When Death Requires Your Silence

Image Source: Mindworks

This is going to be a difficult article; not just because of the topic, but because people don’t want to hear the realities. I am not just writing this just for myself, but also for those like me that are the survivors, and what is expected of us versus what we are feeling. This is a taboo subject, because if you dare say anything that isn’t what people think you should say, you are simply viewed as a bad person. Bear with me on this journey; my situation may not be one that others share, but there is a common thread that runs for all that have experienced this kind of loss.

My husband was diagnosed and then died within a three week period. There were small symptoms and looking back I can only assume that he knew something was wrong. But therein lies the first major problem. We spent years arguing about why he refused to go to doctors, even for a physical, or his lack of rationale for why he wouldn’t even take vitamins. As I am finding out, both he and some of his family, were of the idiot philosophy of “if it ain’t broke, don’t fix it.” A year ago we had moved to an HMO health insurance policy that required him to have an annual physical and blood work and he smirked when everything came back almost perfect. But here’s the thing, Stage 4 cancer that is throughout the body doesn’t happen overnight, and a physical and blood work alone won’t find it. The healthy test results just validated his attitude. Meanwhile, I took care of myself as I understand that preventative medicine is not completely infallible, but it can catch some situations early so that they can be treated.

While we were married over thirty years, we had a tumultuous relationship. Both of us could be stubborn and with him, everything always ended up in an argument. If I said the sky was blue, he would argue that it was green; and this covered many topics that people would just think were “odd.” As happens with couples, you fall into responsibilities or jobs at the home front that fit your skills. However, with my husband, he had devoted his life to choosing what he wanted to do versus what needed to be done. Even if something was a high priority, if he didn’t want to do it, he would simply ignore it. This is the main core of why we often had arguments; he would fight to the end when it came to something he didn’t want to do and it could be as simple as remembering to check the well equipment all the way to talking about sealing our paver driveway. However, to his credit, over the years, he had become incredibly handy and he took on many projects that others would balk at. Many of these were done beautifully, however, as I am finding out, what he did around our house was never of the same quality that he would do at work or for others. You see, another of his traits was that he had an unhealthy attitude of valuing other people’s opinions more than mine, and he would go above and beyond to ensure that they didn’t just think well of him, but elevated him to the very best. This often created an opposing effect as others looked to me in a negative way as I was the one picking up the pieces and making things work at home while he basked in the praise that others ladled on him. I must also note that he deserved their praise, because he always did an exceptional job for them.

He was a hoarder of the worst kind. Even those that he worked with admitted to it. Hoarders not only collect things, but they typically don’t keep anything organized or cleaned up. While I maintained everything having to do with the house, bills, insurances, and all other responsibilities, he was the handyman and his domain was the garage. I was advised by my male co-workers to never interfere with the garage as “that is grounds for divorce.” Now consider thirty years of hoarding and you can understand why we had arguments. Oh, he would camouflage by putting things in front of the mess but when that didn’t work, we were forced to get an outdoor shed. The overflow to the shed eventually went to the double storage unit where I kept what was left of my family’s things and all of our holiday decorations. When you opened the doors you would be faced with floor to ceiling containers.

Having a marriage of this longevity, you have to accept certain situations. I was frustrated by his lack of ability to do what was absolutely required and instead hand-pick what he chose to do. Yes, many of the projects he selected were done incredibly well, but as I found out later, the rest were done so badly that they literally fell apart. I gave him a lot of leeway because he worked outdoors in the horrid heat and continued to do so when others that were younger than he was would give up. I therefore lowered the expectation bar so that I took up a lot of the slack at home.

I had lost all of my family members far too young and he also had some that had passed away. We had talked about death and what we would do if the other one died, so this wasn’t a subject that had been avoided. I traveled a lot for business and each and every time I preplanned with envelopes of instruction including all insurance policies, phone numbers, tax spread sheets and a CD that contained all information. I did this because I loved him and would never leave him stranded with the responsibilities and nowhere to turn. Of course, I also knew that this would be something that he chose to NOT do, and so I informed my best friend that she would be the one to take responsibility if anything happened to me.

I am giving you this background so that you at least comprehend some of the reasons that I feel as I do. You see, my husband died and I was left with an overwhelming list of responsibilities that, so far, I have yet to see anyone else in a similar circumstance tackle head on. This isn’t the standard norm, this is beyond comprehension; especially because I am completely alone.

…And if I make any word of complaint, others think there is something wrong with me.

The First Two Months

If you have lost a spouse, you know that the first couple of months are entrenched in making contacts and coordinating memorial services. In our case, both he and I simply wanted a “Celebration of Life”. My best friend helped me and in between the arrangements, I was making phone calls. One of the odd things that happens in conditions such as this is that you get sympathy cards from friends and family far away, but a lot of the so-called “friends” simply drop off the face of the earth after that. You don’t know this will happen until it does happen.

I refer to this time period as the “administrative element.” There isn’t any time to grieve because you are too swamped with things that you are required to do. The most difficult part is realizing that the house is empty and you are trying to wrap your brain around the agony of the loss. I am an organizer, so I created a container where I began putting all of the paperwork and documents. I purchased the largest notebook that I could so that I could store the medical information for his three weeks of treatment. I kept trying to focus, but each time I would see the shadow of the man that I knew, taking his last breath, and dying in my arms.

I can say that during these times, you probably go a little bit insane.

I worked in technology and many of my male co-workers used to joke with me, telling me that I “needed a wife.” This was commented because I literally took care of everything around our home and in our lives. So it’s understandable that little actually changed in my day-to-day functions, except that he wasn’t there.

It takes a good two months for you to complete all of the contacts, get the name changes done, and send out copies of the death certificates. You become sickened with the repeated sentence “my husband passed away” as well as a harsh and cold reality that you are now a widow. After years of using the terms “we” and “ours”, you must now transition to “I” and “mine.”

I have been through the process of death with all of my immediate family, and they left us far too young as well; so I understand what is expected of me and I do it without question.

Waking Up Alone and to Reality

My husband was never one to be involved with so many of the things that other husbands might do. I took care of my own car and getting it checked out as well as repaired; I went to my own doctor’s appointments and only in dire emergency was he required to be there; I took care of our high maintenance yard with clipping, the weedeater and mowing; I paid all of the bills; I did the taxes; and I configured the budget and allocated when we could do upgrades on our home. As with many households, I took care of absolutely everything when it came to birthdays and Christmas, including buying gifts, wrapping, planning meals, cooking, and serving.

Oddly, his family seemed to think that this kind of arrangement was completely normal and that it was somehow my “responsibility” to do it all. I found out later that if I made any word of complaint to either him or them, that they would get angry and view me as trying to put him down. Some of them seemed to forget that while they might be stay-at-home-moms, focused on how to create a decorative lunch for their kids or attend soccer matches, I worked a 40–50 hour a week job. Again, this was the source of many arguments and only in the latter years did he pitch in a help a bit.

The post-two month time period is just about when the waves of grief really begin to hit hard. If you are lucky enough to have had people around you when everything came down, they are all gone by this point. You are alone. You find yourself reeling from just about everything and the anxiety and stress places your brain in a precarious place while your body steps up and is in a constant state of “fight or flight.” You cry when you don’t think you will and are in stunned shock when others cry and you can’t shed a single tear. In my case, I couldn’t listen to music that we shared and had to take all of his pictures down because I would find myself just sitting on the floor, staring at the tile.

Only a few months earlier we had invested $3,000 in a new bedroom suite and I found that I couldn’t sleep there, but was on the couch every night. This was not a new habit as he snored so loudly that I couldn’t sleep in the same room with him. However, now the set was just a reminder and I couldn’t even be in the bedroom.

Image Source: Hospice Care

The Garage and Hospice

During this entire time I felt luckier than most as I had my own company and made the choice to simply let it go while I went through this process. I recognized that I had to do something for survival and the first step was to take stock of the garage to know what tools that I needed. Moving only a few things that he had sitting in front to hide everything, led me to a horror of recognition. The walls were black with roach poop, there were bugs and roaches everywhere and layers of dirt and grime that had built up over 29 years. There were boxes and containers of bits and pieces of leftover “stuff” from various projects scattered all over the garage. There was no organization, rhyme, or reason. Massive containers of nails and screws, many rusted beyond use, were littered everywhere, and now it made sense why he always had to go to Lowe’s to get nails and materials; he had no idea where any of them were in the garage.

His sister was one of the few people that I could turn to in my frustration, and she told me that it was ok to talk to her about it. She had been here when he died and although now thousands of miles away, I welcomed what she said was her “open” attitude regarding talking about what was happening. I should have recognized that there was something wrong, because she found “humor” in the massive mess that he had left. There is nothing funny about any of it. I didn’t take offense as she was going through her own battle with breast cancer; yes, it runs in the family.

Each day I took one small area of the garage and attacked it. I pulled 40–60 lb. containers out, tossed trash away, got an inventory of what tools were there, reorganized, and put things into some kind of order. Over the years we had invested in a lot of tools and equipment and it wasn’t until now that I found out that he was using them for his work. Needless to say, almost everything was missing, broken, or in a bad state of misuse. This was a full time job, 8 hours a day, 7 days a week. I went to Lowe’s and bought things that I knew we once had. I began to create a completely stocked garage so that if I needed a drill I had one, with all of the bits, as well as everything that I needed to begin learning about the things to repair.

The hardest part was pulling out all of the containers, boxes, and crap so that I could hit the walls with 409, rinse them, and then hit them with a bleach solution and rinse again. The sheer volume of dirt, dead roaches, and roach poop made me nauseous. Was I mad? You’re damn right I was mad. Who in their right mind lives like this? I scrubbed, cleaned, washed, and eventually painted the walls and baseboards of the entire garage. My arms and legs were cut, bruised, and bleeding on a daily basis, but here’s the thing:

I wasn’t allowed to complain about it. If I said one word of frustration, I was “speaking ill of the dead.” My attitude was to hell with that; he left me with crap that I would never do to him.

People asked me why I wasn’t aware of this condition. The answer is that he hid it and he knew that he should clean it up, but just decided it was something that he didn’t want to do. As part of a marriage you trust your partner to do the right things, especially when there have been so many disagreements about them.

Hospice had been incredible. When he was given the choice for end-of-life at home they moved everything in so that he was comfortable. He barely lasted 24 hours and we were with him until the end. I consider this time a blessing, as we had the opportunity to say all of the things that often go unsaid. I told him that I loved him and apologized for all of the bad times. He seemed to be at peace with his decision and he knew that I was completely devoted to his care. I am grateful for the liquid morphine that we were given to administer; that kept him from being in pain at the end.

When something like this happens, you are in shock and I knew that I needed to attend the loss of a spouse support group that hospice hosted. We had around 30 people, men and women, and while each had a unique death experience, we shared in our loss. We admit how we are feeling and in my first few times there I was expressing my anger at the absolute chaos that I was left to handle. There is no judging in these groups and the therapist indicated that anger is part of the process.

What I found out in attending the support group is that no one was going through what I was going through. Some had been left with a “mess”, but they were leaving things as they were. Their attitude was that their kids, nieces, nephews, etc. would deal with it. Unlike these people that seemed to be financially set, I had to think about possibly selling the house in the next year or so. I couldn’t just let things sit and rot. It was also a question about my own survival.

The other thing that I found out at the support group is that a majority of the women there were clueless about how things ran in their homes. It seems that many jumped from living with their parents to being married and their husbands did everything. None had single, independent lives, and I found myself absolutely stunned at what they didn’t know or couldn’t do. I had always been independent and while I was a wife, it was part of who I was and I never let it be the only thing that I was.

In other words, being married didn’t define me.

Grieving Changes the Brain

The process of grief is so complex that there have been studies done on it. Therapists as well as physicians will tell you that the anxiety and stress involved in grief changes the brain. In cases such as mine, I was operating in a constant fight-or-flight condition and this increased my heart rate. My primary physician set up a full panel examination and testing for me and, after he heard that I was lifting, moving, and hauling so many things, he told me that I was doing too much. I was put on Xanax to try to slow things down and within a short amount of time, transitioned to beta blockers to stop the constant flow of hormones that were causing me distress.

I used to hear that it was common for spouses to pass away very close to each other. I always assumed it was due to loneliness, but now I know that it is a combination of anxiety, stress, and being overwhelmed and overworked. The loneliness, just like the grief itself, comes in waves.

I had now progressed from a freshly painted and organized garage to taking on the shed that was filled with the same mess as the garage. This was smaller and it took less time, but it was also filled with roach poop and since it was outside…ants. I hauled out old camping gear that I had once cared for and he had simply thrown in piles. There were large batteries with battery acid overflowing, containers that had food in them that he didn’t even wash, sleeping bags that could never be used again. I dragged container after container to the front for trash collection. I was sweating, dirty, covered in roach poop (again) and with each discovery, my anger rose.

A good friend of mine touched base with me. She was single and we had been friends for years. I began to talk about how I was feeling and that I couldn’t believe he treated things so badly. She knew I was alone and doing this by myself, and her response was the same as a few others. It was if I should be putting my husband on a pedestal, keeping my mouth shut, and just taking care of things. I was shocked.

It was then that I realized our society has a bizarre way of looking at those that have passed. We seem to want to offer respect to them and ignore any wrong doings that the families have to take care of due to their negligence.

When a Spouse Dies — Everything Breaks and Falls Apart

One of the things that I found out from being in the support group is that it is quite common for a large number of things to simply stop functioning after a spouse dies. For me, there were twelve things that broke or needed to be repaired within the first couple of months. When he was alive I looked to him for some of these types of repairs, but the rest I coordinated with the experts. Never had we had so many breakdowns in such a short period of time.

This was additional stress on top of making 24 trips from the storage unit; each trip involved loading six 50 lb. containers into my SUV and then unloading at home. I had to go through over 80 containers to decide what to keep and what to get rid of. Since there was never any room in the garage, some of these were my family things. I was the last one left alive and they contained picture albums and memorabilia. The rest were simply things I wanted to keep and it was then that I made the decision to take a friend’s advice and have a yard sale. I had collections and some antiques, and it was time to downsize. I had never had a yard sale before and it will be the last yard sale I will ever have in my life. That is a seedy side of humanity that I never want to see again. Greedy people trying to get you to reduce a $50 item that still had the price tag, from fifty cents to a quarter. They looked to me like a swarm of knuckle-dragging Orcs. I made six trips to donate the rest to the hospice thrift shop.

Throughout this entire time I was feeling guilty for the gamut of emotions that I was experiencing. One moment I would be sorrowful because neither of us knew he would leave like this and the next minute angry, as I was wiping blood from yet another cut on my arm or leg.

I would anguish, looking to the sky and asking “why would you do this?”

I had spoken with his sister during some of my lowest moments, and she kept saying the same thing: “he didn’t do this on purpose.” My mental question was “really?” He had ALL of these years, our many discussions, our many arguments, and then tried to hide the disasters? Not on purpose?

His sister was on a variety of meds and there were two situations where she seemed to go off the deep end, making demands of me to supply her with medical information from the oncologist that I had already sent to her. She got testy and irritable. So it wasn’t a great surprise when I spoke with her and was praising her husband for being there for her that she took it as if I was insulting her brother. That wasn’t my intention, but she went wacko on me, talking about things that were not related to the conversation. It was then that we ended our relationship. She had made a 180 degree turn around in just about everything. I had complied with her requests, even though she had no right to ask them, and then it was over. This was the woman that said I could talk to her about anything. My guess is, that my mention of the fencing that my husband had built and was rotting because it wasn’t up to code and I needed to replace it was the final straw for her.

She didn’t want to hear the truth, only the fantasy of her brother that she had built in her mind.

All the while, I am pulling down fencing, hammering nails down and looking to my handyman to use the chainsaw to cut them in half while I investigate what replacement fencing will work best.

What Good will it Do To say Everything?

It has now been about six months and a majority of the things that fell apart have been repaired. I am going through the entire house, locating all of the jobs that he did and getting feedback on how to fix the ones that he did badly.

No one wants to hear about this. I am not allowed to complain. I am not allowed to be frustrated. The role that I am “supposed” to play is the dutiful wife, wearing black, and bemoaning my loss. That doesn’t quite cut it when I am out measuring PVC pipe or getting contractor bids to repair the back porch roof that he installed badly.

Some have asked what good will it do to convey all of the things that were bad? This is a dichotomy. All of his co-workers and even our neighbors all thought he was the salt of the earth…shouldn’t I leave it that way? Sure — but at what cost to me? If people have any empathy for the surviving spouse they need to look at the reality of the situation, not a made-up version of who the individual was.

Is this the reason that so many spouses pass away so close together? Is the remaining spouse left to hold all of the emotional tidal waves inside just so that the one that passed is well thought of?

I can say that time and my ability to get so much done is allowing me to feel less anger, although the waves of grief and loneliness remain. I must look to whatever future I have and think about myself. I told another friend that it is like returning to when I was single.

I am writing this so that anyone that goes through this knows that they aren’t alone in their feelings. Those that are around them should also be aware that they have NO right to judge nor force a remaining spouse into a position that they cannot express their frustrations. The surviving spouse shouldn’t feel as though their only source of relief is to locate a therapist because no one else wants to hear the truth.

Expecting a surviving spouse to just “suck it up” is unfair and unacceptable.

There is never truly any total healing in grief, there is just getting accustomed to it, like a scar.

I only hope this will be of some good.

A journalist that worked in the media and continues to seek out truth and integrity. A liberal and one that is suspicious of cults and empty promises.

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