Alzheimer’s is indeed a long goodbye, as you lose that person in stages, in both subtle and significant ways, that sometimes you only clearly recognize in hindsight.
Anyone who knows us would tell you that Larry and I had a fairytale marriage, with both of us overcoming profound heartbreak and challenges. It was a very rough road that brought us together.
For Larry, it was the loss of his stepson by suicide in his second marriage and all the heartbreak that comes with the loss of a child and the end of a marriage. For me, the devastating loss of a twenty year relationship that lasted thirteen years as a marriage and ended in emotional abuse, broken trust, uncertainty, and the devastation of a family. I don’t think either one of us was expecting to meet what one might refer to as a soulmate and to have our best years ahead of us, but that’s exactly what happened.
From the very beginning, our relationship was built on trust, transparency, and an ultimate commitment to our marriage and family. Larry and I both felt that marriage was the backbone of a healthy family and early on we made intentional decisions and plans to ensure our marriage never got lost in the “shuffle” of raising a family.
In the first eight years of our marriage, that’s exactly how it played out. That’s not to say it was always easy… Sometimes it was unbelievably difficult and heartbreakingly painful. Between the two of us, we had seven children in total, ranging from ages four to forty, and struggled with many of the issues families face every day. Drug and alcohol issues, learning disabilities and educational challenges, life threatening health issues, and the stresses and pressures that come with building a business from the ground floor while raising a family and all the things that come with life. Halfway into our marriage eight years ago, everything began to change in a profound way and our lives would never be the same again. Loss would define much of our last eight years together.
Alzheimer's, maybe most importantly, is a “family disease” because it is oftentimes the family that suffers the most. In our case, Larry vacillated between seemingly being blissfully unaware to recognizing that he had Alzheimer’s but feeling safe and comfortable that he would always be cared for and his needs would be met.
On the very last day of school before Henry and Zane graduated, we both went to the bus stop to commemorate the day…while we were sitting in the sun waiting, Larry had asked me the same question three times in a row. I asked him if he was aware that he asked me the same question three times and that he had Alzheimer’s. He told me yes, he knew, but he was okay with it because he knew I would always take care of him and have his best interests at heart. In the moment, I experienced two distinct feelings…the honor he was bestowing on me to care for him during his most vulnerable days ahead and also the incredible emotional responsibility that it required.
Larry only discussed having Alzheimer’s three times. The first time we discussed it was shortly after his diagnosis… Larry did not want to talk about it and would dismiss it. The second time was at the bus stop that day. The third time was Valentine’s day of 2021 when he bought me three cards. The first card was a beautiful birthday card (my birthday is in October), the second was also a birthday card, and the third was the exact same card with the same message.
I told him today was special because, “I will always remember Valentine's Day of 2021… I got three beautiful birthday cards from you.“ Larry asked, “Why did I do that?” in a deadpan tone, I said, “Because you have Alzheimer’s,” and the two of us burst out in laughter with tears streaming down our faces. This may seem odd, but it continues to be a cherished memory because we were “in the moment”, each emotionally vulnerable, and having one of our last ever “belly laughs.”
We didn't talk about Alzheimer’s ever again, but about six months before his death, we decided we would each be cremated. We had recently lost a friend whose husband had his ashes used in a beautiful glass sculpture, and while we appreciated the creativity and magic, we decided against that because we were afraid that after a generation or two, no one would know what that sculpture was and we might find ourselves in a yard sale. I smiled because that kind of silly talk was one of the hallmarks of our earlier years. Ultimately, Larry was able to share, he didn’t want a Catholic mass, he did want a blessing and a more traditional funeral. Together we decided, our ashes would go to the kids and wherever we landed, at least we’d be together.
Everyone’s Alzheimer’s story is different. Most stories have a common theme of different stages of slow or rapid decline, the terrible emotional toll it takes on families, and experiences that are unique to them. For example, some Alzheimer’s patients become very combative, struggle with paralyzing anxiety, or in the end simply don’t know their most cherished loved ones. Luckily for us, Larry never forgot his cherished family or his beloved home. He was always aware of who we were and where he was, and for Larry, there was no place better than home.
Our journey with Alzheimer’s started halfway through our marriage. The first half of our marriage was at times magical, the second half in the throes of Alzheimer’s was at times heartbreaking. I’ve decided to share my personal journey, experiences, and details; some representing the most difficult of my life, others light-hearted and funny, and everything in between, in the hopes of helping others, whether they are personally experiencing it with a loved one or to help those who thankfully aren’t impacted, but to hopefully have compassion for those who are.
The first stage, the beginning of the end stage.
In the first stage, I noticed a change in Larry a few months before he was diagnosed. It was very important to us that we were intentional about spending time alone and focusing on each other. We were pretty firm about bedtime and our evenings together. During the day when the kids were in school, we made a habit of spending time together whether it was going to lunch or running errands. When the kids were away, we would go to events, dinner, or just stay at home, have a bottle of wine, and talk. We always loved sitting on the deck together and did that as often as we could. Each year we took a trip for two weeks just the two of us and loved having weekend getaways.
I began to notice a subtle shift at first when Larry would make excuses to why he couldn’t go away on trips. He would often be “busy” during the day when we would ordinarily be spending time together. He began resisting going out, whether it be for dinner, events, or any kind of time alone when the kids were away. Yet he would be willing to go out with friends to socialize, but he was resistant to time alone with just us two. He wanted to stay in, watch tv, and mostly just get takeout.
For a long time this felt very personal and when I would try to talk to him about it, he didn’t have an explanation and didn’t seem to know what I was talking about. It remained a mystery to me and I asked myself if I had done something wrong or if getting married and raising a young family proved to be too much for him. This change remained a mystery to me until much later after the diagnosis. It was only when I started witnessing other changes in his personality that I began to make the connection between Alzheimer’s and the first stage of loss. That was the beginning of the loss of our marriage.
The second stage, the loss of intellect stage.
Larry had a long, illustrious career with GE where he traveled the world, developed new programs, and played a pivotal role in opening GE internationally. He began creating workforces and developing leadership programs that tapped into countries and cultures around the world. Larry had always been well-versed in business, culture, politics, and human behavior. He was the first man in my life who was not just my intellectual equal, but surpassed me in many ways. Early on, I learned so much about the world and all these topics through him. Later on, as my business grew, we discussed everything from program development to marketing and he even taught me the GE Executive Assessment tool and occasionally worked alongside me with clients.
I began to notice about two years after the diagnosis that Larry was having difficulty processing and connecting new ideas and information. What had once been lively debates and discussions had become circular and sometimes confusing conversations. Because it wasn’t always true, I had a certain level of denial, until one pivotal conversation which turned out to be our last real intellectual discussion.
I vividly remember sitting on our deck on a beautiful day. What started as a lively conversation about international business deteriorated to a sad realization that this intellectual part of our lives was coming to a close. Larry started out the conversation as his bright, energetic self, and within moments he began repeating himself and branching off into unrelated topics, and soon his words became illogical with zero connection to the topic. I felt myself begin to get really upset and tried to fight back the tears. He looked at me as I was weeping and it didn’t seem to register as he got up and walked away.
The third stage, the loss of intimacy stage.
I always think of intimacy as that “safe space” where anything can be discussed; you can open up about your thoughts and that person is there to emotionally support you even if they don’t necessarily agree with you. Leading up until this time, Larry and I were always very comfortable having uncomfortable conversations about how we felt, internal conflict, the individual pressures that we experienced, and even our own personal traumas and painful experiences. Not only were we comfortable with it, we actually excelled at it.
During this stage, Larry became increasingly uncomfortable with any kind of real or perceived negative emotions I might have. In the emotional space, nearly anything I shared or exposed sent him into immediate defensiveness. Whether I was talking about a challenge with technology, feeling emotionally down or depleted due to circumstances, or even the struggle of trying to adjust to bifocals inevitably resulted in conflict.
During this time, my eye doctor recommended that I get bifocals and he admitted that given my history of seizures, adjusting to bifocals would probably be a challenge, but that I could probably have success after a period of adjustment over days or weeks. Sure enough, I got my bifocals and my brain went crazy. I felt like I wanted to jump out of my skin, I felt unsteady on my feet, and I felt very irritable. I literally sat the family down, explained what was happening, let everyone know it wasn’t personal, and asked for some patience and grace, assuring everyone I would do the best I could to be calm and relaxed. The kids listened, looked at me and said okay, and walked off. Larry immediately got anxious and within a few minutes became argumentative. In the days ahead as I did experience frustration or irritability or struggle with my balance, he would be the opposite of supportive, and became rather defensive and irritable with me. After a couple of days, I decided bifocals just weren’t worth it.
I know that Larry never wanted anything to be wrong with me physically, but when I happened to be physically sick, or the few times I had a significant medical issue such as surgery or dental work, no one was more attentive, caring, or did more for me than Larry. It almost seemed as if he was in “his element”...fussing over me, offering to rub my feet, getting and making all my favorite foods. At the opposite end of the spectrum, his ability to be at all emotionally supportive was gone. This was a particularly difficult stage of loss for me because we all need emotional support in our lives, and being a primary caretaker for an Alzheimer's patient and all that goes with it created what felt like an emotionally devastating issue.
The final moment of recognition that our emotional connection was gone happened one lonely morning. The world was struggling with the pandemic, I was facing the challenge of our twins leaving the nest after thirty seven years of having children at home, while growing a business, and taking on new responsibilities in the family and home nearly every day. While dealing with my own growing health issues, running on little sleep, and just feeling depleted, I made a statement about something I would never do. I said, “I just feel like just going to the garage and gassing myself.” Larry's response…he simply patted me on the leg and said, “I support whatever you decide” and walked into the bathroom. At that moment, I knew I was alone.
Although I had felt a sense of loneliness struggling with the first three stages, and the nearly daily struggles of taking care of him through Alzheimer’s, in that moment, I experienced profound loneliness that unfortunately became normalized for the rest of his life.
The fourth stage, the loss of the team stage.
Even before we got married, Larry and I talked at length about raising our family and running our household as a united front and a loving team. Larry was super cognizant and compassionate about the fact that until I met him, I had always been either a single parent or a married parent with little or no support in raising the children. Nearly all family, child, and home domains had been mine alone until we met. For me, having a partner who was a present, hands on, handled details around the house great and small, and contributed to the family and home life, was a beautiful thing. Early in our marriage, we discussed how we were both in agreement on things such as never leaving dirty dishes in the sink, taking out the trash and making sure the dishwasher was loaded and unloaded… It was the simple things.
During this stage, while Larry might have had an intent to do something such as unload the dishwasher, he would simply wander away. He would do things like leave the stove on, leave the vacuum in the middle of the floor, dump clean laundry on the floor, and leave a mess all over the house. These were things that would simply have been unacceptable to Larry before Alzheimer's.
Larry and I had always enjoyed family dinners and entertaining family and friends at the house. One of the last times we had friends over for dinner, things got hectic about an hour before they arrived. Larry and I had agreed he would set the table. When he disappeared, I looked outside and saw him picking leaves off a bush outside our kitchen window. He was doing it so casually and with such childlike wonder, I almost couldn’t believe what was happening. When I opened the door to ask him why he was picking leaves off the shrub rather than setting the table, he immediately shouted some expletives and talked to me like I was stupid for not knowing that the leaves needed to be plucked. While that was a single event, there were many others that were actually more painful to confront. Garbage would be overflowing onto the floor, Larry simply wouldn’t notice, and if asked, would have disrespectful responses.
The crowning moment was one day, I came home from the office to find a sink full of dirty dishes. This was something that Larry would never have approved of and would have been very outspoken in his despise. That day, he just sat in front of the tv.
Out of curiosity, I decided not to mention the dishes and just let them sit there to see how long it would take before he noticed. After asking him about the dishes three days later, his response was, “I didn't see them,” so I simply washed them myself. I recognized at that moment that the team was gone and it was just me. As time went on, he not only couldn’t acknowledge that things needed done that had previously been his domain, but he often would not even recognize service people who were coming in to take care of things that he would have ordinarily done himself. He would sit there not even acknowledging their presence.
It was during his final two years that I had to face the fact that the vibrant, bigger-than-life, loving and full of energy man I had married had ceased to exist and this fragile, vulnerable, dependent individual took his place. It was extremely difficult facing the truth that we were no longer husband and wife or even Larry and Monique… I had become his caretaker and he had become solely dependent on me in his care and well-being. From the little things like what he would wear, to the big things like what kind of medical care and choices would be made, became my sole responsibility.
When many of us think about Alzheimer’s we think about the big things like the stages of loss but the little things can be just as daunting. For example, do you choose to allow a procedure that would improve quality of life or minimize pain but the general anesthetic necessary would advance Alzheimer's?
Larry had been a lifelong competitive marksman… When and how do you take away the guns?
When do you make the decision that a man who had an expensive wardrobe, took great pride in how he dressed, and was known for his magnificent and expensive tie collection now had to be dressed almost exclusively with drawstring pants and zip up hoodies?
This is the painful journey of caring for someone with Alzheimer’s.
At some point early on, as I became more in tune to Larry’s Alzheimer’s, I began to recognize that it was all in the eyes. I could look at him across the room or in a crowd and tell by his eyes whether he was there in the present or “no one was home.” In the past month since Larry passed, I've gone through hundreds of pictures, looked at his eyes, and I can tell you exactly when he was there and when he was not. In the early days, his eyes were bright, his face was open and alive, and by the end, his eyes had dimmed and his face was closed.
The final stage, the end.
At the final stage, Larry had been hospitalized for his chronic cellulitis infections. While we were there, it was discovered that he had likely suffered a heart attack and had subsequent heart damage. It was decided that a heart catheterization and stents were necessary. I was fortunate enough to go via ambulance with Larry to a heart catheter lab at a bigger hospital. Everything went better than could be expected and he wasn’t even required to spend a night in that unit but was transported back to our neighborhood hospital for continued care of the cellulitis.
Everything seemed to be trending in the right direction and Larry was discharged in the hospital three days later on Friday, April 28th. Of course he was anxious to go home and I was relieved that he was well enough to come home, but apprehensive about what the near future was going to bring. Because of Larry’s chronic cellulitis, he was going to have to have the top half of his foot and toes amputated in about a month's time, and his Alzheimer’s was deteriorating at a faster rate.
Less than two hours before he died, Larry returned home, showered and put on his “cozy wear”. Our two oldest sons, Scott and Anso, and grandson Silas came to the house to hang out with us. We were happy to be together and looking forward to a nice evening. I had gone upstairs to put on my own pajamas and was literally thinking, “this was the very best day”... Larry is home, the boys are here, and we were going to all have dinner and spend the evening together. Within seconds, Scott was screaming for me to come down and the house was in chaos. In a whirlwind when 911 was called and CPR was administered, Larry slipped away.
It was a shock… He had only been home for ninety minutes and this was completely unexpected. As I reflect back, he and I had just snuggled, Scott and Anso were talking and laughing, and he was watching Silas play at the coffee table. He passed the final stage on his own terms.
While everyone’s experiences are unique to them, one thing remains the same; Alzheimer’s is an ugly disease that guts the victim and devastates the family. While we all had been preparing for this moment, none of us were truly prepared for our loss.
