Christmas Eve forgotten

I close my eyes and remember everything. Turning sixteen and nineteen and twenty-three. My first job and my first apartment on East 22nd street and who broke my heart and all of my friends I laughed and cried with and all of the days and nights and years before today. And I open my eyes and I am 33, the same age my father was when he died with the same number of children he had.  

All of these things, my memories, are an intangible part of me. And I think about my rapidly disappearing grandmother and wonder what she still remembers. I wonder what her mind is like. I imagine it to be dark hallways that lead to even darker rooms, walking slowly around a house but never finding the door to the room you wish to enter. She is forgetting more and more it seems. The dots have almost completely stopped connecting.

I think one of the more difficult aspects of Alzheimer's is the reality that it doesn't get better. Not the point that she is at. No amount of medication or good diet or exercise or yoga (as if she'd ever do that!) will improve her current state. I am sadly aware that my visits are forgotten shortly after I leave. I brought two of my children and my mother to see her on Christmas Eve. She opened the gifts we brought and ate Christmas cookies and spoke to my brother on the phone for his birthday and yet none of it clicked for her. There was no recognition of it being Christmas. 

Two days later my uncle visited and mentioned my visit on Christmas eve. She was adamant that no one had been to see her. I felt sad and also thankful that my kids had gotten another visit with her while she still knows who we are, even if she later forgets, they will remember.

The memory keeper

Last night was one of those nights that I couldn't talk without crying. I'm up visiting my mom and got to see my grandma for the first time in a few weeks, since I'd been sick with the flu for nearly two weeks. When I arrived at the nursing home bingo was going on in the dining room, so I went to my grandma's room to see if she might like to join in. To my surprise she said yes. So I wheeled her down and we grabbed a table and started to play. Ten minutes later my grandma glances over at my card and whispers," you have bingo!"  I said, " I know, but I think it's better to let someone else win." She squinted her eyes at me and pursed her lips and I expected her to fight me on it, then her face softened and she just shrugged her shoulders and said okay. Two minutes later a tiny old lady at the next table chirped 'Bingo!' I looked over at my grandma and smiled and she smiled back.

After bingo was over I went to her room and got a pack of cards and we proceeded to play gin rummy for an hour. There were moments that I felt myself getting choked up and I had to swallow hard and push it down. My entire life my grandmother and I have played cards. Sitting there with her at the table reminded me of so many afternoons of my childhood, sitting at her kitchen table, a little bowl of oyster crackers and glasses of iced tea within reach.

I got back to my mom's house in time for dinner and explained in detail to her my visit. She understands like no one else the emotional roller coaster this entire journey with my grandmother has been. After getting the kids bathed and tucked in we sat downstairs and discussed plans for the holidays. And laughed. A lot. We went upstairs and I went into my room and noticed my grandma's jewelry box on the dresser. I set it on the bed and lifted the lid and knew immediately this was gonna be tough. It was like little pieces of her life were in this box. A garnet ring, a pin from the telephone company she worked at, a charm from Hawaii, her highschool graduation pin from 1942. My mom came in the room and sat down on the bed with me and we began to look at stuff together. And I had the deep, heart breaking cry I had been avoiding for so long but desperately needed.

Today I will drive back to Brooklyn and take her jewelry box with me. I know that most of what's in there will never be worn by me, but I feel it's my job to keep it all. The rosary beads, the plethora of ugly gold hoop earrings and even the Mass card from a friend that passed away in 1994.  I will keep her memories for her, long after she has forgotten them all.

Goodbye Lou

I was just reading about Laurie Anderson's experience being there as Lou Reed died. His final moments. Holding him as his heart stopped beating, and how proud she felt and how full of wonder he looked. It sounds absolutely beautiful. I wonder if that is what it will really be like?

My mother and I talk a few times a day. Everyday. We have for my entire life. Recently I have begun to feel a little anxious if I see her call at an unexpected time. I think she will be delivering bad news. And bad news not just being that my grandmother has died. There are degrees of bad news. I am waiting for the day to come when I go to visit and she no longer recognizes me. For now things seem to have stabilized health wise. She is safe and miserable. That's it.

But as always, I am trying to find the good in all of this, and that is my mother. She has been amazing. She has spent countless hours, many more than me, at doctor's offices and rehab centers and social security offices and on the phone with banks and government agencies. I am so very proud of her. She has taught me how to be a good mother and a good daughter.  I know that there is no escaping it, that one day my mother will die. It terrifies me to imagine the day that I will wake up and not have her to call. I will be lost without her. I love you mama.

The Queen of Packing

My grandmother was an amazing packer. You'd think she was raised on a boat with a tiny bed suspended from the ceiling and a kitchen table that doubled as guest quarters. She did not. She grew up in a house in Washingtonville, New York with seven siblings. Perhaps being one of eight made her feel space was valuable. Or being raised during the Great Depression, the feeling that nothing should be wasted, not even space in a suitcase.

She taught me to roll up my socks and underwear and put them in my shoes, and the shoes went in a plastic bag, probably a clear produce bag she had saved from the grocery store. She always seemed to find extra space that I didn't imagine existed.  This was true for packing a car as well. She could neatly and efficiently pack a trunk like no one else.

The person she is today is so different than the woman she once was. I guess I keep writing about it because I still have a hard time accepting that the woman I've loved all these years is slowly dying in a nursing home tonight. I will keep writing about it, because I want to honor who she was while still loving who she is now.

All cleaned out

It's in the little actions that I feel her void the most. Things I do without thinking when my body is on auto pilot and my mind wanders to her. Washing my kids hair, doing the dishes, making an apple pie. Things my hands have done a hundred times and I imagine her doing these things in the past, washing her kids hair, making me pie, doing the dishes while my grandpa stood next to her drying each one. And then I wonder what she is doing now and the sadness creeps in.

Her apartment is now cleaned out. Completely empty, like it looked a year ago when I moved her in there. All of her furniture has been given away. Her bedroom set I've known my whole life was broken up, night tables to one person, bed frame and dressers to another. Not the way she would have wanted it, but the way it had to be. I requested her cedar trunk and her wooden step stool for the beach house. I don't need these items, but I need to have a tangible object that was hers for when she is gone.

I was concerned about how she would feel about staying in the nursing home for Thanksgiving, but it seems my concerns were unnecessary. She hasn't mentioned it. I haven't seen her in over two weeks because I've been sick, but my mom keeps me posted on her daily moods and how she's feeling. She seems to vacillate between cranky, tired, disinterested, childlike and sad. I will be up to see her next weekend and I'm looking forward to it. I'm acutely aware that each time I go could be the last time she recognizes me, so I'm going to try and make the most out of each visit.

We didn't vote on that

I looked around at all of the people on the train this afternoon and found it hard to imagine that all of these people were once someone's baby. All of these people kept someone up all night and cut teeth and took a first uncertain step with someone who loved them standing by to cheer them on.

It reminds me of how I was feeling yesterday when I visited my grandmother in the nursing home. I looked around at the mostly women in the diningroom and imagined that they were all once like me. They fell in love and got married. Their bodies made babies and raised children. They had jobs and dreams and disappointments. And now these bodies, that have been theirs since the day they were born, have failed them. They are almost all wheel chair bound. Their hands and spines have begun to bend into c curves, reminding me of fragile birds.

I was joining my grandmother and her two table mates for dinner last night. Jackie and Eileen were their names. Jackie has a deep sadness about her, despite the fact that she is leaving the nursing home in a few days. She believes in keeping her mind busy so she joins in on many of the activities, although she does not enjoy them. Eileen is a hoot. Alzheimer's has taken her memory, but not her sense of humor. When I was teasing my grandmother about something, she told me I didn't need to eat with them again. Eileen looked up from her soup and shouted , 'We didn't vote on that! She stays!'. Jackie agreed. My grandmother looked across the table at me with a little grin. It made her happy that the other ladies liked me.

It was really a nice visit, but I found myself fighting back tears as I wheeled her back to her room. My visits at once every two weeks, are too seldom. I keep trying to carve out more time for her and work and kids and the rest of my life just keeps getting in the way. I am trying to get to know the 'new' her. And enjoy the time I have left with her.

Guilt

Tonight I am feeling guilty. It has been a week since my last visit with my grandmother, and will be another week and a half until I get to see her again. We are leaving for San Diego in a few days for a quick get away to see two of my best friends. And I feel guilty. Rather than excited and happy to take my kids on vacation, I am feel bad about the amount of time that passes between visits.

As much as I would like to be there with her, playing Scrabble and cards and having lunch with her, I have my own family now and businesses and things that need my attention. I feel a bit like I've abandoned her, pushed her into a nursing home against her will. I think I should be there more, and I can't, and no matter how logically I approach this, I still wind up feeling terrible about it.

Life goes on. This a phrase that keeps going through my head. She had her kids, and her kids had kids, and now I have my kids. There are only so many hours in a day and for me, my kids have to be my priority now. And I know that she understands this. It just makes me sad for her. And for me.

Hoping for peace

Today felt long and full. When I finally sat down, I felt like a machine shutting off, like a noisy washing machine spinning the clothes one last time, slowly draining the water and sitting silently, taking it all in.

My mom and I took two of the kids with us to see my grandmother this afternoon. In many ways it was a good visit: she was sitting in her wheelchair in the hallway when we got there talking with one of the other ladies, she looked genuinely very pleased to see us, she looked clean and did not seem overly tired, the kids mostly behaved. And then the not so good: when Maggie pushed her in her wheel chair and asked her where she'd like to go she said home. Maggie looked confused. She said, but Mommy said this is your home, that you live here now. My grandma agreed that she does, but that she doesn't like it. I asked my grandma if she could show Maggie the restaurant she eats in (the dining room) and she said yes and Maggie wheeled her that way and that seemed to smooth things over. We sat in the lobby a little bit, chatting with some of the other residents and their families a little before we left. I gave her a big hug and kiss when I left and told her I loved her. And I do.

I feel guilty that I can not do more. I always assumed that when she got old that she would come and live with me. We have always been very close and it just seemed logical. And then I had three kids. And she developed Alzheimer's. And everything I thought I knew about how my grandmother's last years would be spent had to be rethought. This is certainly not how I thought things would play out. I hold out hope I guess, that things don't get worse, that she finds some happiness where she is, and that she can maybe find a little peace within herself while she is still here.

Lists

I think when I am truly happy in my life is when I feel things are in balance. When I am able to give to my family and my businesses and my friends and still find time for myself. When my house is clean and the laundry's done and all the kids' hair is washed and brushed. When I have no unreturned emails or phone calls or texts. I am not a list maker, not a pen to paper kind,  but I feel I always have this internal list of what needs to be done in any given day or week. It's something that drives Josh crazy, that I never actually write anything down. Not appointments or work schedule or lunch dates or grocery lists. Nothing. I used to make Christmas gift lists, but I think I just liked how my handwriting looked on unlined paper when I chose to write extra neatly.

The next few weeks seem extra busy, doctors appointments and dentists appointments, a trip to Beacon and a visit with my grandma, a trip to Long Island, San Diego at the end of the month and of course the everyday things that sometimes seem so overwhelming like homework and making dinner and matching up socks. And trying find time to spend at each of the restaurants.

But it's all good stuff. So who am I to complain that my life is too busy with really wonderful things? Only a fool would do that, and I'm no fool.

Allison

Missing someone who has died seems to hit me at the most unexpected of times. I was on the train this morning and glanced to my right and there was a girl, with great hair and strong eyebrows, a faint smile on her face while she listened to whatever was on the other end of her headphones. And my eyes filled with tears.

In December it will be three years since we lost our Allison. If I live everyday of the rest of my life making a concerted effort to be a good person, I will not be half as great as Allison was. Some people just have a light inside of them, a warmth that can be felt whenever they are near. She was one of those people.

She was a dancer and a dreamer, a sister and a daughter and an amazing cousin. She danced on stage and through life with a gentleness and ease about her. She had a beautiful spirit. Truly there was no one that didn't like Allison.  She was just one of those people.

Three years ago she was studying dance in Cuba. She was happy and had a boyfriend and checked in back home. We all missed her and thought she was crazy for going, but that was Allison. Determined to follow her own path in life, she went to India when she was 16. There was no stopping Al.

I had just finished working a rather difficult brunch shift on a Saturday. I stayed a little late and Josh was waiting for me in the car at the corner. When I opened the door his face looked strange and I assumed he was annoyed for having to wait. I started to explain that we'd been really busy, but he stopped me. And he told me. And I just kept repeating over and over again, I don't understand, I don't understand. She fell ill on a Wednesday and by Saturday she slipped away. That fast. And she was gone.

We talk about her often in our house. The first spring that she was gone my mom planted some fruit trees at her house and called them Allison's trees. The loss of her, so sudden and unexpected, has greatly impacted how I live my life today. Shortly after she passed we decided to have a third child. I started working less and spending more time with my family. My priorities changed. I missed her going away party and her birthday party because I was working. I just assumed I'd see her when she got back from Cuba. I've learned to not assume I will always get another day with someone I love. And I try everyday to let the people in my live know how very much I love them.

Everything changes

When we got in the car I turned to my mom and said, "I consider that a successful visit." I explained that this visit reinforced my belief that she is in the right place. 

And that's how I measure a good visit now. Not if she's happy or remembers things well or is doing tricks in her wheel chair in the hallway (which has never happened but it would be cool if it did). That would be too painful for me. I need to just know in my heart that our family made the right decision based on loving her and wanting what's best for her.

She was moved to the big dining room (which she refers to as a very nice restaurant) and has a new table mate, a nice woman in similar condition to her. It was really nice to get see a part of their daily routine today. My uncle was there, having lunch with my grandma, and it reminded me of how many lunches we shared together when I was growing up. My uncle's trucking company was behind my grandparent's house and often if he was working in the garage that day he would join us for lunch. 

It made me smile today, to think about life, always moving and changing, never one day exactly like the last, yet today could be so similar to a day twenty years ago, in the details. 

Everything changes. And tonight I'm okay with that.

Packages full of care and candy

I know that when my grandmother dies I will be devastated, but I will not have regret. I see her as much as my schedule will allow. I put together a little care package for my mother to give to her, since I won't see her until Tuesday. It's hard to know what to send, since Alzheimer's and depression have robbed her of any interest in anything it seems.

In the package I put two kinds of licorice, yogurt covered raisins, tons of pictures and a teddy bear I gave her when I was 10 and that she gave back to me a few years ago. My mom visited her today and brought her package and reported back to me that my grandmother loved it! I am feeling very encouraged by her enthusiasm and am looking forward to picking up a few things this weekend to start another package for her.

While going through photos to send her it really hit home to me how close we've been my entire life. My second birthday, my ballet recital in first grade, sitting on the couch with her at our house in Monroe with my cat Rusty after one of our many dinner dates, and of course, pictures of us playing Scrabble. We have spent hundreds of hours over our lifetime of friendship together playing Scrabble. It has been a privilege to play with her and tonight I am feeling hopeful that maybe we will break the tiles and board out once again.

Cinnamon raisin with cream cheese

I was nervous as we were driving up there. I kept looking at the directions over and over again, even though I had them memorized the moment we pulled out of the driveway. We left the kids at my mom's because I wasn't really sure what to expect. I felt conflicted leaving them, knowing what a source of happiness they are for my grandmother. I promised her I would bring them soon to visit.

My heart was in my stomach as I walked up to the front door of the building. Josh had come with me, which I was grateful for. I did not want to do this alone. I am not sure what I expected, but I do recall my first thought was that it did not smell bad, much to my relief. I found my grandmother quickly, and after having a bite to eat that I'd brought for her (a cinnamon raisin bagel with cream cheese, always her favorite), we headed outside to sit in the sun for a little bit. It was calm. Josh went for a walk to give us a little privacy and we talked, about playing cards and making pies and my kids. I asked her if she knew when she was forgetting stuff. She said sometimes. She said there were times when she could almost remember stuff and other times it was just completely gone. Several time I felt like I might cry, but I was afraid if I started I might n to be able to stop, so I just kept talking.

I had been wondering for awhile what level of recognition she had about her condition. She thinks she forgets stuff sometimes but its not too bad. She thinks she can live on her own still. Rather than contradict her, I told her that we feel this is the safest place for her to live right now and maybe we reevaluate in a couple weeks if there is a better place for her. Today my mother will visit her. She probably will not remember that I was there. That doesn't bother me anymore. A friend sent me an article on Alzheimer's which was truly fascinating. One of the many things I learned from it was that it doesn't matter if the Alzheimer's patient remembers a specific conversation or visit, if it was a positive experience they still benefit from it.

So I will keep trying to connect with her every time I see her, because even if she forgets me as soon as I leave, the love and kindness I show her will remain, long after her memory is gone.

More than just the sadness

This blog began as a place for me to come and vent and cry and yell at how unfair this whole situation is. And while I still feel the sadness and anger that led me here to begin with, I am beginning to want to write about more. I want to share about raising kids and running restaurants and husbands and ex-husbands and my fear of death and my abundance of wonderful gay best friends.

I am an ordinary girl who moved to the city at eighteen and have been blessed to meet extraordinary people along the way. I never had a plan. Like ever. Everything, year after year, has just kind of happened. I had jobs that I liked and ones that I hated. I lived in mostly small, crappy apartments with bad heat and lead paint and views of nothing good but I though they were amazing. It wasn't until very recently that I started dressing appropriately for the weather. Each year it was like a shock that I would need gloves and a hat to keep me warm.

Sometimes I am overwhelmed by the reality of how many people depend on me. My kids, my employees, my family. I get that I can't breathe I want to eat something or buy something or run screaming from the house feeling. But then it passes. And I remind myself how blessed I am, to have the family I have, my husband, my kids, my mother. Life is good. Not always, but enough to make the bad times worth it.

Figuring it out

I've never had to put a loved one in a nursing home before. Or witnessed someone decline physically and mentally, while having moments of perfect clarity. This is all new to me and I am figuring it out as I go.

This has been an exhausting, heart breaking experience. I think about my grandmother numerous times through out the day. When I'm getting my kids ready for school, during my first cup of coffee, playing with Crosby in the park, having lunch with friends. I am often just wondering what she is doing in that exact moment. Is she sad or lonely? Does she feel okay? Is she upset that she is not home?

I will see her on Sunday in the nursing home. I'm not really sure what to expect when I get there. My expectations are very low, mostly just hoping to find her calm and safe and possibly even content. I guess my expectations aren't that low. I'm an optimist a heart, I can't change that. I want her to be happy. It's all I've ever really wanted for her.

Card sharks

He asked her if she was a good card player. She said she believes she is. He said next time he is going to bring a deck of cards.

My mom and her partner Shabazz went to visit my grandma tonight, for the final time in the rehab center. Tomorrow she will be moved to a nursing home, a place I swore I would never put her in. I feel so much that I have failed her.

She will never return to her apartment. Not that she really liked it very much, which she made clear to me on many occasions, but still, it was hers. It allowed her to retain some independence.  Even after we had her sell her car, she still had her own place.

I close my eyes for a few moments to remember the way she once was, the woman who bathed me and fed me and scolded me and loved me. The woman who taught me to play cards. We would spend hour after hour sitting at the kitchen table play gin rummy. Bowls of snacks and cold drinks and lots of conversation. She always shuffled the deck, because she was so very good at it and I was not. I'm still not. She'd present the deck for me to cut and I would knock on top, indicating to her I trusted her and didn't need to cut the deck. At least that's what it always meant to me.

It's amazing to me that these times will not happen again. Its all in the past.

Don't Go In

I keep telling myself this over and over.

Don't go in. Just wait. It will be over soon.

Sleep training. It is for sure one of the most difficult things I've had to do in my entire life and certainly my very least favorite thing about being a parent. Listening to my child crying, shouting my name, so upset, and knowing I could end it all if I'd just go in.  But I can't. It's this terrible cycle I'm in with him, that I am his only form of comfort. And I know that my job as a parent is not to fulfill his every need, but to teach him how to fulfill his own needs.

Not My Cup of Tea

Feeling like I'm operating on borrowed time this morning, stolen moments that could vanish in an instant. The baby was up more than he slept last night, which now seems likes a mixed blessing, as he is peacefully slumbering in my bed, I have accomplished every task I wanted to this morning and now have a rare oppurtunity to write while the sun is still out.

Going to visit my grandma today and wondering who will be there when I arrive, which grandma will I be visiting.  Will she be flat and quiet and tired and confused? Or will she be pleased to see me and the kids? It seems no matter which one it is, she is always insistent that everyone in my family needs a good hair brushing.  Nearly every time she sees me she asks what I've done with my hair, in a tone that indicates she is not really pleased with it.  Rather than try to explain ombré to an 84 year old woman I usually say 'Why gram, don't you like it?' to which she responds, 'Its not my cup of tea.'  And this is okay with me. Even her insistence that my children look like ragamuffins is totally fine by me. I want her to have an opinion, to stay engaged.  I don't need her to approve of me or all of my decisions in life.  Especially if those decisions involving forgoing hairbrushing in exchange for peace and quiet once in awhile.

I'm going to the wake tonight of a woman that my grandmother really loved.  A woman that was my neighbor when I was growing up, a woman that was there, in my house, in the middle of a blizzard on the night that I was born, standing next to my grandmother as I entered this world.  Karla was one of those people you encounter rarely in life. She was a powerhouse. My mother and I talked a lot about her last weekend.  She could do anything, my mom said, there wasn't anything she wasn't good at.  Her daughter Tracy wrote beautifully about her mother's journey through cancer in such and honest and raw way that it was an honor to read it.  It has been my inspiration to start writing here. I am looking forward to seeing Tracy and her sister Terry tonight, I just wish the circumstances were different.

214 Elm

I can't say with any certainty when it began.  Certainly for as long as I can remember.

Spaghetti and meatballs. Apple Pie. Elegant Spinach (her name for creamed spinach).

She was always generous to send you home with leftovers. It was what the leftovers were packed up in that were another story. Sometime around the early 90's my grandmother started labeling EVERY piece of Tupperware she owned with a permanent marker.  214 ELM was scrawled on the bottoms of containers and the tops of lids.  Corningware lids, wonton soup containers, nothing was safe from that pen.

As I write this, I feel sad. The days of packing up leftovers is passed.  She no longer cooks, for herself or anyone else. She no longer has a kitchen. She has not lived in her apartment for a month and I do not expect her to return.  I pushed her to move into this apartment last year because I felt it was what was best for her. I felt she would be safer and less lonely.  I was wrong about the second part.  Her Alzheimer's was far more advanced than I realized.  With her I could never tell if she was unwilling or unable to change, to make friends, to join in.  Either way, it doesn't matter because the outcome is still the same.  She is old and sick and lonely and I just feel really shitty and angry and sad about it.

And that's it.

It's what she would always say.

Whether it was a casual visit or Thanksgiving, the question of, "What can I bring?" was always answered the same way:

"A bushel of fifties!"

This line is not reserved for just family.  Many a restaurant server who innocently asked if she needed anything else would hear this response. It's the kind of thing that would make all of us cringe, as we had all heard it a hundred times before and smiled politely everytime while silently wishing she'd never again utter those words.

Now, as her light seems to get a little dimmer everyday, as Alzheimers, like a thief in the night, has taken away her personality and memory and motorskills, I welcome any glimmer of her old self.  I look for signs that she is improving everytime I visit her, but they are not there. I have accepted the fact that all of the good memories I have of her have already been made.

My grandmother was born in 1929 to two Italian immigrants. She was one of eight children and once worked as a waitress in a diner where a man got drunk and fell asleep in his soup. I remember her telling me that story when I was a kid.

The woman I choose to remember is funny and tough, a fantastic card player, a wizard of Scrabble and crossword puzzels, a master of grilling, pie making, knitting, sewing and an avid watcher of "The Young and the Restless".  She treated her loved ones well but you would not want to get on her bad side.  She would hold a grudge beyond the point of absurd.  My own mother would often say to me while I was growing up, "Do you want to be right or do you want to be happy?"  My grandmother was always more concerned with being right, which unfortunately for her, severly impacted her happiness.

As this is certainly the final chapter of her life I am doing what I can to make it as pleasant as possible, which of course does not feel like enough.  While I am afraid of her dying, I am more afraid of her living in this darkness and confusion indefinetly.