. My sister was here this weekend, which allowed me to sleep considerably more than otherwise, and I'm still tired. We do have a new joke together. One of us says, "Is it Thursday?" A minute later the other one says, "It's Sunday, right?" Five minutes later: "Is it Wednesday?" Keeping up with reality is a minute-by-minute effort around here.

Hospice thinks that we may be looking at about a week here. Knowing Mom, I wonder if she will hang on a bit longer. I am confident in going on record as saying that I hope that she will receive a complete and miraculous healing, period. But as for the other possibilities... I'm having trouble saying what I hope for.

I most wish for her to quit being upset by her confusion. Last night I was talking with her, sitting on her bed. Then I went into the kitchen to clean up. Less than five minutes later, I walked back into the room, and Mom cried out incredulously, "It's you!!!!!" Turns out, she thought I was dead! She kept asking my sister, "How long had you known she was dead?"

This just in: Mom is talking on the phone. She has announced to her friend that it is 1:10 a.m. This may be because her beloved watch keeps lousy time. She asks me what time it is. I tell her it's 8:15 at night. She says to her friend, "My daughter says it's... one term, one shot locus. And I don't have to make any terms about my breasts!"

Bad Images

Today, as I fixed the bandage on Mom's tailbone bedsore, Mom informed me, "You know, based on what I was taught, I truly believed that anal sex would tear me asunder. So you can see how I had it coming from both ends. But at least you and your sister weren't in the room, so you don't have that visual image." Uh, gee, thanks, Mom, no, I didn't used to have that visual image.

Now Mom is telling me about an argument we didn't have this morning, which has upset her greatly. She tells me that I refused to let her leave the house on a trip she had planned with her social worker, even though her social worker is trained to transport patients. I apparently also insisted that she could only walk a couple of steps when she had certainly walked all the way to the door with a cane and gone to the downstairs bathroom all by herself.

This argument that my mother had continued into something about my sister drinking too much Passover wine, and how frustrating it was that I would not validate her perceptions, and why am I asking her questions instead of answering her questions? (She didn't state any question out loud.) How do you respond sensitively to someone who has invented an argument with you and accuses you of evasion when you try to validate her feelings? And if I tell her she's completely incorrect, she will feel like I am denying her reality again.

Oh, and she is refusing a Haldol. Never thought I'd be trying to push drugs on my own mother.

Strategies

I have been told that the blog was being "evil" about allowing comments. I think I have fixed this, but please let me know if it is still difficult.

I went on an outing today for the first time since Wednesday. It was definitely time. I did two errands and had coffee with my sister who lives in the next state. Hooray!

On the home front, Mom is having trouble remembering who people are (both their names and their relationship to her). The spin function on the washing machine broke, and I can't get the sticky vomit from last Thursday off the sheets. Or do other wash. Where is the manual for being an adult?

I have to contact two funeral homes tomorrow, and wait for a time when I am relaxed and Mom is doing her best impression of cogent to discuss these details. She is considering being buried rather than cremated, I think mostly because it makes a difference to me. She also desperately wanted to be buried with her family when she "first" learned that they had died. But when she was more rational, she was back to just considering.

Mom informed me today that she wanted the TV moved lower. I started discussing this with her (as it appears just high enough that she can see it over her knees), and it came to light that she needed the TV to be lower because the people from Comcast called and told her that she had to be careful not to let the two sides of the wound on her tailbone (bedsore) get pulled apart or they wouldn't heal. I am glad that I sought to understand her true objective, for as you can imagine, I had some alternate strategies to suggest.