The Story of Spaghetti

As a child in a very dysfunctional home with a very unstable mother I was blessed to have the wonderful responsibility of cooking dinner every Wednesday. I was only 11 so I had to make something easy and I chose spaghetti. We had an electric non-stick pan and I browned the beef and added the sauce while the noodles cooked. I loved it.

I married, at 20, a half Italian half Irish man whose Irish mother learned to cook meatballs from her mother-in-law. Likewise, my husband asked that I learn to make meatballs from his Irish, Italian-educated, mother. One of my proudest moments was my sister-in-law’s comment, “I love mom’s sauce,” when grabbing a taste passing through my mother-in-law’s kitchen, where my meatballs were simmering in the sauce I’d made on her stove.

I no longer have the husband, but his Italian grandmother’s meatballs and sauce live on. One of my very favorite meals. Like heaven. Here is my recipe for tender, irresistible meatballs and gravy. I learned from my mother-in-law about 40 years ago, so I may have adjusted what she showed me. But this is my tried and true approach and it never fails to win praise (and ágida from eating too much!).

Italian Spaghetti and Meatballs
with imported Italian pasta.
Pasta bowl by Norma Messing

RECIPE FOR ITALIAN MEATBALLS AND GRAVY

Serves 4

Prep time: 20 minutes. Cooking time: a little over 2 hours

Ingredients

·      1 jar of your favorite pasta sauce (I use Classico brand Tomato Basil – Grandma’s favorite)

·      1 large can of plain tomato sauce or chopped tomatoes (I use Tuttorosso brand)

·      1lb ground beef (or combo of beef/turkey or beef/pork) 

·      2 Tb olive oil

·      ½ onion chopped fine

·      1 clove garlic (1 large or two small) finely minced

·      1 cup fresh bread crumbs (instructions below)

·      1 large egg

·      Grated Parmesan cheese (in a jar – the powdery kind)

·      Salt & pepper

·      One package of high-quality Italian spaghetti noodles

Instructions

Add olive oil to the bottom of a large, heavy pot. Add ½ of the chopped onions and garlic (it’s not much, I know) and stir for a couple of minutes over medium heat.

Add both the jar and the can of tomato sauce to the pot. Add a few Tablespoons of parmesan cheese. Stir well, turn up the heat until it begins to bubble, then reduce to Low and cover with a spatter screen and put the lid on only halfway, so there’s plenty of room for steam to escape. The spatter screen will balance the lid. If you don’t have a spatter screen, just leave uncovered.

Take a big mixing bowl and make your cup of bread crumbs in it, thusly:

·      Hold tightly several ends or ends and slices of bread (I prefer whole grain) and grate on a cheese grater. Continue grating until you have a cup of fresh crumbs in the big bowl.

Add to the breadcrumbs: 

The egg, the remaining small amount of minced garlic and onion, some salt and pepper.

Mix well.

Add a large spoonful or two of the sauce on the stove to this mixture. You want the bread and egg mixture to be wet and to stick together – think of it as the same consistency as raw ground meat. Add more sauce until you get this consistency. Your bread mixture should be only slightly less than the volume of your meat.

Add ground meat and mix with your hands thoroughly, squeezing the mixture through your fingers until it’s thoroughly combined. You can add more salt & pepper if you didn’t add much before. (I use a “peppercorn medley” grinder that has just a little allspice in it.)

If it seems dry, add a little more sauce. You want this mixture to be soft and easy to work with.

Form 1.5” meatballs and line them up on cutting board so you can see that they’re all consistent. Adjust sizes if necessary. You should get about a dozen meatballs from a pound of meat, that’s three each for four people.

Stir the sauce on the stove and drop the raw meatballs in all around the outside. You should see the tops of the meatballs, so you know where they are and make sure they’re not on top of each other. Next fill in the middle of the pot with the remaining meatballs. Now you can see all of your meatballs are spaced nicely. Very gently push them down under the surface of the liquid with a spoon, being careful not to move them or alter their shape.

Simmer them (uncovered, or with the lid halfway on the spatter screen) for about 15 minutes.

Now your meatballs are cooked enough to withstand some stirring and you can gently stir your sauce around your meatballs, pulling it up from the bottom.

Simmer on low just like this with gentle, occasional bubbling – only half covered – for about two hours, stirring every fifteen minutes or so, to keep the gravy on the bottom from burning. You’ll see grease start to form on the surface if you have fatty meat. That’s ok, but feel free to skim a LITTLE off. The grease adds substantially to the flavor, so you don’t want to remove all of it (I didn’t remove any when I used my lean, grass-fed beef yesterday).

Pasta:

You really want good pasta with this meal, so splurge on imported Italian medium spaghetti and cool according to the instructions when your meatballs and gravy are ready. I find the most success with adding a little olive oil to the drained pasta, and putting it into the dish plain with meatballs and gravy added on top. Don’t mix gravy into the noodles before you serve. It soaks the liquid from the gravy and changes the texture.

Serve with a buttered roll or bread, for that last drop of gravy in the bottom of your dish.

NOTES:

·      All measurements are estimates. My mother-in-law didn’t have a recipe and didn’t write anything down. She just showed me. Eying everything has worked out well for me over the years, so I try to describe what it should look and feel like to help you do the same.

·      If you’re only serving two, and eating half of the meatballs, then only cook half of the pasta. Make fresh pasta for the leftovers – which will taste even better, even microwaved, in the next day or two.

·      If you’re doubling the meat, double the meatball ingredients - breadcrumbs, etc. - and add one more big can of Tuttorosso tomatoes to your gravy.

Drawing Houses. Writing the Book.

I'm in Nutley, New Jersey, staying at my daughter Marisa's sweet little house. Her husband, Rob, is the contractor who restored and remodeled my home in Rockaway so I could sell it for a generous price. While visiting I'm working on the memoir I started about five years ago. It has evolved into a full-blown possibility and I'm more than a little overjoyed at the prospect of creating something I can be proud of for myself, rather than for a boss.

Writing happens in the early morning, before the dog walk and the coffee. Before the Facebook catch up and the Likes and Follows check-in on Instagram. It's the first foray of my brain into consciousness after a much-needed rest in the passive realm where dreams and problem solving evolve unhindered by the too-well-informed editor of intentional thought.

I'm there now. It's morning. I took a break to make coffee because it's Saturday. Saturday means more time writing. The luxury of a coffee break and more writing. I'm at the part where I'm drawing houses for money 28 years ago and I thought I'd pause and post here, on my trusty old blog. The thoughts swarming around this history are too vivid and tenacious to ignore as I am present today in that place: the Montclair suburban sprawl, where it all happened.

Today I am writing about the houses. The ones I drew, purchased by the privileged few, but my perspective has shifted with nearly thirty years of experience. My daughter Joy and fiancé Colin have just purchased such a home. A would-be mansion, for a cheap price in dilapidated condition, and they are in the throws of restoring, renovating and remodeling it. It will be amazing. But they are not stock brokers or lawyers. They have bought into the long game, embracing debt for the future, so their children's children can struggle less, thanks to their hard work. Colin is a master craftsman and will create most of the interior details by hand. In my imagination of homeowners thirty years ago, as we were losing our home, there was no such self-dedication and commitment. Every buyer was privileged. Every homeowner was at ease. How wrong I was.

When you write your story, however, you write it true for that moment, and in that moment my lens was set, though partially in error, on the striking contrast of ease to struggle, privilege to poverty.

From memory I sketched, on a flight the other day, the architectural detail you see here. I will always remember it: an Arabic-style leaded glass window on a Tudor revival house, hidden by a huge spruce tree, or maybe it was a cedar. I could see it from my point of view in the car with my three smallest children, as I sketched the house. I loved it, so I moved the tree in my drawing. Perhaps I loved that window more because it was hidden, like an afterthought. I fought for it. I fought for the architect, for the craftsmen shaping the wood and the hours of leaded glass work, insisting that it be shown, though only an inch or so in my drawing. My customer loved the license I took, and loved the drawing.

I was drawing those architectural masterpieces in Montclair, New Jersey as we were being evicted from our tiny home in Bloomfield. Now I am here again, and I look back with tender gratitude.

This morning I'm working on my book, a book I plan for thousands to read to see how anything is possible. This morning I am in a house owned by my youngest daughter and her husband. I am looking at an email with the architectural plans for the renovation of a home owned by my second youngest daughter and her husband. And this morning I own two homes myself in South Carolina. The one I live in, and the one my stepmother, Tani, lives in.

I am writing the story of my impossible journey while envisioning that journey's future state as a promise to struggling young people that the reality you're in is worth living through. I was baffled by the existence of these architectural gems in a world where I could not feed my family. I drew houses as we were losing ours and I drew them with joy and with love, being present, appreciating everything. By a lucky genetic neurological defect, or crazy childhood conditioning, my natural state seems to somehow always be one of joy and gratitude. I hope, with all of my being, that whatever that is, it's contagious.

Ode to Suffering

This past year I have navigated a completely foreign land—caring for my dying father in his home, then for his widow with dementia. It has been a year of sacrifice without a thought, or emotional bandwidth to consider a thought, of what I wanted or needed. But that was fine. I knew I had a rare opportunity to usher a dear woman down a difficult path to her final days, and she was all that mattered. I'll write about Jamie's last two months soon, but I'm not quite ready. Instead, I write this ode to sacrifice, to suffering, because I've learned to appreciate it profoundly.

Suffering is a perfect foundation for happiness. That doesn’t matter in the throes of it, but in retrospect I believe that the pure joy I feel just looking up at the sky might have something to do with the deprivation of simple pleasures which lasted most of my life.

My longsuffering childhood included sexual abuse at the age of five and desperately trying to thrive under the care of a neurotic mother who preferred communing with the voices in her head over interacting with her children.

I turned to art and poetry at a very young age to fulfill myself where positive reinforcement was lacking. It ended up being quite the fix – and I’ve enjoyed the catharsis and healing power of art and writing throughout my long-suffering life. Many have said, and I agree, that I ought to share all of those adventures in hardship in a memoir. Soon I hope.

A teacher told me all good poetry is born of loss or longing, I have a collection of more than a hundred poems on the theme of romantic love – wanting it, celebrating it, losing it – and I think it’s all quite good so I agree with her. I can categorize poems about motherhood the same way – longing for an unborn child to leap into my life, longing for the toddler to grow up and share adventures with me, a sick child, a house in chaos – could be poems of loss in a sense. Anything you feel strongly can generate a good poem, she once said. What a life of strong experiences and strong feelings I’ve had – and what poems I’ve written!

Now in my fifties I am, at this moment, not really suffering. I certainly don’t count routine aches and pains. The novelties of making myself a delicious cup of coffee, walking my dog under a big bright sky, and spontaneously creating some art on a day other than Mother’s Day or a vacation day… these bring rapture against a backdrop of years during which getting through any day took monumental effort.

I imagine that millions of people live similarly – intensely straining to feed their family while fighting to remain positive; lying in a post-surgery, pain-addled bed without the mental bandwidth to conceive of the future; holding another human together—husband, child, boyfriend—as if their every breath was your responsibility. And time. Who doesn’t suffer at the hands of the clock? When work and kids and housework and tending to appliances, cars, buttons or toys in disrepair seem altogether like a magic trick that can’t be teased out by you, while friends and neighbors seem effortless at it.

Sensing that all of this suffering is ubiquitous, if not universal, I can celebrate it with you to the extent that some aspect of it must resonate. So I’m not at all trying to sound like the queen of it or a rarity, but a poet who’s got hold of a theme, enjoying the revelation that in this season without suffering I can look back and eulogize it, inspect it, write an ode to it, and possibly give someone an empathetic response to theirs.

In my 40s, after all the sex for having kids was over, I finally found the joy of sex. And in my 50s, after all the sweat of building a career from scratch had been wrung out, and kids face their own struggles to support themselves, I finally don’t have to fear the grocery store, and I finally have time to write a word or two instead of freelancing evenings and weekends.

But before I write fictional adventures about a Westie or finish my sci-fi trilogy, I want to write an ode to suffering, the foundation of solid rock that I build every day on. Not because I suffered, but because I embraced it and rode it like a wave – a force of nature that could not be tamed but could be harnessed and ridden, rough as you like, the way millions of my fellow humans do every day.

Now I’m going to walk down the hall and make a cup of coffee and really, really enjoy it. I’m going to walk my dog under the highest sky and breathe free air with pure delight, and I’m going to relish working my ass off for a boss I love doing work I enjoy. All of this is bliss because of years and years of every manner of suffering, sacrifice, pain, struggle and hardship. How grateful I am for every day of it.

Time is Melting

It’s exactly 10 am on Sunday, November 20^th, 2016. I write to you from the frontlines of the battle against Time. I hold in my hand a snowflake, just caught moments ago, and watch with grief and pity as it rapidly melts before my eyes. I try with all my might to slow Time down, to make it obey my broken heart, pleading for mercy and opportunities now lost… and again… and now again.

When you raise a child you anticipate the firsts with a certain anxiety. Why? Your child will inevitably crawl, stand, walk, say “mama.” But if not, something is terribly wrong. Is it confirmation of health, of progress? I remember well the years of diapers and baby food, firsts upon firsts at every age of my six sprouts, as they sprouted bigger and more accomplished with each passing month. Time was a frenemy then. Stop! Freeze this moment! I want to remember forever that first laugh, that first grasp of the spoon and successful entry into the mouth with sloppy, sumptuous apple sauce. No, hurry up! Move faster! When will they finally talk, tell me something worth waking up at 5 am for. When will they walk? They get heavier every moment. Hurry up and get us past these terrible threes – I have yet a few things in the house unbroken!

Now, as Alzheimer’s, that thief of self, robs Jamie of her joy, her creativity, her words, her peace… I chase Time like a phantom that disappears at every grasp I attempt. I’m left holding tight to empty air as Time races away. Behind the door, around the corner, let me catch you! Let me hold you down for just... one... day. Time has become as elusive as the man in the house that, on a bad day, Jamie fears and we keep banishing with confident bravado.

I promised I would write about an average day. My blog posts seem to flow as catharsis after a day—or a moment—of anxious negotiations and fumbling for balance and peace. Heroic battles against phantom threats and broken memories warrant an entry in the journal of the quest I’m on. Every celebration, or test of wills and patience, is worth recording, and, in time, reflecting on when specific memories are lost in the sea of life’s details. I need to share these days with you. I have not had a guide like this, an actual detailing of events, words spoken and actions taken, only vague descriptions of symptoms and suggested strategies. Helpful, but lacking in humanity. Humanity is what I need right now. Every day. Every tweak of words and touch that might bring an embrace or a shove. In the end, those are the moments that count and that is why I record them.

But these moments are piling up now. The need to record them grows in urgency as Alzheimer's has, tragically, sped the pace of Time for her. What is this magic trick, with which months have become weeks and weeks days and days hours? This is nothing like childhood. These firsts are tragic. And, one by one, they will become heartbreaking finalities. With a little reprieve, on a good day, she might say a couple of words strung together. On a good day, she might giggle at the antics of the puppy, or grin when we tell her how gorgeous she is.

But I know we’ve had our last social event at a friend's house. Our last dinner at a restaurant. Those last events were easy to identify. She was miserable. I remember those moments effortlessly.  I can’t forget the twisted expressions, the embarrassment as food fell in her lap or tears burst suddenly, unwanted—that predator, fear, pouncing without warning. We’ve had too many “lasts” now, but every failure is not a finality. Not yet. There are still good moments, a good moment making it a good day, in spite of the rest of the day. You never know when a good moment may come, so you set them up again and again, set up the possibility with love and compliments, a little humor, a picture book, a giggle, that you hope will be contagious, at the cat’s taunting of the dog.

Today is a typical day so far. Typical for where we are in this other dimension where Alzheimer's is a stricter boss, puffing out his chest, demanding Time obey an accelerated schedule, robbing us a little more each day than expected. Today there has been no drama. No charging at windmills. Today I sit at the dining table trying not to weep as Jamie rests in bed.

This morning she woke and let me help her in the bathroom and put on her robe, but wouldn’t come out, insisting that she stay perched on the side of her bed. I left her there and made her a yogurt smoothy. After a few visits to check on her, she let me walk her to the dining table, where she insisted on sitting sideways in her chair. Most likely for a quick escape if she needed to flee to safety from me or some other phantom she can’t articulate. I put the smoothy on the table, but she didn’t want to drink it out of spite or the assertion that she can do whatever she wants, including not drink a delicious smoothy. But I know she loves them.

I approached her once or twice as I cooked her breakfast, “I know you’ll love it! You’re gonna love that smoothy!”

Finally, I put it in her hand which, shaking as she worked to close her fingers around it, found her lips with the cup and she drank it all down, capturing the yummy treat in one long series of rhythmic swallows. Perhaps she knew that if she paused, her hand may have ceased to cooperate. I’ve learned that starting out with putting something in her hand just irritates her. She wants to believe she can still do all these things. Let her sit and think about it. Let her try to make her hand obey her appetite; her dignity deserves this.

Last night was the first time I fed her an entire meal. This is not a “last.” She will have better days still, when the spoon cooperates and a little pile of deliciously prepared food holds into it and finds entry between her grasping lips. 

But last night every spoonful tipped its contents out—forks long dismissed as useless hardware stabbing at nothing. Scooping is the way to go. But scooping at a bean or a bite of fish is tedious work, even when the bowl is full of them. Is the spoon full enough yet? Is something in it, or is it empty? If I tip it to snag that other bean, will the marinated salmon jump out in protest? These are the challenges we battled last night until, finally, with a broken heart, I stood at her side, gently offering a spoonful of rice, beans and salmon. With awe I saw her lips part and her head tip ever so slightly forward in the universal gesture that says, “Yes. You may feed me.” A moment I knew would come, but I planned for a year from now. Not last night. Not yet. She hates it when I try to feed her. She’s let me pick the food up with the spoon and hand it to her, but not put it to her lips. It’s too soon for that. She’s supposed to close them tight in stalwart defiance of dependence… it’s too soon. 

After last night’s dinner I resigned myself to finger food. Nice solid bites in pieces she can manage. Not rice. Not pasta. Not so many things. I know she finds being fed, still, a humility and I have to find a way to spare her that until she’s ready to resign to it fully. The occasional last bite. The tempting first bite to entice the appetite, yes.  But is it time for full meals to be fed to her? I have to fight it.

This morning, after she handed me her empty smoothy cup, I gave her homemade hash browns in formed pieces, bacon, a cheese omelet I cut into finger-worthy bites and raisin toast. No spoon or fork in sight to challenge her. She ate it all but a few bites. I was happy. She was fed.

There are only a few words left now. Two of them are No and Yeah or Yes. She didn’t want her morning pill. I didn’t hesitate to put the water in her hand and pop the pill in her mouth. She didn’t bite me. She obediently drank and swallowed it. I reassured her, “I will only insist on something if it has to do with your health or your safety. I respect you. I love you. You can do whatever you want today, but you have to take your pill.

She refused a shower. I handed her a moist wipe and told her she had to clean herself really well if she wasn’t going to take a shower. But that’s not really an answer. I have to bathe her. I showed her the wipe was slightly yellow. “See? You’re a little dirty. A shower will feel really great.” “No.” She said it clear as a bell.

All she wanted to do was get back in bed. So here I sit, writing, grieving, heartbroken, knowing that, in time, lying in bed will be all that she can do.  At 11 a.m. she was still in the bed, eyes open, staring at nothing. I checked on her, talked about her cat on the bed, just a few feet away, trying to get her to see him. I’ll love her up the best I can without seeming to patronize her or challenge her will. I make sure she’s safe and healthy and, just as importantly, the master of her day.

While writing, I’ve paused to throw the ball for the dog. I’ve taken him out into the yard, I’ve melted chocolate on the stove, dipped pretzels and coated them with toasted nuts and chopped cranberries. I hope she likes them. Things she can eat with her hands. A treat she might recognize as a gesture of love. Maybe.

Then at noon, as if it was the most natural thing, she came strolling out of her room, the dog’s leash in hand and a smile on her face. The dog must have jumped on her bed and started licking her. That can get her out of a funk. It’s a beautiful thing. She had a little bit of an odor, so I walked her to the bathroom and cleaned her up, again encouraging her to go for a shower – promising the heater and that she would not be cold... how good it would feel. A real sales pitch. She relented.

The shower was difficult. Her walking is unsteady now. Stepping over the 3 or 4” threshold took a couple of tries. I knew I would have to do most of the cleaning, but I handed her a soapy washcloth and let her work. She used to go to town on her knees for some reason. I’d joke that she was going to rub the skin off. Today she just patted them a little and motioned that she was done. When she was all clean and her hair washed, the struggle to get her out of the shower was intense. She was shaky on her feet, and I’m not strong enough to lift her. I had dried the front of her while sitting on the shower bench, and she was clutching the towel for modesty. This was hindering her exit. I reassured her she could have it right back and took it away so she could concentrate on standing up. With a little support and a lot of self-doubt I got her out of the shower and onto the toilet seat, covered with a dry towel. The bathroom was warmed by a heater and the rest of our bathing adventure went off without a hitch or a struggle.

Now, as I finish this record of a typical day, it’s 1:30 pm. She’s resting on the couch, insisting with her simple, "No," that she doesn't want any lunch yet. But she's fresh and clean, with a loving dog for comfort, listening to soothing music without lyrics. Lost, too soon, to a realm of thought that none of us will ever be able to describe, if we ever journey there.

Do You Want to Go Home?

Jamie enjoying a smoothie for
breakfast in our new home, 10/12/16

Every day I put off writing these things because by evening I’m spent without one cent of effort to spare.  It’s 9:30. I’m in bed, having taken my last 300 mg gabapentin for myalgia, two ibuprophens for a toothache and a probiotic with the last dose of antibiotics. My head throbs achingly around the back of my neck, my ears are ringing louder than my fingers on these keys and all my neurons spark the same advice: Let go and watch something you can drift to sleep to. Think of your health. But my heart tells me, as it has always believed, that I have to let go of the comfort of my little dog and soft bed, and the expertly composed Siren song of entertainment… and write a few things down. 

Jamie is 63, tall, slender, graceful and soft spoken. I want you to know her as well as I do, so I write about her. But I don’t know her very well. I can’t learn anything much from her. She’s losing words at a rapid pace. Language is slipping away from her: expression and perception. They call it Progressive Primary Aphasia. I arrived at that diagnosis myself when I read an article a few months ago. Her caregiver Mary showed me the same article in a different magazine at the neurologist’s earlier this week when we took Jamie for an EEG. Not all those with PPA have Alzheimer’s, but Jamie has advanced Alzheimer’s with pretty bad dementia.

Seven months ago I came to live with her, because my Dad asked me to take care of her when he died, and he did. I’ve known her casually for about three years. In 2014 I took a trip to Nicaragua with her, my Dad and my cousin Jane from London. In Nicaragua Jamie had some difficulty navigating uneven terrain, and she couldn’t read at all, but she could find the restroom in a restaurant by herself if you pointed her in the right direction. She could laugh at jokes and tell you whether she liked the fish, choose something when browsing souvenirs, stroll for an hour in the evening air down the main street in San Juan del Sur. Pick a fight with my dad.

Just two years after Nicaragua, Jamie can barely speak. Barely understand. When she sits in front of the TV, even her favorite shows, she just stares at the floor in front of her. If you give her any kind of direction, like “Please sit here,” she doesn’t do it. She’ll just start to slowly walk away to who knows where. You have to walk her to the chair. If you say “Look at me,” or “Look at this,” while pointing at something right in front of her, she doesn’t look at it. She’ll turn her head in another direction instead, as if doing what you’ve asked, but it’s never what you’ve asked. She can barely use a fork. She usually eats with a spoon, or with her hands. She can’t move apples from a bag into a bowl, or take a dirty fork and place it into the dishwasher basket. Just six weeks ago she could do both of those things with a little help and practice. Not any more.

Jamie had a particularly lucid day today. Self-aware, she had commented at dinner, “I can’t walk.” I asked her “Can’t walk or can’t talk?” “Talk,” she corrected herself. She was more present and aware today than she has been in a while. We just started a new drug – and maybe it was doing something. I empathized with her lack of words and promised I’d speak slowly, and use fewer words. She liked that idea. I gave her the advice to try not to stress about friends coming over and talking too fast, but to work on sensing what the person is trying to do by talking, ignoring the complicated words they’re saying. Maybe they’re just being friendly. Maybe they’re simply saying “I love you,” by telling you about their day. When seeing the intention, the words matter much less. 

She appreciated my advice, nodding a little condescendingly – like, “I could have thought of that myself.” When she’s self-aware she’s the teacher, the authority. She was an economics professor for many years, and still naturally migrates to thinking she should be in control. That look should have clued me in that trouble was brewing.

She usually lets me put Andy Griffith on. and stays put while I take out the dog. She didn’t want me to leave her for 10 minutes tonight, however, so, surprisingly, she agreed to join me for a short stroll down the street.

I asked if she wanted to wear her slippers outside. “No.” I offered her clogs, she took them, walked into her bedroom and put them by her bed, then turned toward the door. I didn’t correct her.  She agreed with the light jacket I put on her, nodding so it was her choice. We slowly navigated the porch stairs together, eager pup leading the way.

After one pleasant block she became a little unsteady so I asked, "Do you want to go home?" She replied, “Yes. Better.” So we headed back to the house with Jasper, my Westie. I noticed that I had to sort of pull her as we got to the house. She reluctantly got to the top of the stairs and muttered something that I interpreted as, “Do you know these people?” I laughed it off, “This is our house.” She absolutely did not believe me and by the time we were inside she was having a full-blown melt down, which she hasn’t had in a long time. Maybe self-aware was not a good thing.

Now she’s the boss and she’s scolding me – eyes wide – demanding I take her home. She stammers, “You’re crazy!” Infers that I’ve kidnapped her, “You took me!” and asks about the other people in the house.  “Who’s here?!” For someone with very few words, she really can communicate pretty well when she has to. With broken sentences, gestures and expressions she lets me know that she is not going to stand for this.

I suggested getting in her nightgown, hoping she’ll agree that maybe she’s just tired. I let her do as much as she could herself because she was in a very independent mood. She struggled but managed to undress. I show the utmost patience helping her with her nightgown because I don’t want frustration to devolve the situation even further. I normally hold the nightgown so that the two holes for her hands are easily accessible and I guide each hole over its hand so that she barely notices I’m helping, then she raises her hands and slips it over her head. It’s a joint effort, as most things are, to keep her feeling good about herself. Tonight she fought my help, insisting her second hand belonged in the neck hole. I gently pull the neck off her arm and slide the other sleeve hole over it.

She was dressed for bed, but then, without a word, she proceeded to remove her Depends. This was her final gesture of defiance. She still meant all those things she had said – that I was the enemy in this shocking story of kidnapping and deceit. She hates those Depends (until they’re her best friend. It’s a hate/ humbly accept relationship). Tonight she didn’t complain, cry or argue – she simply took them off and left them on the floor.

I’ve raised six kids, so I know a tantrum when I see one, even without the yelling or stomping. So I gracefully slipped out of the bedroom and left her there, panty-less, her toothbrush by the sink loaded with toothpaste, waiting. I had moved on to the parenting phase, “So you want to play it like this? Let’s see how long you last without me,” and without a word, or any malice, I simply went to the kitchen to do the dishes. I paused every few minutes to listen for her. Finally the call came. “Come here.”

“What?” I called out, walking only a few steps toward her room.

“Come!” she said, a plea in her voice that I was happy to give in to.

Very quietly she said, “You’re right,” motioning me to come sit next to her on her bed. She put her arm around me and hugged me. “You’re right,” she said a few more times. What a relief!

“Did you brush your teeth?” She was proud that she had done it alone. She let me walk her to the toilet. She even dropped the toilet tissue in the toilet rather than on the floor. She let me put fresh Depends on her without a complaint, or even a sigh, one obedient foot at a time—toes pointing contritely as they slipped into their proper hole. She was trying to be good for me, and when I tucked her in bed she quietly told me she loved me.

Now normally there’s a big chorus of “I love you!” that goes on and on for about 10 minutes, both of us silly with how much we love each other. Tonight it was a humble gesture of gratitude that acknowledged a hurtful round of accusations. “You took me!” she had said – kidnapping was the only logical explanation for how she got here. Now, as I turned up the ocean waves to lull her to sleep, and I kissed her one final time, that single confession of love was the lifeboat I needed to continue believing we can keep doing things this way… a little while longer. 

October 24, 2016

Jamie is Self-Aware

One of the most compelling reasons for living with Jamie rather than putting her in a nursing home is

Jamie on Memorial Day, 

wearing a necklace we'd 

just made.

that when she has a good, lucid moment, her self awareness surpasses that of many completely healthy adults. I’ll give you two examples from this weekend.

First example:

Jamie suffered a traumatic experience as a young child. She was born in Puerto Rico but her father moved the family to Cuba shortly after she was born. Jamie was in Cuba during the revolution and remembers bombs and gunfire and other children being scared and suffering. In one particular incident she became briefly separated from her family during an attack. No one knows exactly what happened or how long she was lost, but when that memory comes back she is panicked, fearful and even angry if we don’t listen to the story again, empathize and validate her experience. Dismissing the incident as something she's already told us, something in the past, or nothing to worry about now, is not the answer. We must acknowledge her fear, reassure her that it was a horrible experience and she should not have had to suffer it. It was horrible. No child should have to go through that, and so forth. She then begins to calm down.

Well, this weekend, after a wonderful (but perhaps too-busy?) morning, as I was making her lunch she grabbed my attention, and with very expressive facial expressions and hand gestures, told me she was about to go into that black hole of memory. The Cuban rebellion was about to come alive again. She was panicking BEFORE it hit, warning me that it was coming.

I didn’t know at the moment what she was trying to say. She said, “Nasty.  I’m nasty. I’m going to be nasty!” and screwed up her face like she was mean, angry, even vicious while making a clawing gesture with her hands. It was what parents do to mimic a tiger while telling a story to their children. But this was serious, like she was warning me that she was going to be mean to me. In hind sight I believe she was sensing the coming emotional tornado of her flashback. I grabbed her and hugged her and told her it was ok. “I don’t care if you’re nasty or say mean things. I love you no matter what. I know you love me no matter what. Don’t be scared!”

A moment later she was there in Cuba, a little girl about eight years old, terrified and alone as bombs burst around her. A caretaker came to our condo just as this was erupting and Jamie began to be comforted by the two of us assuring her that we’re here for her and we love her. But she didn’t want to be calmed down. This went on for about ten minutes with Jamie insisting that she was right about how terrible and terrifying this is. “NO!” she finally shouted when one of us told her it was “OK,” and slammed her hand down on the kitchen counter. When that happened I went and got half a Klonopin, which I have never given her before to calm her down, and she took it without question. I wasn’t willing to risk violence escalating and she had gotten plenty of it out of her system already. I was hoping the pill would do something for her, but, like a placebo, it almost instantly helped – sooner than the pill could have had a medicinal effect.

The episode ended with her panic subsiding and our comfort received. She had a wonderful afternoon. Much later I remembered what she had told me only seconds before the flash back hit her. “I’m going to be nasty!” Whatever that meant to her, she spoke it moments before she became extremely emotional, immersed in her childhood trauma. She's never warned me like that before, so I can only imagine now that she sensed the episode coming on.

This is what most intrigues me. Moments like this tell me that although this woman is a victim of severe brain damage, although she can’t recognize the glass of water I put in front of her but reaches for mine across the table, yet she explains to me on a regular basis exactly what having dementia is like. And it breaks my heart. And I fall more and more in love with her. I’ve never used the word pity much in my life. Not sure why. But for some reason it’s the word that constantly jumps to mind when I go through these episodes with Jamie. I pity her beyond words.

Second instance of self-awareness:

Monday night, we went to a sweet Memorial Day bar-b-que on the dock with about 20 neighbors. I know that she listens and understands a lot. But I believe the moment that stood out to Jamie was when a friend of ours, a woman, jokingly shouted, "That's MY man! Don't touch him!" after her husband received a lot of praise for opening up the evening with a very moving Memorial Day prayer. Throughout the evening there was much socializing and feasting and Jamie had enjoyed the attention of friends stopping by to say hi to her and talk to us. We were joined at our table by about six or seven women and, although Jamie didn't usually participate much in the conversation, I think, in hind sight again, that Jamie was really thinking hard and had another self-aware moment. 

She emerged from the bathroom, as I was putting her to bed, with her two wedding rings in her hand. Since my father passed away she had seen her former husband Eric’s wedding ring, and been wearing the two of them. She was trying to hand me the two rings but I asked her why she took them off. With the hand that held the rings, she gestured toward the kitchen, which always means she wants to throw something out. She throws out everything. Luckily, the kitchen garbage is the only place she does it, so we know where to look if we see she’s been “cleaning” when we turned our head for a moment. Earlier that day she had tried to put a decorative cushion she doesn’t like into the kitchen garbage and I rescued it for donation. “Someone might have a fire and need any ugly pillow for their couch.” Luckily she agreed.

Of course I wasn’t going to throw her wedding rings out, so I took them and told her we’d save them in the jewelry box in case she wanted them later. They’re very pretty. Finally, after I had shown her where I was putting them and shut the lid, she got out her message, “I want to me ME!” she shouted!

“Oh, OK! That’s great! You’re an independent woman. You don’t need a man.” She grinned, I got it right. Now if that isn’t a self-aware gesture I don’t know what is. She’s done mourning. She’s ready to move on. She’s been mourning both of her husbands since my father passed three months ago. At times she’d grieve Eric, at other times Richard. But she always mourned the loss of someone who adored her, who pampered her and spoiled her, which both of them did. It’s very easy to do with Jamie, as sweet as she is. I can only imagine that our friend's declaration, "That's MY man!" had struck a chord. She doesn't have a man. Well, maybe she doesn't need one.

We walked to her bed and she crawled in, a grin on her face. “Just us!” she declared as she lay down her head. “Yes, “ I assured her, “Just us.”

Jamie's Beautiful Brain

It’s 5 am and Jamie is sound asleep in her room. I’m stealing some time to write about her beautiful brain. I’ve had a front row seat to Jamie’s struggle with brain function for nearly four months now, and, rather than thinking of her brain as a problem, her brain is precious to me: wounded and vulnerable, every little function valuable and dear. You might be interested to know how dementia, or Alzheimer's, can be observed in everyday behavior. It's as fascinating as it is tragic. 

With a great deal of love, the gift of patience from raising six kids, and the experience gained from my daughter Heather’s traumatic brain injury, Jamie has improved wonderfully regarding her attitude and emotions. She greeted a new caregiver, a stranger, at the door yesterday with a hug. She wept for joy when a caregiver used a playing card to help her recognize the number 2. When asked how she is, her usual response is one word, “Happy.” She smiles all the time. She quickly reflects whatever emotion or attitude you present to her. Smile at her, she grins, laugh out loud, she joins you. Why would you ever be cross or impatient when faced with that miracle?

Jamie is o.k. with sitting still and thinking. She does it a lot. We don’t know what she is thinking, but when she tries to speak there’s something important there, hoping to emerge for us.

She begins with words familiar to us, like “I was just thinking,” and when she just can’t say what she wants to say, “godammit.” Normal phrases like, “I’m trying to tell you…” precede her attempt to communicate an idea. This tricks you into expecting the next phrase to be just as clear. But what follows is a hesitating stumble over words grasped from the air like random apples hanging from a tree. If all of the apples were picked in the right order, you’d have a beautifully expressed thought. But you can see her looking at all those apples, knowing they have something to do with what she means to say, but she just has no idea how to choose them in the order they belong, or even how to pick them and say them at all. As soon as she moves out of rote behavior – something she’s done or said a million times – she’s lost.

But there are positives. It’s a joy to spend wordless, carefree time with her, to share the space of a mind without filters or agendas. Someone who appreciates with absolute sincerity. This experience has given me more sunsets than I’ve witnessed in the last ten years. I’ll put a movie in after dinner and we’ll get comfortable on the couch and she’ll turn to me and look me in the eye and smile thoughtfully, expressing something with simple words, in her way, that I can understand. Something about art or our relationship, or simply, “I like it here.” The movie is no distraction for her. She’s in her own mind at all times. But I always wish I knew what she was thinking.

I’m telling you all of this as context because yesterday she experienced a decline. After a series of frustrating attempts to do familiar things, she used her hand to mimic walking down stairs and said, “I’m going down.” She wept woefully and I took her in my arms. “Maybe this is just a bad day. You’ll do better tomorrow.” “No.” she said with a finality that broke my heart. Who knows about tomorrow? But she knows her journey is one of continuous decline and she feels the ground slipping beneath her.

It started after everyone left for the evening and I was cooking dinner. She was on the toilet and I heard her faint call. I’ve learned to remove the pan from burner when she calls me. I quickly arrived to see the toilet paper unrolled onto the floor and to smell that she had a bowel movement.  She looked at me with utter desperation and shook her head. She didn’t know what she was supposed to do. I handed her a nicely wrapped little bundle of toilet paper and told her, “Use this to clean your butt, just like you’ve always done since you were little.”

She nodded obediently but her hand did not obey. She rubbed her knee with her other hand and stood up, walking toward the trash can with the tissue, which is what you do with trash, like tissues.

I walked her back to the toilet and asked her to sit down. She looked at me like she didn’t understand. I said, “You have to clean your butt. Sit down so you can do it. After a few seconds I gently pushed her thighs so that she got the idea and sat down again. She cleaned herself a little and showed me the dirty tissue.

“That goes in the toilet,” I said, taking her arm and aiming it around back. She hesitated. “It does?” and she looked very confused.

“Yes, just let go of it. Drop it.” And she did. I told her she wasn’t done and handed her another one. It took a lot of patience because that “aha” moment never came. I walked her through each step, each time. After the fourth one she showed me was clean, I breathed a sigh of relief.

Unlike cutting her food, which I don’t mind doing, and putting her clothes on, which is no problem at all, and which she can on occasion still do some parts of, cleaning her butt is something I really want her to do herself for as long as possible. Hence, my extreme patience with guiding her through the process. I’m hoping tomorrow it comes back to her.

Many functions like using the toilet are rote: brushing your teeth, rinsing your mouth, taking pills, buttoning a sweater, even tying the belt on a robe… these functions just happen. You don’t realize it because you’ve been doing it for so long, but you actually use a different part of your brain to do something out of habit. I guess that’s why forming good habits is one of the keys to success: it reserves your higher brain function for more important things like forming thoughts and communicating them. When she doesn’t have to think about it, she can often just do it. It’s like a miracle, after you’ve observed her struggle with any of these, which can happen at any time when something in the routine gets thrown off.

One of the most important tasks she must do for herself is swallow her pills twice a day. Three after breakfast and about eight after dinner (most of them are supplements). Taking her pills can be a smooth ride.

After dinner I tell her not to get up, or to sit back down, and put a white dish of pills right in front of her and hand her a glass of water, or, if she motions me to back off, I put the water down on her right side. She has let me know that hovering does not help, so I set her up and then sit across the table and observe, in case she needs help.

She looks over the scene – a plain placemat with two objects on it, a dish of pills and a glass of water. She slowly looks from one to the other. Then, taking a deep breath of bravery, she lifts her hands to perform the ballet of taking pills. The hands each have their role. The left hand will pat the plate and find a pill. The right hand will find the glass of water and raise it off the table. Both hands now hold something important and she knows there’s a job to do, but it’s not easy. She looks at each of them in turn and, sometimes she just starts drinking like crazy, going through half the glass. “Don’t forget to take the pill,” I’ll remind her gently. As if I woke her up from a dream, she jerks her head away from the water and looks at me, “Oh!” she says, and looks at her pill in the waiting hand, as if it is a complete surprise that she’s holding a pill. Then she takes it and proceeds to take the rest without a problem. In this way she often runs out of water before taking her pills. Once she starts drinking, sometimes she just keeps drinking because she knows how to do it. Which is fine. Water is good for you. Automatic pilot is a familiar problem. She needs to be reminded that she might be done brushing her teeth after, eyes closed, she seems to have fallen asleep to the rhythm of it.

Some days she’ll put down the glass and reach for a pill with her “water hand,” then her pill hand waves around looking for something to do, so she puts the pill down and her water hand rests humbly on the table, as if punished for doing the wrong thing. Then the pill hand begins reaching for the water – the thing that was missing from the equation a moment ago. OK, she’s got the water now, but it’s in the wrong hand. She looks at the pills in frustration. Why isn’t a pill in her hand? The water hand is not holding the water so the pill hand can’t get the pill. She puts the water down. By now I’m at her side. I put her water in the usual hand, “There you go!” and everything starts to work as it should.

Sometimes she simply doesn’t see the glass of water and desperately asks for. “I need water!” a pill in her pill hand as she implores desperately, the water hand she’s waving just barely missing it, so I lower her hand to touch the glass and she picks it up, “I’m sorry.” The struggle is real.

After dinner last night I put her little white plate of pills in front of her with her glass of water. But there was also a folded napkin on her placemat. She was confused by the third object. She picked up the water and looked at the napkin, then the dish of pills, then the napkin, her left hand hovering over one then the other, like a helicopter looking for the landing pad. I jumped up from my observation post across the table and took the napkin away. She landed on a pill at last, and began the ballet, each hand doing as it should in the proper order.

Something new last night was that she recognized that the napkin threw her off. She also recognized that this was a sign that her brain is not really functioning well. When she came to help with the dishes, which is always a struggle anyway, she was particularly frustrated by what seemed like her normal behavior – not knowing where to put the fork in her hand.  The silverware basket in the dishwasher might as well be a Rubik’s Cube.  The additional level of dysfunction came when she forgot she was holding the fork in her right hand and removed a bowl from the dishwasher with her left hand, as if it was time to take things out, not put things in. I was very kind and patient when I said, “That stays in. Here, put the fork in, and touched her right hand with the fork.” She looked at the fork as if she was very surprised to see it in her hand. I think that’s what really threw her off.

“I can’t do it,” she said. So I said, “Like this,” and put another fork in the basket. She quickly chased my fork into the basket with hers, as if she’d lose the moment had she hesitated. For the rest of clean up she took her time, got things done as well as she normally does – glasses placed right side up, plates askew in the rack – all of it easy enough to redo when she’s not around later.

The final blow came when we were folding laundry to an Indiana Jones movie. We had changed into her pajamas, brushed her teeth, and, as is our way, were about to spend a half hour or so relaxing before her bedtime of 9pm. The pile of laundry was on the couch, but she prefers to fold on the floor where she can spread out comfortably. I gave her a little pile of laundry to work on. Usually she needs plenty of time to flatten something out, then think about folding it over, then over one more time, and whatever it is, it’s smaller than it was and you can put it in a sweet pile to refold later. She usually enjoys the accomplishment.

But last night she did not. She couldn’t remember how to fold. She laid the first item out flat, and kept flattening it. Then stopping. Then flattening it some more. Then she started crying, “I don’t know what to do,” she said, plain as day, as those familiar phrases always are. I reassured her that it was ok, but she insisted that it’s not ok. She picked up something else and flattened it. Then nothing. No fold over. Just the flattening. Her quiet tear became a sob, “I’m going down,” she said, taking the effort to show me the stair steps down, down, down, to be sure I’d get the meaning.

My heart was breaking. There’s no pity in the world like seeing someone you love in anguish, and her anguish was deep last night. We had spoken several times over the past month or so about dementia, her brain function being compromised by disease, so she knew what this was about. She was expressing very clearly that she feels the dementia gaining ground. 

What could I do but hold her and love her, and tell her I’m here for her and we’ll get through this together. I tucked her in bed, tears still rolling quietly, as she whispered, “I love you so much.”