Today, on August 28th, as I sit out on the deck, I am inspired to write this blog as it marks the fourth month of Larry’s passing. While many things have remained the same- I've made no decisions about selling the house and moving, the kids and I are carrying on with plans to keep all the family traditions the same, and Larry’s things remain exactly as he left them- many things have changed... the biggest being where I am in my grieving process.
Because of my own experience in losing Larry, the research that I’ve done, and the conversations and insights I’ve had with others who are in the process of grieving, I have a much better understanding and can define it in a way that resonates with many people.
During the first stage on the Path of Grief, when you are reminded of the person, grief comes from a place of loss, the wish that you had more time, or of a feeling that something is missing. For some people, this stage may last months, years, or even the rest of your life. For example, maybe the idea of packing up any of their loved ones' things is simply unthinkable.
As you move further down the Path of Grief, when you think of the person, you mostly think of them from a place of gratitude for who they were and the life you had together. That doesn't mean you won't miss them or won’t have some challenging hours or even days, but in general, you feel more comfortable and at peace with their death and may even be fully embracing moving onto the next chapter in your own life.
The grieving process is not a black and white issue, so throughout it there are many shades of gray.
When you really love someone and have a strong bond with them, love doesn’t go away. You will always love them and they will hold a special place in your heart, but eventually you are able to embrace that life is for the living and you are ready to move forward in your own life.
For many, the grieving process after losing a spouse with Alzheimer’s or dementia is the same as any other grieving process, but how you move through it can be dramatically different, and that has certainly been true for me.
For example, when someone suffers the loss of their spouse very suddenly, such as a tragic accident, their grieving process can look very different than someone who was aware that their loved one would pass because of something such as cancer and an expectation of their death had been set. Many of those times, people will talk about preparing for the inevitable, even though they report they weren’t actually ready when their loved one died.
When you lose someone with Alzheimer’s, by the time they inevitably physically pass, you’ve already experienced the loss of them in so many ways and the grieving process may have already gone on for years. For me, my son, Anso, said it best, “He was who he was, but he wasn’t who he had been.” Larry had not been the man I married for a long time.
My own experience is that for the last eight years of Larry’s life, I lost him in very specific stages.
The first stage of loss was the personal connection. We had always made it a priority to spend quality time together, whether it was sitting on the deck, going to dinner, or having a bottle of wine and talking. I began noticing a subtle but powerful shift when Larry started resisting going out or spending time with just the two of us. When I tried to ask him about it, he didn’t have an explanation. At the time his disinterest felt very personal, but this was before he was diagnosed.
The second stage was the loss of intellectual connection. Up until this point, Larry and I each enjoyed having discussions and even debates from opposing perspectives on subjects ranging from politics to religion, culture, and world events. Because of his career at GE and my own coaching business experience, we would discuss how even though we had vastly different experiences that shaped our ideas and expertise, our perspectives about human emotion and behaviors were often the same. 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.
The third stage was the loss of intimacy. 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. During this stage, Larry became increasingly uncomfortable with any kind of real or perceived negative emotions I might have. This stage was particularly lonely for me because although I wasn’t physically alone, I often felt lonely in his presence because I grieved the loss of his ability to really connect. One of the most painful reminders of this was his nearly incessant repeating of, “I love you Mrs. Bubby” but it often felt like living with a parrot who just repeated a line but couldn’t connect to the message. Yes, there is a limit to how much you can hear the words “I love you” when they are repeated every couple of minutes for hours at a time… that in and of itself is very painful.
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 away... At that moment, I knew I was alone.
The fourth stage was the loss of us as a team. Even before we were married, Larry and I set the intention to always work together as a team. We agreed on many things, like not leaving dishes in the sink, not leaving the house disorganized or messy, and the importance of general home maintenance. In this stage, Larry had stopped noticing when dishes stacked up in the sink, when there was laundry on the floor, and when the trash needed to be taken out. Even having peeling paint on the house, he didn’t seem to notice and certainly didn’t care. Once he reached the fourth stage, I knew that our time as a team had come to an end.
The fifth and final stage was when he physically passed away. The thing with Alzheimer’s is that it’s a one way street to decline and oftentimes that decline can last years. There can be a lot of uncertainty and it can feel overwhelming because of that uncertainty. For Larry, the decline was eight years, and I have talked to people whose journey was as long as twenty years because the person’s physical health, aside from the dementia, was excellent. They may have perfect lab results for example, but can’t remember how to turn on the tv.
Although everyone grieves differently, speaking with other people who are grieving can bring comfort and the feeling that you aren’t alone.
My Aunt Sandy, whose husband had recently died (my Uncle Gene) directed me to a couple of resources designed to support those who have lost their spouse within days of Larry’s passing. One of those resources was the Facebook page, Surviving the Loss of a Spouse, Soulmate. In the Facebook group, there are many widows and widowers who have marked the five, ten, and even twenty year anniversaries of the death of their husband or wife, who are still firmly in the beginning stages of their grief. The very idea of going through their loved one’s things is still unthinkable… stories of toothbrushes still on the bathroom sink, clothes still hanging in the closet, and the book they were reading when they died still next to their lounge chair are not uncommon.
Speaking with other people, as well as reading other people’s stories on the Facebook page, has given me a better understanding of the grieving process. I haven’t utilized the group to post my own questions and I haven’t felt personally supported by it, but it has given me unique insight of the shared experience, and has helped me put the grieving process in perspective. The grieving process is a journey and everyones’ journey is very unique to them.
For some, especially those who had strong healthy relationships, they are much more open to dating or even marrying again because they know what it's like to be happily married and want to have that experience again. It seems like those who have been unhappily married or find out disturbing things (affairs, children born to other women during their marriage, that their spouse was gay, or even some have discovered severely inappropriate content on their computer) after their spouse has died, are often fearful of ever being in a relationship again. Again, everyone’s experiences and circumstances are unique to them, but the process is nearly universal.
While this blog has focused on the loss of a spouse, many family members of Alzheimer's patients report similar experiences they've had with the journey or are having whether it's with a parent, a sibling, or sometimes even their own child. I recently spoke with a 77 year old mother whose son who is in his 50s is suffering from early-onset Alzheimer’s and I can honestly say, there have to be very few things worse in life.
Within hours of Larry’s death, I got a phone call from our beloved family doctor. While he admitted that these times were the particularly difficult times of being a family doctor, he wanted me to know that although I probably couldn’t “hear” him, Larry's passing was for the best, not only for him, but for me. With compassion in his voice, he assured me that I had always made the choices that were best for Larry and had done everything I could for him. I now need to make myself a priority moving forward. He was “right”.
I am now experiencing my physical health improving, coming to the realization of just how much stress I had in my life, and noticing that things that would have seemed overwhelming in the moment, are just “no big deal” now. For example, I recently smelled something terrible in the kitchen and I discovered a rotten potato that had contaminated the entire drawer. Despite it being ten o'clock at night, I pulled the drawer out, carried it to the deck and removed the rotten nasty potatoes, bleached the drawer, and returned it to its rightful spot. This just wasn’t a big deal, however had the same potato incident occurred six months ago at ten o'clock at night, it would have felt like “just another thing” that would have undoubtedly resulted in feelings of overwhelm, frustration, or even just anger brought on by my physical exhaustion and emotional depletion.
A month ago, I set out to run a couple of errands. A few errands turned into thirteen errands and took much longer than I had anticipated. Somewhere around errand number eleven, I had the realization that not only was I not stressed, I was enjoying the day while I picked up prescriptions, dropped off shoes to be repaired, and swung by the beer distributor to pick up beer for an upcoming small gathering with friends. I came home to peace and quiet, had a cold drink, changed my clothes, and just in a very relaxed way, started organizing and putting things away. I felt light, content, and even happy. A half an hour later, I was sitting on the deck when a song came on… I cried so loudly and for so long that I moved into the house because I didn't want the neighbors to hear me. I more recently heard that song while sitting on the deck and it made me fondly think of Larry with no tears.
My moving down the Path of Grief has been conflicting at times. For instance, packing up and donating Larry’s things has proven to be complex. A couple of weeks ago, I felt ready to go through his things. I walked into his closet, looked around, and said to myself, “It's time…there are men in need of many of these things.” Larry and I always valued the idea of helping others, and donating things like suits and dress shoes that could be used by others who couldn’t afford them, winter clothes that would be useful to those in need, and nearly brand new athletic wear and shoes that young men might be able to use seemed like the right choice.
I keep a box of heavy duty contractor garbage bags to use for when I donate things. My thinking is that it's waterproof and strong so it's probably the best way to keep things nice and organized. When I decided to go through his things, I got out the box, but when I went back into his closet, it just felt wrong to put his things in trash bags so I brought some boxes up from the basement, but that didn’t seem “right” either. I decided I would buy “nice” heavy duty boxes to put everything in. A couple of days later, I stopped by the UHaul store and bought $40 worth of “nice boxes.” Then the boxes sat in the laundry room until my son, Scott, asked if he could carry them upstairs for me. Then I had the idea I should run to Target to buy “nice” oversized plastic containers to place everything in to donate. Then it hit me, I wasn’t 100% ready.
Just last week, I felt 100% ready, but by then, our son, Zane, was home from college for a week. I brought it up to him that I was going to pack up Dad’s things and he shared that he thought January would be a better time. His thinking was that the void of his Dad being gone would make it even sadder to come home for Thanksgiving and Christmas holidays if the spaces that once held Dad’s things were empty. So while I do really feel ready, I am wrestling with what's best for me and what's best for our sons. Larry and I were almost always in agreement that we would do whatever was best for the kids so as of right now, I’ve decided to keep everything as is for them even though I feel letting it go is what's best for me right now.
Another example of how the grieving process is complex is that now when I think about Larry’s passing, the focus is on all the things we didn’t do. Even though he was physically here, fun experiences like traveling, going to concerts, and spending time with friends, are things that we couldn't do because he had zero interest or it was just too complicated. As I had mentioned earlier, my physical health has certainly improved, but with that, has made other things very obvious. We realized the year I turned fifty was also the year that the realization that life was changing forever happened.
Today at fifty-eight, I feel better than I did at fifty-two for example. I am physically much stronger than I’ve been for years… I’m rested in a way that I had forgotten even existed. The contrast in how I feel now has brought a sense of mourning of the eight years I have lost in my life because of the sacrifices I made to take care of him. For example, I like the musician Pink but I’m not necessarily a huge fan. Recently I was scrolling Facebook and saw a video someone had posted at the Pink concert… I’m not sure why I did it because I don't usually watch videos, but I clicked the link. It was a video of her singing while also doing a high-wire act. The lighting, the music, the backdrop of the city and everything about it seemed beautiful. As I watched it, I started to weep. All I could think was, “I want to be at that concert.” In that moment, I felt a profound sense of loss of so many things I didn’t get to do in my own life.
In that way, I am mourning the past eight years and all the things we didn’t do together, but also what I have missed in my life. Now, I’m not necessarily mourning the loss of him anymore as much as I am mourning the years we didn’t get to really enjoy when he was physically, but not mentally, here.
When you have lost a loved one to Alzheimer’s and you start that grieving process sooner, after they pass, there is somewhat of a sense of relief as the day to day stress of caring for them falls away, and there is a newfound freedom where you don’t have to worry about where that person is, how they are being taken care of, and feeling an urgency to return home to them. By the time they pass, they are not the person you had married or known… that person has been gone a long time. You still move along the Path of Grief, but it might be at a different pace than those who have lost loved ones by other diseases or more sudden circumstances.
Just this Saturday night, my son and daughter-in-law, Scott and Ari, reached out and asked if I wanted to go to Marine State Park on a bike trip with them and my grandson Silas. Had this been last summer, the answer would have been, “I would love to, but it doesn’t work.” I probably wouldn't have gone, but if I had, there would have been feelings of stress and guilt that I wasn't home with him and certainly time constraints. This time, I was able to feel carefree and relaxed. It ranked among one of the most joyous days I’ve had this summer... I felt happy, relaxed, and never gave time a thought.
I’m not sure if I'll ever actually see Pink in concert, but I do know there are concerts and other adventures in my future because I’m ready to start living a life with more excitement, fun, and new experiences.