On Ritual

I've spent a great deal of refreshing time off line in the last 10 days while practicing for and singing in the Temple Beth El choir for the High Holy Days. That detox was really needed, especially given how ugly things have become recently.

I'm one of those people who always reads the footnotes and the acknowledgements when I read books, and when I'm in synagogue I'm no different - some of the most interesting stuff about the Torah is found in the commentary. This quote about ritual in the High Holy day machzor really struck a chord with me:

"Ritual fills the human need for completeness. It speaks to the depth of human emotion by giving a specific form to work through diverse emotions."

This resonated with me on so many levels. Firstly, as the parent of a kid who grew up on the autistic spectrum, I know how important ritualistic behavior can be for dealing with emotions like anxiety, anger, insecurity, even happiness.

But it's not just for those on the AS. Go through the experience of losing both of my parents in rapid succession, Dad to the long, slow, painful goodbye of Alzheimer's and Mom to the sudden, unexpected and no change to say goodbye of a DVT, made me appreciate how humane and necessary the rituals of shiva and mourning in the Jewish faith are to dealing with grief. Shiva, while exhausting, reminds you that you are not alone in your grief, that you are loved, and that you have community to support you. In the case of my dad, where I'd only been allowing myself to remember my dad as he was at that very moment during the Alzheimer's descent, because thinking about him as he was before was too painful, shiva was a time where we all could start to reconnect back with "real Dad" - the one we'd started to lose so many years before. We put together a slideshow that played throughout of pictures of him throughout his life and it gave us a chance to talk about him and tell stories and remember the man we missed so much and had been missing so much all through the Alzheimer's journey.

With Mom, her death was so sudden and unexpected, and came so soon on the heels of losing Dad, that the grief felt like it was bottomless and never-ending. But I had children, book deadlines and a mortgage and health insurance to pay. I couldn't let myself give into the grief. I had to get up and persist - as one does. But the grief was there, always. The ritual of going to synagogue to say kaddish for a year was healing because it meant that I wasn't just allowed, but prescribed to recognize that I was still mourning, even though I was still having to pick myself up and get on with life, because that's what you do.

On certain Jewish holidays, there's the Yizkor service, in which we remember those who have passed on before us. In Orthodox Congregations, they ask everyone whose parents are still living to leave. Because I'd been attending an orthodox congregation before my parents died, I'd never been in a Yizkor service until after my father died. I remember the Yom Kippur service very shortly before Dad died. I'd spent Kol Nidre with him instead of going to services, and I knew he wasn't going to make it until the following year. When my son and I went outside for Yizkor, I started crying and I said to my son, "This is the last time I'm going to be outside for Yizkor." And it was.

Now I attend a conservative synagogue and I realized yesterday as I was crying my way through the beautiful Yizkor service that there were young kids in the room and that people hadn't been asked to leave if their parents were alive. I was talking to my husband about it this morning, and we both thought how much healthier it is. Sure, kids might get scared by seeing their parents cry, but they also realize that mourning people you love is natural and part of life - and that it's okay to cry. I remember when I was at Silver Hill, and I told the psychiatrist that I always cried in the shower because I didn't want my kids to see me cry. He said: "What's the matter with letting them see you cry?"

That was one of the "aha" moments when I realized that it was okay to be human, not "perfect".

There are so many different kinds of ritual that can provide comfort - they don't necessarily have to be religious. But there is comfort and meaning in ritual - especially when community is a part of it.

Dads of Daughters: This is how you do it

Ever since Mom passed away suddenly and unexpectedly in March, we've been going through her apartment, trying to get the place ready for sale. Mom saved everything. EVERYTHING. 

Today I found the speech that my father gave at my wedding. Of course, I heard it before, on Sept 3rd, 1989, but that was a long time ago, and I was pretty overwhelmed with emotions on the day. I remember crying at the time, but today when I found it, I cried again for completely different reasons. My father died in November 2013, but even before that he had lost the incredible intelligence and way with words that made him the man he was to Alzheimer's. But not the love for us. He never lost that. His eyes always lit up when he saw us, even if he didn't remember our names.

Finding this speech brought my father back to me and made me miss him all over again. But it also reminded me of how much of who I am is because of who he and Mom were. If I am brave, it was because Dad and Mom were brave. If I have the courage to stand up for what is right, it is because he and Mom were courageous. 

If I have now found the love and support of a good man who respects my intelligence, it is because my father deeply loved my mother and respected her intelligence. 

Fathers of daughters: This is how you do it. 

SORROW FLOATS: Eulogy for my father – STANLEY P. DARER

delivered at Temple Beth El, Wednesday November 6th, 2013

I wouldn’t be the woman I am today if not for the influence of our father, Stanley Paul Darer – Schmaria Pesach ben Aaron v Malka

A critical part becoming a good writer is learning to be good reader. My father was a voracious reader who modeled to us, his children, that not moment of time that could be devoted to reading should be wasted - not even when sitting on the throne doing one’s business.

We always had a wide range of reading material available everywhere in our house, including the bathroom, which is where I got my start reading Foreign Affairs. Dad’s taste’s ran heavily towards spy novels, for obvious reasons, as well as autobiographies, and historical non-fiction.

Dad taught us the importance of learning from history – something I wish more politicians would learn. As kids, we’d snuggle up in our PJ’s watching the amazing BBC documentary series The World at War with him. He was way before his time with “reality TV” – except there was nothing lighthearted or prurient about this variety.

But Dad wasn’t always serious. He loved the absurd, too and we’d laugh together watching Monty Python and Benny Hill.

Dad was like that – quick to anger, but equally quick to laughter.
He taught us we should observe, and more importantly that we should care about what was going on in the world around us.

He also taught us, by his example, to be good citizens who engaged in public service. But as we got older and started developing our own points of view, we didn’t always agree on the direction of that public service. When my political views started to diverge from Dad’s, the arguments at family get togethers could get loud and quite spectacular, as my children Josh and Amie can attest.

Losing Dad to Alzheimer’s has been a slow, painful grieving process – I compare it to having your heart cut out with a butter knife. I hate the disease for robbing me of conversations I wanted to have with Dad, for robbing Josh and Amie of more time with their beloved Grandpoo, and for stealing the chance for Dylan, Daniel and Hank to get to know Papa and Dad as he really was. But as painful as it’s been for all of us, there have been moments of grace and humor, and even some lessons that living with this for the last ten years has taught me.

I learned that being open and giving to others eases your pain, too. I’d bring our dog Benny to visit Dad, with whom he had a very special relationship. If Dad was having a bad day and I felt sad, taking Benny to visit the other residents and seeing the smiles he brought to their faces made me feel better. Benny and I have made so many friends at Waveny that we’re planning to go for official therapy dog training so we can continue our visits.

Perhaps the most important lesson I’ve learned from Dad’s condition is to live more in the present. I’m Jewish, and a Mother, which (funnily enough) makes me a Jewish Mother, and if that weren’t enough qualification for being a total worry wort, I’ve fought depression and anxiety since I was a teenager. When I went to visit Dad I had to learn to go with the flow - to meet him wherever he happened to be that day. Sometimes it was the past, but mostly it was the present. We’d hold hands, listen to music, enjoy walking Benny, and just being together. The last time my father said coherent words to me, he smiled, kissed my hand and said, “You’re wonderful.” He might not have remembered my name, or even that I was specifically his daughter, but he remembered his love all of us up to the very end.

And that’s the other really important thing I’ve learned from this long and painful journey. I’ve been to weddings of Christian friends, and always loved Paul’s letter to the Corinthians. I’ve thought of it often these last few years: “But now faith, hope, love, abide these three; but the greatest of these is love.” Dad didn’t remember my name, but his face still lit up when he saw me. Love is the greatest of these, and it’s what has supported us all and helped us get through this difficult time.

One vacation when I was home from college, Dad was reading The Hotel New Hampshire by John Irving. He drove me crazy because he’d start cracking up while he was reading and then he’d insist on reading the passage that made him laugh aloud. They were mainly about Sorrow, the Labrador, “a fetcher and farter”. I think Sorrow tickled his funny bone because we also had a Labrador – (Winnie, named after Winston Churchill) who could be rather flatulent himself.

I finally begged Dad to stop because I wanted to read the book myself. Like I said, Dad was great at modeling reading – and, pretty good at book talking, too.

But when he finally handed me the book, my father didn’t warn me about the sad bit - the part that made me cry so much when I got to it that I had to put the book down for the rest of the day to recover before I could continue reading.

Dad taught us how to drive, he taught us really inappropriate jokes, he taught us patriotism and the importance of casting our vote, he taught us to respect the office of the President even if you don’t agree with the man in that office. He taught me that I should always drink alcohol more slowly than any guy who took me out on a date. When I was going through my divorce, he came to Chabad every Shabbat to sit next to my son and help him prepare for his Bar Mitzvah.

But here’s the thing - Dad knew that we had to discover for ourselves that Sorrow Floats.

And even though we’ve had so long to prepare for this, even though we thought we were prepared, the shock of turning the page and learning that lesson, that Sorrow Floats, is just as devastating now as it was when I read the Hotel New Hampshire, all those years ago. But this time, I can’t go and talk to Dad about it, which only makes it more so.

STANLEY PAUL DARER
1934-2013

This is one of our favorite family pictures of Dad because it is so him - how many people would go for a camel ride in the desert in a coat and tie? But it was so very, very Dad.

I'm Walking for Alzheimers - in honor of Dad

I've written about my father and how painful it is losing him to Alzheimer's in previous posts here. I describe it to people has having my heart cut out with a butter knife. It's slow. It's painful.

But it's not without moments of beauty and love. My father has always been a dog person. We were rarely without a dog growing up, and although he could be very strict with us, my dad was a complete marshmallow when it came to dogs. Dogs know these things. By the time I got Benny in early 2008, Dad was already fading. But they established a very strong bond.

Fortunately, the Waveney Care Center ,where Dad lives now, is brilliant about allowing family members to bring in pets. Benny,despite having been turned down as an official therapy dog as a puppy because he couldn't maintain a sit/stay for long enough, is a regular visitor and has developed quite the fan club. What's even more amazing to me is that he's learned which residents are real dog people and makes a beeline for them as soon as we walk in the door.

But it's my father he's most excited to see. We have to go up in the elevator, and Benny knows exactly where to go:




As you can see from the pictures below, when he gets there, the love is mutual. Even if Dad is sleeping or agitated, Benny brings a smile to his face.

But Alzheimer's is a one way street, unfortunately, and Dad's condition has deteriorated since last year at this time. He is even more confused, and once when I went to visit him he'd forgotten how to pet Benny - I had to take Dad's hand and remind him how to stroke Benny's soft coat with his palm. It was heartbreaking.

And then there are what I call the tragicomic moments - the ones I am saving up for the adult novel I plan to write some day when I have some distance from all of this. Like when I went to visit Dad and I think he thought I was my mother (because I look like my mom) and told me he just wanted me to kiss him all day.

I was like, "Um, Dad, I'm your daughter. Folks tend to frown on that kind of thing."

Figuring I better get him to a more populated area, I walked him to the elevator. I'd just thrown on a sundress, and I guess it showed a little more cleavage than I usual. And we're in the elevator and I see that's where Dad is staring. And one part of my brain, the teenage part is like, "OMFG, my DAD IS STARING AT MY BOOBS!! I AM TOTALLY FREAKING OUT!!!!" and another part of my brain, the writer part, is thinking "This is going to make a hilarious scene in a book someday" and the third part of my brain, the rational part, is like, "This isn't going to end well" and sure enough, Dad lunges at me and I'm like "DAD! You can't DO THAT! I'm YOUR DAUGHTER!" at which point he looks all sheepish and gives me a cute grin and I can't be mad at him because it's Alzheimer's Dad, not Dad Dad and really, this IS going to make a great scene in my novel some day but OMG, teenage me is still freaking out because her dad just made a pass at her in the elevator.

Or the times when he gets agitated and reverts back to his time working in the intelligence service. "Did you see the men with the guns?" He'll ask me. I've learned to just meet him where he is. "I've scanned the area, Dad, and it's all secure now. But it's safe because of you. Great job of being on the look out."

I try to find the humor in it, but that's because I have to in order to stay sane. There is nothing funny about this disease. I hate it with a passion. It is evil and heartbreaking, and it has robbed me of conversations I want to have with my father, ones I kick myself for not having before.

That is why I'm once again participating in the Walk for Alzheimer's. If you are able to support our team at any level, I will be extremely grateful.

Here's where to donate: http://act.alz.org/site/TR/Walk/CT-Connecticut?px=6866996&pg=personal&fr_id=3300

Music, Memory and Alzheimers

One of the many things I love about my MidLifeCrisisMobile is Sirius Radio, because sometimes when I'm listening to Deep Tracks, Classic Vinyl or Classic Rewind, a song will come on and boom, I'm taken to another time and place. It happened yesterday when I was on the way back from visiting my dad at his assisted living facility - "Fat Man in the Bathtub" by Little Feat came on and I was suddenly back at Duke, sitting on the little balcony above the doorway at Wilson House, the one you had to climb out of the bathroom window of my suite to access, drinking beers and watching people hang out and play frisbee on the East Campus quad.



(Note, this is not a song where you have to ask for "More Cowbell". It is freaking Cowbelltastic.)


A month or so ago, I heard this song, which I had on vinyl but hadn't listened to since 1989 when I moved to England and last owned a turntable:



Even though I hadn't heard it over twenty years, I still remembered all the words. I asked my social network friends the question: Why do I remember the lyrics to a song I haven't heard in over twenty years, but I can't remember what I ate for breakfast?

I was thinking about this yesterday when I went to visit Dad. He was pretty out of it when I arrived. His circadian rhythms are reversed, so he spends a lot of the night walking the floors, and then is sleepy during the day. When Benny and I arrived for our visit, it took Benny a lot of face and hand licking to wake him up, and when he did wake up, he was very groggy. Downstairs, they were having the weekly singalong, so I encouraged Dad to get up and come for a walk with us so we could go join in. He held his head when he stood up, and because he can't articulate what he is feeling, we (his family and the staff) have to work together to figure it out from his past medical history and the clues he gives us). Are his medications affecting his blood pressure, causing him dizziness? Does he have a headache? It's like a giant guessing game, where the patient can't tell you if you have the right answer. All you can do is watch and observe and see if he looks happier and more comfortable.

We went to join the singing, and Dad sat quite happily with Benny on his lap, and was even happier after my brother John joined us.

The songs they sing are mostly from the 40's and 50's. "Smoke gets in Your Eyes." "As Time Goes Bye" "The Tennessee Waltz" "I love you truly, dear" (which always makes me verkempt, because my Grandma Mollie, Dad's mom, who also ended up with Alzheimer's, used to sing it to us).

Yesterday, I witnessed one of the ladies, who usually smiles at me but never speaks, get totally excited and talkative when her favorite song came up. She sang, loudly and not particularly tunefully, but it didn't matter. She was responding, and it was beautiful to see her face light up and to witness how it was the music that had touched some memory deep within her and turned on the switch.

I turned to my brother and asked, "What songs do you think they'll play when it's our turn?"

And I had this vision of myself, my wrinkled face lighting up, shouting "BISMILLAH, NO! WE WILL NOT LET HIM GO! LET HIM GO!!" as my middle aged children cringe. Or maybe, by then, they'll just be happy that Mom remembers, and sing along with me.

World Alzheimer's Day

Today is World Alzheimer's Day, and once again I'm celebrating the special person in my life who is afflicted with this devastating disease, my beloved father, Stanley Darer.

Since I wrote about Dad last year on World Alzheimer's Day, his condition has deteriorated somewhat, both physically and mentally. He can't walk as well as he used to, and sometimes has to use a walker, although he doesn't like to. When I visit, I hold his hand. His confusion has definitely increased. It seems to go down in steps, plateau for a while, then deteriorate a bit more. The Awesome Boyfriend asked me if I thought Dad still knew I was his daughter. I said, "No, I don't think so. But his face still lights up when he sees me, and he definitely knows I'm someone who loves him and who he loves."

And deep inside, he still worries about me. I've often told my kids about how difficult it was for me growing up because my dad had the double standard common to his generation between his male and female offspring. It was a source of tremendous resentment and frustration as a teenager.

I still remember exactly where I standing as a young woman in my 20's, working on Wall St and putting myself through business school at night for my MBA in Finance, when my dad told me: "I won't relax till you're married and have a man looking after you."

I was speechless for a moment, thinking of how I'd always worked so hard to prove myself, how I had to work twice as hard as a guy to get credit, deal with sexism constantly, and went ballistic. "Who's looking after me now?!" I shouted.

The other day when I visited Dad, we were sitting on a bench holding hands and he asked me a question he quite often does when I visit: "So are you married?"

These days, the question doesn't make me ballistic. I smile, and explain that I was married, I got divorced, but I have a mensch of a boyfriend that I've been with for six years. Dad smiles, and I know that somewhere, deep inside, it makes him feel better to think I have "a man looking after me."

And I smile, instead of going ballistic, because I know that thought makes him relaxed and happy.

On Rosh Hashanah, I asked The Awesome Boyfriend to come with me to visit, so Dad could see living proof of my "man". Because we'd gone to services, we went in the afternoon, and Dad tends to be more confused then. AB and I think Dad thought the AB was my son, because he kept commenting on how much taller AB was than the last time he'd visited.

We decided to take Dad for a walk in the garden because he seemed really confused and we thought the fresh air and exercise might do him good. On the way outside, we passed some of his friends who were gathered round the TV watching The Sound of Music. And he introduced me to one of the other seniors as HIS CHILD. I almost started crying - because he REMEMBERED. He doesn't remember my name, but he remembered that I was his daughter, at least for that moment, and it meant the world to me.

Here's Dad discussing New Year's Resolutions with Benny


On September 30th, my mother and I are participating in the Walk to End Alzheimers. If you are able to donate to help us reach our fundraising goal, to help find a cure for this horrible disease.

xo

Sarah

In honor of Dad on World Alzheimer's Day

Today is World Alzheimer's Day, and I want to honor a very special person in my life who is suffering from this awful, soul destroying disease, that affects not just the person who is diagnosed with it, but the entire family who loves them. That person is my father, seen here with my dog, Benny, someone who can still bring him joy and comfort just by showing up.

I was in therapy myself when I first started worrying about Dad. His side of the family has a strong family history of Alzheimer's, or dementia or whatever you want to call it. My grandma Mollie had it, her mother Clara had it, her brother, my great uncle had it.

Back in 2005 or 2006, I started noticing that my father, who was extremely eloquent and never at a loss for words, suddenly was. Our conversations during those years under President Bush were usually about politics. Dad was a lifelong Republican and I'm a "recovered Republican" - or what critics of my political columns call variously "an America-hating communist, a socialist, a terrorist -lover" or my all-time favorite, someone who is "using the American way of life to destroy the American way of life and the rest of Western Civilization in the process!" But I noticed during those conversations - which inevitably devolved into arguments - that Dad would suddenly pause and struggle to think of a word - a word that normally would have tripped off his tongue easily. The kind of vocabulary that someone with his background in government would have to hand as easily as we writers would have manuscript or revise or adjective. And given the family history, it scared me.

It's hard to talk about this stuff though, to the person and to other people in the family. "Uh, hey guys, I think Dad's losing it." I was fortunate that I was in therapy, because I could talk it through with my therapist, and she was able to tell me something very important - that if we got Dad on some drugs like Aricept early enough, it might prolong the onset of the more serious cognitive decline. She also gave me the name of someone at Greenwich Hospital who specialized in elder issues, who my parents could go and see. It was that knowledge that gave me the courage to mention my concerns to first my brother, then my mom, and finally Dad.

I took him out to lunch at the Bulls Head Diner, and told him that I was worried about him. And he admitted that he was worried about himself. It turns out that everyone was worried, but no one wanted to worry anyone else. We were all living on own little islands of anxiety, until finally one of us swam across the sea and brought it out into the open. The thing about bringing the worry into the open is that you can DO something about it. While there's no cure for Alzheimer's, I'm convinced that getting Dad on those drugs early slowed his decline, giving us a few more years, particularly precious for my kids so that they can remember Grandpa (or "Grandpoo", as he's affectionately known) more as he was than as he is now.

Towards the end of last year, however, the decline started to accelerate. We had to deal with the very painful issue of his driving, which I talked about in a column here. Understandably, he was upset and angry about having his license taken away. He still talks about it sometimes.

Earlier this year, there was another marked decline - this time involving a personality change and violence. The day we'd been dreading, but thanks to my brother's foresight, he and I had been planning for financially for over a decade, arrived - when we had to make the incredibly difficult decision to move Dad to assisted living. I remember visiting my Grandma Mollie when she was in a nursing home, and it was so awful and depressing - I couldn't bear the thought of Dad being in a place like that. But we found somewhere that is different - for what it is, it is wonderful. The rooms are light and sunny and there are always activities going on. Dad had been going there for outpatient adult day care for a few months, so he was already familiar with it.

But still...it's not home. And he might be out of it, but he still knows that.


A week or so ago, the awful Pat Robertson said yet another awful thing, for which I will never, ever forgive him: Divorce your spouse with Alzheimer's. It made me furious beyond measure, and to me, is yet another example of how sometimes (not all the time) those who follow the letter of the Bible's laws completely miss the spirit, and end up being some of the most godless, least compassionate people on the planet.
Last Friday afternoon they had a Dog Show for all the residents where Dad lives. Although Benny isn't an "official" therapy dog, he certainly brings joy to Dad's life and a smile to the faces of all the other residents he encounters. I brought him for the dog show and he won "Waggiest Tail". Dad was VERY proud.



Right after we took this picture, they had a singalong of Patriotic songs in honor of Constitution Day. My dad spent decades working for the US government, and he served in town government when I was growing up as a Republican. He is one patriotic dude, let me tell you. He used to know every word of every patriotic song there is. When we started singing, he was proud - so proud that he had tears in his eyes, and saluted every few bars. But HE COULDN'T REMEMBER THE WORDS. It made me want to cry, but I didn't want to cry in front of him. But that's what Pat Robertson doesn't understand. My dad is NOT walking dead. He may not remember my name. He doesn't remember my kids' names. He remembers the dog better than he remembers me most of the time. But he's still at his core, who he always was - a patriot and a man who loves his country. And his face lights up every time he sees me. He still loves me. Alzheimer's has just robbed him of his words to express it. I'm grateful to G-d that I still have mine so that I can express my love to him, and that, Pat Robertson is why you are so very wrong.