The last straw

I have chronicled the deficits at this nursing home.  I have complained to the director of nursing.  I have complained to staff.  I have been pleasant but firm about providing my mother good care, but have continued to see problems in this place.  And tonight was the last straw. 

Fecal matter on her sheets.  

How long has it been there?  The nurse saw it and was horrified, and said that their schedule is to change sheets 'when she gets a shower'.  Since the nursing home only gives her a shower once a week (on Sundays), and hospice gives her a shower twice a week, it is presumable that this could have been there since Sunday.  

After she said that the sheets get changed when she gets a shower, I said, "or if there is fecal matter on them, right?".  She said, yes right.  

Also, it shouldn't even happen.  We have hundreds of 30" x 30" bed pads, thanks to hospice over-ordering them.  Her old place always always had one on her bed.  I'm desperate for them to use up these pads, since they are clogging her storage.  

Snap.  I'm done with this place.  

I toured one of the other nursing homes in town, a nice bright one, warm and friendly, and considerably cheaper.  Respectful of residents.  Surely not perfect, but ....  I believe it will be a vast improvement. Her name went on the waiting list today. 

It's funny, I'm a practical woman.  If only her existing place was a great bargain - I could put up with feces on the sheets maybe, or slow service, or pee left in the bedside commode, or my having to remind them about every little thing.  But ... not at premium prices.  Nuh uh.  

Snap.  The straw just broke the camel's back, and I can't wait to pull the trigger.  I'm done. 

Still on the fence ... leave her there or not?

We met with the director of nursing, and aired the lengthy list of issues that we had with the nursing home where she is staying. They were concerned, clearly, and promised to take steps to improve the deficits.  And, she said that Mom is not using her button to call staff needlessly or excessively, which was good to hear.

But are her promises enough?

The next day, her pants had all disappeared.  Every one.  I went down to laundry's lost and found, and went through a double-mountain of lost items, and found at least a dozen items of hers - including some that were clearly marked.

And the staff was snippy, possibly in retribution for her/our raising issues.

And the shower room was strewn with other resident's dirty towels when it was her time for hospice to come in to help her.

But, at least, for once, her oxygen was not empty.

Mom says she's getting comfortable there.  Do I leave her there, hoping that status improves, and that they 'get used to her preferences'?  Or, do we move her quickly before it becomes even more traumatic to move a second time?

And if we move her to another nursing home I've researched with an excellent reputation, will they have similar issues?  It's impossible to research all the potential problems.

I honestly don't know.

Abandon hope all ye who .... ok, maybe that's a bit strong ...

What pushed me over the edge? What was the straw that broke the camel's back?

Maybe it was yet another time when Mom's oxygen tank was on empty. Or the two full, warm opened cartons of milk left til the next day.  Or the poopy laundry left on the visitor's chair and on the floor. Or issues with chaos at meals. Or the nighttime bedside commode left full of urine during the day.

But ... I'm ready to look for another nursing home. Shopping around, again.

This facility was supposed to be so good - we are certainly paying premium prices. And there have been kindnesses to her. And there were explanations and justifications from staff about issues I've raised. But there have been a series of dismal failures, explanations or not.  And I'm very close to moving her.

In addition, she is really unhappy with the size of this place.  She went from a community of 32 maximum residents, with 2-3 staff at a time, to a community of 240 residents and innumerable staff flowing namelessly in and out of her life.

I think it's not a good match.  Very frustrating, very disappointing. Starting over, though perhaps with better results. Sigh.

Misery loves company

Mom is miserable.  She desperately waits for my daily visit.

She is frustrated by the apparent lack of a fixed schedule.  In Assisted Living, the meals were precisely at 8, 12, and 5PM.  Here, with a larger population and varying needs, people come and go as they wish during open meal hours - some might say it's more flexible, but to my mother, it's more confusing.

More staff work at this larger nursing home than worked at her former facility, and she is saddened to not have as close a connection, to not be able to call them all by name.  They just flow in and out of her room, a river of helpers but with less connection, generally (except for the few that have shown particular interest).

She needs more help now, perhaps because she got sick with a cold that weakened her as soon as she arrived, or because she is overwhelmed by the change.  Her continence issues have worsened, though they kindly have helped her.  A couple of days ago I arrived to find her sitting in her chair in a light summer nightgown and with shawls on her lap and shoulders, after she blew through all her pants.  (I've since bought her a much larger supply of pants that fit her.)  It was so sad.

The dining room is further away, and walking to it from her room at the end of her hallway is more of a challenge than before.  So she must decide if she needs to have them transport her in her chair, or, if she's going to try to walk.  Yesterday, she decided to walk, but gave out midway. Someone brought her wheelchair - but then she had a low-blood-sugar incident.

But there are also kindnesses.  Sheryl, the aide who stayed a bit late on her shift to do Mom's nails.  Mary, who patiently helped her during her diarrhea episodes.  The unnamed woman who saw her having trouble walking, and got her chair.  The staff who come to visit to offer activities. The hospice folks who provide stability and support.

Mom is back to talking about wanting to die, NOW.  She says she won't need the summer nightgowns because she'll be dead by that time.  I (again, again, again) remind her of the preciousness of life, that she needs to find at least one thing each day to make someone else's life better.  That she needs to live fully each day of life that she has.  She nods, says yes, you're right... then says the same thing the next day.

And I continue to look for things I need to learn about this situation, to become more whole myself, while I have this privilege/duty in my life.  Today, I'm too overwhelmed with the situation to have perspective, but I continue to seek it.  I hope time helps me find the insights.

(I'm not even going to re-read this to edit it.  Just too... tired.) 

Mom has moved to the nursing home

Mom has moved to the nursing home.

Mom, Marilyn and me

Ah, the passive voice ... "Mom has moved".  Doesn't begin to describe the chaos and labor of the last week.  Before the troops came Friday, I had been sorting, pitching, organizing for a week.  On Friday afternoon, my brother came from a distance on a business trip, and happily was able to pitch in Friday afternoon and the weekend.  My sister and her husband came from 4 hours away and arrived Friday evening, and rented a U-Haul for the move as well as did a tremendous amount of work all weekend.

During the work, we largely ignored Mom Saturday as we went over to her old place at the assisted-living home.  We had boxes for each of us three kids ... sometimes welcomed items, sometimes begrudgingly accepted.

There were piles and piles of things that we just had to send to the trash - the detritus of her life but meaningless to us - such as my father's obsessively copious notes from a 1980's trip to Europe (what was the daily weather, what photos were taken exactly at what locations on each day, indexed by 3-4 different sorting schemes).  Expired food. Shoes that were badly worn.

The shoes touched me.  I recall from a book, The Year of Magical Thinking, that Joan Didion (the author and then a recent widow) was horrified at the idea of throwing away her deceased husband's shoes.  Her irrational thought was, "what if he comes back needs them?"  As I pitched or donated her shoes (pretty, delicate heels, etc) it just felt so enormously sad to think that she wouldn't ever be that woman again.  Same sadness with her art supplies - she's done with those, and off they go.  (Note to readers of this blog - we did bring over to her the pink dresses for her to just look at and remember better days....)

And there were piles for charity donation.  Usable shoes, clothes that no longer fit.  Furniture that was not an 'heirloom'.  Dishes.  Piles.  U-Haul loads of donated items.

Mom in her new home (with my husband on bed)

And of course, the piles of things to go to the nursing home for Mom.  We moved that over, and carefully found places for everything over there in the small area that is now her home.  Her favorite red chair, a chest, a bedside table. An electric bed from hospice, and her wheelchair and walker.  It all fits and feels homey.  Her 'Sleeping Fisherman' painting on the wall made it instantly more homey, more her own Roberta space.

This week I will work on small details like putting more photos on the wall, darkening a too-bright window, changing her mail.  But mostly it's just helping her feel at home, really at home.

An easel and a pink dress

As I went through some closets with Mom, to determine what gets moved to the nursing home, some things brought particular grief.

An easel.  It was just a metal, adjustable easel.  But my mother is an artist, a water colorist, and when we looked at the easel to decide whether it moves, it brought a flood of sadness.  Saying "no" means recognizing that her artist days are done - at least, the productive, "I-can-go-anywhere-to-paint" days are done.  Yes, she could put paint to paper in a group activity in the nursing home, but for someone who painted at the ocean, in the Southwest, on vacations ... it is a terrible loss.

And the long pink dress.  I don't really know what in her life it connected to, but she felt so sad to think that she will never need that again.  That the 'dress-up' days are over.  That she won't feel special and pretty like she did before, when she was a beloved wife and socially active woman.  Miss Topeka, 1937.

There were other small things - scarves and fancy purses, even underwear that she no longer uses now that she needs disposable briefs.  A hundred things that say her life is so reduced that it now fits into a semi-private room in a nursing home.

I've been Miss Positivity, reminding her that the easel only reminds her of a part of her Life, that the Life she's enjoyed is the reality, the joy.  But, I do get it, I understand.  Touching the easel, the pink dress, the fancy purse - brings back a spark of the life she enjoyed.

It's time to grieve that loss.

Persistently Positive battles Deeply Depressed

I'll just start out by admitting I can be obnoxiously positive.  It has served me well in my life, to seek out the life-view that is hopeful, expecting good things.  I don't welcome negativity or hopelessness.  Maybe it's because I lived in a profoundly depressed state for about a decade, receiving professional help.  I dug myself out of that grim time by forcing myself to seek life and health even in tiny bites, tiny steps. Little by little, I'm doing really well for a decade now.  There it is, I've admitted it (in this public blog that perhaps no one even reads... like screaming one's secrets in an empty forest).

So, returning to Mom's move to the nursing home...  I terribly depressed.  I know this feeling, and I don't like it.

My sister told me she is also feeling this awful sadness.  So, I may be sad but I'm not crazy!  (smiling...)

Why is this overwhelming my positivity?

I think it's because the situation just ... merits sadness.  It's a sad thing.  It's a really really sad thing, to acknowledge that my mother needs skilled nursing care. That she is 'disappearing', now even more so, fitting her life into a shared hospital room basically.

I will go see her today to pack some things, in anticipation of her being admitted tomorrow morning.  Her official move day, tomorrow.

Up til now, I've been obnoxiously positive to her, helping her view the change as a good thing, that she will be fine, that she will make a new home there and be happy.  But, I will also tell her how sad I am to her.  I will tell her I've been crying for her loss.  Then I will warn her that I will continue to be positive, confident that she WILL find contentment there. And I do believe that.

Still, it's just so deeply sad.

Yes, a move to a nursing home.

Yes, mom will move to a nursing home, on Friday.  She is still not 'believing' that it is necessary (not believing that she has the incontinence issues, not believing that she has refused help) but accepting.

We visited it today.  It is bright and clean (I guess) and pleasant.  She will have a window, and share a room with Carmen (who promptly fell asleep in her chair after we introduced ourselves).  Mom will have a several pieces of her existing furniture, plus a hospital bed, plus stuff on the wall (photos, her art).

I know she is not thrilled, but is accepting - but what surprises me is my own depression over this move.  It's really so sad.  I know I'll need to do some work to support her (take her to the doctor, change her address, etc) as well as to support her emotionally (visits, pep talks, walk her around). But you'd think this was happening to me. Personally. I'm depressed.

I'm also just getting back from a vacation where we are shopping for "after-she-dies, where-do-we-go" locations.  And I realize she could continue to survive another year, maybe two.

When she first moved here, I recall saying I thought she'd survive maybe 6-9 months.  That was 3 years ago.  Over 3 years ago.  I'm not saying I wish her ill, or even just that I don't appreciate her... just ... we don't know.  We don't know.  And a commitment is for however long it lasts.  Yet - my husband could retire today, and I am already 'retired', courtesy of a couple of layoffs.

I'm the horse in the gate, ready for the gun to go off.  I'm eager for my next adventure in life, but realizing that my commitment here is continuing.  I don't resent it, exactly, but ... when we hear the gunshot, I can promise you that we'll move quickly.

But I remain in a crazy bifurcation - on one side, prancing, antsy, ready to go go go - yet simultaneously creating a new stable routine for my mother, with my daily visits to a nursing home, a new long-term location, a new set of faces to learn, new staff to greet and befriend, new residents to get to know.  New dinner-table, new dinner-companions for Thursday nights. A new place to sit and be ... quiet, be ... still.  And me, prancing, muscles twitching, ready for the next Big Adventure.

Sure, this is about my Mom's move.  But it's also about my ... delay.  My waiting. Until... after.

Reality sinks in...

I visited with the unit manager at Mom's assisted living facility. She assured me that they would do all they needed to for Mom's care, but that her incontinence (and occasional refusal to accept help) makes this the time that we need to move her - or else bring in someone to help her daily so she could stay there.

So, Mom's name is on the waiting list for the nursing home.

My sister mentioned the move to our mom a couple of weeks ago, and we were both giddy with amazement that she took it so well.  I mentioned it again last evening before dinner, and she just then 'heard' it.  Really understood.  She was horrified, saddened.  Shocked.  She repeatedly said she doesn't believe it's that bad.  We brought down the unit manager and she explained it, and mom again repeatedly said "I don't believe it" (that she refuses help with her soiled brief).  Then at dinner she said they were kicking her out.

We continued the conversation after dinner, and I suggested she think about HOW she phrases it when she shares this with her friends there.  Rather than saying "They're kicking me out" (which is ungenerous and untrue), she could say that she needs more care.

She is still reeling, but when I left her last night, better.  I suggested she fully enjoy the 'todays' she has remaining there, not stressing about any future move, not borrowing tomorrow's anxieties (as Mt 6:33 says).

Not sure what I'll find today, but big changes ahead.

A drama...

In the first half of January, I took a 16-day vacation with my husband to South America, and I just got back yesterday afternoon.  It was wonderful and fun and a huge change-of-scenery.  My sister Marilyn was in charge of being Mom's 'person' during that time, and though she lives a few hours away, I was grateful and confident that all would go great.

During that time, the hospice nurse called Marilyn to say Mom was "sitting around all day in her feces" and refusing help, and that due to odors she would need to move to a nursing home facility.  Marilyn handled it great from her location, on top of a busy teaching job, but it was stressful.

And Mom said it really wasn't that bad, that the hospice nurse was over-stating the problem.  She absolutely doesn't want to move from a three-room apartment to a two-person hospital room (basically).

And at Mom's present assisted-living facility, the unit manager said it wasn't urgent and that they were expecting to wait until I got back to handle it.  It appears that the hospice nurse over-reacted.  I wonder if it is just a matter of my mother being unable to adequately clean herself after a bowel movement - understandable with limited range of motion and poor balance.  Plus, let's just say that Mom has never been a slave to cleanliness. So I'm sure the hospice nurse has a point, but I'd like to see if there are options available.

Anyway, I'll meet with them in the next couple of days to find out what's happening.  Poor Marilyn, having to juggle the drama from afar.  But, at some point, Mom will have to be moved, so this was either Step One of that process, or at least a dress rehearsal.

Tiny stitches

After the excitement of the reunion, we are returning to our routine of daily visits, weekly dinners.  Daily comments about wanting to die, followed by my retort about living every moment one is alive. Weekly visits from the hospice nurse.  Daily checks of toilet paper, sore toes, clock accuracy, and making sure the shakes are pre-opened. We are both somewhat tired of it, yet she still treasures my presence, and expresses appreciation.

Today we had a little hiccup.  She had hallucinations this morning, probably due to a recent change in a medicine or perhaps a UTI, but a rush of anxiety and concerns about its implication.   Medicines are being adjusted, and we expect to return to our normal.

After the flash of adrenaline, I returned in my customary visit routine, but really wanted a fresh view.  And it occurs to me that the daily visits, though insignificant individually, constitute those tiny stitches in a petit-point piece of embroidery, a mother-daughter portrait perhaps.  Each stitch isn't really much, but is carefully made to ensure the end product is achieved.

My mother's friend Mayme was making a needlepoint pillow, and on the day when Pearl Harbor was attacked, she added a special stitch, perhaps red, to mark the moment.  How a single stitch captures such an impactful event.

So I continue to count the threads, pull the needle up, push it back down, straighten the thread, count the threads, pull the needle up, push it back down, straighten the threads.  Work until the needlepoint is done, in tiny, nearly-invisible individual stitches.

What's next ... in my very-alive After-Life

Is it wrong to peek around the corner when I'm firmly planted here, helping my mother? Is it disloyal or evil or even just plain tacky?

No.

It's like when you're planning a vacation.  You know you're not THERE yet, the departure is some time in the future, but it's nice to look at websites or travel books to imagine what you'll see and where you'll go.  It's part of the pleasure of the adventure, that anticipation factor. Do a little shopping, get your passport in order. It brings a measure of fun to the days now when in fact life is filled with the routine of life.

So, in today-time, I'm fully here for my mother.  I visit every day. I don't push her aside for my next adventure.  But while I'm doing that, I'm also planning and hoping for my next adventure in life - a move, perhaps to South America.  Or Italy.  A new life. Retirement. A very very different life.

Am I less committed to my mother?  No, not at all.  I will be here for her until her end.  And if you've read earlier posts, you know that she is more eager for her own end than anyone else.  That makes me a little less guilty, perhaps.

But I'm still planning for ... after.  After.  After her death.  After her estate is settled.  After her apartment is cleared and I am not needed by her.  After.

I had an interesting exchange in another blog, Kickboxing In A Wonderbra, about this subject.  It's really not about running away from anything, but about running toward my next adventure, the next (risky, thrilling, challenging, frightening-but-rewarding) adventure.  A simplification of my life, a moving toward community and volunteer opportunities and a much much quieter life. Less insulated, less choked by layers and layers of possessions.  Like the delicious feeling the breeze on one's skin for the first time in springtime - more alive, more connected.

But since such a drastic change - the After - a move out of the country perhaps - requires a great deal of work, I admit to spending considerable time now preparing our house for sale. Getting rid of box after box of books, stuff, getting ready for a mega-garage-sale. Painting walls, upgrading faucets. Handing over family heirlooms and ancestry artifacts to the next generation.  Planning how to handle furniture and paintings and a lifetime of photographs.  Figuring out how to reduce our big, noisy, fully-stuffed life down to a few suitcases.  Walking away from the big footprint of our lives here. Walking away.

And it strongly occurs to me that I am greatly reducing the footprint of my own life, just as I observed about my mother's life as I began this blog three years ago.  Am I disappearing?  No, I am creating an essence of what is really important, and immersing myself in that.  Choosing the fullest life possible. 

Waiting for death - whose problem is that, anyway?

I like that title for this post, but I don't even know why.  I may change it, or, I'll discover why as I write.

After writing the last post, about Mom wanting to die even in the midst of loving family and laughs and warmth, I felt like I should write something about the efforts we have made to ensure she has a rich life.  I wanted to write about what we've done to help her want to live. A great assisted living facility with loads of activities and personal attention.  A number of nice folks up and down her hallway and at meals.  Frequent phone calls.  Daily visits. Books for the Blind.  On and on.  But she chooses to sit and flip TV channels and wait for death to come.  It's a source of great frustration to me and my sister.  We nag, we scold, we cajole, we make deals, we offer ideas.


And then it hit me.  This is not about me or my efforts.  This is about her and her life.  


This is NOT about me being a good-enough daughter.  It's NOT about my needing to create purpose or joy in my mother's life.

I only need to offer what I have available.  She accepts it, or not. But either way, she is responsible for her life, her own happiness and meaning. Her engagement - or lack of engagement and meaning.

My sister and I have talked about this a lot.  She is angry and frustrated, I am sad and frustrated.  She said she would like Mom to be more like a friend of hers who is a wonderful exemplary strong odler woman who remained interested in life and engaged and inspiring through very-old-age.  She wants more for Mom.  I also want more for Mom, but I tend to feel that she is doing all she can, probably, or at least all she is willing to do.  More accepting of 'as is' rather than what I'd wish for her (or wish for me, at that age).  My sister's eagerness to make Mom into more may be really good for Mom - or it may be just frustration on all sides.

And we can grieve that she is not that amazing woman that others turn to for inspiration. She is quite ordinary.  She's tired and wants to die.

Our reactions to this situation play out, to some extent, an old family story.  When I was about 7 or so, (and my sister a bit younger and my brother about 4 years older), my brother bought a little chick at the grocery store just before Easter, a gift to my mom.  (Yep, they did that back in the 1950's. Bad idea.)  The chick followed my mother everywhere, peeping constantly.  One day my family all went out for a few hours, and we put the chick in a box, and we put our puppy in another box.  When we came home, both boxes were upturned and all that remained of the chick was a foot and a feather.  The personalities of the 3 kids are what have played out to this day, to some extent.  My little sister was furious, I was crying, and my brother shrugged and complained about "Sixty nine cents down the drain".  And even now, we find ourselves in similar reactions - my sister's anger, my sadness and depression.

Frankly, I think I will approach old-old-age better, thanks to this experience with my Mom.  I intend to squeeze every bit of life out of the life I still have, right to the end.  I want to stay engaged, curious, purposeful.  I want to contribute to community and Life.  I don't want to die before I'm dead.

So Mom's waiting for death - whose problem is it?  It's hers.  I can help but I can't make her into someone else, not now, not ever. She is herself, and I am me. It's freeing.  I can breathe.  But I only need to breathe for myself.

Holding her breath until the reunion... then, exhaling and waiting for death

My mom had been eagerly awaiting a family reunion in November.  She turned 90 in September, and basked in the glow of attention and fussing over her.  In November, she helped everyone (19 in all) to get here and to spend time together.  She has been extremely focused on the reunion ... the reunion...  the reunion.  That's what we talked about for a couple of months.

And it went off GREAT.  All had a wonderful time.  Everyone fussed over her.  And it was blessedly short (just a long weekend), short enough that we didn't kill each other.  I was able to distribute some family artifacts that I'd been holding onto.  She distributed to her children and (adult) grandchildren some jewelry items but at a time when she could tell them directly the story of each one, rather than waiting until her death and people shrugging, not knowing what these things represented.  It was a great success.

And smack in the middle of a dinner together, where all were having a lot of laughs, she announces, "I just want to die".  OK, I'll be honest, she said that at least 10 times during the weekend.  Or, I just stopped counting at 10 times.  Yeah, that'll quiet a room.  And, to say that during a great family dinner is just ... odd.  Sure, maybe during a colonoscopy or over a dinner of liver and onions.  But, at a meal surrounded by your loved ones, and everyone having such a great time?  Sad.  She's just tired.

Then the morning came when the reunion was over.  Everyone had gone home.

And I am there with her, every day, back to just the two of us, and Groundhog Day resumes for each of us.  Tick tock. Waiting.

A new phase approaches

Deep sigh...

My mom is now completely incontinent, urinary-wise and with a measure of fecal incontinence.  Plus, she doesn't want to change her briefs when they become wet, due to a combination of laziness - by her own admission - as well as an aversion to 'wasting money' on briefs and unawareness of her own urination.  So she is at now at risk of needing a nursing home instead of her current assisted living arrangements (one bedroom, one living room with a kitchenette, private bathroom, nice lake view).

And, with her occasional low blood sugar issues, there are some safety concerns, both with any dangerous low blood sugars as well as any associated falls.  She is also on oxygen 100% of the time, 24x7, though she has resisted doing so, at least up until our conversation yesterday.

Yesterday I told her that the potential consequence of wet and overflowing briefs is ... moving to a nursing home. It was not a happy conversation.

Today I checked out nursing homes.  One was straight out of central casting of One Flew Over The Cuckoo's Nest.  Awful.  The other was clean and orderly, but with her sharing what is a very small hospital-room space.  I've toured yet another, a little further from me but associated with her present facility, and though she'd likely share a room, the place is clean and pleasant and comfortable.

So, as I consider the title of this blog, her life is soon contracting further, from a 3-room apartment to half of a hospital room.  Soon, with a poof, will she just vanish?  She is miserable, and wishes that to be sooner rather than later.  Poor disappearing mother.

Three-year anniversary

My mom has been in her assisted living facility for three years now, as of a couple of days ago.

Wow.  Honestly, when she first got there, I thought she would only live six months or a year, maybe two at most.  She was disoriented and suffered various health challenges.  Good care has extended her life for these three years, and though she is weakening and declining, she remains pretty sharp, even sharper (maybe) than 3 years ago.

Three years.  Surprising.

Clock-checking

Mom has a curious obsession with the time.  She is adamant that, every week or two, I MAKE SURE that each clock is set exactly correctly.  I have to look at my cell phone (which I assure her is set to the Atomic Clock), then look at each of her clocks to be sure they're still right.  She has an electric one, that is of course always correct, and a battery-powered one which I suppose could lose battery power.  And she has a mantle clock which does need occasional tweaking by a minute or so back or forward.

But ... why is the exact time so important?  She doesn't have an intensely scheduled day.  It's curious to me.

More Groundhog Days....

I keep on visiting.

Her toe hurts. Her toilet paper roll needs to be changed.  We chat about Evelyn's latest antics and forgetfulness.  I ask if Bob or Marilyn called, or if she's called Violet.

And we sit in some silence.

She does ask about me and my life at times, and I reply, but I need to be concise because she'll lose interest fairly quickly.  Her eyes glaze over a bit and she starts looking around.

She was very happy with the outcome of her 90th birthday.  She got some nice flowers and a stack of cards.  A few folks visited.  And the flowers are (most of them) still sitting on her desk, dead, but she wants them.  And the balloons in the mylar will stay up for about six months, and she'll leave them there I'm sure. Maybe I'll sneak a little air out each visit so she lets me clean them away.

She doesn't listen to the Books for the Blind tapes.  "Too much trouble" - though I've queued it up and all she has to do is lean slightly to her left and push the giant green button.  Too much trouble.

So she turns on TV and watches the Animal Planet or the Weather Channel or Dr Phil.  And waits for me to come visit so we can discuss her toe, or her toilet paper roll or Evelyn's antics.

Deja vu all over again.  Sigh.

An impossible request, and, not-enoughness

My mother said to me, "Nancy, I need MORE of you.  MORE."

I visit every day, usually for 45 minutes to an hour or more.  Occasionally I can 'only' visit for 15 minutes.

I said, "Mom, you can't have more of me.  I'm giving all I can.  But, out of curiosity, what would be the perfect amount, in your view, if I could give it?"  I was curious how much I was failing her idea of perfection.

She thought about it a moment.  "Three hours."  A day.  Three hours a day, she wants me to sit with her.  Hang out with her.  Be with her.  Attend to her.  Help her feel less lonely.  (Lonely, though she lives in a home with dozens of other lonely people.  Lonely but lazy by her own admission.)

"No, you can't have three hours.  I can't do it.  Mom, we run out of things to say after three minutes!"  She agreed that three hours was probably not reasonable, then in the next breath, she said she wanted it.

I pointed out that her repeatedly saying 3 hours really told me that whatever I was already giving is just not much in her book, that she doesn't really appreciate it and it's not enough.  Never enough.  Never never enough.

She told my sister (who lives out of town and is a great supporter of my efforts) about the request for three hours a day.  My sister said, Mom, when your father was alive, how much did you visit him?  When your mother-in-law lived just down the street, how much did you visit her?  (I probably visit her in a week more time that she gave her father in a year).  She responded, "well, now I'm embarassed."  She got the point ... then the next day when I arrived, she mentioned the three hours again within the first 15 seconds.

Impossible.

Ethics of allowing vs facilitating death at the end of one's life

I received an interesting email about a woman whose husband suffered terribly as he approached the end of his life, taken from a New York Times article.  In this article, the wife, still in good health and with great love and loyalty to her dying husband, struggled with the possibility of deactivating his pacemaker to allow death to occur.  A point came where death became much more merciful instead of allowing a machine to extend a miserable life. 

My mother has repeatedly, yes even insufferably, talked about her desire to die.  To have her life end.  

I believe she feels this way out of boredom, because she chooses to sit and wait to die rather than embracing her remaining days.  Vicious circle. 

I think if she really understood that her pacemaker keeps her alive and her heart beating evenly - somewhat against her will in recent months - she may even want to deactivate it. (Removal is not necessary since it can be deactivated permanently or even temporarily with a big magnet.)  

However - now I think about ethics questions.  In my own mind, whether she is right or wrong to want to die, the pacemaker is artificially extending her life.  The 'natural' state for her is to have a slowing heartbeat that eventually just stops.  So in some sense if death is acceptable or desirable, then deactivating a pacemaker may be a 'natural' way to allow death to come when it comes.  In visits with my sister she compares it to stopping taking one's medicine, and while I resisted that comparison at first, it probably does fit well. 

Doing so seems uncomfortable to us, the living, but is what I would want if my situation were as desperate and hopeless as described in the family in the New York Times article.  

Now the ethical quandary.  My mother is very much alive and although she is bored, she has potential to live, to learn, to help others, to be a part of others' lives. I repeatedly urge her to 'live every day she is alive', as readers of this blog well know.  Instead, it's Doctor Phil and waiting for Nancy. And endless same-ness of each day.  Groundhog Day at age 90.  I do all I can but cannot live life FOR her.  I cannot turn a life of self-absorbed boredom into one of delight.  I do make a difference for her daily in my visits of 20 minutes to 2 hours or more, but I cannot become the 'fun-ness' for her life.  

So, I ponder, is it unethical for her to contemplate such actions to speed the natural end of her life?  Is it unethical for me to describe to her the potential for her to take such an action, knowing that she may choose to take such a course even if I think it is a unnecessary (and possibly even immoral) waste of human life?  

For the most part, I am her support and am there to facilitate her wishes.  If her wishes are to speed death, then whether I would take that same decision or not, I tend to be willing to support her.  But I know I can filter information that she receives.  Where is the line drawn in controlling versus supporting?