So about 2 plus weeks ago I had started writing a blog in anticipation of Bryan’s 18th birthday, which was February 18. I was thinking a lot about my mom because she had been with us in the delivery room. My dad was outside in the father’s room. I am fairly well adjusted but I really didn’t need to have my dad watch me push a baby out. We had a boy! We didn’t know what we were having and my ex husband, my mom and I were just overcome with emotion at the sight of this little fella. My first words when they handed him to me were, “oh my God, that’s my face”. It was really the shape of his eyes that were mine. My mom was so caught up I had to push her out of the room, actually yell at her to go find my dad to tell him. I said, ” you are the meanest woman, go find him”. Of course I was joking, she was just so amazed by the mere sight of Bryan. When she did finally find my dad he was in the bathroom and my mom pounded on the door, and we all had a laugh about it. Great story but it falls flat right now for me. This blog is extremely personal and my writing now is both cathartic as well as an opportunity to memorialize my feelings in somewhat real time. I have found this to be very helpful for my healing, no matter the topic. On February 14 my mom had to be rushed to the ER from her Alzheimer’s facility due to a fall. If you are unfamiliar with Alzheimer’s (lucky you) all kinds of things decline, including depth perception and motor skills. Falling can be a daily occurrence. This fall led to bleeding on her brain, which led to my sister and I determining that hospice at the hospital was the best alternative. I will spare you the interim details but my heart was so mixed up. We knew this was going to happen but the timing was so tricky. I had a big birthday weekend in NY planned for Bryan, Jason and me and now not only was my heart broken, but it was in my throat. Fortunately, I had a mom who was such a great communicator. I KNEW she would be so angry with me if I spent his 18th birthday watching her die. Also, fortunately, I have a sister who also understood my mom’s wishes and insisted we go. We did go. The whole time I prayed my mom would not pass on Bryan’s birthday because I didn’t want her death to be associated with his birthday. While there might be an ironic sweetness to that, I just didn’t want it. The night before we left, after the hospice doctor let us know the prognosis, I asked the boys if they wanted to say goodbye to her. I felt she might not be alive when we returned. My children have watched her change and decline over time and they bravely and lovingly went with me to the hospice. Their goodbyes to her were fearless.
We did our best to celebrate, but I must admit that I was not at my best, most patient or most fun of a mom. On his birthday, which was Sunday, we had a group dinner and some of my closest, longest and dearest friends were with us. It was almost like a pre Shiva for me; my friends knew what I was going back to and the amount of hugs and love at this dinner helped to ease the tough transition back to reality on Monday. Bryan was happy in some ways and tense in others; he is a great read of me and takes his emotional cues from my demeanor. If you know me personally I have the absolute worst poker face and if I feel it, you know it. We switched our return flight to early Monday morning. When we landed I literally flipped out. It was almost as if being away was a dream and coming back I could not get back to my mom’s side quick enough. On Tuesday night I stayed over at the hospice with her since the boys were with their dad. I cannot say much sleeping occurred but I did get to tell her many things and kiss her and hold her hand. I had no experience with hospice but I must say I was so impressed with the sheer kindness of the people that worked there and the respect and dignity they gave my mom. My mom did not pass away until Saturday and the days from Wednesday to Saturday were probably the most tortured, stress filled of my life.(much love to those that constantly reached out to check on me during those days) My sister and I would go and stay and leave and agonize and go and stay and leave and agonize. We knew my dad’s inability to get there was holding her back and we were heartbroken for the end of their marriage, the unimaginable turn of events and the fatigue. I have named this FFS, Facility Fatigue Syndrome because the last four months have been a series of jostling back and forth between multiple hospitals, rehabs, etc. for us for both of our parents.
On Saturday my sister and I were together all day pushing time along. We were jumping out of our skin and every time the phone rang we were rattled. We had said our goodbyes multiple times but went back one last time to try to ease her way. We wanted her to let go. We finally insisted our father get on the phone and talk to her on speaker. His gravelly voice may have been somewhat unfamiliar, but it was our list ditch effort to give her freedom. Four hours later she died. No matter how prepared we thought we were the reality that your mom is gone hits you like a bus. We drove over to our dad’s rehab and told him together.
We are not unique in that we had a funeral and Shiva filled with friends and family. However, as with most significant events in your life there are always people who surprise you in the best way possible and reach right through to your heart. My friend from NJ’s mom came to the funeral because she lives in Boynton and was there to represent my friends up north. A friend I have not seen since high school,and did not know well but have since become close, sent us a food platter. A local friend made us a lasagna and brought it to my house. Countless deliveries and thoughtful cards and donations. Unexpected friends showed up at the Shiva because they had seen it on Facebook, knew me since I was a kid, and were in town visiting family. I am overwhelmed and humbled by the thoughtfulness. There can be those that disappoint too, but it’s useless to focus on the negative and it’s so not my nature. Autism has taught me so much about resisting the urge to judge. Some people asked me if Bryan understood what was going on. Just the mere asking shows I have not done enough to educate people on autism. Just because he does not express himself like you or I might, does not mean he is unaware, not hurting or mourning.
Empathy and sympathy displayed by so many can never truly be measured; but I know that my perspective on people and their capacity to love and show their love will never be the same. I could never accurately describe the depth of my feelings toward my immediate family; my cousins/wives/kids and my Uncle who enveloped us and guided us through this week. I know they felt that since neither my sister nor I are married, and because our father was not there, they did even more than their usual and it certainly did not go unnoticed or unappreciated. I am probably the most fortunate person you know!
In anticipation of my mom’s funeral I had a long talk with my boys. I had already written my eulogy and did not know if they wanted to speak. They both said they did; I knew they would but did not want there to be any pressure on them. Although very personal, I have had several friends ask me to read to them what the boys and I said, I have decided to share our eulogies in my blog. I know years from now I will want to reread them and so I will do so. They wrote them together and I did not help them. Here goes:
Hi, my name is Bryan Kaufman. I remember when Grandma took me on trips such as Orlando, Baltimore and the Disney Store. My Grandma was there when I was a baby and was here until I was 18. She always loved me and adored me. She would always light up the room. Whenever I saw Grandma she would always hug and kiss me. I will miss her, even though she will always be watching me. I did spend a lot of time with Grandma watching TV and going to the movies with her. I love you Grandma and hope you rest in peace.
I am Judy’s grandson Jason. Where do I begin with such an amazing grandmother like Judy? She was always there for me even in the saddest moments of my life. She took me on trips, we went shopping, and we ate a lot. When I was sick, you can ask my mom this too, I always asked her if Grandma could me make me some of her famous chicken soup, and she always brought me some. My Grandmother was not only a beloved grandmother but a mother, a wife and a friend to all. I remember when I was 4 I had a birthday part at quiet waters park I had super heroes and power rangers the whole 9 yards, and I still remember even though I was so young, how beautiful she was. My grandmother was the sweetest and most beautiful on the planet. My grandparents took me on a trip to Kennedy Space Center, just me and them. The three of us got on a bus and we had nothing to eat so she fed me chocolate, and most of you who know me, imagine me, a 7 year old hooked on chocolate, it didn’t end well. When we got there, they took me to see the rockets and different exhibits, I’m telling you it was a sight to see. Not the rockets but how glad she was to see other people happy. She will always be in my heart. I love you Grandma.
Alzheimer’s is a disease that packs a double whammy. Not only does it steal the identity, memories and dignity of the person afflicted, but the family suffers horribly as well. I have not had a real conversation with my mom for at least 4 years. In 2014 I was in a restaurant with my parents, and our family friend Mike, and my mom pointed to me and asked my dad, who is that? Fortunately this restaurant had a full bar.
But I have to say I am not focusing on that terrible disease today. Today I want to tell you how lucky I am and how lucky those of you who knew my mom were to have her in your life. My sister and I both feel so lucky to have had her. As a mom, she was an incredible role model. She was always so reasonable in her interactions with people. Her word was gospel; if she said she was going to take me somewhere or help with something she did. My mom got to enjoy some of a mom’s greatest moments with me; high school, college and law school graduation. My mom took me wedding dress shopping and layette shopping. When we were shopping for my layette we did not know the sex of the baby. She was giddy picking out clothes. I remember asking her, which was more fun, picking out a wedding dress or layette. She of course said both, and I said at least I did them in the right order! And as mom she got the ultimate; she was in the delivery room with me for both of my boys births.
As a grandmother she was cookoo. She was cookoo for these boys. We lived in NY when the boys were very little and my folks used to drive up from Florida and stay for a week or so at a time. My dad had a big Lincoln back then and the entire trunk would be filled with toys and clothes for the boys. My dad would always remark that he was lucky if he got a tiny carry on bag for his stuff with all the things my mom bought for the boys. Nothing like a Jewish Grandma! My mom would sing songs with Bryan and I remember the first time she changed his diaper she did it backwards and we laughed so hard. Bryan’s autism never ever affected how she felt about him. Maybe it challenged her to love him even more. When he graduated from elementary school and was given a special award for achievement she was over the moon with pride. When Jason came along she was smitten all over again. She loved to go to his JCC preschool and watch him with his little blonde curly hair do the Shabbat prayers in his sweet high voice. Jason recently showed my mom his driving permit and she responded to him, she said “good.” He was thrilled!! My mom was at both boys Bar Mitzvahs. I am grateful for that, as are they.
As a daughter she was completely devoted to her parents and aunts and uncles. She was so responsible and so selfless. Even when they gave her so much emotional grief, we are talking old time crazy jewish people grief, she never, and I mean never wavered. I hear her in my head so much these days when I don’t want to go to her nursing home or when I don’t want to go to my dad’s rehab/hospital. She would never not go and I value the modeling she did for me and go. I too want to set a good example for my children on responsibility and devotion.
As a sister, she adored her big brother Neal and loved his kids and family as if they were her own.
Since my dad could not be here, I can only offer up how she was as a wife by observation. My parents had the kind of marriage that people strive for where the love and respect is constant. They loved each other so much; they had the best time together always laughing and having their private jokes. When I was a teenager I remember them meeting for romantic lunches in Manhattan at a very nice little French restaurant. My mom would get all dressed up. Only as an adult did I realize the significance of these dates, the romance, and the sweetness. Their love continued and my dad was completely devoted to her. I think his heart broke when the time came to put her in a facility; both the loss of his great love and the guilt associated with his inability to care for her anymore.
As a friend, there was no one better. I always joked that Fort Knox had nothing on my mom because if you told her a secret or confided in her in any way she was steadfast. She was a fantastic listener and was very warm and empathetic. She loved observing people and the dynamics of relationships. I also considered her my friend; we had great respect for each other. There was some subliminal understanding of the differences in our challenges as moms and women and my mom was proud of me and I know she respected me as a woman. There is great solace in that feeling.
As a woman, she was beautiful inside and out. My mom loved to cook and bake. Everyone was always excited when she would make dessert! My mom loved to read; she loved to learn. Her favorite thing was to do the Sunday NY Times Magazine Crossword puzzle. She always did it in pencil and was fascinated and sort of enamored by those who did it in ink! My mom was incredibly fit; she went to the gym 6 days a week and was phenomenally disciplined in her diet. She loved to travel to new places and loved to shop in those new places. She always looked fabulous, so stylish and well dressed, never a hair out of place. Even when she said she was wearing something crappy, she looked like a million bucks. I hope people remember her in one of her snazzy outfits smiling or laughing.
I will miss you so much Mom, but I will keep you in my heart and my boys’ hearts forever.
There is so much good in all of this experience. While I am obviously very sad to lose my mom, I feel I can now embrace the good memories pre Alzheimer’s that were stuck in limbo while we faced this damaged version of her. I am extremely luckily that my mom and I talked so much and I knew her well both as a mom and as a woman.