Showing posts with label Dementia. Show all posts
Showing posts with label Dementia. Show all posts

Thursday, November 15, 2012

The Fading


My mother was mostly very happy to see me today, but still, there were moments when the tears welled up, overtook her.

"I'm so lonely" she says. And I have nothing to offer. "I miss your father so much. He wasn't just my husband, he was my best friend." All I can do is hold her hand, murmur that I miss him too, pass her a tissue from the ever present box, to dry her tears.

Physically, she is in good shape; remarkably good shape for all she has been through and the state of her noisy, glitchy heart.

But I am losing her, bit by bit.

Moment to moment she is still herself, her eyes clear, her hand gripping mine in gratitude for my visit. We talk, we laugh.

And yet the dementia is visible everywhere. Her short term memory, bad for years, is now gone. Completely gone. And the long term memories are slip-sliding into the vast ocean of forgetfulness too.

I tell her of Simon's impending visit and instead of excited she looks quizzical. "Who is he again, now?"

"Your grandson." I tell her. "Bruce's son."

"Oh. How nice!"

And not two minutes later.

"Who is coming to see me?"

"Your grandson Simon." I call up his picture on my phone thinking that will help trigger memories.

Simon

"Oh, yes," she says, "such a handsome boy!"

But then after a mere moment, "Whose son is he again?"

And thus it comes.

The fading.




Friday, October 19, 2012

Amy Grant talks (and sings) about Caring for Aging Parents on Katie Couric, and I was there...


What do Katie Couric, Amy Grant and I all have in common?

We have all gone through - and are still in the middle of - caring for aging parents through their physical and mental declines.

And how do I know this?

Katie and me
I was invited to the taping of Katie's show on Taking Care of Aging Parents, which airs today (at 3 pm here in NYC, check local listing for elsewhere), as a special audience blogger/tweeter. It's a lovely way Katie and her show are actively engaging bloggers and the social-media-connected generation.

I was also asked to contribute a post for the Katie show blog, and you can find it here: Caring For My Aging Parents

I highly recommend you watch this show if you have any interest in this topic, or even if you don't but you have still living parents or other older people in your life you may end up caring for some day. And even though it may SEEM years away still, you never know what fresh disaster is just around the corner (ever the eternal optimist, I know) to make that hazy "someday" instantly morph into today.

It is intense, exhausting, deeply rewarding, filled with love and sorrow, and something nobody thinks about - or wants to think about - until it is thrust upon them. It's better to be prepared. Don't turn away just because it's unpleasant to think about. Watch and start to plan now!

Also Amy Grant gifted us with a live performance - the world premiere of a new song that she wrote for her parents, her mother now passed on, her father deep in the throws of a grave dementia.

Amy Grant performing on Katie

Blogging the show was a great experience. I got to hang out in the green room beforehand, watch the show from the front row, and comment on it throughout via my twitter stream. Katie sat next to us bloggers during Amy's moving song.

Me at Katie

It was also fun to be back on a soundstage, reminding me of my former life in film & TV production. Sigh. And then it was back to "real life" (taking care of kids and mom).


Tuesday, October 9, 2012

Her way home


"I just want to go home!" she barks, frustrated, angry, bone weary tired. Then with a whimper and a catch of breaking tears: "Varda, why won't they take me home, now?"

Home. A shifting and shifted concept for my mother.

Home now is a nursing home; half a room; one dresser, one wardrobe, one nightstand and one small bookcase hold the sum of her worldly possessions, whittled down to a nubbin.

"I'm so sorry, Mom. You can't go home today, Mom." Holding her hand, leaning close, I try to break the news to her as gently as I can, for yet again the tenth time within the past three hours that we have been sitting in this, the intake office for the geriatric ward of a psych hospital.

"Why not?" she wails, distraught. "I just want to go home!"

"Mom, your home sent you here to get help; to make sure you're safe. Do you remember what you did?"

She stares at me blankly, searching her near non-existent short-term memory.

"You held a butter knife up to your throat at the lunch table and declared your willingness to end it all."

"Really?" She asks. "I don't remember doing that."

Of course not.

"Mom, you have to stop saying things like that. Then they'll send you home."

In spite of it all, as always, the sense of humor remains intact: on being told she had to stay at the psych hospital until she stops making suicide threats: "Motherfuckers, don't they know a butter knife won't kill you?"

(Yes, I'm a chip off the old block.)

Neither I nor the Psych ER team who evaluated her think she's actually a threat to herself or anyone else. But yes, she is deeply depressed (as her situation IS deeply depressing, with no end in sight) and she does need help to lift up out of it.

And so the nursing home, deeply concerned, has insisted that she ship out until she shapes up.

I understand it is their job to keep her safe. They felt they could not adequately do that, were afraid of the consequences of failure.  But still, I think there has to be a better way, one that will not disorient and frighten her so, on the path to saving her.

Hollow speculation, however, as this is our way now, her way.

No way around it.

Have to go through it.

Mom's going on a bear hunt.

To find her way home.


Just Write

Monday, October 1, 2012

October Thoughts

Mom, on the last day of September
It's the first of October... and what will this new month bring? Certainly more visits to my mother, twice or thrice weekly, sometimes with a boy or two in tow, sometimes not. (This past Sunday, with.)

Mom & Jake on Sunday
The air took a turn for the crisp today, and I was so ready for that, as my thoughts are gliding towards the autumnal too: a little sad, the bitter mixed in with the sweet. These are the days of waning and I feel that in nearly all things right now.

None more so than when visiting Mom.

She is so diminished, I don't even know what to do with my feelings when I see her. I just try to care for her as best I can. I hold her hand and look into her eyes. We talk a little but not so much, the deafness being a barrier as well as the cognitive dimming.

I take her out into the courtyard every time I come so she can get fresh air and see the trees and flowers, birds and squirrels - what passes for nature in a paved suburban enclave. I massage her shoulders - feeling the muscle melting away, more bone and less flesh each time - and try to make sure she is being properly taken cared of.

But "Mom"? Pretty much not there any more. Just a sweet old lady with a few of her memories (and fewer by the day).

Ethan is a soccer player now

And yet there is also this: Ethan woke up earlier than usual this morning, at the same time as Jake. Unable to fall back asleep, he joined us in the living room, and instead of his usual cranky not-ready-to-be-awake self, was incredibly helpful with getting Jake ready for school.

Ethan remarked upon the still dark at that wee hour, pondered the breaking dawn. He also kept track of the time and kept himself rather on schedule to get ready for school, too. And that was just the beginning...

I had a trying day today. Literally. An Impartial Hearing is in progress with the city's DOE over Jake's schooling, and today was an in-session day. I obviously can't talk about any of the details of it, as it is... in progress, other than to say: it's about as much fun as you imagine it to be.

The hearings are in downtown Brooklyn, and we are keeping our babysitting down to a minimum these days, which meant that Dan was in charge of the boys this afternoon until I could wend my way back to the Upper West Side of Manhattan.

I came home to find quite a scene: Ethan was in the middle of patiently helping Jacob with his homework (had gotten half his own homework done already, too).

You could have knocked me down with a feather. If you are at all aware of the normally fractious relationship between my boys (just this weekend, for example) you will be stunned at the miracle this event represents.

And then? And then? And then...

Ethan made dinner for himself and Jacob. Nothing elaborate, rather basic - organic hot dogs grilled in the toaster oven, cut up fruit, baby carrots, bread / rice crackers. But still, he took the initiative,  volunteered, followed through. Incredibly proud of himself afterwards (and rightly so).

So maybe another thing this month that's autumnal and waning is a good thing: Ethan's nine year-old obnoxiousity giving way to some incoming ten year-old maturity. A mightily welcome October surprise indeed.

And I'll leave you with a little more bit of October:

A live performance from The October Project - an old friend of mine's band from the 90s. They're lovely if you've never heard them. Haunting alternative rock. Had a few albums out. Enjoy....




Monday, August 20, 2012

Hodge-podge Edition

Five things I want to tell you (updates and downloads of momentary thoughts from my currently chaotic brain) in no particular order. Kind of like what you'll get if you open up one of my kitchen drawers (don't ask):

1. Ethan has been dropped off at camp.

Ethan, excited at camp drop-off
Five whole days apart. I am missing him. And yet? Wow, is the house quieter and more peaceful.

Every now and then something happens and I realize yet again that my son who doesn't have autism is actually higher maintenance and more exhausting to parent much of the time. Go figure.

2. And Jacob? About to do the same with him on Tuesday, a return to the wonderful ASD Jewish camp program he went to last summer. The one I had to drive like a bat out of hell up to last summer, a full day early, to pick him up and then race Hurricane Irene back down to New York.

Please let this year be a repeat of the wonderful time he had last year, but can we just skip the hurricane emergency and accompanying parental anxiety? Thanks in advance, gods of Autism. And extreme weather.

3. My mother is doing... better. I have heard that the swelling around her eye has gone down considerably. It was so hard to not be with her yesterday, but I had to take Ethan across 2 states to camp, and then come back, and I just didn't have it in me to then travel an hour each way in an opposite direction. (Many thanks to Suzanne who lives one town over, and came to visit my mom in my absence. True friend.)

I will spend today with her. Hopefully she can go home. Even if that "home" is no longer a true home (sob), but just her nursing home bed, it's better than a hospital one.

Mom is constantly anxious about her glasses, which I will be bringing with me today when I see her. But she forgets. This is the tragedy of my mother's cognitive impairment. In the moment she is so with it: bright and connected and funny and kind. But her short-term memory, her ability to make things told to her stick? Is just... GONE.

And so she is constantly anxious and worried and upset about mysteries that have no need to be mysteries if she could just remember. But she can't.

I HAVE her glasses. They have been fixed. I will bring them to her today. She has been given this information at least twenty times in the last two days. But I am positive she will wake up this morning not knowing where her glasses are, and worrying that they are completely broken and she will never get them back.

Number 342 of the things that are breaking my heart.

4. I am having a really hard time right now with all that's going on (and I'm not even telling the half of it). Anxious. I do not feel anxiety often. Which is a good thing because I tolerate it REALLY poorly. I am jumpy, twitchy and more distracted than usual. My ADD goes into hyper-drive. And I get really cranky. And negative.

And I write things like this:

When you've been spending time with your sad, injured mother, you tend to think ungenerous thoughts about strangers as you walk around streets of New York, like: "How come YOU get to stroll down Broadway chatting with someone who is clearly your sister, with your twin, odd, ungainly gaits while my Mother has to lie in a hospital bed with a baseball sized purple goose egg swelling her eye shut?" 

The brain screams NotFairNotFairNotFair as I and everyone else just walk about on our daily routines, oblivious to the manifold disasters that lurk around each bend. Every able-minded and -bodied person is just one misplaced step away from becoming a member of the underclass injured, the invisibles who shuffle or wheel among us oblivious, lucky folks.

See? I am just SO much fun right now. (Yes, it IS appropriate to start feeling sympathy for my husband right about now.)

5. Squirrel! ... Shiny! ... Was I going to say something else i was going to tell you? Never mind. I'll remember later. You don't mind a call around midnight, right? Or better yet - something to post about tomorrow.


Saturday, August 18, 2012

Fallen

Mom, 4 AM, Saturday, August 18th

I am doing time in a hospital ER again.

It's 3 AM again (actually nearly 5 by now).

There was a phone call at 2.

2 AM phone calls are NEVER good news.

That it came today, when we were back home in the city, returned just this past evening from our Berkshires vacation was a blessing. But also, of course, a curse.

So here I am, again, on 2 hours of sleep again, with my poor hurting mother.

What happened was: she fell. Again.

Mom fell in the bathroom of the nursing home where she now lives. The aide who had brought her in there was being kind, giving her some requested "privacy" for a moment, so had stepped back, was hovering just outside the (open) door.

But Mom forgot that she was supposed to ask and wait for help when she was done and attempted to get up by herself. You can see what a good idea THAT was.

She fell, hard; clonked her head but good on the sink. Additional assorted body parts also made contact with surfaces harder that they should have. And she was sent off to the local ER to rule out fractures, brain bleeding & other such fun stuff.

When I arrived at the ER, I took this picture. Believe it or not the eye looks much worse now, a veritable goose-size egg rising under the purple, bleeding surface of her lid and brow.

And yet, my mother, being my wonderful mother, still has a sense of humor about it.

She kept asking "Why can't I open my right eye?" (Yes, her short-term memory issues are so bad she kept forgetting what had happened to bring her into the hospital. Albeit the percocet may have contributed to the fog.) So I showed her the picture.

Her response: "But you should see the other guy!"

And also she managed to look on the bright side: "Doesn't my hair look great?" Love that mother of mine. (Wonder no more where I got my gallows humor from. And my father was even worse.)

So.

Here we go again.

On the up side... astonishingly, unbelievably, no bones were broken. Her ribs, elbow, hip are bruised. Skull: intact, with no brain bleeds.

Just one massive, ugly shiner-to-beat-all-shiners.

Oh, and also maybe it's a good thing that something landed her in the hospital, because as they were doing all those x-rays to see if she'd broken anything, they found some fluid in her chest. At first they thought it was maybe in her lungs, and that she was brewing a pneumonia, but then concluded it was around them, in the pleural area, and she was instead in the wee early phase of an incipient heart failure.

Which they are now fixing.

So yes, obviously she was admitted into the hospital.

Good thing I wasn't going to that family wedding this weekend, after all.


Saturday, July 14, 2012

Week in Review (with pictures!)

I'm still pinned to the wall, a bug squashed against the windshield of life.  And yet I want to check in here, to let you know...

Some things this week went right:

Ethan & friend preparing to launch on camping trip
Ethan had a great 3-day overnight camping trip with his day-camp. He's been watching the older kids do this for years, and now he finally IS them. Perfect weather. Good friends. Kid food galore. And he came home only slightly sunburnt. Total win.

Jake asked for and got a haircut Friday, and is very happily telling everyone about it.

Before the cut
Haircut! (Handsome boy)

I had a lovely, long visit with my mother Thursday. I gave her a manicure, a lenghty process as I have to do one hand at a time and let it totally dry before doing the other one.

This is because she has a need to blow her nose. A LOT (she has a two tissue box a day habit). And so if I do both hands at once, one gets ruined in the nose blowing/wiping process. She just can't help herself.

Mom, showing off manicure

I went to dinner with her, which was a good thing as I found out that in spite of my talking to the nutritionist at intake, she was getting food she really dislikes. No wonder she isn't eating enough and is losing weight.

I looked at the tough hunk of "pork loin" on her plate and asked why she had chosen this for dinner, as I knew it was not going to end up crossing her lips. "I don't choose, they just bring me food." was her reply.

"Mom, you fill out a menu choice form." I remind her. "No," she says "I don't. They just bring me food. I don't like a lot of it."

So those menu things they bring each week that she's supposed to be circling her choices on? She was just adding them to the pile of papers on her dresser. Had no idea what they were for.

It seems no matter how many times you tell people your mother has cognitive and memory issues, because she is so bright and with-it in the moment, they treat her like she is capable of a level of self-management and decision making that she really just isn't.

You can't just hand her a menu and tell her to turn it in later. You have to sit with her and ask her questions. Fill it out for her. Really. 

I had a long, possibly LOUD talk with the head of dining and now *I* will get the weekly menus to make choices for her.

After dinner (a nice piece of fish was hastily procured for her, and she ate a good half of it!) I took her outside into one of the courtyards. It had been too hot early in the afternoon when I had arrived, but by six thirty was delightful.


Mom loves flowers so. It lifted her spirits immeasurably to sit in a garden, even a somewhat scraggly one. And it was the perfect place for me to give her a good shoulder / neck / back massage (as I try to do every time I visit).

I left her in her room, digging in to the new puzzle book I'd brought. She had been awake, alert and lively for the entire visit. A vast improvement over past weeks, and even just this past Tuesday. Step by step. Bit by bit, coming back to life.

And then I was on to see my aunt, uncle and cousins, not even a mile from Mom. We sat in the yard and drank in each others company and cocktails (virgin for me, drive home ahead).

Flower in my aunt & uncle's garden
How much I love my family can not be measured. How they are circling round the wagons, all come in to care for and spend Eva's last significant days with her, so beautiful to see.

Greta, 14, borrowed my iPhone to take "selfies"
And Eva herself had a bit of a rally. Was asking for food. Small bits, but still, strawberry ice cream, blueberries, tiny bites of all sorts of treats were being gobbled up.

I left late, after dinner and many laughs and hugs.

Passed yet another major accident on the highway. Grateful, again, that it wasn't me. Grateful for so much, as I wearily made my way home.




Wednesday, June 27, 2012

My Heart, Her Heart


No one ever tells you how hard it's going to be, this caring for an elderly beloved, as you enter the endgame, the last few months, maybe years; this reversal of roles so deep I've really completely forgotten what it was like to have a mother who was my parent and not my child.

She breaks my heart every time I see her and yet it breaks her heart every time I say goodbye and leave. She clings to me like a toddler whose mother is off to work. "Varda, please, don't go!" And then she apologizes because she knows I have other, pressing responsibilities I must rush back to (my "real" children chief among them).

And that hurts even worse, when she quietly sobs out: "You are so good to me, I don't know what I would do without you." Because I know that even my best is not nearly enough. She needs a companion, someone by her side, with her night and day as she was for my father as he went through his rough patches and then those awful, final three months of active dying.

But he's gone now and it's just me. And my heart and time are divided, parceled out to others, too. Not fair, but what it is.

We don't have much time left. She knows that, senses it even though no one has said anything to her directly. It's her memory. She keeps forgetting she has a progressive, terminal heart condition.

Whenever a new doctor listens to her heart and out pops some version of "Wow that's noisy!" (as critical aortic stenosis is wont to be) she explains: "Oh, yes that's my heart murmur, I've had it since I was a little girl."

But it's not, it's this new thing - or relatively new at any rate - on top of that old thing (her sizable mitral valve prolapse) but why tell her again what she's going to forget again in five minutes time? Sometimes the doctor discretely says nothing, but I can always see it on their face.

When I went to see her on Monday she searched my eyes for confirmation as she took my hand and said: "Varda, I'm not doing well, I don't think I have much time left."

I was stuck, pinned to the wall.

I didn't want to lie to her, nor hurt her with the truth, so I evaded, "However much time you have left, Mom, let's enjoy it, and each other." (Lame, lame, lame, but all I could come up with on short notice.)

And I kissed her white curls yet again and hugged her shoulders in that not quite satisfying way that is the only possible hug when someone is in a wheelchair.

I come bringing puzzle books, grandchildren, seltzer, chocolate and my loving presence.  I wish I could clone myself, so I could leave me behind like all the else. But that's just science fiction, a pleasant fantasy.

I come and then I go.

On Monday I left her in the dining room, playing bingo, one old lady in a wheelchair among a small sea of others. I would say "her peers" but she is peerless, my mother.

No one ever tells you.



Just Write

Friday, June 1, 2012

One more day


I have now gotten through one more day with my mother in the hospital. She is in her 4th room in seven days - 5th if you count the ER - and she is disoriented. (Well, I think I would be too, in that situation.)

She is also, for the first time this time around, unfortunately, in the "A" bed now, which means the one near the door, not the window. And for my mother that means trouble, always. I have learned this by now. But try getting the hospital staff to listen to me...

My mom, struggling with short term memory issues under the BEST of circumstances (let alone the disorienting journey that is hospitalization) needs all the external supports she can get to help her know where she is and why she's there, what time it is and whether is is day or night.

And a window? Wonderfully useful to figure out whether the clock on the wall is telling you if it's noon or midnight.

Without this knowledge she gets anxious.  Today, every time she drifted off and then reawakened - which meant about every ten minutes - she would ask me, fearfully: "Is it morning or night? What time is it? What am I supposed to be doing?"  And also, often: "Varda, where am I? What happened to me?"

It's Groundhog Day all over again (and over, and over, and over again).

I considered making a voice recording on my phone so I could just hit a button and play it back for her each time, instead of leaning in to her good ear to speak the following, very clearly and in the perfect cadence that is neither too slow or too fast, with a voice that is neither too loud nor too soft:

"Mom, you're in the Hospital. Last Friday - a week ago now - you fell and broke your hip. On the left side, this side, here." (As I lightly touch the top of her left leg.)  "You had surgery on Sunday to fix it and they did - they put a metal rod and pins and screws in, good as new."

"But you heart had a hard time with the surgery. So you had to go to the ICU to get better. There was a machine breathing for you, with a tube down your throat, and you were heavily sedated. You probably don't remember anything from those days." (She shakes her head, she most certainly doesn't. This is all news to her. Again.)

"Then you got better, so they took out the tube and woke you up, and moved you to a room. Bruce came to visit for a few days." (She nods but she's just being polite. She has no memory of that either, it being more than an hour ago.)

"And now you're in this room, on the orthopedic floor, and you need to work on getting stronger and using your leg now. It's (insert time here) and time for you to (insert desired activity here - eat, rest, get your vitals taken, have PT) soon."

Mission accomplished.

Until the next time.


Tuesday, May 15, 2012

This is Not a Post

This is not a real blog post.

I just don't have time for that right now. Neither the time nor the energy. So I'll just sketch things out. You can fill in the details.

I thought things would slow down after Listen to Your Mother had come and gone.

Not hardly. There's always something. All the little things I didn't do in those last frantic weeks of preparing for the show? Still needed to be done.

Mountains of laundry. Sinkloads of dishes. A living room that looks like a toystore threw up in it. The house elves did not come in and magically take care of all that shit.

And in the midst of it all I decamped for an overnight to Philly to hear THEIR own LTYM.  A one day road trip with my producing partner Holly, the Culture Mom, which couldn't have been more fun.

The wonderful LTYM - Philly Producing Team
But I returned to the same workload I had left, and then some. (Dad in charge. Need I say more?)

And then there was Mothers Day. More work. A brunch in New Jersey with the in-laws.

If this were a post I would tell you how tough it was this year on Mothers Day, being with my mother, who is a mere ghost of herself. She has forgotten who nearly everybody is. She could barely walk, gets less steady on her feet each passing week, yet won't use the rollator walker - of which she has THREE - out of stubborn pride.

Mothers Day
It makes me really sad to be around her. I want my Mommy back. Even the befuddled, filter-less mom I've been taking care of these past few years was still feisty, funny. I'll take her.

This subdued old woman who just sits and vaguely smiles with nothing to say and no idea where she is or why she's there? Just breaks my heart.

She appreciated the sunshine and greenery on the backyard deck. She smiled at our niece's toddler twin boys who so remind us all of toddler Ethan & Jake, simultaneously so long ago and just a blink away.

But she no longer plays with my boys. Doesn't know how to talk to them, their interests incomprehensible to her now limited comprehension.

If this were a post I would tell you about how Jacob has developed a whole new panoply of annoying habits this spring, including a frequent maniacal loud giggling laugh that we call "the silly laugh" because calling it "the maniacal creepy laugh" is just too... creepy.

I would tell you how the medicine that was helping Ethan to focus all year started to make him paranoid and angry so we had to stop it, and now we're back to square one.

I would tell you.

But I'm too tired to write that post. You'll have to fill in the blanks. I'm sure you can.

Now, sit down here and take a little nap with me. There, that's nice. And when we wake up we can fold some laundry. And I will tell you...
 

Just Write
I am linking this up with Just Write, because this was ... just written.

Tuesday, November 9, 2010

Here We Go Again

I was going to call this post: "Old People Dying, Round 3" but realized that sounded a bit too... callous? direct? slightly deranged?  I am actually none of these things (well, maybe the deranged label fits a bit).

I am just... weary, resigned, engaging in a little gallows humor to lighten the load; sick of the dying and the caring for the dying, which seems to endlessly go on and on and on this year.

So, here we go again... and no, thank goodness, it is NOT my mother.  That much I could not take.  If it were my Mom this time I would not be blogging, I would be lying curled up in a fetal position on the floor blubbering away.

It is, however, my mother's (80 year-old) baby sister, my Aunt Marilyn.
Mom & her sister, my Aunt Marilyn
Haven't heard of her?  Not surprising, no one has.  My children have never heard of her, let alone met her.  My husband has heard of her, but again, they have never met.  I myself have not seen my Aunt in 8? 10? a dozen years?   Really, it was some time ago, I have lost the count, and then for quite a number of years we lost my Aunt.

And how and why could a family member get so lost?   Well, you see, for as long as I can remember Aunt Marilyn has been lost to herself, too, in one way or another.

Lost how?  Well, let's just say that when my cousins and I refer to her as "crazy Aunt Marilyn" we don't mean wild and fun.  And we're not being cruel, just realistic.  Aunt Marilyn is deeply mentally ill, and has been for as long as we have known her. 

Crazy / mentally ill how?  Good question.  Aunt Marilyn has had so many diagnoses in her long life, but the ones that seem to stick are some combination of severe bi-polar and paranoid schizophrenia.  She lost the family gene pool when it comes to brain chemistry.

My grandfather, her father, suffered in much the same way at the end of his life, the last 10 years of which he spent in a state mental institution. At the time psychiatry and diagnosis were not what they are now.  He was labeled with "severe depression due to hardening of the arteries", drugged up to the eyeballs, and died a ragged lonely man when I was seven.

For Marilyn, it's been a struggle most all of her life.  She held a job until 1968 or so, but that was only due to the kindness and generosity of her employer who treated her like family, put up with much mishegoss, and then, finally, couldn't any longer.

She was never homeless.  A rent controlled apartment was very helpful in that regard.  Although during a psychotic break, when she went missing for a week, she was found, finally, living in the bathroom at Penn Station with her life's savings in cash incredibly still stuffed into the pockets of her overcoat.  The radio that had been implanted in her head had told her to leave home, go there.

The fact that she has made it to this ripe old age is somewhat of a miracle.  A miracle combined with the fact that when she is being less crazy (she is never, truly sane, just more and less crazy) her core personality can actually shine through.  And Marilyn, the less crazy person?  Is all kinds of smart and funny, charming and wonderful, irresistible and charismatic.  Also, in her younger days?  Quite beautiful.
That's Marilyn on the left, with my Mother, Aunt Eva, Grandmother, Father, Uncle Walter.
So when she is being her somewhat saner self, Marilyn gets people to care about her, to help her, to take care of her... until she cracks wide open again and acerbically and emphatically pushes everyone away.  Paranoia manifested big and bold is no fun at all for anyone, deeply destructive of the self and shredding of all relationships; corrosive acid sprayed in all directions.

Which is why I haven't seen her in a dozen or so years.  My helping hand has been bitten too many times, I stopped stretching it out.  Same with my mother (although she has seen her more recently).  She would visit Marilyn, whether in her apartment (while she still had an apartment), or in the hospital (during one of her many psychiatric hospitalizations) bearing gifts aplenty.  A few visits would go well, and then the tide would turn, there would be accusations and bitter words, because nothing was ever enough for Marilyn, whatever you generously gave, you were accused of withholding all the rest.

There would be attacks, usually verbal, occasionally physical, and my mother would storm off, muttering "The hell with her!" under her breath, tears streaming down her eyes; wounded by and hurting for her beautiful baby sister who had come to this, become this wretched miserable creature.  And then some time would pass, sometimes months, sometimes years.  And it would start up again.

But age is not kind to the mentally ill, and in the past dozen or so years there have been very few periods of lucidity, and our last encounter ended quite horribly.  There was violence, we withdrew.  And Marilyn finally lost her apartment, entered into a series of nursing homes, and we lost track of her for a while.

But she is still family, so when my Uncle Walter, her big brother, called me Sunday night to tell me Marilyn was in the hospital and not doing well, and could I please tell my mother (his big sister) about this, and could we go see her and meet with her doctors?  Of course I said yes.

Coincidentally, I had been thinking about Marilyn a lot lately.  Jacob's new school is in her old neighborhood.  On the days when I pick him up, we sit and eat our snack in the square where she hung out, was a regular; one of those people settled in all comfortable on their own personal benches, one of those "crazies" that you avoid because their laugh is a little too close to a cackle, and maybe they don't smell so nice.  I've been thinking I should try to find her again, wondering if she were still alive, thinking my mom would be wanting to see her sister about now.  And then, Sunday, the call.

So today, after going to my mother's apartment and yet again "fixing" her "broken" TV ("Mom, you changed the input again -- just don't touch THAT button, OK?") bringing my mother to the audiologist to pick up her hearing aid (yay!) and having them program it ("Why is everything so loud now?") we headed over to the hospital to visit Marilyn.

I was acutely queasy as we walked down the long, long corridor to her room at the end of the ward, my dread growing with each slow step forward.  I knew she would be in terrible shape, aged well beyond her years by the hard life she had led.

I'd learned she had been hospitalized for a week, transferred from her current nursing home to the ICU with a raging, life threatening UTI gone septic.  Infection vanquished, she had remained nearly catatonic, refusing to speak, refusing to eat.  Feeding tubes had been put in and were quickly pulled out, rejected.  She wanted to be left alone.  She wanted to die.

We tiptoed into the room, she was indeed looking ragged.  My mother started to pass the first bed, head toward the next when I stopped her, recognizing a familiar shape of nose.  Asleep when we arrived, I touched her arm to awaken her.  She stared, startled, but recognized us.  Behind her large eyes, now sunken, the piercing intelligence that has always been there peered out, missing nothing.  "Is it cold out?" she asked, noticing our down coats piled on the chair.  Her voice was a horse whisper, speech slurred by a complete lack of teeth.

We told her we had lost her, but that now found we were here to stay in her life.  We took turns holding her hand, stroking her arm.  I showed her pictures of my boys.  My mother shared with her the death of my father, her brother-in-law. 

She was clearly glad to see us.  But when lunch came she still refused to eat, set in her determination to be done with it all.  Or maybe the senior dementia has overtaken her everyday crazy and she has forgotten how to eat.  Or maybe she thought they were trying to poison her.  In any event, the outcome will be the same, soon.

It was, by necessity, a short visit (I had to return home to retrieve a child) but we reassured her we would be back within a few days.  Her eyes followed us out of the room.  Her doctor arrived just as we were leaving, hurried words exchanged, my promise to return the next day extracted.

Sometime soon I will tell more tales of my Aunt Marilyn, of the years of my childhood when she was a regular part of my life, when the "crazy" referenced more of the zany and wacky, the youthful and fun aspects of her personality, and less of the truly meshuggina. 
Marilyn, my Dad, my Grandma, cousins Annette & Jessie (with cello) & Me
Believe it or not, in our family "Crazy Aunt Marilyn" is a term of affection, of acceptance.  It's just who she is.  And we have always loved her, even in absence, even though when around she often drove us... crazy.

Tomorrow I will meet with her "team" at the hospital and we will decide how to move her into palliative, hospice care; how to prepare for her ending.  Tomorrow we will plan for the final days of a life that unraveled a long time ago, a life that has been hanging in lonely, stringy tatters for oh, so long.

Tomorrow I will again hold the hand of my childlike, wizened Aunt, as she turns her piercing gaze upon me.  Tomorrow I will look back through the tunnel of time to see before me the beautiful girl with the big dark eyes who wanted to be a dancer, my mother's baby sister, my "Crazy Aunt", Marilyn.
 
Update: My Aunt actually rallied, did not die, began to accept some nutrients, she will still eat no solid food, but will drink juice and milkshakes.  She has since moved back to a nursing home, although she cycles in and out of the hospital every few weeks with some minor crisis. My mother and I visit her regularly, and although she never speaks more than a few words to us, is still deep in her dementia, she knows we are there and it means so much to her. 

Tuesday, March 9, 2010

What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.

Thursday, March 4, 2010

Groundhog Day

I have been gnawing at the big thoughts again, wondering how we decide what is of value.  I grew up in a family that emphatically valued experiences over things.  Money was tight.  We drove cars until they died, we re-covered an old sofa so many times I can date family photos by slipcover era: “oh, there’s the green and blue abstract amoebas, it must be 1968 to 72.”

But we went to the movies every week, museums constantly, theater and live music regularly, and took a modest vacation every year.  It is easy enough to say that was good.

Although the world we live in puts a premium on the material, no one would question that building memories is as important as building buildings.  Memories may be ephemeral but count as real, and potentially more lasting than things themselves.  The twin towers are gone, but who among us who have walked in their shadows cannot call them up at will?

But what happens when memory is gone? When the ability to lay down new memories erodes, and the mind sieves everything out every few hours so that all that remains is dust and ghosts, thin wisps of almost memory.  This is the state my mother finds herself in, and it is breaking my heart. 

Today, we were visiting with my friend Elizabeth in her lovely sun filled apartment.  My mother comes to her building weekly to see her therapist, who helps her hold the burden of her nearly unbearable sadness.  I shepherd my mother to all her appointments these days, she cannot negotiate the city on her own.  Too many moves in too few years with a memory deficient brain means she is constantly unmoored, needs steering. 

One time this summer, when Dad was still going out, their lovely and loving aide, Mina, had taken them both to his doctor’s appointment.  Mom didn’t want to go into the exam room with Dad that day, and chose to sit in the waiting room.  Bored and hungry there, she decided to go out to find a nearby blueberry muffin and cup of hot cocoa.  An hour later, Mina, canvassing every coffee shop, finally found her blocks away, wandering, wondering where it was she was getting back to.

Can't you just see it: the irritated calls from the doctor’s office about my increasingly agitated father left alone in the waiting room; Mina panicked, searching; me frantically hunting a sitter so I could come join the fracas, deciding if it was time to get the police involved yet. Oh that was a fun day, let me tell you.

But back to today: after my mother’s appointment, we have a tradition of having a light bite together.  Our regular haunt was the Hot & Crusty around the corner, common watering hole of old ladies and toddlers with nannies.   This suits my mother just fine, as she loves little kids and she is an old lady.  But lately we have been going to visit with my friend Elizabeth and take our tea in her apartment.

Elizabeth is fond of my parents and has known them the best of all my newer, Mommy friends.  Her own family is far, far away in Australia, and she is happy for grandmotherly company.  When I ring her to ask if we can come by this week, she says yes and adds with a laugh “And your mother can admire my apartment again and ask how many children I have and look at their pictures and tell me how lovely my family is again.”

I love Elizabeth because she takes lightly and in stride the fact that despite having met her dozens of times and spent hours in her company, my mother only vaguely remembers my friend, smiling politely at her on the street when they run into each other.

My mother’s ability to record new memories is now so deeply compromised.  Trying to give people a snapshot of what that’s like, I resort to movie metaphors: ”It’s ‘Groundhog Day’” I’ll say.  ”She lives a whole day and when she wakes up in the morning, it’s wiped clean, like it never happened.”   And no, not completely, not 100 percent, but close enough.

Two days home after my father’s disastrous hospitalization that nearly consumed him and us, after spending countless hours with him in the intense and unhappy cardiac ICU, I make a reference to it and she asks: “What operation?  Was Jim in the hospital?”

And I suppose, in some ways, that works for her.  She doesn’t have to remember our holding my father’s arms down as he screams “Stop them, they’re hurting me, make them stop!” to keep him from clawing at the doctors and nurses who are saving his life by applying hard pressure to the pumping, spurting blood vessels in his groin that he had ruptured by standing up and trying to walk away from his bed with a tube still inserted.  This is a precious memory I alone get to keep.

So my mother and I are at Elizabeth’s and although our visits usually coincide with nap-time, this time her two and a half year old daughter, Caroline, is awake.  My mother finds nothing more delightful in the world than an engaged and engaging toddler, and so she is in Grandma heaven.

Since all Caroline’s actual grandparents live many oceans away, she, too, is delighted to have the complete attention of someone who is happy to play peek-a-boo games with her for a length of time that would make most people droop.  My mother is completely in the moment, completely charmed by this adorable little girl, having the time of her life.  When she gets home she will even tell Mina about her how much fun she had today.

I feel very contented that I have provided Mom some most excellent distraction from the deep and abiding sadness that fills her life with my father now.  But I know that next week she will ask Elizabeth if she has any children again, and this takes bites out of my happiness.

This is yet my corollary to those old zen questions; besides that tree in the silent forest, and the one clapping hand: did it mean anything to give my mother this happy moment if it does not become a memory, if it dissipates into synaptic dust?

My father, now curled up inside his mind, will not know, will not remember what we have done, are doing for him.  But we will know.  Ethan, at 5, observing me getting ready to go out on another parent related mission commented: “And when you and Daddy get old I’ll take care of you like you take care of Grandma and Grandpa.”  Yup, kid, you get it.  And like the old saying goes, may we live long enough to become a burden to you.

My sister in law, Bern, went through all this a while ago, twice in rapid succession with both her parents.  She recently wrote me a lovely note and shared this:

“One day, during the time my mother was sick, I was helping her put on her shoes, kneeling at her feet. She looked down at me and said, ‘One day you'll be glad you were here to help me.’ I said, ‘I'm glad now to be able to help you!’ But I understand now what she meant. Because while you're going through it, you're feeling more pain than satisfaction. But one day, I did indeed come to feel how much that caring meant to my mother and thus to me.“

So I guess that has to be the answer for me, that even though my mother will not remember it, I will remember that I gave her this bright, happy moment.  And that will have to be enough.