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Alzheimer's, The Long Goodbye: Our First Holiday Season Without Larry



This was our first Thanksgiving without Larry physically here with us.


Everyone started gathering on Monday and by Wednesday, we were all together. In the days following up to everyone being together, I felt a mix of excitement about all being together and uncertainty about what it would be like without Larry here with us, for our sons Henry and Zane to come back to the house after being gone for months, and how I would handle the inevitable unexpected sadness or tears. While I had put away or donated some of Larry’s things, many of his things, including the pile that sat next to his chair with his shoes, glasses, and blanket, remained. I worried how Henry and Zane would feel about his bathroom counter being cleared and his stack of stuff still sitting next to his chair.


Our 17th wedding anniversary was on Saturday so Thanksgiving was an extra special time for us… We intentionally got married Thanksgiving weekend because we had each finally gotten to a place where we were thankful for the failed marriages, heartache, and loss that had led us to each other and a fresh new start. This year, I was intensely feeling his absence, but I knew I also would no longer have the stress of caring for him in the midst of the holiday celebrations with all the fun and chaos that comes with it.


Throughout the week, moments of intense grief would often come unexpectedly, sometimes triggered by a specific event, such as the awkwardness around sitting down to eat Thanksgiving dinner, Larry not being at the head of the table, and wondering who was now going to take that seat.


The weekend before Thanksgiving, I had set the table for eleven people without even thinking about it. When I counted heads, I always started with six, which consisted of me, Larry, and our four boys, and then added up everyone else. The morning of Thanksgiving, Anso came to ask me about the headcount, and I said, like I always did when I counted heads, “We’re six, and then there’s Ari, Erin, Silas, and my parents.” He looked at me slightly confused then walked away. I later realized that we are no longer six, we are now five.


Larry’s nightshirt is still folded on his pillow on his side of the bed. Most nights as I crawl into bed or mornings when I make the bed, I linger for a moment and take in his scent. Over the Thanksgiving weekend, I would find myself returning to the bedroom throughout the day to embrace his shirt or visit his closet where everything smells as if he is still there and possessions are right where he left them. Yet, I also found myself feeling very connected to the rest of the family, and particularly our grandson Silas. In the midst of preparing and roasting fifty pounds of turkey, I was enjoying myself and reminiscing but also recognizing that in the past several holidays, there was lots of overwhelming stress that I didn’t feel this year.


For example, there is nothing Larry loved more than the family being together, but he would sometimes get agitated and not remember why we were together. Larry had always been someone who liked television, but in his later years of Alzheimer’s, he would almost always insist it was on and quite frankly, it was intrusive. On a “good day,” helping Larry get up and get ready for the day, winding down in the evening or getting ready for bed, was not only stressful, but time consuming. In the past, when taking care of Larry, there had been many evenings and mornings when I would hear everyone downstairs laughing, talking, or engaging in some fun activity, as I was changing the dressings on his infected foot, trying to convince him to take a shower, or struggling to get him dressed, all while longing to be with everyone downstairs. This past Thanksgiving, I was in the thick of things making breakfasts, sitting at the table talking and planning for the day ahead, and just relaxing in my pajamas like everyone else… life was easy.


As many parents and grandparents can attest, much of the magic of the holiday occurs because of all the planning and effort that goes into making it special. This year, like every other year, there was a lot of planning and preparation, long days, and sometimes early mornings, but unlike recent years, I simply felt tired, not overwhelmed and depleted. I really noticed the difference between physical tiredness and emotional depletion.


Some of our traditions include playing Monopoly, and in the past, we would have had to do so to “CNN Breaking News” playing in the background. This year, there were only the sounds of laughing, snacking, and engaging in healthy competition. I could sit and be with the kids without feeling the inner conflict that came with seeing him sitting alone across the room, not being able to engage and feeling guilty that I wasn’t over there with him. The dread of the evening and the inevitable fussing about his sleeping pill and getting ready for bed would have been playing in my mind. This year, I caught myself just having fun.


The day after Thanksgiving, we always go out to buy our tree and have dinner. Taking Larry out and about had become progressively more difficult, not just because of Alzheimer's, but also because of the cellulitis in his feet, and his balance issues. As I sat there at dinner in a busy restaurant, I couldn’t help but reflect on how challenging it would have been for Larry to be there.


We were actually at Tepache, a new Mexican restaurant that was formerly Atria's, where Larry and I first met, celebrated his 79th birthday, and had his memorial gathering. As I sat, I remembered all the good that happened there, but was also thinking about how if Larry were with us, I would have been worrying about him and the noise, chaos, and as well helping him decide what to order. While Larry was not a picky eater, there were several things that he would definitely not eat, such as dishes with sauces, but as his Alzheimer’s progressed, he would inevitably order a dish that he would never eat, such as something with sauce, and then be confused as to why they brought it to him.


Larry quit drinking during our third year of marriage and had stayed true to not drinking a single drop until several years ago when he had forgotten that he didn't drink, and would consistently order his “old standby,” Chopin on the rocks with a twist of lemon. When I would remove it, he would just keep ordering more or sneak the drink of someone sitting next to him. During one evening two years before he died, he actually managed to drink three drinks… two of them he took when the person sitting next to him was distracted and one because I didn’t notice the waiter served him one when I was in the restroom. To say that the rest of the evening and that night were a Sh%t Show is an understatement!


While saying goodbye to the kids at the airport, it is typically very bittersweet for me, because I’m proud and thrilled that Henry and Zane are going off to their respective schools and experiencing life as young college students, which neither I nor Larry had the opportunity to do. It also feels like a loss because we no longer have kids at home.


In these last few years with Larry, taking the kids to the airport was downright painful, because sometimes I would recognize by his vacant stare that while he always knew them, he didn’t necessarily understand why we were there or where they were going. Even if he did, I would know in my heart that the next time the boys would see him, his inevitable deterioration would be painfully obvious to them after being away for a while. This year after arriving home from the airport, I was struck by the thought that with everyone coming together and the hustle and bustle of the past week, home had expanded, and now that everyone was gone, it felt like the house had constricted… The feeling of emptiness was profound.


The past few holiday seasons, I would feel lonely coming home because it would just be Larry and I, and I would feel that lack of connection all the more intensely in contrast to the feeling of connection that came with everyone being home. This year I didn’t feel lonely…everything felt empty.


In that moment and the hours immediately after, an overwhelming sense of grief and loss for “My Larry,” the years that we lost, and the things that we didn’t do because of Alzheimer's, combined with the stark realization that life was never going to be the same…


The boys are grown… Sunday they each went back to something to look forward to; Scott, Ari, and Silas were going to decorate their own tree (I was invited, but choose to stay home and process my grief), Anso was going to watch football with friends and then cap off the holiday weekend going to a concert with his girlfriend, and Henry and Zane were returning to their schools with evening plans to reconnect with their friends.


While I was struggling with feelings of vacancy, it made me think of my grandmother. My grandparents' house was always “home” to me, they lived there as I was growing up, and it had been a safe space for me my whole life. My family celebrated almost every holiday and many Sunday dinners there much like our family now “comes home” here. When I was a young adult, my grandfather fell ill to Lou Gehrig’s disease, and my grandmother cared for him for years. When he passed, she lived there alone. I kept thinking about how Grandma stayed and kept the “home fires burning” for us to return to, but we too, after the holiday weekend, went back to our lives, while she remained.


For the first time, I really thought about that and how lonely that must have been for her. Unlike grandma, I have a very full life outside of home, with a successful business, many friends, travel, and opportunities to engage with the community. For grandma, I’m sure that the next thing she had to look forward to was the next time we’d be together, whether that was Scott and I coming to bake our traditional Christmas cookies, a Sunday dinner, or more Christmas festivities. In contrast, I knew I would be returning to my office on Monday, taking my grandson Silas to a new gymnastics class on Thursday, and leaving town on Friday for Henry's family weekend in Philly… As an aside, I have always driven to Philly and this is the first time I’m taking the train, so I am a little giddy with excitement about that!


Even though I had all these things to look forward to, that sense of aloneness and emptiness still felt overwhelming.


On the Monday before Thanksgiving, shortly before I left to pick up Zane from the airport, I got a phone call from someone I had never met who had been a friend of Larry’s for over thirty years. We had talked briefly a couple of years ago, but had not spoken since. Unbeknownst to me, in addition to Larry being friends with Tim and his wife Pat, they had served as Larry’s confidant throughout many of the best and worst times of Larry’s adult life.


Strangely enough, the conversation that ensued would be the kickoff of my gratitude throughout the Thanksgiving weekend. Tim confided in me that Larry had told him and his wife that meeting me was a Divine Intervention for him. With striking detail, he told me that Larry had shared the story of how we met for the first time at Atria’s restaurant and that only moments after meeting me, he felt confident that we were meant to be together. He told Tim that the following evening when he and I had dinner again, he didn’t know how yet, but he knew we would be together. Then the following month, when I arrived in Florida to join Larry in Naples, I was wearing a long dress and Larry had the car roof down, and at one point the wind blew my dress up, and I grabbed my dress and laughed. Larry shared with Tim that when he looked over at me laughing, that was the moment he fell in love…we can say, the rest is history.


I was stunned by the details Tim shared with me, and it elicited an intense feeling of gratitude, love, and all the magic that unfolded for years to come.


That conversation set the tone as I left the office to pick Zane up from the airport and kick off Thanksgiving week. At the end of the week as I returned home from taking Zane back to the airport, I replayed that same conversation in my mind, but this time with an intense and overwhelming feeling of loss and grief.


As I’ve said many times, when you’re losing someone to Alzheimer’s, you are losing them while being in their very presence.


Just today, Frank, a tradesman I’ve known for years, was here doing some repairs while Olivia and I were working on this blog. Each time I see him, he asks how the boys and I are doing… He suffered a devastating loss nine years ago and works today to support others with their losses. His parting words to me were, “The pain of the loss never goes away, it just changes.”


As I sit here this evening planning a Christmas tradition in Larry’s honor, I am profoundly grateful for the years, home, experiences, and love we shared between us and the kids while at the same time, feeling a profound sense of grief and loss.


I will say, the gratitude is growing as time goes on…the sense of loss is changing…I believe Frank is right, I don’t think it will ever go away, but it is changing.


In Loving Memory of Larry DeMonaco… The beautiful man you were and the freed spirit you are now.


If you would like to make a donation to the Alzheimer’s Foundation, an organization devoted to research, treatment, and finding a cure for this devastating disease, please visit https://alzfdn.org/.


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