Mom's death:  Entries from my journal


The following are bits of writing I did toward the end of my mom's life after 18 months of dying with cancer.  Some of this is journaling, and the rest are excepts from emails I sent to my friend Kristin and a few other friends.  I'm putting this out there for anyone who can use this, whether they have a family member in a similar situation or whatever.  If it helps you make sense of it all, great.



To set the context, Mom was diagnosed with an extremely rare form of melanoma.  The tumor was, ironically, located somewhere the sun didn't shine (i.e., near her female regions; she was too modest to give me specifics).  The tumor was removed, but the cancer returned, and it was fast-growing, even with radiation.  Surprisingly, she had no symptoms throughout the entire time until the last three months before she died.  She started growing very weak.  A blood transfusion revived and energized her for a spell, but a second transfusion didn't help when she experienced the same symptoms again later.

I live out of state from my parents.  My mom (age 77) lived with my dad (78) and, by this time, my aunt (mom's older sister; 87) had moved in with them a year or so (I forget) earlier after having a bad fall that resulted in a broken shoulder.  My aunt recovered the full use of her arm, but she really couldn't live on her own anymore, and so my folks were happy to take her in.  However, neither my aunt or dad were equipped to deal with Mom once she started getting weaker, so that was part of what prompted me to head down there.  This journal picks up when we arrived at my folks' place as Mom was starting to seriously decline both physically and mentally.

My editorial comments are in [brackets] to help give context, explain who new "characters" are, etc.


2/14/09

Kristin,

I wish we had gotten here sooner, but Dani [my partner] didn't want us arriving at 2am.  My runner-up option was to leave in the middle of the night last night and arrive first thing in the morning, but she didn't want either of us to drive without a full night of sleep.  I don't think she realizes how stressed I am.  She kept on my case last night about fixing the door (which is now fixed, btw) when I really, really did not want to be pushed for anything after a week and a half of fighting with my computer [rebuilding it after it was hijacked by malware] and the worsening situation here at home.

My mom's slipping fast.  She's on a pain med that pretty much knocks her out so that she's barely there.  She couldn't identify my dad's middle name yesterday.  She got that right today, but then gave my dad's middle name again for mine.  She recognized Dani and I earlier, but then after we left her room and my dad checked on her less than an hour later she asked who "those people" were? 

She sort of comes and goes, sleeping 18+ hours a day in the meantime.  One of the nurses Dani spoke to on the phone a couple days ago said she (my mom) had maybe three weeks, but no one can really say with any certainty.  Dani does this for a living [i.e., works in hospice], and they never know how long someone will last in this business.  We threw this trip together pretty fast because we didn't know how coherent my mom would be a week from now.  It's worse than I expected this soon; I just talked to her on the phone a few days ago and she was clear as she ever was.  We'll see how she is tomorrow since she only just started this medication.  Maybe she'll adjust?  At the very least it completely takes care of the pain.

Last night (the one before we got here), my mom got confused in the middle of the night, tried to get out of her bed and/or into Dad's bed (she has a hospital bed next to his), and slipped between the two beds.  My dad (age 78 and 10 months) and my aunt (age 87 and change) understandably couldn't get her up on their own, so they called the fire department.  It was 3am.  My mom had no recollection of this today.  The hospice nurse said my dad did the right thing.  She often sees cases where family members just leave the patient on the floor until the next morning until the hospice crew checks in.  Nice.

My dad's holding together a lot better than I expected though, both emotionally and physically.  This is his first day off the crutch from his knee being messed-up.  He doesn't know what caused it to start hurting.  Unrelated: He's getting an island for the kitchen to help get things out of his way and so he can move plates and food to and from the table without carrying them (i.e., the island is on wheels).  I'm getting that tomorrow and will build it for him.

I haven't spoken to Katherine yet [my ex-girlfriend, Best Woman at my wedding; she lives in the same town as my folks].  I have this unintentional little tradition running of not telling her when I'll be in town until the last possible moment.  Either she doesn't check her MySpace for several days or I'll throw something together in a hurry, but somehow I'll end up in town and leave her with the scheduling nightmare of trying to find a sitter at the last minute if we want to go out.  The first time I saw her in 10+ years I finally called her on the last day of my trip because she hadn't checked her email for more than a week (her kids broke the computer's power supply connection, so the laptop was dead).  She missed out on New Years Eve with us because she already made plans not sure if we were going to come down.  One time I came to Louisiana the same weekend she went to Texas to visit cousins.  What are the odds?  This time I come down to visit my mom who's in the final stages of cancer.  I'm not sure I want to tell her that's why.  Did I mention Katherine just got diagnosed with cancer?  Happy Valentine's Day!

I asked Dani on the way here to promise me that she wouldn't ever, under any circumstances, bring up the fact that I didn't do anything special for her on Valentine's Day this year.  Did I have something planned?  Yes.  Not imaginative, not expensive, but I thought she might enjoy it.  Maybe some other time...  We're too busy making memories of a different kind over here at the moment.  This tentatively-titled chapter of my autobiography: "2009: Most surreal year ever."  [This was just three months after Dani was pregnant for the first time.]

-Alex.


2/15/09

Kristin,

[Deleted a lot of details about how the dogs were doing.]

>When my grandmother started taking the heavy duty pain meds before and after
her back surgery, she'd get foggy like that. Or act half-drunk, talking
about things and stopping sentences part-way through. She wasn't herself.
My aunt was on something at one point that made her almost psychotically crazy for 24 hours.  She was too embarrassed by it to even talk about the episode after the fact.  In my mom's case things come and go from moment to moment, which isn't something you see with medication; that's almost always a generalized effect lasting the duration of the dosage.  Dani just checked in with the nurses in her unit and related the symptoms, and knowing that this originated as a melanoma (vaginally; a very rare type both in placement and histologically), it's almost certain that this has spread to her brain, which explains a lot of what we're seeing.  It spreads there in 60-80% of cases, especially if it has spread to the lungs and/or lymph nodes.  In her case it's all of the above, so, yeah.  [The 60-80% figure was based on a reference in an article I pulled up on PubMed.  I was curious about the rapid mental deterioration.  By this time Mom had cancer in her lungs and lymph nodes as well as in her bones.  Thankfully, she wasn't in any significant amount of physical pain.]

Last night was a series of episodes of her crying out for one thing or another, starting around 12:30am with what was likely a panic attack.  She couldn't breathe and was having chest pains.  She was convinced that she was dying, and of course, she is.  It's hard to find a rational center in which to talk her down from something like that.  She's on at least six different medications (none for the cancer specifically), including Xanax, although that is neither fast-acting nor specifically for anxiety.

I need to be on Cymbalta because this is all weighing down on me.  [I had previously taken Cymbalta for what my doctor described as "mini panic attacks" which were just chronic stress symptoms from work.  Those symptoms returned after the first night we were at my folks' place.]  I don't know how my dad's surviving this.  After the 12:30 episode, my mom woke up again around 4:30 and again around 8 calling out for things.  My dad just sleeps in his clothes so he can get up and get whatever she needs, which is really nothing outside of water, milk, medication, or reassurance.  I took to sleeping in my clothes as well.  It isn't difficult to understand how PTSD is acquired when you stay constantly on alert.  He's been doing this for more than a week.  Last night was typical for her (and him), he told me this morning.

>You're lucky you have someone close in the field to help at least understand what's going on.
>From the few friends or coworkers that have gone through similar, it does seem to be something you can't quite pin down. Or it goes incredibly quick, which may be a relief.
Dani's really good with being calm and rational through all of this.  I knew I'd be affected, but I didn't know it was going to be this bad when I got here.  When we arrived I assumed she'd be bed-ridden (which she mostly is) and tired (since that's the direction she's been heading since around Thanksgiving), but she's largely out of it now except for those few moments when she's both aware and neither heavily-medicated nor in pain.

>That's the main reason my mother's living with her parents. My grandfather is wheelchair-bound, and he falls frequently. Even at the care facility they lived at before the apartment they live in now, the staff would just call 911. They started to wonder why they were paying so much for what they could basically do on their own. Between my mother and my grandmother, they can usually get him up when he falls.
>But I don't understand people that would just leave them.
I think it's less neglect than just concern that they're being a burden to people who are taking care of them, even though they're being paid for that assistance.

>Ah, good. Maybe [building an island for the kitchen will] take his mind off things for a few hours?
I hope so.  He's in relatively good spirits and seemingly unaffected by things.

>Jeez. I think you may have mentioned [Katherine's cancer] - she seems young, but then I worked with a girl in her 20s and two others in their 40s that both had cancer. I'm planning on having the test done once I get to the stage of going to a hematologist that will tell me if I have the gene that usually causes PCV to morph into leukemia. At least I'll have some forewarning. Cancer's not something to fuck around with. (Says the one still smoking.)
When Katherine told me the news, I told her to get treated right away.  Part of what led my mom here is that the doctors didn't move quickly enough.  Her initial tumor was so rare (one of fewer than 50 cases reported of that variety) that she was passed around from one specialist to the next.  When they finally talked about surgery, they were scheduling it for three months down the line in spite of the fact she could tell it was growing rapidly.  She had them move up the surgery, but it was still a month's wait.  No one would do this with a heart attack or a bacterial infection.  Why would they wait on something that would in all likelihood spread and kill her?  This is doubly true in the case of an unknown cancer.  Assume the worst; act accordingly.

>I was thinking today that at least she knows there's going to be a grandbaby, even if she won't be around to meet them. And the Valentine's stuff is redeemable any day of the year.
When we first got there, the first thing she asked was for Dani to come close so she could feel her grandbaby.  It wasn't indicative of our interactions with her since then where she doesn't recognize who's in the room a lot of the time.  She has asked a number of times whose house she's in.  She's only lived here a little over ten years.  The bed she's in and the furniture she's surrounded by they've had for close to 40.

>Y'all have enough to worry about. Don't worry about the dogs, or however long it takes y'all to get home. We're all fine and will be for as long as it takes. This isn't something to rush or feel pressured about with anything other than what you have at hand. If there's anything else I can do, just holler.
Thanks.  We don't really know what all we can do here though.  I thought we'd be taking over for my dad while his knee was messed up, but he's up and about now.  We're trying to find other ways to help around here like doing the dishes and such.

-Alex.

Feb 15th

Her decline has been too fast to be anything but due to metastasis to the brain, and all the research I've found says that's an almost inevitable outcome to Stage 4 in a case like hers.  Three days ago she was able to get up and move around on her own.  She was clear-headed and responsive with only minor and short-lived lapses.  That had all changed by the time we arrived and even since then.

She slept pretty much all day today.  We managed to get her up out of her bed and out into the living room for much of the afternoon, hoping a change of scenery might revive her, but she just dozed off and remained out of it almost the entire time.  We picked up some Wendy's for everyone including a burger for her, although I don't think she had more than a small bite of it.  She subsists off of a cookie every now and then and mostly just milk supplemented with Carnation instant breakfast (she found Ensure too sweet to take).  I thought earlier about getting her Taco Bell, something she always used to crave, then I realized we were past that point and I'll probably never have the chance to do that for her again.

My dad and I went around to several Walmarts trying to get the kitchen island he was looking for before finally getting one in just over the border in Mississippi.  We did a lot of grocery shopping too.  I ended up taking a nap for a couple hours after we got back.  Dani and I put the island together this evening and I collected the trash around the house and put it out on the curb to try and keep my dad off his feet after all the walking he did today.

I called Katherine around 7pm finally.  We talked about getting together and I told her about my mom.  She (Kat) is having her surgery on March 3rd.  She's in good spirits though, so I hated loading her down with the news, but it was obvious from the way I sounded on the phone that something was wrong, and I wanted to let her know what was going on so as not to have an awkward guessing game.  I invited her up for [my friend and groomsmaid] Katie's birthday and Rocky Horror on Feb 28.  She's considering it, but of course that's hard to arrange with her kids and all.  Still, it's kind of her last opportunity for fun before she's out of commission for the 6 weeks of recovery following the surgery.

Around maybe 9pm I noticed my mom was stirring a bit so I went in and got her talking for a little while.  She was drifting in and out of it and couldn't recall my name.  My dad asked her if she knew who I was.  She thought for a second and said "Murgatroid," a goofy nickname she came up with when I was a kid and probably hasn't called me in the last 25 years.  My dad asked her if that was the same as "Charlie Brown," something he's called me all my life through to the present, and she said no; that was someone back in Folsom (where we lived when I was a teenager), then called him a "know-it-all."  He thinks she was referring to me, but she was commenting on the fact that he was suggesting she didn't know what she was talking about.  She still has a sense of humor.

I brought Dani in to talk with her for a while as well.  She seemed to remember that Dani was pregnant, but she was still slipping in and out of things.  Her hearing's going as well, worse than just her originally poor hearing (she's had tinitis for years).  She seemed like she was getting ready to go to sleep, so I told her I'd leave her be, but my aunt was coming in there as well, so she stopped in and we talked to her for a bit more.  She was kind of slipping out though, so eventually it was just her listening to me and Aunt Mildred talking when she wasn't sleeping.  She (mom) laughed a bit when I told her about Gertie being afraid of the camera because she associated the flash with the lightning during storms that she's also afraid of.  Gertie will crawl inside of bookshelves, etc. if thunder persists.

I set up an intercom system as a monitor.  Originally it was something I bought them for xmas a couple years ago when Aunt Mildred first moved in there and was less mobile (i.e., she had broken her shoulder and couldn't get out of her chair on her own) and needed to call them to her room for something.  They didn't use it for very long, but no one in the house has good hearing.  Dani and I can hear my mom calling from the bedroom when we're in the kitchen.  My dad can't.  My aunt can't even from her room down the hall.  I have the intercom in my mom's room in "locked" mode so it transmits all the time like a baby monitor to the other two units elsewhere in the house (one by me in the front office; the other in the living room).  I listened in as my dad gave her another pain pill before he went to bed.  She's done well today; her last one was at 8am.  The hope is that this one would preemptively address anything that comes up during the night so she won't be awakened with intense pains and panicked like she was last night.  She's snoring quietly now.

It's only 11pm as I write this, but I'm tired and ready for bed (again) right now.  [I normally go to bed well after midnight, sometimes more like 2am.]  I feel sore all over, much like the early flu symptoms, only I've felt like this for three days now.  I started Cymbalta today.  The first day's side effects are bad on top of everything else, but I'm hoping the medication will keep me from feeling worse as things decline.


Feb 16th

Mom fell again in the middle of the night (4:30am) trying to get out of bed to go to the bathroom.  This happened the night before we arrived (which is one more reason why we should have left earlier than we did), only the fire department had to be called that time.  This was much easier this time around as instead of falling between her hospital bed and Dad's bed, she fell toward the foot of hers.  She landed on stacks of pillows and blankets that were folded there in order to facilitate quick and easy changes if she should wet the linens (she's been wearing Depends as a protection; sometimes she needs those, sometimes she manages to get to the portable toilet they have set up right there in the room).  As far as we can tell she didn't twist anything or hit her head.  And, as usual, she had no memory of this in the morning.

At the moment she hasn't urinated for >12 hours.  We don't know what to make of this.  It may be that she'll need a catheter, although we worry she's demented enough that she might pull it out.  End of the day update: My dad said she did finally go sometime this evening while we were out.

Lots of visitors today.  We met the nursing aide Pam first.  She bathed Mom and such.  I didn't stick around for obvious reasons. 

After her, a priest from St. Luke's (their former church) came over and gave her last rites (Doesn't have to be given at the moment of death, despite the impression you get from the movies).  My mom wasn't too happy about that when my dad told her why the priest was coming, but this is something Catholics can do that's "valid" for 30 days.  My dad explained to her that he had them himself a few years ago when he fell after blacking out due to low blood pressure.  In spite of Mom's annoyance ("You're crazy," she told my dad a couple times), she was very congenial with the priest.  She perked up quite a bit and was very aware and responsive while he was here, although there were a lot of "glitches" such as telling him he looked familiar.  "Must be the shirt," she said.  He was wearing the standard priest garb.  She hadn't met him before as far as I know.

A little later a woman named Susan came over and gave my parents communion.  She's been coming here for several years now since my parents gradually slipped away from physically going to church.  (They watch enough of the Catholic tv station to more than make up for it.  Right up until she was too sick to do anything my mom read religious books to the exclusion of all else other than women's housekeeping magazines and correspondence from friends.)

I took what seemed like a long nap to catch up from the interruptions during the night, but I woke up when their nurse Sheena came.  She checked Mom out for any damage from the fall, her vitals, etc.  Dani talked to her about adjusting certain meds to better fit her needs.  I talked to her about getting some sort of alarm so that we'd know immediately if Mom was getting out of bed.  She said she'd follow up on these things.

That night we went out to Radio Shack (and Walmart too for the second time in as many days for other things) and bought a door/window alarm that we rigged up as a bed monitor (with some assistance from adhesive velcro and electrical tape).  The velcro and tape hold the unit itself to the headboard.  I also have electrical tape covering the speaker so that it isn't deafeningly loud.  The small "trigger" portion of the unit is held in place by another couple pieces of velcro and attached via a string to a safety pin on the back of my mom's nightgown.  If she sits up or slides down toward the foot of the bed, she'll run out of slack and pull the "trigger" away from the main unit, activating the alarm.

Once we had that set up, we headed off to see Katherine and [her husband] Alec.  We stayed over there talking to them until a little after 2am, even though we said we'd leave much earlier, but that never happens because we all love to talk.  The plan is to head over to [local bar] Billy's Lounge tomorrow night for karaoke.  Katherine is trying to line up a sitter and plans to come regardless even if that means grounding Alec with the kids for the night.  They both know I could stand the distraction; Alec said as much.

It's about 4am right now.  I've been listening to the bedroom monitor and my mom has been pretty quiet for most of the time since I got in, but a short while ago she became agitated and began a series of incoherent and contradictory ramblings, "You're going to take my dogs...  Please take my dog...  Get it off my shoulders...  Help me, help me, help me...  He's going to kill me," all almost like she was having a nightmare or a night terror.  This continued even though my dad was able to question her and she would respond, just from her alternate reality.  I went in and talked her down.  She slipped back into unconsciousness after a while although she woke again a short while later and rambled some more briefly that made even less sense. 

She was sleeping (or not) in the bed with my dad instead of in her hospital bed.  Apparently it was enough of a struggle to get her to the toilet and just too much to get her back into her bed.  I offered repeatedly to stay with her and for him to get some sleep on the couch in the living room, but he didn't want to do that.  It's past 4:30 now and she's mumbled some but is probably drifting off.  Dad gave her a pain pill since she was complaining of pain in her leg and side, so that should help sedate her to some extent.

-Alex.



2/17/09

Kristin,

[Deleted a lot of details about how the dogs were doing.]

>Yikes. I've never even heard of that type of melanoma. [Her dad] had some sort
of odd melanoma-type cancers removed a few years ago. I'm sure it's somehow
connected to the premature-graying gene - I've read it somewhere that it can
be linked to certain types of skin cancers. I'm tempted to get a referral to
a dermatologist just so I can go once a year and have them check me over.
Hers was so rare as to not have any nomenclature associated with it specifically.  It was a melanoma that originated exterior to the vagina, but it was embedded deeply in the tissue.  It has since spread to the lymph nodes, a lung, and her bones in the pelvis, and almost certainly (although we've never had any definitive diagnostic) to the brain now as well.

>I know [Xanax]'s strong. I thought it was mainly for anxiety, somewhat like
Valium?
>My mom gave me one once when I was having a migraine. I just needed
something to knock me out, and Benadryl wasn't doing it. Of course now they
have meds for migraines, but back then, you were on your own.
I don't know the mechanism of action, but it is calming although in a different way than Valium which just slows everything down (i.e., it directly and indiscriminately activates inhibitory neurons across the entire nervous system).  This is again different than something like Cymbalta that eases the body's fight-or-flight response without affecting other faculties.  There are a lot of pharmacological approaches to achieve a similar end.

>I'm sure [Dad']s emotions are running the gammut - including guilt. It can't be
easy feeling so helpless in a situation like that. I'm glad y'all are there,
if just for him to know he's not alone. That may be all y'all can do, but
it's something.
He's handling it pretty well.  He did everything he could for her and is doing much better and more for her than most family members could or would.  The nurses/aides say he's the envy of their unit because they doubt they'll receive this level of care from their family members when they reach an equivalent point in their lives.  They're probably right.

>How is your Aunt taking this?
She's down somewhat, but she's also has a very pragmatic outlook and has been through similar before.  She had a son who died after prolonged illness including a heart transplant in his 50s.  Subsequent to the transplant he had a paralyzing stroke never regaining the use of his left hand.  He then had gradual organ failure culminating in his death.  She and my mom and their brother also buried a sister some years back after a long decline via Alzheimer's.  She was my aunt Mildred's younger sister (though older than my mom).  My aunt is despondent, but she also sees that my mom had a good life, a good husband, and other than occasional pain that is presently treatable she isn't suffering much right now.

>I'm sure it's still different when it's someone close. I can't imagine
having a job like [Dani] has and not letting it all get to you after a while.
Though as it is with doctors, cops, etc. that you achieve some sort of
mental strength that allows you to see it as a job and service. I don't
think I could do it.
>I know I'm calm in a crisis and able to shut off the emotional aspects of
things when I need to, but it's infrequent I have to use those qualities. It
takes a special person to be able to do it day after day.
Dani and my Aunt are very similar in that they're somewhat hardened against the realities.  They persist through it as though it doesn't matter because, really, it doesn't.  Things have to be done no matter how they affect you emotionally.  Take for instance my mom's panic attack.  She was upset and needed to be calmed.  Dani came in and talked her down as best she could, connected her to oxygen (there's a tank in the room), massaged her, reassured her, etc.  I stayed on the sidelines upset and not really sure what to do.  My emotions didn't accomplish anything that was needed in that moment.  I've gotten more of a handle on that since I started the Cymbalta, but the overall situation itself is hard for me.  Maybe it's good that this is so difficult right now because it will be less a tragedy than a relief when her death finally puts and end to the process.

>I see your point. Some people aren't comfortable with the idea of others
being there with the sole purpose of wiping your ass, birthing your baby, or
picking you up off the floor. But you just have to remind yourself that they
do it every day, for all sorts of people. It's just a 'nother Wednesday to
them.
A lot of the personnel that are involved in these things handle it very well in that they can view the troublesome aspects of it as "whatever"; they're accustomed to all that.  But they'll view each patient as an individual and do what must be done on a case by case basis.  The nurse and aide they have are both great and are very personally involved here.

>[Dad] may be saving it for later, after everything's over. Perhaps there's also
quite a bit of dealing with things before they happen, so that he's able to
keep control right now when he needs it. I don't know anything, really,
about illness like this and the affect it has on the other family members,
but I can imagine either scenario. I can see the period after she's gone
being a time when he may need support, as well.
I think so.  He's largely moving forward like a soldier on the battlefield.  He has a mission: Keeping my mom as healthy and as happy as possible.  There's a lot to keep him busy: Checking what she needs, giving her the meds on schedule, preparing her meals, changing her, monitoring her vitals, and so on.  There's going to be a considerable void left by the absence of purpose on top of the absence of a partner of 36 and a half years of marriage plus fifteen more of dating.

>Recently I was contemplating the entirety of the situation with Dani being
there, pregnant, and recognized the complexity of impermanence. Life is a
situation in flux - birth and death and our attachments to both.
>Either way, I hung a new string of prayer flags on the back porch.
Like I alluded to earlier, it's a surreal year for me, an odd time when I'm trying to get my head around slowing bringing a new person into our lives and then having another one gradually slipping out of it on a similar timescale.  Watching Dani carrying my mother's grandchild while she takes care of her near the end is a very bizarre experience that the male mind can't fully comprehend.

>Perhaps [Dad] just needed the moral support. And perhaps y'all need to be there
for yourselves. At the very least, so you don't look back later and wish
you'd have been there, or done more.
That's all part of it.  We did help a lot by getting him groceries and doing other things around the house.  A lot of that is covered below.


Feb 17th

My parents' neighbor Terez came over in the early afternoon to drop off some food.  A lot of the neighbors do a good job of taking care of my folks in that department.  At the time my dad was sleeping in the bed alongside my mom's hospital bed.  He'd had a rough night with the dreams about the dog, so he was overdue for a nap. 

I stood out front and filled Terez in on all the events over the past few days and whatever I knew of that preceded it.  When Terez started to pull away I went inside and heard people talking in the bedroom over the intercom in the office, so I checked what was up.  Turned out Mom was up, so I asked them if Terez should come in.  They said yes, so I ran out and caught her before she pulled out of the driveway.

Unlike with other visitors the day before, Mom wasn't really perked up.  She didn't really seem to recognize Terez and in general wasn't very responsive.  She'd throw in a comment occasionally, although it was rarely relevant.

Still, my mom's sense of humor comes through from time to time though.  She and my dad have always played up this love/hate relationship where he is positively adoring and she acts like she couldn't care less and calls him names.  The nurses and aide have seen this act back when Mom was still herself, and they found the two of them hilarious.  At one point today my mom moved her foot down at the foot of her bed where my dad was sitting a moment earlier.  When he sat back down after getting her something, he landed on the foot beneath the covers.  She grimaced and he apologized profusely.  "What do you call me?" he asked her.  "Stupid bastard," she said.  That's the old her, peeking through the fog.

I left my dad and Terez to talk and hopefully engage Mom, and I went off to the kitchen to check in with Dani and Aunt Mildred.  Dani and I play this same act as a variation on another shtick my mom and dad developed, one in which the husband pretends to be abusive (which everyone sees through, making the threat laughable at the outset) while the wife (who is similarly anything but vengeful) promises to retaliate in kind.

"Sometimes Dani starts giving me a hard time, so I threaten to punch her in the baby," I tell Aunt Mildred.

"Awww, that's a shame," Aunt Mildred says, chuckling because nothing phases her and she knows I'm full of shit anyway.

Dani chimes in.  "Sure you will."  Turning to Aunt Mildred she says, "He knows that if he ever does that, this would be the last baby he'd ever be able to produce."

"You'd twist off the chandelier, eh?" Aunt Mildred says.

We couldn't stop laughing.  She can always top us.

That night Dani was feeling kind of nauseous [due to the pregnancy, most likely] so she didn't want to go out for karaoke.  Katherine and Alec roped her mom into babysitting, so we went to Billy's Lounge.  We ended up not getting there until 10pm and the place was pretty crowded.  Katherine joked about looking like a fag hag showing up with a couple guys (Alec's a bear; she even calls him "Pookie Bear").

There was a surprising amount of country.  I know the place is somewhat rural, but still!  I mean, can't some stereotypes about gay folks be true?  I did "Careless Whisper" since I just sang that last week at [my local karaoke bar back home].  I hoped to shift the song selection a bit more '80s Top 40, but that wasn't entirely successful.  The only other song I got to do (as you already guessed, I'm sure) was "Sweet Transvestite" which was actually a lot of fun because I got a bit crazier with it than I usually do.  Right when I first started singing a couple girls at a table near the stage went, "He sounds just like him!"  (Tim Curry/Frank-n-Furter, I assume.)  When we got to the part where the background vocals come in, I handed them the mic and they did their part.  It was great.  I took a bow at the end.

The night ended pretty early though because the dj packed up around 12 (Billy's closes at 1am).  Kat and Alec hadn't gotten to sing, although Kat put in "Don't Speak" by No Doubt.  We went out to a daquiri place to pick up one for Kat's mom by way of thanks for babysitting, but they were closed too.  We finally headed to Old Town (i.e., the oldest part of town which is now like a mini Burbon St.) and went to a small bar there for less than an hour before I brought them home (Kat had to work the next morning).


2/18/09

Kristin,

Just checking in to let you know we're still on schedule to head home tomorrow (Thursday).  We could make it there anywhere between 5pm and hours after that.  I only need to refuel once on the way since I filled up last night.  Thanks for keeping the dogs for us.

This week has left me really drained.  I can hear it in my voice.  You probably can as well.  You don't go through this unchanged, and the saga isn't over yet.

-Alex.

Feb 18th
Mom got through the night fine other than wetting herself once early this morning.  Dani and my dad helped change her.  No night terrors though.

The original plan was to have left this morning, but we felt like we needed to stick around so Dad could take Aunt Mildred to the doctor and would have someone to watch Mom.  At this point though, she really doesn't have the strength to get up out of bed and wander off on her own, so there's little for us to do.

She still has lucid moments, however brief.  She doesn't have pain from the bone cancer very often even with the minimal dosing of pain meds she's receiving (currently once every 12 hours; can be taken up to every 4), but her back is sore, probably from lying exclusively on either her right side or her back.  She complains about her spine hurting from time to time.  This morning she was rubbing her rear.  "Is your bottom hurting?" my dad asked.  "No, it's just getting big," she said.  We all had a laugh.  It's hard to know whether she's responding to the meaning of the question or just reflexively to the text of it.

She got hung up on this idea she was getting fat (even though she doesn't eat much more than a cookie and some pills each day).  I offered her the cookie, and she only had a bite.  When offered some more she said no, too much chocolate, and then she stretched her hands apart to indicate she was ballooning from all the sweets.

As she has for the past few days, she pretty much slept solidly for a good while, but the next time she was awake, we talked to her quite a bit and somewhat clearly.  She often trails off in the middle of saying something.  She'll begin a sentence and then it will fade away to a mumble.  She doesn't usually respond to requests that she repeat what she just said, so we miss out.  That's fine though since most of the time when she's like that, she's so far out of it that what she was saying didn't really mean anything.  Even when she's enunciating, sometimes she's just saying nonsense syllables, even making musical patterns out of gibberish.

We stayed with her in the bedroom for a good while and I wrote, Dani read, and we just waited around for her to stir again and poke through one of the windows of lucidity.  At one point she perked up and saw me and said, "Hey, sweetheart."  She talked to us for a while and said (at our suggestion), yes, she'd like to come out in the living room.  We brought her out there for the first time in a couple days.

She didn't really stay clear for long, however.  She slipped back into sleep and then came out of it a while later in a fog of dementia.  "Are we going?" she asked repeatedly, pulling on her clothes and shuffling the sheet over her.  A little later, "Are we going now?"  "Are we ready?"  Then there was a long round of "I want to go home."  She called me Bobby as well.  "Who's Bobby," I asked.  She said she didn't know, then called me Bobby again less than a minute later.  We don't really know anyone named Bobby.  She gradually calmed down and slept the rest of the afternoon in the recliner.  I slept for a couple hours on the couch across from her.

As I'm writing this now (almost 6pm), she's still sleeping in the chair, my dad's sleeping in the recliner next to hers, Dani and our unborn are sleeping on the couch, and I'm lying on the floor writing this.  Aunt Mildred's in her room painting and staying clear of this epidemic of the sleeping sickness I just recovered from.

Eventually we moved her back to the bed as she was complaining that her back hurt.  (We have a so-called transporter, a small foldable wheelchair they originally purchased for my aunt when she was less mobile.)  Before we all went to bed (well, except me; I'm up writing) I stopped in to give Mom her meds.  She drank a bunch of milk.  Well, more than usual: A half a glass.  She also had a bite of a cookie.  She said she wanted more milk after she emptied the glass, but by the time I was back from the fridge with the refill, she wanted none of it.  "That's too much," she told me without opening her eyes.  "Why are you always feeding me cookies?" she asked me.  I asked her what she wanted instead.  Nothing, she said.

Dad asked if she knew he loved her.  Yeah, she nodded.  Then he asked her what she thought of him.  She put her hand up and made a "so-so" gesture.  Of course she does, and there's no one who could ever question that, least of all her.  It's funny how her ability to throw out a sarcastic tease remains while she's out of touch with so much else.

Unfortunately, less than half an hour later she was awake saying, "You gave me too much to eat!" over and over.  I raised the head of her bed to help drain her stomach (one of the pills she takes is also for that purpose, originally as an anti-nausea med, although honestly that need has passed since she's long-finished with radiation).  I just went back in and lowered the head of her bed so she doesn't have as much weight on her sore spine.  Both she and Dad slept through it.

-Alex.


2/24/09

[bulletin I posted on MySpace]

Updates
As several of you have remarked, I've been uncharacteristically quiet lately.  Here's a bit of everything all rolled into one update to catch you up and give you a heads-up on upcoming events.

*This weekend is Katie's big 30th birthday.  If you want to come out with us, we're doing Great Notion on Saturday followed by Rocky Horror.  Probably dinner at the Applebee's nearby first.

*My mom is in the process of dying with cancer.  I'll go into specifics some other time.  Dani and I were in Louisiana with her most of last week, hence part of the reason for the silence.  Starting next week I'm going to be out of town indefinitely to help my dad take care of her.  I will be back in Texas periodically, but I have no timeframe for any of this.  (Not looking for sympathy or condolences, just telling you what's been going on.)

*Dani is still pregnant and will be until late July or early August.  No, we haven't settled on names.  I'll post some possibilities later.  Suggestions appreciated.  Don't wait until the last minute.

*Everyone I know is sick or has gotten sick recently.  I'm getting over a cold, but it only lasted a few days.  If you're coming down with something use that ZiCam shit.  For real, it works.  [This was the 2nd success I had with ZiCam tablets.  I fended off a cold about a week before Dani and I got married.  Normally I'm sick for weeks whenever I catch a cold, so one that lasted a few days was unprecidented.]

*My computer is recovering finally, but I'm still installing things and transferring my files back onto it.  It pays to be paranoid and have redundant backups.  Thanks to Kristin for loaning hardware during the interim.  Note: If I ever meet anyone involved in writing spyware, malware, or viruses, I will kill them.  Slowly.


Kristin,

I'm still in town and will be probably through the weekend.  After sleeping 12 hours on Monday night with the Nyquil and taking ZiCam constantly, I think I managed to get a handle on the cold.  I didn't want to go down to my folks' place sick and put my dad out of commission and possibly kill my mom (who is probably at least somewhat immune-compromised from the radiation on her bones).

My mom is doing better at the moment.  The nurse switched her to a cocktail that included Haldol and Benedryl among other things.  Over the past few days she has been out of the fog that covered most of our visit.  The thinking is that the Benedryl alleviated some of the swelling associated with the immune response to metastasis in her brain.  She has been able to get up and help herself to the bathroom for the time being.

I've been on Cymbalta to keep my anxiety down (which I'm sure led to the cold) and for the last couple days I've taken half an Adderol to get motivated to get the house clean and the computer back in working order.  It's steadily getting there finally.  I still have your old 40GB hard drive.  We need to install your 250GB.

Don't forget: Katie's 30th birthday is Saturday.  The plan includes karaoke followed by Rocky Horror.  She said they might do dinner at the Applebee's in the neighborhood first.  I had hoped Katherine would be able to make it up for a "last hurrah" before her surgery, but she and Alec are going out of town already.

-Alex.


2/26/09

Erin,

>I am so sorry to hear about your mom. You let me know this was coming last year when we did our little road trip, so I was aware it was simply a matter of time. Though no expressions of sympathy were asked for, my thoughts are with you and your dad and your aunt. If there is anything I can do for your or Dani or your family, please let me know, and please let Dani know if she needs anything at all while you're gone that I am only a phone call or email away.
I couldn't remember who I told, mostly folks who I had to like you since you were there.  [Erin and I took a road trip to Louisiana several months before this and stayed at my folks' house.]  I think Katherine knew because she had come over at one point, and I think it was right after Mom had gotten out of the hospital, so I had to clue her in.  She was first diagnosed almost a year and a half ago.  I didn't want everyone knowing and walking on eggshells everytime they saw me or mentioned anything about visiting them.  Thanks for the offer, but there isn't much that can be done at this point.  They have neighbors who help out cooking for my dad and aunt, and my mom has a nurse and an aide who stop by throughout the week.

-Alex.


3/4/09

[After I went home for a week, I went back to my folks' place again, this time without Dani.]

Kristin,

Just the usual going on here, only worse, as expected.  I went to bed at midnight when I got in last night (I think I arrived in town around 6pm, but I stopped off and picked up some groceries for my dad and milk for myself on the way in).  I ended up sleeping until 10am... and then I needed a two-hour nap around 4 this afternoon.

Mom's slowly declining.  She's more out of it than she was before, and for longer at a time.  She doesn't get out of bed anymore.  She's entered a phase where she's agitated a lot of the time, picks at her clothes, etc.  She's hot and then cold (literally, not just in the Katy Perry sense), kicking off blankets and then wanting them back on a few minutes later.  The first night I was here she pulled off her diaper over and over and over right as my dad and I were in the room.  He'd catch her and stop her, then pull it back on here, and she'd do it again less than a minute later.  She's slipped away from that particular behavior tonight though, and good timing too, since she had diarrhea right after that.  We used to try and give her some modesty, but we've just given up on that, and I've seen pretty much all of my mom I never wanted to see.

She's on medication that just arrived earlier tonight to help her with the agitation.  My dad gave it to her earlier since she was getting wound up just as he was getting ready for bed.  She gets worked up in addition to pulling on the clothes and will be insistent about things, usually things that don't make any sense.  She was convinced she had to pee earlier just a few minutes after she did.  Lately she's been calling out for people.  She called out for her dad earlier (even though he's been dead for more than 35 years).  Oddly enough, everyone she's been calling for is related to her brother.  Not either of her sisters, just her brother.  She called out for him, then one of his sons, then his daughter, then his daughter's daughter (even though she hasn't seen the latter couple in at least five years, probably longer).  This was all separated by hours or even days, so it wasn't like she thought they were all in the living room or something.

Before I got there she was a little more lucid, but she wasn't completely there (and hasn't been in some time, admittedly).  She's Catholic, so she liked to swear things like "Jesus, Mary, and Joseph."  She tried to say that the other night and could only make it two-thirds of the way through it.  "Jesus, Mary, and Coca Cola," she'd say, pausing on the third one.  She came up with another variation on that, but I can't remember it now.  [The variation was "Jesus, Mary, and Jerry."  The funny thing was that she knew it was wrong, and she could even laugh at what she came up with, but she couldn't remember "Joseph" at the end.]

She hasn't spoken much at all.  She'll come out of it for a minute sometimes and be responsive, then drift off again.  A lot of the time she doesn't even open her eyes.  A little while ago before she went to bed, she called out for my dad.  He was on the phone, so I went in there and checked on her.  She had kicked the blankets off the bed and of course wanted them back on her.  I tucked her back in, then asked her if she wanted something to drink.  She said yes, but didn't want water.  Milk, I asked.  She said yes, so I ran to the kitchen and got her some.  By the time I was back (about 45 seconds, tops), she was out like a light.  Not responsive at all.  Typical.

Today was pretty much a bust.  I think I told you on the way in that I called Katherine's husband to check on her.  She was doing fine but was groggy and out of it still, fresh from surgery that morning.  I called him earlier today and left a message but never heard back from him.  I also called her room at the hospital and didn't get an answer, so I don't know what's up.  I'm hoping I'll get a chance to see her tomorrow and hit a couple pawn shops out that way.

All I accomplished today was to weed whack around the house and fence, and then sprayed Round-Up so that my dad won't have to dig out the weed whacker again this year.  The plan tomorrow is to get a peep hole from Home Depot and put it in the front door (something they've never had on this house, and now people are coming over all the time).  I wish I was more help, but he doesn't really want to let me take over.  I offered to let him sleep in the other bedroom and I'll sleep in his bed and take care of Mom, but he doesn't want that.  He always thinks she'll do okay in the night.  I'm listening on the intercoms I set up for them, and I heard her go through a mumbling phase for about a minute, but that's all so far.  However, she may start stirring again in a few hours as the medication wears off.

I don't know if I told you, but the weekend after I got back from my last visit here, I went up to Dani's work and had one of the nurses and an aide show me techniques for turning Mom over, how to change her, etc.  That's been a help because my dad used to struggle with her a lot more than he had to.  Simple things like crossing her opposite leg over before rolling her shifts her weight and primes her for the direction we're going.  Hopefully some of that will rub off so that he's doing that even when I'm not there.

So how's your life?

-Alex.


Thursday: 3/5

I didn't go to bed until 6am last night.  My mom cycled through a series of episodes of being panicked and talkative.  We'd give her some meds, then she'd come out of it three hours later: 12am, 3am, 6am.  She woke up a few hours after that, but the nurse aide was probably there by then sometime this morning.

Today I installed a peep hole in the front door, something my dad always wanted but Mom didn't for some reason.  It's like Grand Central here some days.  I also returned a couple curtain rods to Home Depot, things my mom bought that she'll never put up. "Unfulfilled dreams," Dad called them.  It's little mundane things and moments like those that are unexpectedly meaningful.  I went around the house emptying the little trash cans for the garbage day, and when I got to the one in the living room next to my mom's chair, there was nothing in it.  Normally it was full of clippings from the newspaper where she'd cut coupons and that sort of thing.  When we were here a couple weeks ago, I thought about going out and getting something to eat, and it occurred to me to get Mom some Taco Bell (her favorite, oddly enough).  Thing is, she was beyond eating anything like that by that point.  An ending had passed without me sensing it had gone by.

I went up to the hospital and saw Katherine today.  She's doing really well.  Still recovering from the anesthesia (i.e., some shaking, teeth chattering not associated with being cold).  She's actually hot all the time at the moment even though the temperature in the hospital room was set to 50 degrees.  I was under a blanket on the small couch next to the bed.  She isn't in any pain except when she moves or laughs.  I was killing her, of course.  Alec came by with the kids for a bit.  I stayed there for several hours.  As of arriving home, I currently have 53.3 MPG with 200+ miles on the tank so far.  [I had bought a Prius a few months before this.]  I'm going for the record.  I've had it as high as 54.8 this time, but bad traffic brought it down.  The warmer weather helps with the mileage, so that's partly to credit this time around, but I've also improved my skills with the car over the winter.

The nurse went ahead and put in a catheter on Mom this afternoon finally, just before I left to see Kat.  Mom's no longer acting physically agitated enough that we worry she'll pull it out.  Her blood-oxygen is low, so we had the tank on her, but she always breathes through her mouth, so the nose-hose doesn't do much good.  She slept most of the day pretty soundly thanks to the liquid meds (Roxanol and Adavan... sp?). 


3/6/09

[I told the story about "Jesus, Mary, and Jerry" to my friend Vanessa.  This was a bit from the reply.]

>Surely I'm not supposed to laugh at [Mom's craziness]. Is a subtle chuckle acceptable?
I guess my friends don't know what to make of the fact that I tell stories like this.  I'm here also visiting a friend in the hospital following surgery for her own cancer, and she looks at me blankly when I reference my mom from the blackest humor.  Yes, you're free to laugh.  I do, else I'd go crazy.


Friday: 3/6

The additional doses Dad gave Mom just before bed held through the night.  Even I slept a ridiculous amount.  Since I didn't sleep much the previous night, I went to bed at midnight and didn't wake up until 11am.  Mom hadn't been awake at all during that time.  The plan was to let her come out of this sleep so she'll get something to drink.

In the meantime we went to the bank and emptied Dad's safety deposit box out so he can move to the branch closer to his home (i.e., it's about one mile away instead of two; his universe is shrinking).  We went to Sam's "Club" [I think the term "club" is a scam; it's just a store] and picked up some groceries as well, then came home and I washed the car while he watched.  He wanted to help, but he's got a knee that is steadily going bad, and he won't go see a doctor about it until Mom is gone.  I think he ought to have a doctor determine what the problem is so he can address it before it gets worse.  He says he's coming out to Fort Worth for a visit to see his grandson in August.  We'll see.

Around the time we'd finished with the car, Mom started this moaning that at first sounded like an open-mouth snore.  Long moans on the exhale.  This continued and seemed to get worse over the course of the evening.  It's never been clear if she was in any pain, although she had a slightly furrowed brow and was somewhat agitated, picking at her clothes and mumbling nonsense syllables.  At one point she grew sing-songy with it, although I didn't hear any of that (Dad was in the room and she literally sang him to sleep as he was watching the news; Aunt Mildred heard her doing it and asked about it much later in the evening).

Dosing her first with the Roxanol (morphine) around 7:30 maybe and later with the Adavan around 9pm didn't help much.  She continued to moan, although the agitation/talking/shuffling in the bed was reduced.  She also hadn't produced any urine in quite a while.  We emptied the catheter bag earlier in the evening and there was nothing new in it.

I talked to Dani and filled her in on the moaning and lack of urine production.  She suggested maybe the catheter was plugged with sediment, so I called the nurse on-call around 10:30, and she came over and checked Mom out.  She flushed the catheter and found no blockage, just no urine production.  Her (Mom's, obviously) vitals were down pretty much across the board.  Slower respiration with apneatic pauses, much lower BP (this time: 90/60; previously: 160/90), weak pulse, few bowel sounds, etc.  Not good.  Sounds like the end is approaching, but no idea how many more steps in a journey full of signs of the end we've already passed.

I ended up not going to bed until around 4am.  Mom's moaning continued until at least that time, and obviously that was unnerving.  I didn't medicate her any more, however.  Dad was asleep, and since the medication wasn't addressing the moaning, there seemed no point in waking him. 


Saturday: 3/7

I woke around 10am, and Mom wasn't moaning any more, but her breathing was becoming more labored.  Her pulse was up though, close to 100 bpm.  Her kidneys had obviously failed because she had produced absolutely no more urine during the course of the night.  Even without additional fluid intake and even in a sick person (unless they are severely dehydrated), kidneys will continue to produce urine.  My dad was convinced this was her last day, primarily based on the breathing.  There's a type of labored respiration described as "fish out of water" breathing.  It wasn't clear it that was what we were seeing, but it was irregular in both the depth and duration. 

I gave her a dose of the Roxanol, and that made the breathing a bit more regular, but her pulse remained near 100.  We had kept the oxygen on her through the night.  I didn't have a lot more options on hand to try.  Janice and Cindy, a couple of my dad's nieces were coming over plus Aunt Mildred's granddaughter Ava.  My dad had sent out an email on Monday saying that Mom had entered the "terminal restlessness" phase (i.e., one of the last phases to watch for before patents expire).  She wasn't consistently in that though, but it brought my cousins in as well as my Uncle Ray and Aunt Margaret earlier in the week.

Janice and Cindy came over around noon or 1pm (Ava as well sometime in there), and we chatted, but I kept checking on Mom because of the breathing and the elevated pulse.  Around 2pm I gave her a half-dose of Roxanol.  Since she hadn't been taking any fluids (she had aspirated the last time I tried and showed no interest in accepting anything in any case) her mouth was so dry that I didn't want to over-do it with the liquid Roxanol.  (Muscus membranes are only permeable to anything including gases when they're moist.)  Mom was in the bedroom, of course, and the family was in the living room.  I went out there with them again and watched the clock.  I got up and checked on Mom again around 2:15 and she was the same.  Her respiration had ranged anywhere from 9/min to 14, but now it was almost 20.  Pulse remained untouched at 100.  Since the Roxanol helped with the breathing before, I gave her the other half the dose.

I went back out in the living room, but Ava called me over in the kitchen where she was eating alone (Cindy had been talking to her earlier but was in the living room; Ava's totally ADHD, so she needs constant stimulation).  She had a big salad she picked up from some restaurant on the way here, and she wanted me to split it with her.  Aunt Mildred came in around the same time and Ava fixed her something to eat as well.  (Ava never stops moving.  When she gets bored she does our dishes.  Sound familiar?)  [I do the same thing.]

About 2:25 Janice came over to me.  She noticed on the way back from the bathroom that it looked like Mom wasn't breathing.  I went back there and checked, and Mom was over.  No breathing and no pulse (though weak, I could always find one previously on her carotid).  I had her get Dad.  He was pretty broken up.  You can know something's coming for a year and a half and still be affected by it just as profoundly in the moment it finally happens.  Aunt Mildred came in as well.  My mom was her youngest sibling of the four of them (Aunt Mildred's the oldest), and it really broke her up as well.  Even though I was trying to hold it together through all of this, I pretty much lost it too during their goodbyes.  I only managed to hang on for long enough to call the hospice to send the nurse out.

There's a chain of custody, so to speak in the whole sequence.  The nurse (Wanda) came out and checked for any vitals, then called the coroner who gives her a case number.  At that point she can call for the body to be taken to the funeral home.  During all of this Janice and Cindy made their exit so as not to be in the way.  Ava stuck around at Aunt Mildred's insistence; she was probably a good distraction for her right then anyway.  I started making phone calls that my dad didn't want to just then, although he handled a lot of them himself: Neighbors, relatives, etc.  We even got a call within less than 30 minutes from my dad's brother Raymond and his wife.  The news had spread pretty much across the family within minutes.  Even one of my cousins in Houston knew before I called her.  I really lost it when I called Dani because I knew she was abundantly familiar with the situation here.  I stopped making calls for a while because I knew there were other people I needed to deal with still and didn't want to be a mess from that point on.  I never called you [Kristin ]or Katherine yet because I just didn't want to be losing it on the phone.

There was a long pause during the wait for the funeral home to pick up Mom's body.  The nurse cleared out all the party drugs (we had a nearly-full bottle of the morphine-based Roxanol, a bottle with oxycontin (sp?) pills Mom couldn't take any longer, etc.  I have no idea what all was narcotic other than those two).  Whenever Dad wasn't looking, I removed as many reminders from the room as I could: Mom's oxygen tank, unused Depends, the baster I was using to give her fluids, the intercoms we used to monitor her from the living room and office in the front of the house, the garbage can where we placed anything used to clean Mom (and then I placed all associated trash in the can outside), etc.  They won't be able to come by to pick up the equipment (the hospital bed being the most salient reminder, unfortunately) until Monday, but at least the equipment is all turned off so that those sounds and the hum of the intercoms are gone.

Things slowed down after a while.  With Mom physically gone, and then Wanda, and then finally Ava left, the routine seemed to return to normal, just without Mom.  We had supper and I cleaned up some more.  My dad and I sat down and worked on plans for making funeral arrangements (we have an appointment for Monday morning), talked about her will, etc.  It was all very business-like and unemotional even though he had been more broken up than I had let myself be until later that night.

It wasn't until after Dad and Aunt Mildred had gone to bed that I really let go... repeatedly.  I went through the pictures I had scanned from my childhood up to the present and looked back through it all, looked at my mom's history in my life.  There are a lot of poignant shots that aren't staged as such in the least, but it's all there for even a stranger to see.  It really got to me not having her from this point on.  My teeth hurt from my sinuses being stopped up.

-Alex.


[Dad's outgoing message I transcribed to his dictation for friends and family.]

Today, Saturday, at approximately 2:30 in the afternoon, I lost my beloved wife Muriel in her long, courageous battle with cancer.

Funeral arrangements are incomplete at this time.  Please consult the newspaper for details.  To ensure that all receive proper notice a follow-up email will be sent when all arrangements are finalized.

Uncle Eddie.


Dani,

>I'm so sorry that I'm not there with you right now.  I am very glad, however, that you were there.  Whether you felt like you were a big help or not, I think it probably means alot to your dad that you were involved in mom's last days.  Obviously he is taking comfort in your companionship too.
I was a help, just not in ways dramatic enough to really feel accomplished.  I took over where he didn't want to go and maybe made some suggestions he wouldn't have thought of.  I'm glad I was here though.

>You mentioned your dad wants to come here in August - I'm fine with that, but was actually thinking that we might should drive down there with the baby instead, so that Aunt Mildred can meet him and your dad can show him off to the hoards of relatives.  What do you think?  We've got time to think about it later, but that's just one option.
If he's set on August, I think it would be better if he came up.  The baby will be brand new and not fit for traveling (never mind the heat).  He'd love to see the place finally.  I only wish he'd have sprung for this sooner when Mom could have joined him.  Her biggest regret was that she never came up for the wedding because she felt like she needed to take care of him (the irony!).  She confided that to me several times after you and Dad had gone to bed, but she would never bring it up and guilt him for his health concerns.

>I love you.  Call me tomorrrow, or even tonight if you need to talk. xoxo dani
Thanks.  I don't think I want to though.  We'll see how I feel tomorrow.  Right now I cycle through everything being alright like nothing ever happened and feeling physically crushed.  My teeth ache from my sinuses being filled repeatedly.

-Alex.


3/8/09

Katherine,

>You know i am here for you. I am home now, so call when you are ready Or stop by if you need to excape late at night.
Thanks, I wanted to check in on you, but both my dad and I just wanted to be alone today for the most part.  I've been intercepting calls he didn't want to take and letting him have a day off.

>If you want Alec and I will be able to attend any service jsut let me know.
We're making arrangements tomorrow.  I don't know when it will be just yet.

-Alex.


Kristin,

>I'm so sorry. Though, I'm glad that you were able to be there, for all three of you.
>Don't worry about not calling - I appreciate the notes on the going's on, and that's enough.

>I don't think anyone expects this to be easy for either of you, especially now. The emptiness afterward can be just as hard. Allow yourself whatever emotions you do have. Sadness and grief is a part of love - it shows how much she meant to you. Guilt that you're relieved it's over isn't unwarranted - it's okay. You simply feel how you feel and it's fine to be selfish with that. Being the type person you are, you may feel some emotion is irrational or irrelevant to system operation, but allow yourself whatever you feel.

>Remember the stages of grief and allow yourself those. Even to go through them out of order, or to fall back through the same ones.

>And totally ignore me if I'm being annoying - you may know all of this. It's my instinctive reaction to situations like this to want to try to fix things, especially emotionally. But I know it's not like replacing pipes or rebooting a computer.

>Holler at me if you need anything. Or just need to talk about silly stuff.
>I'm here.
I haven't spoken to anyone outside of the extended family lately other than Dani a couple times.  I told everyone else via the MySpace bulletin because I really didn't feel like talking to Katherine, etc. just yet.  The phone rings over here at least every other hour even though we've put out the word that we aren't in the mood for company right now.  Everyone wants to help and to know about the funeral arrangements.  We won't be making those until tomorrow.  We don't need any food; the neighbors kept the fridge and our stomachs stuffed.  I told my dad that today was our day off.  I've been intercepting the calls so he doesn't have to get trapped into conversations the way our chatty ADD family is wont to do.  The first call he's taken since all of this was this evening when an old neighbor named Laurel called.  She was like an adopted daughter to them; their kids were their surrogate grandkids as they grew up next door.  Unfortunately, she moved away to Kentucky a couple years ago, but she was back for a weekend just before Dani's and my first trip home and just before Mom's true decline began.  My dad was really breaking up with her on the phone, but she's the only one he'd feel comfortable doing that with.  He said he'd lose it with anyone he tried to talk to if they got him talking about my mom.  I'm the opposite.  I told the story several times today and last night about her passing, all the gory details (well, I didn't include things about her turning blue just after she was gone, etc.).  I have no problem with clinical things like that, it's thinking about my dad and Aunt Mildred being upset in the aftermath, and thinking about my mom as a person.  Putting those pictures together for that bulletin was very cathartic.  I cried the whole time I was going through them and picking out which I wanted to use.  I start crying whenever I even think about it, but like you say, that's a good thing.  I don't want to bottle it up and put it off.

[Deleted a lot of stuff here from unrelated conversations.]

>Today I'm taking [her daughter] to get some pants at the mall. If I don't, she'll keep nagging me about it. I also need to clean up around here. It's starting to look like Harlem. (More than usual)
It's nice to know I'm needed back there.  There's plenty to clean up and clean out over here though.  I had Dani research places that are looking for wigs, and she came up with a cancer organization with locations both in N.O. and F.W.  Ironically, my mom has dozens of wigs and yet never lost her hair to chemo.

-Alex.


3/9/09

[sent from Dad's account]

Funeral arrangements for Mim were finalized this afternoon.

Visitation will be at 9am.
Mass will be at 11am.
At the conclusion of the mass her body will be brought to the cemetery and placed in the family tomb.

Notice will appear in the paper on Wednesday.


3/12/09

[Mom's note that my dad found.  Interestingly, the note wasn't discovered until after the funeral, but the suit she references was exactly what she was buried in, even though none of us knew to pick that one.]

Honey,

If I don't make it out of [the hospital] alive- Do as you wish with me.

But make it fast and only family & close friends.

Dress me in a turquoise suit and a wig name[d] "Paula" light makeup NO red {underscored] lipstick light coral or a pink shade
No glasses
Pearl Pin (circle & pearl earrings

Give all my jewelry to Dani except the wide cuff gold bracelet that I bought - give it to Farrah.  And give [scratched out name; illedgible] something - good jewelry.

Or you could give my body to Medical Science for research on melanomas they might find in my old body.

Please call the people I listed.

(written in margin of note)
Jackie, Nunnie, Elsa
Nancy, Therese, George, Debbie
Hazel, Joan (your class mates) [parenthetical added in black ink]]

No flowers
Masses or Heart & Cancer research


Libzie,

>You know, because of your earlier post [on MySpace updating friends that Mom had died and I would be away for a while longer], I realized that I need to call my dad (not so much my mom, who lives under strained circumstances and the same roof as we do). I hardly see him because he lives in GA, and know that we might only see each other a few more times, if we're lucky.
>Luckier, that is.
Thanks.  Yeah, I've been working through similar feelings about my mom.  We had a strained relationship at times (read: she was Catholic) and Dani and I were just saying that it was interesting that we felt that we hardly knew her because she was always a smaller person beside my dad's more outgoing personality.  I spent a lot of time trying to write up a proper eulogy that characterized her.  I realized how much more of my father I am (even in ways I don't want to be) and how alien she was to who I was.

>Thank you, Alex, for your posts.
>You've been missed here, you know!
>Myspace became suddenly devoid of anything worth checking in on while you were away. It is like an echo chamber these days.
I have a considerable backlog of stories and thoughts accumlulated (not all of which are about my dying/dead mom*), so maybe sometime next week I'll be able to get some of that posted.  That's my reason for living now.

*[I posted several things about Mom around this time.  The eulogy I read at the funeral was one of them as well as some philosophical bits of journaling.  They're elsewhere on this site under the "Afer Mom" section on the Personal page.]

-Alex.


3/13/09

Kristin,

I haven't written anything about what has been happening around here leading up to or since the funeral.  I've been meaning to call, but it's been non-stop action or sleep.  I bounce between the two states.  I only slept maybe three hours the night before the funeral (which was held on Thursday).  After the funeral we went to my Uncle Gerald(Mom's brother)'s house most of the day.  By the time we were back home, it was maybe 6pm, and there was some unwinding and decompressing to do.  We sat around and talked for a bit.  I tried to reply to an email from Tracy (from Katie's birthday party) from a couple nights before, and the words were swimming on the screen.  My eyes were bouncing everywhere, and the bits I could read never formed sentences in my brain.  I finally just told Dani [she had flown down for the funeral] to wake me in an hour at 9pm.  I woke up around 10:30 as she was coming to bed (I later learned from my dad that she fell asleep on the sofa in the living room not long after I left).  I got up for a little while and played on the web (at a snail's pace, of course; dial-up is a Zen-like experience), but then went back to bed and slept another 10 hours or so.

This morning my dad and I dropped off my Aunt Mildred for her regular eye appointment which takes quite a few hours (they have to deaden her eye, dilate it, then finally inject something that keeps her blood vessels in her eye from bleeding... the problem she is being treated for; she does this once a month).  We came home and had lunch, then Dani and went back up to the hospital to pick up Aunt Mildred and visit my Aunt Margaret in the patient's wing of the same hospital.  (She had an attack of pulmonary edema the day of the funeral and so couldn't make it there.)  Uncle Ray (her husband) was there and then Margaret's sister arrived while we were visiting.  Aunt Margaret had Uncle Ray bring up a couple sets of clothes she had bought for our unborn.

We didn't stay too long (it was the ICU, after all), and we took Aunt Mildred to the Hobby Lobby on the way home.  Someone gave her a gift card last xmas that she still hadn't spent.  I kept joking all week about it.  She'd mention we were almost out of bananas, and I'd say we needed to go to Hobby Lobby to pick her up some.  She was looking for a bra, and I'd say we should see if they have one in her size at Hobby Lobby.  Well, we finally got her there and she picked up a couple tubes of paint and a frame for a painting she was going to give us... then she got mad because we said we'd pay the difference if it ran over what she had on the card (we're talking about $2 here).  Then we went to Wendy's and she wanted to pay again.  She made me keep the change from a $20 for getting her a combo and a Frosty for Dani.  That's Aunt Mildred for you.

We came home and I ended up falling asleep yet again, this time on the couch in the living room for a couple hours.  It got to be too late to call anyone.  I'd been meaning to call Katherine back since the funeral.  I found an unopened Spiderman toy from a Happy Meal when we were in Walmart, and her kid Luke loves Spiderman.  I also forgot that tonight they were having a drag show at Billy's Lounge.  Rex emailed me about coming out there back before Mom died.  I didn't think I'd still be in town.  I've been too distracted to remember we were still here.  It would have been a nice distraction from my distractability if we could have gotten Kat out for the night, but it was too late by the time I thought about it.  Or at least I was too tired to care.

I've been up for a while now trying to catch up on a lot of the other writing I started at other points during the week.  More to follow later.  What's been going on that I've missed out on back in FW?

-Alex.


Here's the eulogy

Mom's eulogy
While my dad read a poem at the funeral he'd written about losing a spouse, I took the opposite approach and made my eulogy to my mom as light as I could.  I wanted for all of her family and friends present to remember her for who she was, not just that she was gone.

Before Mom passed away but after she began fading out the way most people with a terminal disease do (more about that some other time perhaps), I started a list of things she liked and loved that characterized who she was and what I wanted to remember about her.  These are some of the items on that list.

Mom liked making lists.

I think she liked that I inherited that from her.

She liked cutting coupons

She liked saving receipts.

She liked to write on the back of every picture in our photo albums: the names of the people in it, the date it was taken, and where we were at the time, so that we'd always know when we wouldn't have her there to ask.

She liked hiding Kleenex in her purse and her pockets and in every nook and cranny of the car.

When I was a kid, she liked to tell me to "clean up that mess."  And when I was a mess, she'd find some of that Kleenex and use it to clean me up.

She liked my dad's cooking.

And, oddly enough, she liked soft tacos and cinnamon crisps from Taco Bell.

She also liked to tell me I'd "dry up and blow away" if I didn't eat what she had set out.

After she saw <i>The Thorn Birds,</i> she always liked Richard Chamberlain... even though she knew he was gay.

She liked Liberace... but probably because he was gay.

She liked the house to be clean and organized and dust-free.

She also liked reminding me how when I was a kid she would go through the vacuum cleaner bag and pick out all my Star Wars figures' little guns that it had sucked up.

She liked to roll her eyes every year when I told her what Dani and I were dressing up as for Halloween.

And she liked writing all her friends she kept in touch with over the years and telling them what Dani and I did for Halloween.

She liked chocolate, but then she gave it up.

Dad and I used to like getting her chocolate for Christmas.  She liked to make things complicated for us when it came to buying her presents.

She loved her siblings Mildred, Gerald, and Lillian, and she liked to say she was the one in the family who didn't get any talent.

She liked decorating her house(s), and it was abundantly evident to everyone who visited that this was where her talents were.

Of course, she loved my dad.

She liked also telling him to "knock that off" when he told dirty jokes.

But she liked a particular sketch she saw on the Paul Hogan show so much she literally peed her pants laughing while trying to tell Dad about it after the fact.

She loved her daughter-in-law, the one who sat in the living room content to do nothing more than knit with her.  Or needle point.  Or whatever it was they did together.

She liked to tell me, "You better be nice to that girl or she's going to leave you."  I listened.

And she loved her grand<i>son</i> even though all she knew of him was the grainy ultrasound image of a little peanut.

She loved me.

But she liked to frown when I tried to take a picture of her. 

I married a woman just like my mom... and in more ways than that one.  And I'm glad I did.  I guess that says enough.

---
Comments to the above.

DaniDani      Mar 20, 2009 9:54 AM
Speaking as one of the people fortunate enough to have been there to hear Alex's remarks, this write up just doesn't even begin to demonstrate what a moving eulogy it was. Alex, you did a wonderful job of presenting this 'list' and making all of us feel like we knew Mim in exactly the way she would have wanted us to know her. You are a wonderful son and extraordinary husband. I love you very much.

NancyNancy Durham     Mar 19, 2009 7:23 AM
Wow, what a wonderful women she was and what great memories to share with her grandchild!

Alexplorer     Mar 18, 2009 9:22 PM
I talked to my dad a little while ago, and he's been receiving calls and letters from various family members, all of whom wanted to mention they really, really enjoyed this eulogy... far more so than I would have expected. One of my cousins quoted half a dozen items from the above from memory in her letter (which he read from over the phone). Apparently what I said resonated more than the really bad acoustics in that church.

Systematic KatieKatie Shay     Mar 18, 2009 6:37 PM
It's usually the lighter stuff that best reminds us who a person REALLY was. It looks like you have some great memories. Thanks for sharing :-) And you know ... all that other stuff you don't really want to hear. Also, even tho I wasn't there, I truly appreciate you "scoring" one for us in the Catholics home playing field. (I'm pretty sure that was my first sports analogy ever, so give me a break if I didn't pull it off too well!)

Alexplorer         Mar 18, 2009 4:27 PM
BTW, I have to point out that it pleased me to no end to point out on the altar of a Catholic church that my Catholic mom always loved a gay actor who portrayed an adulterous Catholic priest.  Thanks, Mom, for the irony and the sense of it you left me with.


Postscript: The biggest thing I took away from watching the death process is how inaccurately it is always depicted in popular media, and consequently off poorly we are prepared for the reality as a result of that comforting illusion.  People rarely slip from life moments after delivering poignant speeches or pithy final words.  It's much more gradual than that, and there's a whole lot of unsettling moments in the day or (more likely) weeks leading up to that moment.

Copyright 2009/2013 Alexplorer.
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