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Alzheimer’s, The Long Goodbye… Coach Monique’s Story: The Little Things

One of the biggest things I’ve learned is that suffering is the price of love… The amount you suffer is reflective of your love for someone.


When Larry was still physically present, in the words of our son Anso, “He is who he is, but he was not who he had been.” You suffer as you lose your connection with them, as they deteriorate and lose themselves and their independence, and then when they ultimately pass, you mourn their physical presence and the dream that it could ever be different.


It has been more than two months since Larry’s passing and all four of our sons, one of three of our daughters, our daughter-in-law, and our beloved grandson Silas were here this past weekend celebrating Larry’s life well-lived and what would have been his 80th birthday.


I am also beginning to allow myself to realize the full impact being his primary caregiver over the last eight years has had on me. There are so many little things that are easier now, and so many little things I miss deeply about Larry and our life together.


While I mourned the loss of him at each of the five stages of loss, it wasn’t until these last two months when I started thinking about our life as a whole rather than the five stages, that the grief really crystallized for me.


Early on I only handled some of the details or tasks for Larry, but eventually I was making every decision and managing every detail of his life.


One significant but gradual change through the eight years I noticed was my morning routine. Most of my life I've been someone who can get up and out the door in thirty minutes, but the last few years of Larry’s life, the mornings would be a rush; I often struggled to get out of the house within two and a half hours. Larry lingered in the morning and I was getting him ready for the day, doing everything from picking out what clothes to wear to sitting on the bed with him trying to clarify his day, washing and dressing his wounds, and trying to comfort him through repetitive questions and concerns, and just managing the daily schedule.


I was living my life around the time frames and routines of doctors appointments, pharmacy pickups, and the schedules of Larry’s other caretakers… Life was so hectic but for me it was just another day. Now that I have the perspective of time, I’m realizing just how much time and planning went into being his primary caregiver, how so many of the mundane daily tasks felt seemingly impossible, and how spontaneous activities I enjoyed before came to a temporary halt.


Before, giving Larry his sleeping pill two hours before bedtime and reminding him every few minutes that he had already taken it, then getting him upstairs before they kicked in, was always an uphill battle.


Now, I just walk upstairs and go to bed when I’m tired… It just feels strange. Within several days of being alone, it seemed so odd to just get up and go to bed when I was tired and even have the freedom to read in the evening. While this might seem like no big deal to you, having the freedom to do these things was actually an adjustment.


Having the freedom for spontaneous dinners with my oldest son and his family, walking out of the house at 3pm just to share a glass of wine with friends in the neighborhood, realizing I had a couple of free hours Saturday afternoon and running to the mall to make a few returns, at times felt strange or foreign and I felt like I should have obligations or should be doing other things instead.


Not only could I not do those things because Larry needed me at home, but, I actually preferred to stay home simply because I knew Larry was happiest when I was home with him.


Nature abhors a vacuum… Now that I find myself with more free time, I have chosen to be intentional about how I spend that time. Instead of rushing around for two and a half hours trying to get Larry started in his day, I now fill morning hours with quiet contemplation as I sit in the space of our life together, reminiscing about the good times, spending time sitting in the loss, and contemplating the changes that are going on in my life. A couple of days a week I work out and I try to get a few things done around the house in the mornings in order to free up more time in the evening. I’ve been reading more, spending more time with family and friends, and doing things that I had previously stopped doing. For example, I’ve been accepting social invitations, taking time to stop and walk at the park on the way home from work, spontaneously running errands, and even taking the scenic route home at the end of the day. At times it just feels odd to do these things.


In the past couple months, I have also recognized the toll caring for Larry was taking on my physical health. My blood pressure readings went from being between stage one and two of hypertension back to normal, healthy levels.


My quality of sleep has increased, and while many nights I struggle to fall asleep because I am thinking about him and missing him, once I am asleep I typically stay asleep and wake up in the morning feeling refreshed.


During the last few years of caring for Larry, I would usually be up multiple times a night, if not directly helping him, then waking up and getting out of bed to curb my concerns about him falling or getting confused.


In addition to my blood pressure and restorative sleep, my diet and nutrition has improved overall. In what seemed like nearly constant busyness or rush, I would often grab snack food and almost never make time for breakfast or lunch. I was often eating late which resulted in me feeling sluggish throughout the day. I was also eating and wasn’t even fully aware of it because I was so consumed with getting through the day. Now that life has slowed down, I’m more aware and intentional about eating.


Bittersweet moments


Throughout our marriage, Larry always loved to buy and bring me my favorite foods and snacks. This was a sweet and loving gesture that went on for years and was something that he did a couple of times a month. On any random day, he would bring me a small bag of Swedish fish or present a few of my favorite chocolate gob cookies, which reminded me of my grandmother, on a plate with a glass of milk while we were watching a movie. This was always a sweet, loving gesture every once in a while, but as time went on and his Alzheimer’s progressed, he wanted to go to the store daily if not multiple times a day to pick up treats for me.


What had once been a small bag of Swedish fish turned into three pounds of Swedish fish.


Rather than causing conflict for him with the caregivers that took him out on his daily excursions, because it gave him so much pleasure, I didn’t try to curtail him from dragging home sweets and junk food nearly every day. While I would like to say I resisted them 100% of the time, that would be a bold-faced lie… Especially on the nights which were already very stressful, when he would present me with sweets, snacks, Coca-Cola, and sugary lemonade, I couldn’t resist. Without the temptation of these sweets and treats every night, I’ve been eating healthier and resisting late night cravings.


Up until Larry passed away, we always said that Fridays were the very best day of the week because our grandson Silas would be at our house and at the end of the day we would have family dinner. While that has continued, 5:30pm on Fridays is a particularly difficult time because those are the heartbreaking hours around his sudden death.


There is also something about the time around 3:00pm on the weekends that feels lonely… In a world and time when many people are doing things as couples, I now allow myself to feel the absence of that part of my life the most. To be honest, engaging in couple activities had pretty much stopped years ago, just having someone here at the house gave the time structure.


There are so many little things that I miss about Larry and our life. For example, the absence of the smell of his morning coffee, his weekly pill container that lived on the kitchen table for years, and seeing a myriad of colorful tic-tacs all around the house. Seeing his recliner that was always facing the TV now facing the room sometimes makes me jolt or have a physical response when I walk in the house. I still turn down the blankets on his side of the bed and I absentmindedly bought six pounds of cherries because they were his favorite.


Recently, a former neighbor and I were having a conversation about loss. She has, since the pandemic, lost both her mother and father. She told me that she came to the realization that life goes on… While I still struggle with that, I know the things that Larry wanted for me and I have come to the realization that I am in the last quarter of my own life. I ask myself what I want to make that mean as I continue the journey of my life.

Larry’s birthday was July 7th… We celebrated Larry’s life that weekend with five of the seven kids being here together… We spent time laughing, reminiscing, and yes, sometimes crying. We spent time together as the family as a whole, but also the siblings continued the tradition of having their own time together. I gifted everyone with his ashes and each person chose mementos that mean most to them and their families, whether it was a favorite ball cap, a tie for a grandson, a watch for one of the boys, a cardigan, or Larry’s beloved pocket knife… It's important that each of us has a sentimental token to feel closer to him.


As of his birthday, which is over 2 months since his passing, everything is exactly where he left it… The laundry basket with his fresh laundry is still in his closet, his toiletries are on his sink, his shoes and hat are next to his chair, and even the towel he used the hour before he died is resting on the bathtub.


This past weekend seems to be creating a shift within me… What I mean by that is, I am starting to delineate experiences, events, and how I’m processing things as “before” or “after’ this weekend.


As an extension of that, I am coming to terms with knowing that as my life changes, I will most likely sell the house, the kids are grown and living on their own, the time is quickly approaching where many of his things will either have to be lovingly distributed or donated to people to hopefully help them in their lives in some way. Whether it’s clothes and shoes, tools, or prescription glasses, it’s likely that only a small percentage of his things will remain in the years to come.


However, in the spirit of the Native American Proverb, you are never really gone until your name is spoken for the last time.


Larry will live on for generations.


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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