Old and Alone

There was a heartwarming story in the Arizona Daily Star while I was away.  A family, out in the early morning, delivering the Star, saw an elderly woman lying on the ground.  Wearing only a shower cap, underwear and socks, she was frozen on the sidewalk.  They covered her with their coats and spare blankets from their car. The dad lay next to her, blowing warm air on her face while the mom called 911. Less than 10 minutes later, professional help had arrived.

They saved her life.  She spent five days in the hospital, thawing out, and is now on her way to Milwaukee, to live near her daughters.  The retirement home in which she's been living threw her a going away party, and invited the family who rescued her. She greeted them with a hug and a kiss and these words:  I don't remember you but I love you.

Her friends described her as a socialite and a fashionista.  I'd call her mildly demented and unsafe to be living alone.

This story is the nightmare of all of us who have parented elderly parents from afar.  Did she get lost on her way to the shower?  Did she mistake her shower cap for a stocking cap, thinking it would keep her warm?  Were her shoes too difficult to put on, or were they never considered?  Did she forget the purpose of her LifeAlert button, or did she have one at all?  What if that family had not noticed her?

Respecting a parent's wish to live independently is what we all hope to do.  It's what our parents expect us to do.  It's what we'd like our children to do for us.  G'ma was emphatic - I want to stay at home.  We took that as a dispositive answer; she seemed safe enough, she wasn't all that forgetful, and her wishes trumped our concerns.

In retrospect, we should have stepped in ten years before.

Daddooooo's medications, over which she always had had control, were being given haphazardly. She couldn't keep it straight - did the pill go down with food or without food.  I discovered the problem while helping my Dad change before my nephew's bar mitzvah.  The pill container was on the sink in the hotel bathroom; G'ma had not followed the instructions and his breakfast was now all over his shirt.

She laughed about coming downstairs and finding a light still burning on the cooktop.  Her refrigerator was filled with half eaten containers of food she'd ordered.  She was reading books while holding them upside down.

We denied the evidence.  It was too overwhelming to consider that our mother was losing her mind.  The thought that she who had ably cared for us now needed care herself was anathema to her and to her children.  So, we lived in blissful ignorance.

She got lost while walking in her retirement neighborhood in New Jersey.  She flagged down a policeman, showed him the address card Brother had created for her, and asked if the officer would aim her in the right direction.  He, graciously, offered her a ride to her front door and she, ever the lady, accepted.  My sister was beside herself, and I brushed her concerns aside.  No harm, no foul, I said.  She solved the problem herself.  She enjoyed a long walk and had a good night's sleep after all that exercise. What was the problem?

The problem was with me.  I could not accept that she needed help.  I didn't want to start down the path of becoming her caregiver.  As long as she put up a good front, I was willing to leave her alone.  Even when she moved to Tucson, she lived in a congregate living situation, but without help.

That worked until she began falling.  We hired full time caregivers, just for a while, until the casts come off, Mom.  The casts came off but she couldn't find her way to the dining room any more.  Worse, once she got there, she ate alone.  The more competent ladies with whom she had formerly shared meals were put off by her forgetfulness.  They no longer wanted her company at dinner.

That was the final straw.  I had moved my mother back to Junior High School.  She was shunned by the cool kids.  On my own, I began a tour of facilities with more comprehensive care, and was lucky enough to find The Pod Castle just two miles down the road.  She lived in her own, small apartment, but caregivers checked on her every hour.  She was reminded to join the other 15 residents for meals. Someone stayed in her room while she showered, just in case. 

As she aged, and became more infirm, it was a small step for the caregivers to move from the chair outside the bathroom door to the seat outside the roll-in shower to helping her wash her hair.  The transition was easy for everyone but me.

I still saw her as independent, strong minded, capable.  I was living in a fantasy world.  Once I was able to accept the fact that the Mommy I knew had been replaced by a Mommy I was meeting for the first time, things got easier.  I never made peace with the forgetfulness piece, but she did.

Will I remember more if I get angry?  I don't think so.  Besides, who wants to be around a cranky old lady?  

Her judgmental attitude disappeared, replaced by a kind acceptance.  Though my siblings tell me that I helped her through the hardest times, I disagreed then and now.  She was a much nicer person in her dotage.  Her default response was Whatever you think is best.

I could assume that responsibility because we had been talking about her failing memory for years. What would we do when she could no longer recognize her grandchildren?  What about when driving was no longer safe?  Where would she live out her remaining years?

Luckily, Arizona's mild temperatures were tempting to her on a frigid New Jersey afternoon, and I swooped in and moved her here without protest.  She was willing to consider living situations which had been rejected out of hand just months before... months during which she lost the ability to read a menu, to make a doctor's appointment, to pay her own bills.  I think that she was glad to have someone else be in charge.

I shudder to think of how difficult it would have been had we not been talking about this over the preceding years.  I had a good sense of what she wanted, and she trusted me to listen and make it happen.  A lower cost of living here gave her choices, and she was happy in the Pod Castle, having her meals and laundry and entertainment provided.

I wonder if the nearly-frozen-to-death lady and her daughters had had those talks.  I wonder how their mom convinced them that she was perfectly fine.  I wonder if they are berating themselves for allowing her to fall victim to living in a less restrictive environment than she needed.  I wonder if they or the facility made the decision to move her out.

Growing old is not for sissies, as Bette Davis reminded us.  It helps to be prepared.

Missing G'ma

I'm remembering a phone call with my mom, a few months after Bubba, her mother, died.  I'd been regaling G'ma with stories of her wonderful, beautiful, magnificently talented and brilliant grandson when I heard her sigh.

G'ma was not one for deep sighs.  She wasn't the kind of mother who shared her sorrows with her children.  She was there for us; it never occurred to her that we should be there for her.  So, when I heard that aching exhale, I stopped chattering.

The silence was powerful. 

In a moment, one I am sure was shorter than it felt at the time, she collected herself and, with a rueful laugh, explained that, while my stories were wonderful, they also opened a hole in her heart.  "There is no one with whom I can share this," my mom told me.  "It will sound like bragging to anyone else."  Bragging.... the antithesis of her socialist upbringing... she couldn't make herself tell my aunt or a neighbor about her marvelous grandchildren... they would see it as a means of drawing attention to herself.  The tales were fabulous, the kids delightful, and the stories had no place to go.

She missed her mother.

I'm channeling her pain right now.  Little Cuter is filled with love and excitement as FlapJilly (Flapjack is no longer a gender appropriate sobriquet) dances up a storm inside her ever swelling belly. Her sideways photos, designed to show her expanding girth to a mother living too far away, are just about filling the frame.  I have no one to laugh with about it.  It's a small story, not worthy of mentioning to anyone except my mom.... and she's not here.

I'm trying, not very successfully, to avoid being that grandmother.  Big Cuter saw the same peril when he reposted the first ultrasound picture on his Facebook page, apologizing for becoming that kind of uncle before announcing that, in fact, he did have the most adorable fetus-in-his-sister-on-the-planet.

A coyote just walked across my front yard.  That's the kind of mini-moment I'd share with G'ma.  We'd go round and round with coyote-Arizona-Tucson-desert, over and over, laughing at her failing memory, smiling at the wildlife in our surroundings, passing the time. 

There's a yellow and black butterfly with a 6" wingspan fluttering over the lantana.  G'ma would know just what kind of butterfly it is, and she'd enjoy sitting on a lounge chair, watching it carouse.

Those are the moments that tug at my heartstrings.  Not the she won't be there for the baby's birth; she danced at the kids' wedding and that was as far as any of us chose to prognosticate.  She lived a long, full life.  She was neither a burden nor a problem as she meandered through her final months.  I wished that her ever diminishing life would come to an uneventful close, and I got that wish. 

I kissed her good night and she didn't wake up.  At the time, I was happy that she was finally at peace, that the half-life masquerading as her existence was over.

I had no idea that I'd be sitting here today, wishing for a few more of those minimal days.

Packing up G'ma's Stuff

And it's all stuff.  

Anything remotely valuable or marginally sentimental was distributed when she left the East Coast for Arizona.  What she had left were trinkets.  They made her smile, especially since someone else dusted them twice a week.  Somehow, they've taken on new importance since her death.  

A $10 small river rock painted with a blue bird's face was claimed by several relatives across the generations.  The gorgeous glass paperweight was on everyone's list. I received emails and text messages and picture-grams with circles around the items that absolutely had to be sent so that G'ma could be remembered.

Apparently, the crewel work pictures are stretched on important frames; I am not to release them from their bonds. There are many reasons families should live close to one another.  Having to ship 6' long framed stitchery is only one of them. It's not as if I can throw them out, of course.  They are my mother's creations,and her grand-daughter wants them. I'm having fun imagining G'ma imagining her crewel work as hipster art in Brooklyn.  She's pretty pleased, with that smile that truly reached her eyes.  The one she saved for those she loved and those who loved her back.

Olga, activities therapist extra-ordinaire and true friend to G'ma, took two of the hooked rug pillows G'ma had created in better days.  For her husband, she took the mini-ceramic cask of Irish Whiskey, a souvenir trinket from someone's trip to Ireland.  At 3" tall, it will make a small but significant statement in the home of two emigres. My mother will be remembered.

This is how I'm getting through touching things that touched my mom.

 I am creating smiles where there are incipient tears.  I'm refusing to go down the path to sorrow.  There is not a reason in the world to be sad.  The mother I loved was lost to me years ago; this incarnation of herself was not one she'd have asked to live.  She was always smiling, never kvetching, ready with a solution or a chocolate bar to soothe your soul.... but it was a half-life at best.  She lived nearly 91 years and died with a kiss on her cheek.  There is not a reason in the world to be sad.

Except for this giant hole in my heart, that is.

I've boxed up photo albums and ceramic bowls 

and I'm sending them back to their people.

I'll take the pictures out of this ghastly frame

and send them back East to be scanned.

It's all we have now, so it has to be enough.  

I'm trying really hard to make it be so.

I'm Having a Hard Time

My thoughts won't stay focused.  I begin to opine about sequestration, and I wonder how I'd explain it to G'ma.  I listen to a fascinating four minutes on health care costs and consider that post on where does the money go which I've been trying to write for a year or more and then I devolve into thinking about how much G'ma's broken leg cost the insurance company and Medicare.  I wander into the room where TBG is watching talking heads and I burrow into his chest for a hug and a kiss.

I miss my mommy.

The post you read yesterday was written the afternoon before she died.  I had it scheduled as a buffer between remembrance and reality.  I just re-read it.  I don't think I could write that right now.

It's an olio for sure, but one without G'ma.  Since she died in her sleep two Thursday's ago, I haven't had three thoughts in a row without my mother poking herself into the stew.  In the grocery store, every second customer is a mother-daughter combination.  I can't leave the neighborhood without passing her pod-castle; I still wave and say "Hi, Mommy," as I drive by. I wash my Revereware pots and channel her telling me that they would last forever; thirty-eight years and counting and they are still as good as new.

What I can't get over is that there will be no new events to remember, no new memories to be made.  I want a hug and Mom is not here to provide it.  Never will be.  Ever ever again.  My brain just doesn't want to get around that.

Big Cuter likes to think about infinity and what's outside the universe and was surprised to hear that those conversations give me a stomach ache. Recognizing the finality of my mother's passing is giving me the same kind of willies.  I can't understand it.  I have no place to put it.  I don't know how to frame the conversation with myself.

Hospice has a bereavement group, but I have a lunch date at the same time so I won't be going this week.  Last week felt too early; I didn't need any help to cry.  Perhaps next week, for ninety minutes, I'll be ready to share the grief.  I know that help is out there; they called and reminded me about the group and asked if I needed anything, anything at all.

They can't give me what I want.  I thanked her for calling, hung up the phone, and bawled.

The tears come and go.  They don't last for long.  When I think of how peaceful she was, how ready she was, how in control of the situation she was, I find it hard to do more than smile.... through the tears... which are for me and not for her.

We were so lucky, my family and I.  We had no hard decisions to make.  We had no awful pain to watch her suffer. We had caregivers and family members and a mother who was considerate enough to die early in the morning so that we had all day to take care of the paperwork.  A Sunday funeral was convenient for everyone; once again, G'ma was looking out for us all.  She lived a long life, had an easy death, and I am, from time to time, able to smile about it all.

That's a good thing.

She's Gone

Esther Tamara Rukasin Annis

Born February 19, 1923

Died December 5, 2013

A smart, thoughtful, interested and interesting woman.

A loving grandmother and mother and aunt.

She is wallowing in chocolate, Hershey's kisses on the side, 

watching Christina-Taylor jump in mud puddles.

Listen in to the conversation:

"You're getting filthy, sweetheart!"

"It's fun!"

"Come, have some chocolate.... take more... don't be stingy with yourself."

Peacefully,in her sleep, surrounded by her memories and supported by Hospice and staff and family,

she left this world and is now reunited with the woman she used to be. 

Sad but not tragic, her loss leaves a void to be filled with good books, loving children, and more photographs than any family should ever collect in ten lifetimes. 

She will be missed and remembered.

*****

I'm taking a funeral hiatus for the next few days.

The Burrow will feature a series of G'ma related posts.

I hope you enjoy reading them as much as I enjoyed living them.

Deciding on Hospice

There's so little left of what used to be my mother.  She's toothless and listless.  She's not eating because she's not hungry.  Even chocolate can't entice her to put sustenance into her body; the same large bag of Hershey's Kisses has been in the bowl at the side of her chair for two months now.  When G'ma's not eating chocolate, you know there is something amiss.

She's still sparkly when I walk in the door, but there's no gleam of recognition beyond responding in kind to the smile in my eyes.  She knows she's supposed to be glad that I am there; she just doesn't remember why.  I remember when that kind of forgetfulness made me very sad. Now, it's just part of the gestalt.

She weighs less than I do, which is wrong on so very many levels.  Losing twenty pounds since May has left her without any padding. Her pants fall down unless her underwear is bunched up, preventing gravity from undressing her in public.  She's always cold, without fat to keep her warm. Add together her lack of energy, her thin skin, and the lack of adipose tissue and you are looking at a recipe for pressure sores.

She has no oomph at all.  Standing up from her recliner is a major effort.  Once she's up, she's too pooped to pop, too tired to move her legs to walk, too achy to exert the effort needed to get to the dining room. The staff has been wheeling her to her seat for the past week or two; there's just not enough time to spend assisting her with the walker.

Once she's at the table, she stares at the pureed food before her and falls asleep.  The ladies who sit with her are understanding and supportive.  There is no judgment, just an acceptance of the fact that she is fading away.

Pain medication is available to her upon request.  The problem is that she forgets to ask for it. G'ma's never been a complainer. When she winces as she's being dressed and aide will request Tramadol or Vicodin; aspirin and Advil have long since lost their effectiveness.  The heavier drugs leave her even more lethargic and non-responsive, though.  It's a difficult ledge on which to balance.

The med tech at the pod castle called a hospice care provider and signed my mother up for services. The fact that she was not entitled to make that decision or that phone call did not impede her.  I received a call from a nurse who was just about to go in and see your mom. She saw G'ma, I canceled the agency with a phone call.

Instead, I called Casa de la Luz, a hospice provider whose first order of business was to assess my emotional situation, then set up an appointment.  The intake nurse met us at the pod castle on Saturday morning.  She brought paperwork and information and a packet of papers and booklets to be read at my leisure.  That was quite different from the med tech's preferred agency, which left only the permission to treat sheet in G'ma's room. Does the med tech get a kick back from the agency?  One wonders.

If you are taking notes, this is the first lesson I learned: shop around and choose a place that warms your heart. Convenience for the care givers is secondary to your own well being.  I felt bullied into following the med tech's orders.  It took TBG quite some time to talk me down off the ledge and aim me in the right direction. Clear thinking is among the first things to disappear as the end nears.

The treating nurse met us this morning at the pod castle. She had no paperwork for me, just a warm smile and a gentle manner with my mom. She saw the lumps which are disturbing but will remain untreated. She measured the circumference of G'ma's upper arm and pronounced her skin and bones. It still makes G'ma laugh to imagine that she weighs less than I do so that is where we took the conversation. There is little left to waste away. She is a structure over an emptying shell.

There will be a hospice provided high-low-raise-the-head-special-mattress-equipped bed arriving this afternoon and, once again, I'll be asking the Fire Chief to move the regular bed out of her room and into.... where?  No charity wants a used mattress; I've called and been refused so many times that I'm giving up. Perhaps one of the caregivers would like it; they are not allowed to ask for items but may accept them if they are offered.  These are the details that distract me from the fact that my mother is transitioning.

That's the current terminology - transitioning.  It's a lovely word, reminiscent of the nesting I did before Big Cuter was born. I was moving from one part of life to another. It was happening without much effort on my part, just as it is for my mom. I washed and folded and straightened and decorated and waited.  She sits and yawns and sleeps and smiles and waits.

What goes around comes around and I am not enjoying this carousel ride at all. I'm well supported and not surprised and I know there is nothing I can do except keep her happy and pain-free and unafraid. Hospice offered a chaplaincy visit, but G'ma's response was classic.  For one brief moment, my mother was back.  With a raised eyebrow and a tilt of her head, she responded to "Do you want a Rabbi to come and visit with you?" simply and totally G'ma: "No. What the hell for?"

If she can smile, so can I.  I am so going to school on being a very old person by watching my mom dwindle.  As always, she's showing me the way.

Really, G'ma?

I've been preparing myself for the end for a week or two.  She was pale, she wasn't eating, she was rarely awake. Her back hurt, though the x-ray showed no damage.  Never exceptionally energetic, her condition made listless look perky. As the gerontologist said, she was beginning to fade away.

I sat and watched her sleep. I rubbed her feet. I snuggled up close to her in her bed, gently resting my hand on her shoulder.  She doesn't like back-rubs, so I resisted the urge to touch more of her. I wanted her to feel the connection, though, to know that I was there even as she rested with her eyes closed.

I was getting ready to let her go. I wasn't surprised that she was ready to leave.  Everyone is dead, or lost in the fog of senility. Food - even chocolate - held no allure.  She didn't want the television turned on.  She just wanted to lie in bed.  She was checking out of this life, moving on to another, better, place.... at least that was what I saw.

The blood work results came back on Monday; there was an infection and an antibiotic would be prescribed.  Her end of life plan includes medications but no procedures (beyond podiatry... we don't skip those Medicare provided pedicures...even if nail polish is not included). I approved the prescription, because I'm not ready to take active steps to end her life. She doesn't mind swallowing pills, as long as the caregiver announces their purpose. There was no reason not to medicate her.

The vicodin was masking the pain, but turning her in bed or helping her up from her chair still led to complaints.  When she hurts, she doesn't want to move. Since she never really wanted to move in the first place, even without pain, there wasn't much difference in her behavior. It was in her eyes and in her affect that I saw the change.  There was very little spark left.

It was sad. I moped a lot. I found myself staring off at the clouds, thinking back to childhood memories and caching them for the future. I was preparing myself for funerals and family. I was making a mental list of what to cancel, who to call, when to pack.  I was not going to be caught unawares.  G'ma was giving me plenty of time to get organized.  I thanked her for her consideration.

I had moved beyond sad and into containment mode. I was ready to deal with being an orphan. And then I went to see her yesterday morning.

She was sitting up in her chair, eyes open,watching TNT. She smiled and her eyes twinkled and she reached her hand up to grab mine.  "Look who's here! Hello, sweetheart! What brings you here this morning?"

All I could do was laugh.

"What's so funny?  Did I make a joke?"

"Mom, you were at death's door for a week.  Now you are acting as if nothing happened.  I'm just surprised, is all."

The look on her face was priceless.  Quizzical and delighted all at the same time.  She'd flummoxed her oldest child, and that always made her feel smart. She'd escaped from the jaws of the unknown, and that was a good thing.  She had no memory of languishing. In the here and now, she was fine and I was laughing. Life, as she knew it, was good.

What was my problem? Why was I so peeved?  I really couldn't say.

All that preparation for nothing.  All that worry and sorrow wasted.  I couldn't know then, but I do know now, that I wasn't ready to let go at all.  I want her to know that Princess Myrtle is leaving Asia for California. I want her to meet the dog we may be adopting. I'd like to have her at the Stroll and Roll and Thanksgiving Dinner and there's no reason she can't be.

The woman refuses to die.  I couldn't be happier.

I'm Empty

Thursdays are good days. I love my Pilates foursome, a mid-morning gathering of women of a certain age, each with our individual aches and pains, but all of us committed to the method. JannyLou and I drive up together, and there's just enough time to catch up and feel the love. I missed it all this morning.

The House Manager at G'ma's pod castle interrupted my morning routine. G'ma was in pain. She was unable to remain in the dining room during breakfast.  Nausea, perhaps from the pain, sent her back to bed, with a Tylenol or two to ease the aches.  The doctor had already been faxed and would be called when the office opened at 9.  Did I want to come over and see her?

No.

I didn't want it to be happening at all.  I was on my way to my own rehab, to a pleasant morning of movement and chatter followed by a walk around the Prince Playground with goblins and ghouls and ghosts. I didn't want to enter to cavern of care toward which she was beckoning.

Of course, I went.

G'ma was asleep when I arrived and she stayed that way until the doctor arrived four hours later. She didn't budge in the bed.  I didn't check to see if she was breathing.  I looked at her, curled up under the Horace Mann blanket, atop the covers because that is where one naps,  and then I sat in the orange upholstered chair we'd carted from Long Island to New Jersey and across Tucson. It's filled with memories of grandchildren sprawled over its arms, reading over the sitter's shoulders and elbows. We might not have been happy, but we were healthy.

I wish I had those times back right now.

I distracted myself with Mark Helprin's latest, a story about a young man exactly my father's age, living in post-war New York City. My dad has been on my shoulder ever since I read the opening paean to Manhattan; he was with me as I listened for his wife's breath this morning. Those were four very long hours.

The gerontologist is a Birkenstock wearing, jeans clad, two-hoops-in-his-left-earlobe 40-something who meets G'ma, snark for snark, with a big smile and a knowing look.  It's quintessential New York, though I'm sure he's never been there.  It makes her smile, connecting her to that which is, in some way, familiar.  She has the patter, the answers, the pace.  For the moment, trading barbs about her refusal to roll over so that he could listen to her stomach, I was seeing the woman she used to be.

Whatever the cost, for that moment, the home visit was a bargain.

She looked skinny to him, and, though I hadn't noticed it, she has lost twenty pounds since last spring. She is now officially thinner than I am.  This is not right, and she knows it. That fact caught her attention, and she began to wonder along with us why she wasn't eating. We were having a conversation, and I didn't want it to end.

Her digoxin will be discontinued, in case the dose is becoming toxic as she loses weight. She will have blood drawn and x-rays taken and a plan will be created. "We're not doing anything drastic," he reassured me. He remembers our end of life conversation, the three of us kneecap-to-kneecap, and he knows that this is exactly the situation she wanted to avoid. He knows that there is nothing we can do about it.

"Perhaps she's getting ready to fade away," he offered. Through tiny tears, I shrugged.

Knowing that it's G'ma, she'll rebound with a resilience no one imagined.  It's all together probable that she will be up and at the table when I drop in tomorrow morning for breakfast.  That's been her modus operandi since I've known her; she's rarely sick for long. And if she doesn't..... I'm not going there.  As G'ma's mother always said: You'll have time enough to be sad after it happens.  Until then, why waste the good days?

Wise words..... that's all I have left.

This is The New Reality

Forty-five minutes of conversation about caring for my mother took the place of visiting with said mother today.  The owner, the nursing supervisor, and I sat in the office in the pod-castle while the subject of our conversation, my aging-none-too-gracefully-maternal-unit, slept in her recliner.  I didn't ask her if she wanted to join us.  I didn't want her to be there.

This is my new reality. I have her teeth pulled without seeking her opinion. I make plans without consulting her. I decide and she lives with the consequences.  I know that she trusts me and that she loves me and that she knows that I love her too, but, until very recently, we were in this together. Now, I'm in charge and she's out of the loop.

It's not that she'd be an effective participant in the loop. She can't remember where the questions began, let alone formulate a coherent answer.  I try to break things up into manageable pieces, but the ability to hold onto the information is lost to her. I never offer more than two choices, and I try to have a visual aid at the ready when the question is asked.  "This blouse or this blouse?"  "Hamburgers or soup?" "The red or the orange crayon?"

Sometimes she remembers why she's holding the crayon she selected.

Most of the time, though, she sits in her chair, watching television and napping. Unless Olga, the recreation therapist who cannot be refused, is on duty, she has no interest in joining the others for mask making or puzzle constructing or sing-alongs.  I hold onto the words she said when she was living alone in New Jersey: "I don't need to go out and see people.  I enjoy my own company and can amuse myself."  This is something which has remained constant as she has declined; she's rarely hungry for social interactions.

I left her in her electric chair, feet dancing to music in her dreams, and walked down the hall to her six-month-care-plan-review. Her medications were discussed, mostly so that I could be sure that insurance was paying only for what she is using.  There was a little bit of education on the side. The generic Lasix will keep the swelling in her ankles under control, as the generic incontinence drug helps keep that liquid from escaping without advance warning. Her blood thinner reduces the risk of stroke. We've discontinued the mental acuity drug; there was no difference in her mentation when she cycled off it last winter so there was no reason to re-institute the regimen.  I did all these things without asking her.

She's said, time and again, that she raised me to be a good person, a person who loves her and cares for her, a person who makes thoughtful decisions.  She trusts me.  "If you say so," is her favorite response. And so, I say so.  Instead of talking around her while she's in the room, sitting like a potted plant, not participating even as she is the central topic of conversation, I've taken to excluding her from the conversations entirely.  I'm keeping her safe.  She doesn't need to know the details.

Except that this is not congruent with the picture I still hold in my head of the woman who raised me. She never let a detail go unexamined.  She wanted and needed to know what was happening and why. She could delegate during a meeting, but when it came to decisions regarding her own life she was front and center, considering, discarding and ultimately choosing a desired outcome.

Now, the outcome she desires is unobtainable.  The life she is living is exactly what she didn't want for her old age.  She'd not a burden to anyone in terms of taking more time or energy than is available, unless I don't consider the emotional energy expended.  Every thought of her is tinged with sadness. Every conversation about her starts or ends with "This is not what she wanted." And there is nothing that can be done.

She's healthy.  She's eating better, although she's moved on to the next step in her dementia - pocketing her food.  Like a squirrel, she masticates and then stores the goodies in her cheeks.  The staff says that it's not a problem with swallowing, it's a memory issue.  She forgets what to do with the chewed up foodstuffs so they sit in the corners of her mouth.  There's a simple fix; the staff asks her to smile widely before she leaves the table, and then reminds her to swallow what's still in her mouth.

I'm grossed out just typing it.

Are you wondering how she chews without any bottom teeth?  So did I.  Apparently, it's not an issue for her. I try to avoid thinking about how soft the foodstuffs must be in order to be swallowable. Instead, I'm concentrating on the fact that there are no floating dentures, cruising around in her mouth as she listens to me babble.  I'll consult with the dentist and make a decision about ordering new lower teeth for her.  The staff says that when residents haven't worn their dentures for a while the new plate feels like marbles in their mouths.... uncomfortable and removable marbles... and that a considerable amount of staff time is devoted to locating hidden dentures.

The notion of elderly miscreants stuffing their teeth between the mattress and the box spring made me smile.... until I realized that I had decided to have a toothless mother... and I hadn't consulted with G'ma before I made that decision.... and I know it's the right decision because my goal is No Unhappy Days and achy gums for the sake of cosmetics is serving my purposes and no one else's.

No one else cares.  The staff see her as vibrant and funny; pleasantly confused is her diagnosis and we all agreed that it's a delightful state of affairs in comparison to how awful it could be... and may well be... and there's no sense in fretting about it now.

I reminded myself that this was just a new iteration of the woman who used to be my Mommy.... and I fled from those thoughts as fast as my brain could take me because it's one of those problems that cannot be solved.  The only solution is unavailable to me. I cannot fix her brain.

So, I take care of her as best I can, putting her safety and happiness at the top of a very short list titled That Over Which I Have Control. I'll concentrate on how happy the family will be to have no clacking dentures at Thanksgiving dinner. I won't worrying about her appearance.  Those who will see her will be seeing with eyes colored by love and affection. Without a dental sound track, they'll be able to enjoy her presence, creating another memory for themselves, bringing a smile to the last remaining grandparent's face.

I think this is what silver linings and silk purses and lemonade out of lemons is all about.  It's not what you want.  It's the best that is out there.  You get what you need to get by, to make the best out of what's really not that bad a situation.

And you try not to cry.

Might Velcro Be the Answer?

The phone rang at 6:15am.  I cursed as I swung my leg out of bed, knowing that it was the pod-castle before caller id confirmed it.  No one else calls that early. The cheery voice on the other end of the line wished me a good morning, wondered how I was doing, and apologized for calling at such an awkward time.

I didn't want to hear any of that.  I wanted to hear that my mother was safe and healthy and unbroken. That information came after the pleasantries.  I was not in the mood for pleasantries before sunrise; I bit my tongue and listened as the caregiver rattled on... and on... and on.

The story that was hidden amidst the verbiage wasn't pretty. Two bed alarms rang just after 2:15 this morning.  The lone caregiver in the pod castle attended to the chimes emanating from another patient's room. When the floating caregiver arrived (to provide coverage for her break), she was directed to G'ma's room, where she found my mother on the ground.

I don't know why the gentleman received care when my mother was ignored. I don't know why he wasn't stabilized and then left in a safe situation so that my mother could be seen.  I don't know where mom landed, or how long she was there, or if she rolled out of bed, or if she fell trying to hoist her nightgown and sit on the toilet seat. The floater was gone by the time I was called; the caregiver on duty didn't have the answers, either.  If information had been shared between the two of them, it never made it to my ears.

My only job is to keep my mother safe.  This is not keeping her safe.  I realize that no one can stand next to her 24 hours a day.  That's why we put the alarms on her bed. I recognize that adding an additional staff member at nights would solve the problem as long as three alarms don't go off at the same time.  It's a conundrum, but one that must be unraveled and re-wrapped in a more satisfactory fashion.  

The owner of the facility, a kind and thoughtful woman with an impossible job, listened, as she always does, with sympathy and compassion.  She never offers the easy answer.  She never defaults to responses which would make me cringe.  I never hear "There's nothing we can do" or "It's not our fault" or "Your expectations are too high."  She hears the manifest and the latent content of my calls, and responds to both.  

We'll be meeting next Monday afternoon to set G'ma's six month plan in place.  The med tech and the pod manager and the owner and I will put our heads together and try to come up with a plan.  That plan won't involve reminding G'ma to use the button on her Life-Alert necklace to call for help; she can't remember that it is there, let alone remember what it is supposed to do.  Not that pushing the button would have made any difference last night; no one can be in two places at once and the caregiver was elsewhere when my mom was in danger.

My mom was in danger..... that's not a sentence I ever want to type. We tried to avoid dangerous situations by placing her in the care of Assisted Living professionals, but what do we do when those caregivers are busy? She doesn't have the financial means to pay for a private duty nurse to live in her room at night; the bed alarm is supposed to be her "private duty".  I guess I should be glad that the alarm itself was operational.  Who knows how long she'd have been on the floor had it not been tunefully chiming?  

I never did get back to sleep. I spent all morning sharing my sorrows with friends and family, as I went to Pilates (twice) and had lunch and caught up on emails and facebook and life.  Everyone was sympathetic.  No one had a solution.... until Little Cuter found this:

We just put her in a velcro suit, attach the gripping side to her sheets, and she's not going anyplace.

I suppose it's a good thing that I can still laugh about it.

No Good Deed...

I didn't want to go. I wanted to read the T Jefferson Parker police procedural I downloaded from the library's website. I wanted to swim, or go to the gym, or even watch professional football.  I just didn't want to go over to the pod castle. I'm still raw from thinking about what used to be and what is now.

But I was also hungry for soft serve ice cream and the pod castle was concerned about a swelling on G'ma's jaw so I bundled my nerves in swaddling clothes and drove over to see my mom.  Going over to the grandparents on Sunday afternoon is an old routine.  Perhaps I was channeling the angst that came from sitting in the backseat, listening to G'ma's "Two hands on the wheel!!" as Daddooooo sang along to opera and pointed out the varieties of airplanes flying overhead.

I had two miles not twenty to drive, and only one old woman to see. It was totally different. There would be no one to play canasta with me, no one to make me a hamburger, no stacks of Reader's Digests to delve through. I wouldn't be sitting at a banker's desk, pretending I was a business man (sexist, perhaps, but very 1950's) .  In the three traffic lights between her house and mine, I reorganized my vision of the mommy in the front seat of the Mercury to the reality of the frail woman stuck in her recliner.

The afternoons are worse than the mornings. In the morning's it's "Hi, Suz!" and the television is turned off.  In the afternoon, drowsy and fiddling her teeth in her face, she's confused and then agreeable when I offer a drive to Dairy Queen.  Though the footrest is up on the electric chair she is undaunted. I watch in horror as she squeezes her shin between the armrest and the ankle pillows and shimmies herself forward.

"Mom, wait a minute.  Let me put this down for you."

Her flummoxed look chilled me.  She had no idea that there was something amiss.  She assumed she was old and fragile and the issues were hers... not the chair's.  If she kept going forward, her feet were sure to hit the ground.  That's why there is an alarm on the seat of the chair... an alarm that is supposed to chime and announce its location when her bottom moves.

There was no chiming or announcing as she scooted forward, as she stood up, as she walked down the hallway.  By the time we encountered a caregiver, I was livid.  The thing which is designed to keep my mother safe was broken. For how long, I did not know. The caregiver was oblivious to my distress, nor did she have any idea that the alarm was mal-functioning.

"Can you look at it, please, and see if you can get it working?"

"Ma'am, I'm a care giver, not a mechanic."

I thought I had stopped shaking by the time we got through the rec room and out to the back patio.  I thought I was in control, that my rage was bottled up neatly, that I was focused on my mom and not on the sassy wench who had dismissed my issue and with it any confidence I might have had that my mother was safe in that environment.  Visions of shopping for a new home, of moving her, of what to do that night, of hiring a private duty nurse to watch over her, of screaming at the heavens, all of that was in my head as I helped G'ma and her walker down over the curb and into my car.

She used to be able to take a shuffle step forward while the walker was on the pavement and she was on the sidewalk.  Not so much any more, I came to find out.  I put the walker down, I cued her to move forward, and there she was, tumbling down off the curb, sliding down the front of my car, landing on her side.  She was on my right side, my damaged side, the side to which I cannot shift quickly.  All I could do was watch.

And scream.  I got down faster than I have in three years, saw that her eyes were open and there was no obvious broken bones or blood, and I screamed.  Help came. Her vitals were checked, her wounded nose and elbow were cleaned and covered, Arnica was rubbed onto her bruised knuckles, and she kept wondering why I was crying. Mom didn't remember that she had fallen.  She didn't seem to notice that she was in the parking lot.... on the parking lot... that she was bleeding or that I had let her fall or that I had failed to keep her safe. She was hungry for dinner.

It was time to move on.  The med tech reconfigured the alarm system and there was chiming and announcing galore.  Everyone was fine, except for me. I saw that fall all night long. Going to sleep was torturous.

I was at the pod castle at first light.  She was fine.  The alarms worked.  The aides who love her were on duty and the owner listened to my tale of woe with real concern.  I have no doubt that she will take action.  I have no doubt that I will, too.  I need to leave my anger at the door.  I need to concentrate on the here and now and I need to remember that my mother needs more than a cursory glance when she's outside. I need to focus on the good parts of the day, the fact that she was fine, that she doesn't know that it happened, that the repairs were quick and painless.

I need to stop seeing her fall.

Diligo Fratrem

I love my brother.

The phone rang this afternoon just as I settled down for the last third of Lee Child's latest Jack Reacher novel. The pace was quickening, the bad guys were dropping like flies, and the phone was ringing.  I was all full of grrr and leave me alone until caller id told me that Brother was there.

I knew before I said "Hello!" that he and his girls were driving from their new home at the end of the Red Line to their synagogue much closer to town. Talking to me on their way to Kol Nidre was a good use of time.  It was good for my soul, as well.

There aren't a lot of people who want to hear me talk about my mother.  I write about it here because I know that you can click away if you find me annoying or self-indulgent or too morose for where you want to be right now. There's no harm and no foul; I don't know and you don't have to worry about offending me. I get it off my chest, and I feel better. Healing through blogging; it's the cheapest therapy I know.

Brother listens. He understands. He laughs in the right places and offers to visit at the right times and is generally there when he's needed. I'm not sure that he's needed right now.  I don't know what is needed.

He told me that they'd called G'ma last week and the conversation was marked by a certain amount of peevishness on her part. She lost track of her sentences.... and she knew it.  Her usually excellent skills at confabulation deserted her.... and she knew it. He was touched by the fact that she cared.  In the past, her default has been that anger won't help her to remember, so why should she waste time being peeved? She's funny and able to laugh at herself... at least she has been up until now.

Anesthesia is no friend to the demented.  After every procedure, after every sedation, there is less of my mother than there was before.  I don't understand the biology, and neither does anyone else.  Google anesthesia dementia and the first page brings you ten articles, alternately claiming that anesthesia does and does not increase the risk of dementia.

I don't care about the research. Just like when the pediatrician denied the correlation between drooling and sniffling and teething, I know what I'm seeing.  My mother was finishing her own paragraphs before she broke her leg. Since she's been home, she's losing the ends of her sentences.  I'm just sayin'......

So Brother listened as I got a little teary, telling him that I go to visit her in the mornings now, because my readers told me to focus on the love in the moment.  She's less tired, more herself before lunch; I'm a happier person seeing her that way.  I'm long past the guilt of visiting on my own schedule; now I try to keep a smile on my face for as long as I can before I go back to my car to sigh.. to breathe... to weep.

I miss my mother.

I read him a letter from G'ma's oldest friend. It speaks of a woman quite different from she who parented us. I want to be able to ask about that person, the one Gladys knew, the brave and resourceful one who is hiding someplace inside the body currently masquerading as my remaining parental unit.

Brother understands. He accepted my Yom Kippur inspired apology for any wrongs I'd done him in 5773, and he returned the favor.  He'll eat pre-fast pasta so he can nap through the sermon, and he'll be thinking of me as I'll be thinking of him. We're in this together, he and I.

At this moment, that's the best news I've had all day.

My Ever Vanishing Mother

Rosh HaShana comes early this year.  I took the cards over to the pod castle for G'ma to inscribe. We go through the motions, my mother and I, even as they remind us of what is lost. We do it because we've always done it and because it needs to be done and because others expect it and because it used to be fun.

Used to be. Like almost everything involving my mother, used to be rears its ugly head.  It taunts me with what was, as G'ma's formerly perfect printing wavered on the page. It took her some time to adjust the pressure of nib to paper.  Her initial attempts were faint, the repairs just made things worse. My heart aches for her grandchildren, who have been watching her decline through these obligatory notes and cards, watching her signature wobble where once it was definitive, like the swirl and the dot below it.

Some of the cards had the decoration. For some of them, she was too tired to write Dear, let alone a name following the salutation, even though I suggested that she try.  When she doesn't want to do something, G'ma puts a certain look on her face and .... right now there are grandchildren all over America who are laughing as they are quaking in their boots... it's the face that got her through the hardest times as the middle-school-administrator-in-charge-of-discipline... the face that brooks no argument. That was the face for most of the cards.  True to form, I didn't argue.

She used to like to put the labels and the stamps on the envelopes. Today, she shrugged her shoulders and shuffled her dentures and I decided not to bother.  If I'd had the supplies at hand, I'd have made it an arts and crafts project.  But my body didn't want to walk down the hallway to collect them, and I knew G'ma wouldn't remember doing it or not doing it or anything about it at all so I sat with her in the sunshine and reminded her that Niece, the Youngest is in Jackson Heights and Cousin, the Youngest is a gifted and talented young man, and that I loved her.

That's the only thing that is the same.

I Pee My Pants?

At least she understood the word incontinent.

That's about as happy as I can be about the scene in G'ma's apartment last Thursday. The physical therapist was discharging her from home care.  She's walking better than she has in years, lifting her quads and bending her ankles and using her entire leg in the process. The PT has instructed the staff and watched as they perform the two sets of exercises my two-months-past-her-broken-leg-90-year-old mother does every day.  She complains. She moans. She cajoles.  She complies. The therapy is working.  She's made enough progress to continue on her own.

Thus, the creation of a discharge summary and a plan. The PT, G'ma, and I sat in her apartment and reviewed her systems, inside and out.  Heart, lungs, activities of daily living... all were considered.  "Can she brush her own hair?" set my short hairs on edge... she was sitting right there and was as aggravated as I was.

"Of course I can brush my own hair... and my own teeth, while you're at it."

I love it when my feisty mom reappears.  The PT apologized for talking about her instead of to her and the rest of the questions went more smoothly.  She has stand by assistance for dressing and bathing. The alarms will remain on her chair and her bed. She's capable of getting into and out of her regular bed, and I must make arrangements to retrieve it from my garage and return it to her bedroom this week.  I'll be discussing an order for a safety rail with her gerontologist, but she's strong enough to sit up and get started on her walker now, so the immediate danger has passed.

She eats well, if little, and has no problems chewing or swallowing... if you don't consider traveling dentures an issue.  My mom does not. We moved on.

There are no household chores to be done, the major benefit of assisted living according to my maternal unit, so that section of the discharge plan could be skipped. She's actively involved in activities, if active means she goes along when prodded and has a good time once she gets there. Her lifelong reluctance to exercise has persisted; she is a willing if cranky participant in her exercise regime.

Her blood pressure medication is still being monitored, her other pills remain the same.  Yes, she is on a medicine to prevent leakage, and yes she is, on occasion, incontinent, and...

"I pee my pants?"

There was horror and shame and worry and confusion on my mother's face. She was humiliated and surprised and shamed.

We jumped into the fray.  "Not often." "It's a natural consequence of being very old." "You never smell."

As usual, changing the subject rendered the conversation moot. She had no memory of it as we moved on to how and who and when the exercise program would be continued. My heart wasn't in it any more, though. I pee my pants??? was running on a continuous loop through my head.

I've gone out of my way to keep her life a series of happy days. She knows I was shot, but adds in the ass with a smile every time.  Life isn't pretty, but she's not unhappy.  I've known for a while that this state of affairs depends on me being the buffer between reality and my mother. They will take care of the things she used to focus on. You don't need to worry about that; I've got it under control works for bills and presents. She knows I am in charge and she trusts that she raised a person who is capable of caring for her so she relaxes.

She goes with the flow.

Oh, I am so sorry I typed that.  I'm laughing and I'm crying at the same time. She is too slow to get up and to the toilet and so she has accidents.  She wears protective undergarments (notice my reluctance to use less awkward terminology) and she is never wet for long. She doesn't carry the odor of an unclean old woman - her major fear of aging, truth be told. But yes, she pees her pants.

I know that I am the only one of us who remembers that conversation.  I know that I am the only one of us who is concerned about that conversation. Still, I remember. I am concerned.

But, she is not and that's what's important.  I will do a better job of shielding her from the harsh realities of her life, and I will try to live in her moments, rather than mine. I don't know what else to do.

I was sad yesterday. I typed to you before I'd been back to visit G'ma in the pod castle.  I was trying to prolong the vacation feeling, the I can't do anything about it so why worry-ness of the past two weeks.  But I was home and G'ma was down the road instead of across the country and there was work to be done.

I try to avoid guilt about not visiting her sooner. I delude myself into thinking it's too long for me to walk in the heat from the parking lot to her apartment.... but I'm having a hard time just typing that with a straight face. The truth is she doesn't know if I come every day or every month. Sometimes she has my name, sometimes she is merely recognizing a familiar face. I try to concentrate on the smile in her eyes and not the loss in mine.

It's hard to watch her fade away.  Even worse, it's boring.

It used to be that I would talk and she would listen.  I liked to talk.  She liked me.  It worked. I always knew that she found me infinitely fascinating, that my words were pearls of wisdom, that I was funny and smart and worthy.  Whether or not any of that was true from her side of the equation, I will never know.  I do know that I knew it then and I know it now.  It has to be enough for both of us.

Part of being a good audience includes the ability to interject brilliance when the speaker pauses for breath.  G'ma was an expert at it; there was never a doubt that she was listening with her ears and her heart and her mind. She was judging and furrowing her brow and contorting her shoulders, too. I always knew where I stood with her. We didn't have to agree, but we always knew.

And now, I'm providing all the depth... and I find that I'm not that interesting when I'm talking to myself.

As we get further from her surgery and the anesthesia is no longer clouding her mind, she's recovered the back and forth, the banter, the snarky humor that makes the caregivers love her. She's fun to be around, as long as we're doing a puzzle or some other craft.  There are others at the table, and the rec therapist keeps things moving. On our own, keeping the conversation going is getting harder and harder. I try not to worry, remembering that she won't.

She can't remember and she knows it. It's one of the things she remembers. Not her broken leg or where she is or who I am, but the fact that she does not remember.  Somehow, it doesn't scare her.

I don't know how she manages that trick; when I say that I am going to school on being a very old person by watching my mother this is the class I like the most. Her surroundings are familiar, but she hasn't a clue beyond that. The dining room might as well be on Mars.  She can navigate from there to her apartment, but only if someone aims her in the right direction and tells her where to go.

"What am I doing now?" always brings an answer and assistance. That's the level of comfort she requires. The woman she used to be would resent the intrusiveness; the woman she is right now smiles and follows. I'm the only one who seems to have issues with it.

I want her to be aggravated that I only stayed for an hour today. I want her to wonder why I didn't call and let her know that I'd returned from my vacation... not because she was lonely, but because she wanted to know that I was safe. I want her to recognize Little Cuter and SIR and Thomas the WonderDog and to revel in the fact of her grand-daughter's newly discovered green thumb. I want her to laugh over the similarities between SIR and his grandfathers-in-law, all three tool-happy-makers-and-fixers.

Time to put the tune on continuous repeat, I think.

Did She Fall?

The phone rang at 10pm. I knew it would be bad news before I lifted the receiver; Caller ID told me that the pod castle was calling.  There was nothing I wanted to hear from them at that hour of the night.  I was right.

"Your mom fell."

My heart dropped. The plane to Chicago and BlogHer and Little Cuter was leaving in fifteen hours, and I planned to be on it no matter what. 

"How long was she on the floor?" I asked.  "Is she bleeding?  Have you called the doctor?

"Not long. No. No. She's fine.  We just wanted to tell you.  We found her in her chair.  She doesn't remember a thing."

This is where it starts to get fuzzy for me.  G'ma was not bruised.  She was on her chair.  She, of course, was unable to tell the staff what had happened.  I wondered how they knew she had fallen. No one was able to give me an answer.  I'm not suggesting that they didn't give me a good answer, I'm saying that they didn't have an answer at all.

I appreciated the phone call, required as it might have been.  I like being kept in the loop.  I just wasn't sure that there was a loop to be completed.  With no damage, with G'ma found on her chair, without complaints of pain or blood running onto the carpet, I am left scratching my head and wondering. 

Is this the edge of a massive cover-up?  If it is, what can I do?  There is no way to prove anything, no way to rerun the hands of time and determine exactly what precipitated the phone call, no way to know what went on.

The lack of control is frightening.  My job is to be certain my mother is safe.  I can't do anything about her increasing dementia, her lack of appetite, her unwilliness to get off her chair and join me for lunch out at Subway.  I can try to keep her safe.  At least, that was the plan when we admitted her to the pod castle.  Sixteen apartments, four or five staff during the day, alarms on her chair and her bed, overnight staff that is aware of her limitations, all of these were in place and, for a while, working well.

Then, there was that phone call.

She is losing muscle tone and interest in the world around her.  The surgery's anesthesia, though mild, left less of her in the world.  It's a commonly reported side-effect among the already demented, though I've not found reliable research that would suggest that surgery be avoided.  And really, the woman had a broken leg; surgery was not optional. I thought that returning to the pod-castle would reawaken neurons and synapses, that she would relax into her familiar, comfortable, surroundings, that she would be the same.

I'm a dreamer.  I look at the bright side.  I'm often disappointed.

There is blather where there was none.  I used to say, with confidence, that G'ma was fine in the moment.  She might not remember where she had been ten seconds ago, but within the confines of a conversation, she was on-task and coherent.  That's not true any more.

She pointed to Mark Harmon's gorgeous face on the television set, and began to tell me something about him.  The sentence started off well enough, but it devolved into a string of unconnected words before the second comma.  G'ma looked confused, surprised, perplexed.  I finished what I thought she was saying and didn't make a big deal over the drivel I heard, but my heart was breaking.

I treasured those moments of clarity, those conversations about the weather or the kids or the outfits on the people across the room.  They were glimpses of what had been, reminders of the woman she was.  Those encounters reinforced the notion that the old lady in the recliner-she-can't-remember-how-to-operate was still the woman who gave me sage advice, whether I wanted it or not.

I'd really like some now, Mommy.

I'd like to know if you are happy inside.  I'd like to know if you realize you are unable to complete your thoughts.  I'd like to know what to do about it all.  I'd like to know if you fell.

Channeling Mick isn't helping at all. I know I can't get what I want.  I'm trying, but I'm not getting what I need, either.  I'm not giving up, but I'm not sure where to turn. If there are answers out there, they are well hidden. 

It's really no fun at all.

Discharge Blues

It's been seven weeks since the phone rang with the news that G'ma had fallen and couldn't get up. The story just continues to make waves in our lives.  Usually, they are gentle swells.  Yesterday, I was in the middle of a tsunami.

The original home health care company discharged her.  They didn't tell me.  They just did it.  Apparently, when there are no skilled nursing needs, they cancel the connection.  The fact that her physical therapy was still an issue to be addressed didn't register on their radar.  She was done.  That was the reason the PT never returned to the pod-castle.  She wasn't on the list.

I didn't bother arguing with them.  If they don't want the case (and the dollars that come with it) they don't need it.  Her primary care physician (PCP.... because he reappears in this saga and I don't want to type it all out over and over again) was happy to send a referral to another agency.  They were happy to send a PT to see my mom.

Of course, no one told me.  I didn't know that the appointment had been made.  I didn't know that it had been kept.  I didn't know that she'd been up and walking.  Why should anyone tell me?  I'm only the Reliable Informant, the Primary Contact Person, the one who comes to visit and pays the bills and brings the supplies. Why should I know?  That must have been their reasoning; I can't figure it out otherwise.

The new PT showed up on Friday and got her up and walking.  She made it down the hallway, and then complained of pain... "Just a little."  For G'ma, that's tantamount to screaming in agony and writhing on the floor. Although much of her old self is lost, she's still able to cover her aches and ouches.  She doesn't want to disturb the status quo. She's not looking to attract attention to herself.  She wants to be fine, so she tells herself that she's fine, and she answers inquiries the same way.  That she was wincing and saying that she hurt was a clear signal that something was wrong.  The caregivers sat her down on the seat of her walker and wheeled her the rest of the way to the dining room.

Visiting over the weekend, I had found a bright red folder that the new home care agency had left behind. Inside, there were documents to be signed and care plans to be followed and reminders that throw rugs are dangerous.  There was also a calendar; 2:30 pm on July 15th had been penciled in.  I was there for the appointment.

Jane, the third PT, began by asking the basic demographics.  G'ma was, as always, pleasantly confused. She gave her birth date and her social security number and that was about it.  "When did you fall?"  led to "I fell?" and "How do you feel" led to "With my fingers."  I stepped in and provided the answers I could, right up to the question that stopped me in my tracks.  When had she seen the surgeon for her follow-up visit?

Never.  I didn't know that she was supposed to see him.  The paperwork which accompanied her home from the hospital mentioned only her blood work and recommended follow-up by her PCP.  I did that.  We are working on getting the numbers back where they were.  The nurse practitioner has been out to see her, has been monitoring her progress, has been checking her levels and titrating her dosage.  I figured that she was also noticing mom's healing leg, too.  I know that she'd admired the scar, and had palpated the area (for what, I don't know, but I saw her doing it), and had pronounced that healing was proceeding well.  No one mentioned that G'ma needed to see the surgeon. So, the answer was: "She hasn't."

Jane gave me a funny look, and called the surgeon's office.  Yes, they had a record of the call I'd placed in early June, just after discharge from the hospital.  They had called me back... they had a record of it.... and of the fact that the phone was busy. That was all that was on the chart.

Hmmmm..... cell phones don't ring busy... at least mine doesn't.... it goes straight to voice mail... of which there was none.  They never tried to call me again, even if the busy story were true.  Steam began pouring out of my ears.

Could I manage to get my mother to the office.  Answer quickly.... the receptionist needed to know NOW, Jane said.  I nodded, and wondered why this would be an issue.  There are ambulette's available if I can't get her into my car.  The implication that I had abandoned my mother, that I was uninterested in her follow-up care, that I could not be trusted, was coming across loud and clear through the phone line.  The creases in Jane's forehead grew deeper the longer she spoke to the scheduler.

Did G'ma really need to see the surgeon, I wondered?  Couldn't he send a portable x-ray to take the picture he needed? That machine had saved many a trip to the PCP's office; certainly this situation warranted the same consideration. The scheduler would ask and call me back.

This morning came and went; no phone calls were received.  I called them myself and was told that G'ma had an appointment scheduled for 11 am on Wednesday.  I guess it's a good thing I called to check.  We would never have known had I not done so.

Meanwhile, G'ma is back in the wheelchair, and loving it.  "Do you mind being pushed to dinner?" I asked. "Mind??? It's fun!" was her reply.

I try not to think about the mantra her PCP drilled into our heads : Those older patients who exercise and move about on a regular basis do better than those who don't.  Use it or lose it.  You must stay active.

I try not to think about the nonsense statements she's spewing more often than not.  This is a new development, one that presages more losses, I am sure.  Without her walks to the dining room and the tv room and the other pods in the castle, she's dwindling.  She never gets her blood going, never changes her point of view, never gets tired. Without the ability to stand on her own two feet, I worry that the rest of her will follow the path of least resistance.  Am I likely to find a puddle of G'ma melted into her recliner?  Who knows. More and more of her life is disappearing, and I am powerless to stop it.

I can take care of her.... or at least, I thought I could take care of her... I'd like to take care of her... if only the agencies would allow it. I should have had better discharge instructions from the hospital.  I should have had better follow up from the surgeon.  The home care agency should have kept me in the loop.  That's all true, and that's what I am telling myself is the cause of my angst today.

The real reason - the fall and decline of G'ma - is just too much for me right now.

The Nanny State

G'ma doesn't remember that she broke her leg last week.  She has no cast, so there's not a visual cue to start her memory churning.  She is not in pain when she's not moving, which is most of the time, so there's not a physical cue to remind her.  She doesn't notice that anything is different at all.

The problem is, she is not allowed to bear weight on that limb for five more weeks.  She can touch her toe to the ground for symmetry and balance, but 99% of her body weight must be borne by her left leg.  Should she put too much pressure on the damage leg, the plate and screws securing it to her soft bones will not hold.

She has to grow more bone over the hardware. That thought has not made it into the permanent memory bank. The orange discoloration from the betadine washes has faded.  The bandage covering the incision on her thigh is comfortable.  There's no reason to fill her with sorrow as she contemplates the failure of yet another body part.  For the most part, it's a good thing that she doesn't remember the pain and the fear and the trauma.

On the other hand, she's not safe.  Should she stand up, she'll fall down.  On so many levels, that would not be a good thing.

I tried to conjoin the broken leg story with the Christina-and-I-were-shot story.  That one is embedded, deeply and sadly, and can be called up without too much trouble.  I thought that if I got her attention by reminding her that bullets ended our little friend's life and put the hitch in my gitty-up that I could then attach the broken leg saga to the attention she was paying to the gunshot story.

It was a good idea, at first.  She was focused, her eyes were riveted on mine, her face was screwed up in sadness.  It lasted for a minute or two, and then she wondered why I was hollering at her.

I sighed.

She is sitting on a chair alarm.  As long as the staff remembers to leave the main control panel untouched, bells will chime and an alert will sound if she moves her body weight off the plastic pad.  It works. We tested it.  It doesn't take much to set off the noise, and that's a good thing.  The staff love her, and they come quickly to her aid.

The pad moves with her to the wheelchair when she goes for meals and activities. There is always someone around her at those times; I'm not concerned about her safety.  She can watch movies in the rec room, do crafts projects at the big table, join Glenna and Rita and Fran for meals in the dining room, and there's always a watchful eye nearby.

On the recliner, the notes I taped to each arm seem to be an effective reminder.  DO NOT STAND UP! PUSH THE NECKLACE BUTTON FOR HELP! ... in black marker, in capital letters, angled to catch her attention... it's not much of a style statement, but it's doing the job.

My worries are about the bed.  We rented a low-rise-hospital-bed.  The mattress, yucky plastic now covered with a comfy egg crate topper, isn't too uncomfortable.  The twin sheets are smooth percale, remnants of the Cuters' childhoods.  Her pillows and blankets are her own, recognizable, familiar, comforting.  There's a crash pad on the floor beside the bed frame.  The frame itself can be lowered to two inches above the ground.  There's not much danger if she rolls off the bed.

But she's not likely to roll off the bed.  Instead, she is likely to want to get up for a bathroom break at 4am.  She is going to try to extricate herself from the sheets, turning her legs toward the floor, which will be there much sooner than she expects.  The bed alarm will ring.  The aide will come running.  It might not be quick enough to stop her. She could twist or turn or otherwise injure her already compromised self.  It's not a pretty picture; it's all that was in my head.

The obvious solution is to put a side rail on the bed.  One edge is against the wall, under the window with the sunset view.  If there were a rail along the other side of the bed, she'd be unable to get into trouble. I would be able to sleep at night.

The problem is, such a rail is not permitted.  The State of Arizona has rules and regulations governing the care of people in institutions like the pod castle, and those rules and regulations specifically prohibit side rails longer than 18".  That's the length of your forearm from elbow to fingertips.  It's the distance from the head of the bed, past the pillow, to just below G'ma's chin.  It will make her feel like she's in jail when she opens her eyes and it won't keep her in bed.  It's not even long enough to be useful as a handrail to sit up.

The rental company won't leave one longer than 18".  The pod castle administrator won't let me install one longer than 18".  The visiting nurse tells me the same thing. G'ma is as safe as the law allows.

That's not very comforting.  I contemplated sleeping on the floor next to her, until I admitted that at 61, with my own, very valid, aches and pains, I could believe TBG's reassurances that the trained professionals will be there to assist her.

At a certain point, I have to let go.  I have to trust the caregivers to be just that. This is exactly the situation for which she is paying her rent.  She needs assistance now, more assistance and safe-guarding than she has ever needed before.  That is why she is living there and I have to take two deep breaths.  I did.  I swam, I ate, and then I realized that my anger was misplaced.

I can call the doctor and ask him to prescribe a longer rail for G'ma until she is able to safely put weight on her leg.  Even if he won't, I'm a little less anxious now that the first few nights have gone so smoothly.  I laugh at myself, remembering that every snort and sniffle coming from Big Cuter's tiny little self in the cradle at the foot of our bed sent me shooting upright, bolting from the covers, for the first few nights he was home.  I thought then, and I am thinking now, that there is a way to keep them free from harm. Silly me.

She's happier and more alert with every passing hour.  She's as connected to the world as she was before the surgery, and she's as snarky as ever.  I need to relax and let life go on.

Oh, remember that misplaced anger?  Here's where it is, right now:

Okay, Arizona. Explain this to me:   

I can bring a loaded, concealed, Glock 9mm, with an extended magazine, into a church, or a bar, or a concert hall.....

but I can't put a side rail on the side of my demented mother's bed to keep her safe. 

I'm just sayin'....

Random Thoughts - The Mom Fell Down Edition

Hospitals are great places to be if you are ill or broken.  If you are trying to fix levels of medication in an elderly body, they might not be the perfect venue.  No one sleeps in a hospital; there is too much noise, too many lights, too many finger sticks at 4am.  No one eats well in a hospital either, even when the food is as delicious as that at UAMC.

Though the transition was difficult, everyone is glad that G'ma is back at the pod-castle.  She needs rest and TLC.  Both are found in abundance there.
*****
There ought to be a list, handed to every family member upon admission.  It should tell you how to solve basic problems.  What if the nurse is unnecessarily testy? Who will make the discharge decision?  How will that information be communicated to the staff and the family?  Who makes the phone call to arrange transportation home? Where do you park when you're picking up the dischargee?  Where should compliments be sent?

Facts are crucial to calmness when a loved one is a patient.  Though everyone was pleasant and helpful last week, there was often a dearth of information... or, less frequently but with more dire consequences, lots of conflicting information.

Someone ought to be in charge.  That someone should be available.  I'm just sayin'.....
*****
Keeping the family updated was simply a matter of typing one message with multiple recipients... and then not losing that message in the inbox.  It took me a few days to get it all organized, but last night's phone conversation with Big Cuter proved that it was working.

I started in what was, to TBG's ears, the middle of the story.  Little did he realize that our son had been following the saga, complete with pictures, on his phone all day long.
*****
There's an alarm on the recliner and an alarm on the bed and, as long as no one messes with the controls, bells go off whenever G'ma shifts her butt.  That's the plan, anyway.  Like all remote devices, interference from other electronic signals and indifference from the technicians leads to errors, lost signals, frantic daughters.

I had a minor melt-down this morning when I lay on G'ma's newly made bed, got up, and no alarm sounded.  It was fixed after I mentioned it, but that didn't leave me feeling confident when I left for Pilates.  The staff can make all the promises in the world.  The proof is in the details, the execution, the recognition of the issue.
*****
There's no place like home... there's no one who cares as much as family... there's no way I could manage this myself.  It's a conundrum.

G'ma said that I shouldn't come back this afternoon if it would interfere with my daily routine.  That's been the model under which we've been operating since she moved here, and, for the most part, it has worked well for us.

But this situation is different, and I know it, even if she does not. This time she requires a little bit more monitoring, a little bit more intrusion, a little bit more care.  If I'm not there to make sure, little things might slip through the cracks.  That was okay when she wasn't in imminent danger.... but now.....
*****
Sleep has been elusive these last ten days.  I awoke this morning with a splitting headache, running from my lower jaw to the crown of my head.  My teeth were singing to me, after grinding away all night.  There are drugs to take to quell the angst, but the angst will be there nonetheless.  It's not my usual free-floating-anxiety-attack; I know exactly why I'm stressed.

That knowledge helps me realize that I am not losing my mind.  It doesn't make it easier to bear.  it just eliminates some of the frills around the edges of the emotions.
*****
Sharing even a little bit of the story is like poking a needle into a balloon which surrounds women my age.  After Pilates, talking (okay.. whining) to JannyLou before she began her own session, we found the other three women in the lobby equally engrossed in the story.

This one's father... this one's mother... this is happening to all of us in our own little cirlces of love and distress.  Hearing that I am not alone makes it so much easier.  Being reassured that I'm not over-reacting, that others would have done the same thing, that others had done the smae thing, that others thought I was doing well.... that's how I'm getting through the days.

The sun came up today and G'ma and I were here to see it.  I have to remind myself that that, in and of itself, makes it a good day.

Sometimes that's harder to believe.

" I'm Back? Where Was I?"

She's home.

Snuggled under the blanket she crewel worked herself, a full bowl of Kisses at her elbow, the tv turned to NCIS because we both agree that Mark Harmon is worth looking at, she is as comfortable as she's going to get.

The staff who've been transferred to another pod-castle within the complex stopped by to hug her and welcome her back. They were worried about her, they were glad to see her up and smiling, they were teary and grateful and G'ma was overwhelmed.

She's not a woman who enjoys being the center of attention. Compliments make her uncomfortable.  She recognized none of the huggers and smilers but it didn't make any difference.  She was overwhelmed by the emotion, by the warmth, by the love.

I couldn't ask for more.

Well, I could, but I wouldn't get it. I've adjusted my expectations to conform to our reality.  No Unhappy Days has been my motto since G'ma moved to the desert's heat from New Jersey's ice storms.  It's an easily manageable goal, one that requires chocolate and clean underwear and the occasional grilled-cheese-and-tomato sandwich... and not much else... until she falls at 5 in the morning and ends up with her big toe next to her ear.

Did I mention that the break was so spectacular, they used it at morning rounds in the Trauma Center?  We don't do anything half way in our family.

The hospital was exactly what we needed for almost all the time she was there; her blood levels (note to self: research INR) are bouncing all over the place but can be managed at the pod-castle.  It took three days of convincing, but I extricated her from their kind ministrations this afternoon.

She arrived, bewildered, on the low-rise-hospital-bed which will replace her regular bed until she can walk on her own, at exactly 2pm.  Change of shift is 2pm. Some plans cannot be made perfect, no matter how hard I try.  There was a great deal of confusion, which resulted in frantic calls to the doctor and then a calming reading of notes that explained everything, and then there was peace.

Big Cuter's Marimekko cars and trucks twin sheets are on the bed; she thinks it's ridiculous but I can't stop smiling.  An egg crate topper will keep her protected from the plastic, bendable mattress. Her recliner and her night stand have signs reminding her

DO NOT STAND UP  -- PUSH THE WRIST BUTTON FOR HELP

She was doing fine until she looked at the caregiver and asked, "Where the hell's the wrist button?"

We were laughing through our tears.

"On your wrist, sweetheart," we managed to gasp.  

"I shouldn't push it now, though.  You are all here, right?" 

Sometimes it's just too sad for words.

We moved the remote control for the television, because she was using it to straighten the recliner chair.  Each armrest has the sign.  She's sitting on an alarm that will beep if she shifts her buns... as long as no one turns off the receiver from the main control panel.  They have to use the round, white and green remote. I fixed it twice this afternoon by turning the main machine off and on again.  Yes, there's a note above the equipment. It's not working as a deterrent. I took a Sharpie and wrote "do not use this" with arrows to the main reset button.  Even with all of that, I had to grab a tech's hand as she reached for the wrong spot thirty seconds after I finished defacing the machinery. And this is a wonderful facility with kind and caring and competent staff.

There's a leap of faith every time I drive away.

The alarm was fixed and Brother called to welcome her home and then it was time to transfer to the wheelchair and roll in to dinner.  Her space was there, right between Glenna and Rita, and their smiles were beatific.  Warmed by the glow, I slid G'ma between their welcoming arms.

"Welcome Back!  We've missed you! We are so glad to see you!

Her eyes welled up.  She didn't know their names or their stories but she knew something more important.  She knew that they cared.  That, as they say, is priceless.

 And so I stood there, smiling, taking it all in, breathing deeply and freely for the first time since last Sunday morning, when I heard this:

"Welcome Back! It's so good to have you here again!"

"I'm back?  Where was I?"

I sighed.  I shrugged.  And then, as I was about to answer, Glenna leaned over, conspiratorially, and said, "Well, then, I'm not going to tell you."

G'ma laughed, recognizing teasing.  Glenna and I smiled, recognizing the kindness.

One of the virtues of G'ma's impairment is that the bad stuff gets as lost as the good stuff.  Yes, she broke her leg.  No, she won't remember.  Why remind her?  She's back, and she doesn't know she was gone.  As long as we can keep her safe, there's no need for her to remember.