A Disney day

Today feels like a true Disney day.  The sun is shining, the birds are singing, all's right with the world - with a nod to Robert Browning as well.

Yesterday, the day was dismal - rainy, cold, lightning and thunder.  I had acute bronchitis, with a spot on my lung that looked like possible pneumonia.  I had chills, fever.  My doctor warned me to stay away from my mother and go home to bed. 

But it was move day.  Nuh uh, doc.  Gotta go.  

Equipped with hand sanitizer and, yes, a mask, I went to work.  Got her physically moved with a few essentials (sheets, blanket, her nightgown, cookies, walker and wheelchair), before lunch.  Hospice moved in the hospice bed and her oxygen. 

Then went home to wait for the second shift.  

My son Kelly and his brother-in-law Chad came at 6:15 that evening.  Put a few things in the truck from my home (bouncing some things back to her that she'd already passed to me).  Then, off to the old place to pack up and move her things.  We got to the new place about 8:45 to find her in bed.  After we unloaded, I whirled around, got things out of boxes and set them out - just out, anywhere.  

She looked so peaceful and content, happy to have a safe space. A home.  And now, her move complete, I can stay home until I'm better and not contagious. 

Today, the sun is shining, the birds are singing, all's right with the world.  

happy happy...

I took Mom to lunch at her new place.  She won't move in til Friday, but we had an advance peek.  The apartment had just been vacated, so she got to see.  The rooms are a bit smaller than her old assisted living place, but since we just got rid of almost all of her furniture, it works out well to have less space to fill up.

The people were lovely.  Elsie agreed to sit with us at a guest table, and though she was pretty quiet, she made an effort to welcome Mom.  Joanne met us in the living room and was funny and friendly.  Mom actually acted like she might play bingo or Rummicube - she liked the people and seemed like she'd be a part of the community.

There were just 28 people in the dining room.  It was peaceful.  People were served food hot, and each table was served about the same time so no one had to eat alone. There was friendly, quiet chatter.

After the meal, we went to sit in the living room, and found a man there. Turned out he was the cook, Mike.  He was in his upper 40s, from Boston, and really funny.  Charmed Mom.  Spent a good part of his career owning restaurants, then came to work for this place 3 years ago.  Loves it.  Recognizes he brings people the last meal they will ever eat, and takes that privilege/responsibility very seriously.  Told Mom she needed to tell him how she likes food - oatmeal with brown sugar, eggs scrambled, dislikes mashed potatoes.  Makes salad with romaine and spinach, not iceberg. Though he's Boston Italian, he has learned how to make meatloaf and Midwest type dishes.  He's a smart-aleck and funny, but respectful. Delightful.

And there's something so comforting, so 'home', about being in a place where the food is welcoming, ample, warm, and familiar.

She repeatedly asked why I didn't find this place three and a half years ago, before she even got into her previous assisted living.

We left content and excited.  Can't wait for Friday.  Will be a challenge ... but totally worth it.

Rinse and repeat.

So, the subtitle of this blog says that this will focus on what Mom's care does to her, but also to me, and to my relationship with my family and siblings. 

I've started several posts, and abandoned them.  They were just rehash of where I've been before, what I've said before.  Nothing new, nothing insightful, nothing really very interesting.  

But I guess that's the point of exactly where I am in this place of caring for Mom.  Yes, I have some adrenaline surging about the poor care in her soon-to-be-former home, and some planning and project-management skills surging in looking for the new place.  Many sleepless nights as my mind obsesses about Mom - last night, I couldn't sleep because of thinking about what we'll do for a dresser for her.  (Silly, eh?) So, there are some recent variations in Groundhog Day. 

But, overall, this is still just 'Rinse. Repeat."  (Which is basically the punchline of, "Why did they find the blonde dead, lying in the shower after a week, clutching a bottle of shampoo?  The shampoo bottle said, Shampoo. Rinse, Repeat.)   

In this blog, I could repeat old themes:  My sister has been great.  My brother does not seem to be very engaged.  I am hungry for my next adventure.  I am honored to have the role of supporting someone approaching death. I have grown ... though sometimes reluctantly.  Same themes.  Same posts.  Same same same same. 

Rinse and repeat. 

Rinse and repeat. 

New hope, but with reality

Mom and I are both eager to get her in the new facility. It looks wonderful, peaceful, friendly, caring, competent.  The best recommendation is a hospice nurse who gave it HIGH marks ... and she knows the place well as well as seeing the real life there.

She gets to move in early, this Friday Mar 4.  Her room will be quite close to the center, limiting the amount she has to walk.  She goes back to a small apartment vs a glorified hospital room, though we need to go retrieve some of the furniture that we distributed.  It will be so much better.

But I also know there will be problems.  Mom will have problems adjusting.  They will make errors, and we need to anticipate a certain amount of imperfection.  It more than doubles my commute to see my mother in my usual daily trips, and I'm not sure whether I may just need to beg off occasionally.

We can be excited, happy, relieved... but we can't expect an idyllic situation free of any frustrations. Realistic, but content.  Sounds good to me.

Tick, tock, tick tock (for two weeks...)

We got an estimated move-in date of two weeks from today, to give the previous resident a week to move out, and to give them a week to prepare the rooms.  Mom is just desperate to get out of where she is, so she can feel safe, welcomed, secure.

Every day, problems continue at her existing residence.  Today they admitted they have lost her beloved quilt. I can't even recount all the problems ... cold food, tasteless food, long wait times for call buttons, tripping hazards and safety issues, bare mattress for a half-day (when she was napping), lots of lost laundry. There is just an unending list of problems, some serious, some petty, and all chronic.

I honestly don't know how this place gets by with it.  I have complained at all levels - to individuals, to the unit nurse, to social work and nursing departments, and to the director of nursing.  I've been promised 'investigation', but have not received any further communication in response. There are still stupid errors and neglect that just keeps happening, even though they know I'm there every day and will complain.  So, I choose to not continue to complain - it is clear that their service will not improve further, and I don't want her to receive any repercussions or negative treatment in the next two weeks.

After she moves, I will have more to say, both to them and likely in some other more public forum, such as a web review.  I feel sad for residents that have no advocate, whose family just dumps them there and rarely visits.  They have no voice, no advocate, and surely suffer the same.  Or, maybe they're just used to neglect.  Sad.

But - woooo hoooooo - she will be truly in a 'home' soon.  Yes, they will make some errors, but surely not like it is now.  I am confident, I am hopeful.

Tick, tock ... but with hope

I went 'shopping' for places for Mom.

I chopped a lot of places off the list due to bad reputation, or low scores from Medicare site.

I found one, a nursing home, that used to be called the 'county nursing home' - but it is well-organized, pleasant.  Her room would be about the same size as her present one, also a semi-private.  But they seem to be better organized, more caring, more individualized.  They have 'neighborhoods' that are managed independently - she would eat with the same small group, be cared for by the same group of staff.  I learned that they pay their staff higher than other places, resulting in being able to keep the best people.  Plus, it's cheaper by a bit.

Then I hit pay dirt.

I know a hospice nurse who told me she has several clients in another place she likes - but it's at the assisted living level rather than a full nursing home. But she said that this place 'goes the extra mile' in helping with ADL's - activities of daily living. They would help her with her almost complete incontinence.  They would wheel her to her meals, if she felt too weak.  They give showers.  They have delicious meals.  They have homey pictures of residents around. They are in a wooded area in the midst of suburbs, but it feels peaceful and like country.

This is where the hospice nurse would go if she needed it.

Plus, she would have her own apartment - a separate living area (with kitchenette), a bedroom, a large bathroom, closets.  Not a glorified hospital room (as in nursing homes).

Plus, it costs less than her former assisted living home (by more than $1,000/month), and almost half the nursing homes.

The downside is that it's farther for me to drive, but it's do-able.  And, if her health worsens, she may eventually need nursing home care (though she is on hospice and has end-of-life wishes to not receive extraordinary measures, so maybe she could just stay there - may depend on regulations).

And they have a room coming available in the next weeks.

Now we just wait for them to come assess her to make sure they can accept her, then wait for the room to open up. But I'm so ... content ... that she'll have a place to call home, where she feels safe and cared for. My heart is light for the first time in weeks.

Tick tock, tick tock.

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.