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.

Why I Should Be Paid the Big Bucks

Mom awoke from her afternoon nap a bit disoriented today. She does often forget various facts about the past and present (good news: my sister is no longer in jail), but most often she recognizes the information when I tell it to her. Today, however, I was surprised to hear that she wanted to get dressed in a blouse and skirt. So I fetched her a selection of blouses and skirts, and she chose a set. Then she told me that she had to get dressed because her parents are coming.

I said, "They're not coming this evening, Mom. We aren't having any visitors tonight."

"Are they coming tomorrow?"

I tried to get out of telling her this, but she is not quite confused enough that I am sure that I will not be caught in a lie. So I took her hand and told her the news: both of her parents are dead.

She didn't remember this at all, and cried while asking me a lot of questions about how they died, where they were buried, and whether there was a space for her between them because she didn't want to be all alone on the end of the plot.

I just wish that her confusion could be less upsetting. In a way, I will be so grateful when this is over for her.

Then she perked up for a while, even joking with me, giving a little attitude. We ate some dinner, and then she picked up the phone and asked for her brother's number. I said that I didn't think Uncle Ivan had a phone. She looked up at me in horror, and said, "He's dead, isn't he?"

This is why I (should) get paid the big bucks.

Kitchen Cupboards

I have beliefs about kitchen cupboards. I stand by these beliefs. One of my tenets is that glasses should all be placed on the same shelf or shelves. All tea should be grouped together in the same cupboard. Dishes should be stacked with like dishes. Food items are not placed on top of the dishes from which we eat. And it is not necessary to save onion skins, nor every plastic lid in the known world.

I attacked my mother's kitchen cupboards today, which were apparently organized by infidels. My head is bloody but unbowed.

Go to Sleep!

Mom fell out of bed this morning. And she didn't call for me when she fell. I heard a thunk and went to find out what it was. She had forgotten that her legs couldn't hold her, and also forgotten that I was in the house.

Tonight I put up the bed rails and taped a big red note to them that reads, "SARA IS UPSTAIRS. CALL HER IF YOU NEED ANYTHING."

Mom is not asleep yet, which means I am not asleep yet. She has stopped calling for me every few minutes, possibly because she has already forgotten that I am here. But I hear small thuds and rustles, and I have to go check in good conscience, because it may be her scooting down to the bottom of the bed to go on walkabout. Or lumpabout, as the case may be.

I want her to fall asleep because I must wake up in 7 hours to give her the morning meds. I need 8.5 or 9 hours of sleep. You see my dilemma. I thought that I could get out of staying up until midnight by shifting the meds back an hour, but she seems to get a second wind around 10. So I stay up, then try to sleep in after her morning meds. Sadly, the chirpy physical therapist likes to call before 9. One day no less than five people called or showed up unexpectedly between 8 and 10. Have mercy, people! I'm not on a shift here!

Head Cleaning (Without Shock Therapy)

Mom woke up from a nap in tears today, asking me to make sure they didn't give her the shock treatment. She thought that they had given her electroshock "therapy" yesterday. I promised her that I would never, ever let anyone give her shock treatment. I don't know whether she ever had shock "therapy." If so, it would have been before I was born.

Mom worries frequently, almost always about things that are not happening. My sister is not in prison, Gary's mother didn't just die, and we are not late for the party that happened seven years ago. She wants reassurance that, if it's warm enough, we will leave the back side of the square open. (?) She is so sincerely concerned about each and every "problem." Even if she only remembers most of them for a few minutes, she has a new worry to replace each one she forgets.

And it's all for nothing. She is worrying about things that are not real. It makes me reflect upon my own "realistic" worries. (Such as using quotation marks on too many words in this post.) But really: I'm not currently out of money for my immediate needs. I am already past the worst mistakes I've made so far, and have more wisdom to avoid them in the future. I have no evidence that I will not succeed in my chosen career. I am still resilient, with no signs that I am any less strong than ever. I even suspect that no one cares about my "wrinkles."

When the rational coping mechanisms fail, one sees what is hanging out under the surface. It looks big. How do we even function, given the magnitude of our worries and bad feelings?

I am seriously considering undertaking a new mission: eradication of any ways that I undermine or second-guess my own happiness. I see that this will mean taking some risks, like no longer guarding against being disappointed and being criticized and being ignored. Because guarding against these fears is anticipating them. And expecting bad things to happen undermines my happiness.

Would you all do me a favor? Figure out what you're on guard against in your own head. And then, would you please consider staring it down, and telling it that it is not real and should get lost? Then figure out what it takes for you to really believe that. I don't want to end up full of fears waiting to jump on me. And I don't want you to either. We all have lives to live, thank G-d.

Love You Still

Dear Mom,

You are being so incredibly brave in the face of this cancer and your prognosis. You have actually let other people take care of you, which you have never trusted us to do before. More and more, you are expressing your love through your smiles and words, not hiding it under the sarcasm of fear (that's right, we're yankees). You tell me every day how much you appreciate all that I am doing for you, and today you even told me that having me here makes you feel safe. I admire all the growing you are doing, even in this late stage. Your confidence in my care of you touches me so deeply, and I am gratified to have this special time with you.

Now... will you please stop arguing with me about your meds?! I know that you do not remember the 47 or so conversations that we have had about your medication schedule in the last two days. I know that you do not remember that this schedule has been working well for the last week. You don't even remember taking an as-needed dose of pain meds an hour ago. But please believe me when I assure you that you do not need to take your sleeping medications two hours early for them to work. You sleep frequently all day, and have slept soundly through the last seven nights at least!

We were okay the four times today that I explained to you that my sister is not in prison. (Sister texted me, "Talk to the doc about the dosage of Haldol." It's an anti-psychotic. I texted back, "What do you know? You're in prison.")

And the conversation about the oxygen tank in the corner was adorable. You told us that if you turn it a quarter turn every day, it will grow straight up!

But for some reason, even though you explained to me in detail how your meds work, and why you need to take the sleeping meds right now, I will not do anything other than what the doctor ordered. You can call me unreasonable. Or call me whatever you like... I just don't know whether you will remember it in five minutes.

Love you still,

Your Daughter

Cancel Delivery

Today we had a walker, a commode, a wheelchair, an oxygen concentrator, a backup oxygen tank, a portable oxygen tank, a backup portable oxygen tank, and a hospital bed delivered. We looked around the wreckage of the living room, and called to cancel delivery of the Mother. Seriously. We arranged for her to stay in Hospice another night because we thought it would be too disturbing for her to come home and see her house looking like it was turned inside out.

My sister and I are trying hard to make her living room look like it did before, only with a hospital bed, a commode, a wheelchair, a walker, and 17 types of oxygen.

I am primarily handling the arrangement of physical objects, while my glorious sister is tackling years' worth of old mail and papers. Remind me, when I get back to my house, to burn immediately any papers that are not worth over a thousand bucks. It ain't worth it.

For the edification of the interested (hi White Deer Park crew!), I did bravely get the scoop on the crush situation through the simple yet elegant technique of just plain asking what was up. Turns out that I had not been misreading signals, I had been getting contradictory signals: he is interested in getting to know me better, and he is hesitant to date for a couple of legitimate reasons (not the least of which is the probable emotional turbulence of a person who is caring for her dying mother. Er, yes).

So now we are planning to go hiking and start becoming friends in person, not just on Facebook. Without "dating," per se. I am well pleased with this situation. Friends is like flour: a basic ingredient in many different kinds of good things.

Moving Forward

March 20, 2012: The way forward… is looking thick. Mom is due to come home tomorrow. My back is on the fritz, due mainly, I think, to terror of being left alone to deal with Mom. I will be controlling her meds, which she says she agrees to, but which has been an enormous power issue in the past. I will be emptying the commode, helping her every time she gets up or down (which she is now just about able to do, with a walker), dealing with her episodes of breakthrough pain, cooking and running the household, and listening to her shifting stories weave in and out of reality all day long. This last is the most horrifying prospect.

As a mature, rational, capable adult, I have been preparing for all this by 1. Not eating enough, and 2. Developing a huge crush. On the positive side, I am losing what winter weight I had gained, and I wrote an essay I had been meaning to write for some months (as I have been exchanging essays and Torah ideas with the feller I’ve got the crush on).

On the negative side, we have inability to stop obsessing about any and all things, the magnification of feeling and the diminishment of logic that come of eating too little, and a feeling like I’m about to be swamped and drained simultaneously. Which I have felt before, here in the lovely state of New Hampshire where I grew up.

The fact that I grew up here allows simple things like a hill of moss in a forest, a spring breeze, or the expression on another New Hampshirite’s face to bring on waves of feeling and memory that I haven’t noticed in years. Some rediscovered memories, like playing in the soft sunlight in a white pine wood, are welcome. But then there are the others.

I didn’t really enjoy revisiting the feeling of being alone amidst vast, potentially life-threatening needs. This goes back to my mother’s illness and my father’s depression when I was a teenager, and there is nothing like a long look at the spare, frozen fields and marshes of New Hampshire to bring back that alone-in-the-world, no-one-understands-or-cares sensation. (Out of all my old baggage, I realized today, this feeling is probably contributing the most to my crush, as the feller in question is doing things like keeping in touch on Facebook almost every day, praying for my Mom, writing back and forth about things that matter to me, sending me songs he thinks I might like, praising my ideas – all those things that contradict loneliness and feeling invisible. My only concern here is that he is not at all eager to get together in person, which makes me think that he is not interested in a real-world friendship.)

Then there are memories of my parents’ divorce, shortly preceding the illness and depression era. Oh yeah, that felt like the people I cared about most in the world tearing each other apart. I am so glad that I have been able to get more in touch with that memory! What joy! (I had another fun experience that year, which was an enthusiastic correspondence with a young man in another state who, after six months of writing letters that said things like, “I miss you so much! Can’t wait to see you,” got himself a girlfriend and quit writing to me. Unless I quit writing to him first. It was more or less immediate. I would like it to go on record that I did not know until recently that he and my current crush share a first initial and a last name. How weird is that? You can see how the less rational side of my mind comes to be freaking out over the potential for being disappointed here.)

Right now I’ve got a rickety bridge of stoicism over a raging emotional river. I would rather not have to swim. But I know I will.

Mom's Questions

March 18, 2012: Mom is experiencing delirium. She has many questions: “I know you told me, but where are you sleeping again? It’s Sunday, right? The new and continuing racism… what do upper-middle class Blacks think of it?”

Sticking Together

March 15, 2012: What was I saying? Yes, I will move up here now! Here I am.

Mom is in the Hospice House now for pain control. I thought that the moment I arrived, she would be delivered unto me, together with a confusing array of medications which might or might not require me to wake up twice each night to help her take them. So I am getting an easier transition than I thought. Which is good, since the ol’ tum went out of commission promptly upon arrival, necessitating a liquid diet for a couple days and easy proximity to the WC.

I have spent several hours with my mother each day, but today was the longest so far. We hung out for six hours. When Mom is lucid, she is just lucid enough to be dangerous – like, she could potentially try to spend money online or call her financial advisor. She also tried to take a walk without help once, which worked out really poorly as the catheter was tied to the bed frame.

A conversation with Mom can cover a lot of ground these days. She asked me how I think people with a strong awareness of tactile sensation perceive information. She asks me about my father’s death, for which I was present and she was not. I see that she wants to know about how my sister and I will handle her death – both for her sake and for ours. But another day she asked me whether Dad was living in Cambridge, and I had to tell her that no, Dad died. I think that she remembered once I said it.

Then she is asking me whether we have a dog, and who is taking care of it while she is in the hospital. (We don’t have a dog.) And then she said, “Poor parakeet.”

“What parakeet, Mom?”

“The one the mouse is going to catch.”

What do I say to that? So I said, “Poor parakeet!”

She also tells me that she could really improve this unit’s efficiency and operations, if she could only remember what she just thought. At least the fan cord is no longer transmitting data. And she hasn’t mentioned since the weekend how they probably have all of her numbers now because they were spying on her as she was flipping through her address book. Nor has the moose come back to drool on her shoulder. I think the Haldol put those last three away. Good call, Hospice.

My experience with Hospice is matching what anyone who has dealt with Hospice knows: They are all wonderful, caring, sensitive people who have enough time to deal with you and pay attention to your individual situation. Today, a social worker and two doctors sat me down to talk about bringing Mom home, and what that will entail. Someone with her 24/7, managing meds, lots of physical assistance, and trying to help her with her pain and fear.

I’m thankful that I can be here with her, and she expresses her gratefulness to me every single day (except for one day last week when she was hateful, but hey, she is dying, she’s entitled to a hateful day or two). And it is wonderful that Hospice is available, and that they are the caring, whole-person oriented, skillful professionals that they are. And I am getting a lot of support from friends and family and coworkers to be here. But what sank in for me, at the meeting today, was that all of that support and all of the craziness of the last 20 years is really just going to come down to Mom dying. This is a far cry from the visions I had as a kid of our family accomplishing important things and enjoying life together. I can’t say any life is a waste, but it is hard to reconcile the family I thought I once had to “life sucks and then you die.” That was not my plan for us. But the only part of my plan that I can carry out at this time is that our family sticks together. Even if it didn’t always, it does now.

The Pills, The Pills

February 10, 2012: If I may be permitted a note: In the event that one finds oneself near unto being overcome with pain, I suggest that it behooves one to actually take all of the medications that one is actually being prescribed, prior to getting one’s daughter to call the doctor to insist that one need new drugs.

I get that the steroids made her hallucinate cats, and that that was a bad thing. Not that the cats themselves were so bad. It’s just that she was afraid that the bears would see the cats nibbling at her fingertips looking for cat treats, and then the bears would sneak up and chomp her hand off. Anyone can see that this is a serious problem.

So no steroids. But of the drugs that actually have worked in the past, drugs which she is currently being prescribed – how ‘bout we take those drugs and see whether they help? Kinda crazy, I know. And, um, just wondering: why didn’t her doctor friend who stayed over at the house last night catch any of this? Or if she did cause Mom to take the prescribed drugs yesterday, how is it that she didn’t mention to me when I spoke to her that Mom is having trouble remembering what she can take? This poor woman has twenty or thirty pill to take every day, she is in some of the worst pain of her life, and no one has noticed that it’s difficult for her to keep clear records? I’m glad Mom kept as much of a record as she did, because I was able to tell the nurse at Hospice what Mom had taken in the last six hours. The nurse promptly told me that Mom had not taken her every-four-hours-as-needed-for-pain drug. Gosh, that was ever so helpful once we got it in her! Who knew?

I think I will get a big 24 hour analog clock. Then I will attach pill holders around the circumference, one for each hour. Then I will put in each pill box the pills to be taken at that hour. Maybe we will rig it like a cuckoo clock so that a box pops open on the hour with a gay tune. And there can be a little note in the lid every four hours: only take oxycodone as needed for pain. Seriously, the doctor who slept over last night didn’t catch that? And what about nights when no one is here (most of them)? How much unnecessary pain is my mother enduring? I am going to have to move up here soon.

Mom's World

December 19, 2011: It may be fortunate that I do not have a family right now, because I am free to be financially irresponsible, working part time, deferring school loans, and flying up to be with Mom for a week every month. She has a very busy social calendar now, such as: Sunday, visits from Nausea and Retching; Monday she entertains Ginger Ale; Tuesday, grocery delivery, my arrival, and a scolding from Dr. W for losing weight (“Not eating enough!”). Wednesday brings Overwhelm and Fatigue, which cancels her appointment with Dr. C.; Thursday we are joined by Hip Pain and do not tour the Hospice House. This is why I am visiting only two weeks after my last visit: she wanted me to help her dodge a call from Complete Meltdown.

One of the great lessons that I am learning from being with Mom is that I do not have to believe what she believes, or to feel the way she feels. I, for instance, do not believe that the neighbors hate her. I do not believe that Dr. B. was challenging her when he commented that she used high levels of pain medications. I don’t even think that her acquaintance is being excessively friendly when she takes more than one e-mail to arrange a drop-off of kosher deli goodies all the way from Rhode Island. I am very happy that I don’t have to see things the way Mom does.

During my first visit after the diagnosis, Mom said tearfully that she was so very happy that I have finally matured to the point that I am willing to work on our relationship. At first this made me angry. But in a sense, I now think that she was right. It takes a lot of maturity to guide someone else, to listen to others respectfully while disagreeing, to know when to insist and when to give in, and to do it all in a way that helps the other person live a better life. I have done a lot of maturing to get to the point where I can do this for her. And I feel great purpose in doing so.