Home

Home. 

Just the word evokes a sigh of relief. 

It has a different meaning — perhaps more than one — to each of us and, even that meaning may change over the course of time and our life experience.

Lately, I have been thinking about what home means to me.  And I know it is affected by the passing of Dad and, with him, the last of our elders.

Home is physical and emotional.  Two physical places — an apartment on the east side, where I was raised, and an apartment on the west side, where we raise our son.  Together, they are where I feel safe and where memories of the generations dance in the ether.  They are my past and present, and they indicate my future. 

And home is the place where Mom’s portrait hangs, as it has for literally 50 years in the home of my youth.  [One of Dad’s sculptures is in the foreground.]

I am unsettled that this will be the first time we kids don’t have a common place.  A place where the three of us belong and that belongs to us.

I think we need to figure out a place for Mom’s picture, in one of our homes. Because that is where the memories of Mom and Dad, our aunts, uncles and grandparents, will dance in the ether, and where we can feel safe and loved.

Because, without that, home is incomplete.

The Hilarity In the Darkest Moments

In the last 10 or so conscious days of Dad’s life, he was present in a way that he hadn’t been in more than a year. 

He slept a lot.  And he seemed to dream because he smiled and reached out his arms.  I hoped that he was talking to Mom. 

But when he was conscious or semi-conscious, he was able to respond to our questions and if one of us said, “I love you,” he would respond in kind.

This was a gift to his kids in his final days.  

First, a back story:

BACK STORY:  Cocktail hour (with hors d’oeuvres) was a time-honored tradition in our family.  As old world as that sounds, we are Jews and so it was Jewish all the way — mostly food and a little alcohol.  Scotch was the drink of choice.  And the food was white fish salad, pickled herring, eggplant salad and, in a nod to the “new country,” mixed nuts.  Ok, so some affectations but we never forgot our roots.  In later years, Dad would alternate between scotch and wine.

So in those last days, we celebrated with Dad, as much and as often as was safe.  And we toasted his life.  Unfortunately, the serving set was less than ideal . . . .

So we all had wine together (scotch would have been too hard to handle).  And we hung out in Dad’s room.  (And when he slept, we had MORE.)

About five days before Dad died, when he was essentially unconscious, SOB (sister of blogger) had the brilliant idea to move a mattress in Dad’s room so that the three kids could be right there any case anything happened. 

SIDEBAR:  The usual night aides — wonderful women — helped us change him when needed and mostly slept in another room.

As I was helping SOB move the mattress, I looked at her and said, “You are on the other side of crazy.  And I am even more crazy for helping you.”  SOB nodded in a way that indicated, “true,” and was pleased that I acknowledged the sibling pecking order of — let’s say loosely — “sanity”.

BOB (brother of blogger) wasted no time throwing himself on the mattress and falling asleep.  SOB and I rolled him as necessary to make the bed.  SOB got on the mattress and beckoned me in the middle.

WAIT. STOP.  My brother tosses and turns and my sister wakes up at the slightest noise.  Is this 45 years ago and am I in the middle in the back seat of the car on family trips, feeling nauseated and poked and pinched by BOB?  Are you kidding me? 

“Nah, I just sleep on the comfy floor.”

“Are you sure?  There is enough room.”

“Yeah.  I’m good.”

Over the course of that first evening of Dad’s effective unconsciousness, Dad’s breathing changed to a Cheynes-Stokes rhythm — no breath for an insane amount of time and then four deep breaths.  Repeat, until you almost kill your children.

So, as you can imagine, that first night, SOB is lunging over BOB to check Dad’s pulse while I am watching wide-eyed and scared because Dad is not breathing.  And then he would start breathing again.

At dawn on each of those days, I would pick up my pillow and blanket and go into a different bedroom to sleep a few hours.  SOB would go to Dunkin’ Donuts.  BOB would continue going through photos.  Rinse. Repeat.  Wonder about sedation. FOR US.

And so it went.  And we shifted sleeping places over the nights. Because, we had some sanity left in us.

Dad died at 2:48am on a Friday with his kids around him.  No one pronounces a person dead, like in the movies.  You just watch it.  And let the initial wave wash over you.  And you know that, in the months to come, the waves will wash you up to shore with a mouth of sand while you are struggling to breathe.

Yep, there is pain.  But Dad had a good and long life.  There is no tragedy here.  There is no anger.  There is, in fact, guilty joy for being able to celebrate a long life well-lived.  An embarrassment of riches.

Ok, because I need to bring it back to humorous. 

Here are things I learned:

  • BOTH BOB and I snore.
  • Do not want to get between SOB and any patient.  Every now again I let my head get in the way of her arm reaching to feel Dad’s pulse.  A painful mistake.
  • BOB thinks I pick wine based on the freakiest or stupidest name.  He may be half-right.  My real goal was to make sure when Dad was drinking his last “cocktail”, we were giving him a good send off home to Mom.

And now I have to get all emotional. 

The greatest lessons I learned are:

(i) we siblings need our own bedrooms,

(ii) we have the craziest memories of childhood and they are all different,

(iii) we siblings are in sync in a crisis, and

(iv) SOB and BOB are the finest people anyone could ever hope to meet.

Yes, SOB and BOB are the finest people anyone could ever hope to meet

I am the luckiest person ever.

Standing on your head matters

Dad is not “right” as you all know.

In the midst of a crazy conversation before lunch one recent Saturday, I decided to show him and Heather, his home attendant, how far I have gotten in my new goal: a hand stand.

I interrupted Dad’s crazy talk, and in quintessentially child-like manner, I said, “Look at me!!” and I did a facsimile handstand facing a wall.

“What in the hell are you doing?  You could hurt yourself!”

I peeled myself down in shock. 

Dad, as if snapped back into the present, was being my Dad.

The sheer shock factor brought him back.

Next goal: The tight rope from the Freedom Tower to the nearest high building.

If it doesn’t kill Dad, it may make him sane again.

What Did Grandpa Know and When Did He Know It

Dad’s world is closing in.  He can understand some things.  But, he no longer tries to understand the intricacies of his care, his insurance, etc.  He refers any material matters to his children.  I think that is freeing for him, even as it is an admission — a resignation — that he can’t navigate the bigger world anymore.  We are here to catch him before he falls.

But at my son’s Bar Mitzvah, when he slowly came to the Bimah and — relying decades’ old some-kind-of-muscle memory — chanted the prayers before my son read Torah, I imagined that Dad understood that his grandson was being called to Torah as a Bar Mitzvah.  Linking the past with the present.  From generation to generation.

My son did a magnificent job, by all accounts (including mine).

Dad was in and out of reality during the day. He enjoyed dancing at the reception, as always, cutting up the floor.

But did he understand what happened?  Did he understand that his grandson accepted his birthright to become a Bar Mitzvah? To hold the Torah and read from it?

In my mind, I said, “Of course, Dad knew!”

But I had no idea.

Then my son said to me, days later, “Grandpa didn’t understand what happened at my Bar Mitzvah, did he?”

“Dude, I think he did, in moments, but I am not sure that he always understood.”

Silence. Resolution. Generational connection lost.  I could feel it in my son’s look and posture.  I felt a desperation to keep the connection alive.

Today, I asked his health aide (who was with him at the Bar Mitzvah), “Tell me for real, FOR REAL, did Dad understand what was happening at the Bar Mitzvah?”

“Well, this week, he told the visiting nurse how his grandson read from Torah so beautifully!!  Some days the light is on and others he is a little in the dark.  But he knew it then and sometimes he knows it now.”

And that is all I need.  I hope it is enough for my son.

True North On the Road to Siberia

I have been generally quiet these past few months about Dad.  Out of respect for him and his privacy.

But, let’s be honest: a mouth as loud as mine can only be still for just so long.

Today’s events are par for the course for so many of us.  We try to preserve our parents’ dignity, by putting cash and credit cards in their pockets and remotely monitoring the financial doings, ready to step in at any sign of trouble.  We also hire lovely, underpaid people to handle our parents so that we don’t have to give up our lives to care for them.  One such lovely person left Dad alone for 10 minutes while she changed over the laundry.  He didn’t leave the apartment (thank G-d) but when she came back, he was on the phone giving his credit card number to someone.

REALLY, Dad?  Really, Heather?  Heather, can you just take him with you to the laundry room?  Dad, could you just speed dial your children instead of handing over personal information to anyone who calls?

Ok, Heather invokes the Blogger family data breach protocol, which means she calls the daughter least likely to curse, but also least likely to know what to do.  And that sends the cell towers buzzing.

Ring, ring, ring, on my cell.  “Hey, [SOB — sister of blogger]!” trying to sound cheery even though I know that a call during the day at the office cannot be good.

Ok.  So, Heather calls my sister who calls me.  I decide not to call my brother, BOB, because, while creating a national frenzy has some appeal (he lives pretty far away), I have the information to handle the data breach.  And why give another person indigestion?  [BOB, sorry you are reading this on my blog, but if I told you, in real time, you would have (rightfully) invoked Blogger family LOCKDOWN protocol, and that would have really sucked.  Besides, I am redecorating the bunker.]

First credit card:  only an endless loop of robotic voices.  But I got it cancelled in less than 20 minutes.

I know what you are thinking, Blogger is a rock star.  She is making this elder care seem like a walk in the park.  And I am so feeling the need to put on my sunglasses on a cloudy day in New York.

Second credit card:  Same company.  This time a real person.  Whoa.  This will be a cake walk.  I need darker shades because my light is so bright.

“I am sorry, but your information appears nowhere on this account.”

“I have power of attorney.  I have had it for years.”

“I am sorry but we need your father on the line.”

After much back and forth about the information on the customer service computer screen and the facts of life, I conference in Dad.

It was the crazy ordeal you would expect.  Heather got on the phone to make sure it was ok that Dad was talking on the phone about his credit card.  [SOB, she redeemed herself.]  Dad did what he needed to do and then hung up.

“Ok, we can cancel this card and issue a new card, but I will have to ask you a few questions.”

I am soooo ready for this. Sunglasses on. Check.

“What are the first three letters of your father’s mother’s maiden name?”

“ITZ”

Silence.  It had to be right because I used it to cancel the card with robot customer service.

“That is not correct.”

What is this?  F#$%ing JEOPARDY?

“Itzik or Itsik.  It is my grandmother for Goodness sakes!! Itzik  Itzik  ITZIK

Itzikkkkkkkkkkkk. Or it could be spelled with an “s” I suppose,” said I meekly.

Silence.

And it worked for the efficient robotic customer service that canceled my other [Bank name] card in a snap.

Yep, I threw it down.  Hard.  I can be (sort of) charming and then, presto, like a light switch, not so much.

What am I, an idiot? [DO NOT answer.]

“You will have to answer the following [trick] questions so we can verify that your father’s authorization was really to his daughter and you are in fact his daughter and he is in fact the card holder [and totally mess you up and enjoy doing so].”

“I am not charging anything.  I am trying to cancel something. But, ok, ask.”  I shouldn’t have added that verbal swagger at the end.

What am I, a schmuck? [DO NOT ANSWER.]

“I am sorry but you answered one or more questions WRONG.  I will need to conference in a security adviser.”

Brief hold with bad music.

“M’am, I have another person whose job it is to make your day miserable.  She will need to speak to your father again to authorize this next level of security.”

Are ya kidding me?

“It would be too confusing for him.  Aren’t there super-secret decoder ring-type questions you can ask me?”

“No, m’am.  We need to speak to your father.”

“No, you will not.”  And hung up.

What am I, the stupidest person ever? [DO NOT ANSWER. ZIP IT.  ZIP IT.]

It was too much.  I could not say why I needed to cancel the card.  I was trying to gloss over my dad’s infirmities.  I was trying to protect him.  And me.

So, what did I do?  I threw my phone against the wall and cursed in frustration.

DO NOT SAY IT. BUT, YES, YES, I AM.

Life Cycle

sc0003369c - Version 2This is a picture of my parents at Jamie’s Bar Mitzvah.  Jamie is my second cousin once removed.  I have seen him three times in my life.  But he and his father, my mother’s first cousin, had special relationships with Mom.  I get that. That Bar Mitzvah was probably a little over 30 years ago.  Don’t Mom and Dad look great?

My son will be called to Torah as a Bar Mitzvah in June.  My mother won’t be there in body.  My dad will be there mostly in body only.

The only child of our Mom’s and Dad’s grandchildren to be called to Torah. And they should be kvelling (filled with pride), standing next to him, making the blessings before he reads from Torah.

I robbed my mother of this moment by having him so late in my life.  Fate robbed me by taking Mom to her grave too early and by taking Dad’s mind from him.

My son’s Bar Mitzvah will be a joyous day but it will be incomplete. Because Mom and Dad will not be there — in the ways I imagined they would be — and I will miss what I imagine as their inevitable tears of joy and pride.

But I know that Dad will labor up the steps to the Bimah, with help.  And he will say the blessings, from memory instilled long ago.  And he will be present, infused by Mom’s spirit hovering over him, as he stands next to his grandson as his grandson reads from Torah.

And, in my mind’s eye, I will see Mom and Dad as they are in the picture.  Vibrant and proud.

And I will cry tears of joy and loss.

Changes

Let’s be honest: hot flashes in the winter do not suck.  Except they rarely come when you are walking in frigid temperatures with howling winds that chill your bones.

No, they usually come at night in your already over-heated dwelling.

Or during a meeting where someone mistakes your sweat for fear.  Hell no, I don’t fear you.

In fact, I don’t fear anything when I am having a hot flash. I don’t have time.

Because I am too consumed by this and other indignities of aging that I wonder who are those damn happy retirees in the TV commercials?

And then I remember that the commercials are about erectile dysfunction, high blood pressure, sleeplessness, heart disease, having “to go” too frequently, not frequently enough, and dry-mouth. Ah, paradise.  Oooooh, dream weaver ad men, how you read my fantasies.  Right down to sitting in a random antique bathtub on the beach. [What is that in the Cialis commercial?]

SO, if commercials are to be believed [work with me here], then, in short order, I will be a diaper-clad, pill-popping, but, otherwise, extraordinarily healthy and vibrant looking, older woman who could wear a bikini if the hot flashes are really too much. No war on gravity; no arms that do the Hadassah-jiggle if I don’t work on my triceps for a few days. And I am driving my sports car.  Now that is the part of this advertisement debacle that doesn’t suck.

And you wonder why I am not responding to you.

Interrupt me at your peril.

 

Being Lunch Meat in the Sandwich Generation

I never thought of myself as liverwurst before, but it does connect and bind the two pieces of bread into a sandwich.  Or maybe vegemite.  Peanut butter is an aspirational concept.

I am a member of the sandwich generation.  The child that needs to provide for her parent(s) and her child(ren). I, and so many like me, are the spread between the pieces of bread.  We keep it all together.

Last week, Dad called, saying he was locked in his art studio and that he needed me to call the police.  He had his coat on and was cold.  I told him I would call him right back on his home line and if he answered that meant he was really at home and just momentarily confused.  He agreed.  But he didn’t actually hang up the phone so I couldn’t get through.  I called the home health aide and we agreed that I should come over and calm everything down.  We are only called in when the episodes lasts long enough to be totally freaky.

I came over, and Dad agreed to take off his coat, since I was doing the same.  Now, how to convince a scared man that he is really in his home?

“Dad, if this were your home, would you know where you keep the scotch?”

Of course,” he said as if I had impugned his very core.  [Ok, I guess that is good.]

Dad went right for it.  Score 1 for the older generation.

“Dad, if this were your home, where would your underwear drawer be?”

Dad found that, too.  Score 2.  While we were standing in front of his bureau, I asked:

“Dad, do you recognize some of the people in the pictures?”

He did.  Not all but most. Score 2.5.

“So, Dad, if this is not your home, then it is doing a good job of making you comfortable.”

“But you see all of the paintings . . . ” He was referring to the paintings and sculpture in the living room and dining room.

A-ha.  He doesn’t recognize that those are his and Mom’s.  This is a huge downward trajectory for Dad.  “Daddy, those are your and Mom’s paintings and sculptures.”

He seemed to start to understand.  But not yet.

“Dad, if this is not your home, then this is a great art studio.  I am going to have some wine while you have dinner in your dining room.  Join me?”

Dad ate a little and had a little wine (less alcohol than scotch).  We talked.  Mostly non-sense (as in I had no idea what he was talking about) but slowly he was calming down and returning to earth.  Finally he said:

“It is good to be home.  And so lovely to have you over for dinner.”

“Yes, Dad, it is a treat to see you midweek.  Now I am going home.”

We kissed good night.  I hugged his home health aide knowing that she allows me to have a life separate from Dad’s because she only calls in the cavalry when she cannot snap him out of it within a reasonable time and he is a flight risk.

I get home and hug and kiss my son.  We talk about the day and the weekend ahead, during which we will all attend a Bat Mitzvah.

“E-mom, remember, don’t hang around me during the Bat Mitzvah.  It will be embarrassing.”

“No problem, buddy.” What I wanted to say was, “I don’t want to watch you and tweenage friends behaving in a way that will make me skin crawl.  Besides, I am going to hang with the adults and behave in a way that will make you cringe from afar.”

But instead, I took my victory from the top bread and didn’t squeeze too hard on the bottom bread.

Maybe we could be a panini.

New Year’s Day in the Coffee Shop of the Undead

Ah, life in the Coffee Shop of the Undead is, well, hanging by a string.

Back story: http://40andoverblog.com/?p=5641; http://40andoverblog.com/?p=4858; http://40andoverblog.com/?p=5701; http://40andoverblog.com/?p=4435

Maybe not life, as much as sanity.  Ok, not sanity so much as functional insanity.  Life in the Coffee Shop of the Undead is measured by the functionality of those with dementia and other neurological disorders.

I guess it is also measured by physical compromise.  If you aren’t crazy, then you are most likely so enfeebled that, if you make it to the place from your house, you (actually, your home health aide) should do a victory lap around the (tiny) place.

So where else would Dad go to see his friends?  Regardless of Dad’s daily level of crazy, which hit the nuclear contamination levels today, he tips his hat to the elders already seated.  For over 50 years, some of them were just passersby on the street, but now that they are the surviving remnant, they acknowledge each other.  Others, like Marty and Joan (the kids of the group at mid-to-late 70s) get a real greeting.  Dad reserves the warmest greeting for Sam, his old friend.

But Sam wasn’t at lunch today. Always a worrisome sign.  Sam has Alzheimer’s and some other dementia diagnoses, but like any disease, he can function some days and not others.

After we left the coffee shop, we bumped into Sam just outside.  (I am grateful that Dad and he have known each other for so long that, even with his mental disease, he recognizes Dad (and us)).

We greet Sam.

Sam says, “I have some very bad news.  I was going to call.”

SOB and I hold our breaths.  Is it his companion, Norma?  Is it his ex-wife? His daughter? His granddaughter?

Sam continues.  “My brain is not working so well.  I have issues now.”

SOB and I exhale at the same time.  THIS IS NOT NEWS. EVEN TO SAM.  HE JUST CAN’T REMEMBER THAT IT ISN’T NEWS.

Dad — even with his nuclear-level dementia today — didn’t miss a beat, “if you would like company, we will come over or, food, we can bring it over.”

SOB and I marvel at the way Dad can summon the man he was for a friend in need. 

The man he was.  The totally addled man he is.  They live side-by-side in the same body.

That is why it is so hard to handle the bad days.

Because there will be good moments to give a child hope.

And then, a moment later, the child wonders where her daddy has gone.

 

When the future loss seems real right now

I have chronicled Dad’s decline, and his surprising cameos in reality.

Something has changed.  I couldn’t articulate it until I bumped into SOB (sister of blogger) in the gym locker room.  Because why not discuss our deeply personal business when naked women are blow-drying their hair, I said:

“Something is different with Dad”

“He is winding down.  It is sad.”

“It isn’t just his heart failure —

SIDEBAR: everyone over a certain age is in heart failure.

— have you noticed that he doesn’t annoy us so much anymore?”

We both had a think about that.

Dad was once a maestro at making us nuts.  When Mom was dying, we knew that we would move in and disrupt our lives to care for her.  Dad was different; he was too damn annoying.

Now, we are talking about taking turns staying over (along with his 24/7 care) if necessary.

What is different? 

Dad is now a lovely old, nutty man who has — maximum — two or three habits that make SOB and me nuts.  That’s it.

Wait. 

Whaaaaat?

WHERE IS THE MAN WHO, WITHOUT EXERTING A MUSCLE, COULD MAKE ME NUTS BY TALKING ABOUT THE PRICE OF BANANAS OR COMMENTING LOUDLY ON OVERWEIGHT PEOPLE ON THE BUS? OR COULD BE PASSIVE-AGGRESSIVE WHEN A CAB DRIVER WAS TALKING ON THE PHONE INSTEAD OF ASKING HIM TO END HIS CALL?

Yes, the change.  Dad being Dad as he is now doesn’t make me nuts.  (Dad’s dementia, however, makes me sad, mad and crazy.)

I wished that my father would stop torturing me all these years.  Now I understand the maxim: “careful what you wish for” because the quid pro quo in my case is too heartbreaking.

Thankfully, dementia is not linear.  The old Dad shines through sometimes.  Just this weekend, in advance of Thanksgiving, where we serve brisket instead of turkey, he asked:

“Did you remember to get the lean cut of brisket and did you find someone who knows how to carve it?”

Oh, Dad, the miracle of your annoying ways made my eyes well up when I responded:

“Daddy, I am good at a lot of things, but not carving brisket.  You may have to deal with the usual thick slices, ok?”

Pause.  Silence.  Resignation.  “Of course, darling.”

Ah, the gifts that can light up an evening sky.