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UNambiguous Loss

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week we are preparing for our move, and as you read this we are making our final preparations for the movers who, if everything goes as planned, will arrive bright and early tomorrow morning and start packing us. The movers estimate that it will take eight hours to get everything in the truck, so the day after, we will start our migration north.

Getting ready to move means going through a lot of old papers, especially in our garage. I have told you before that Janet was a school teacher. However, she was also something of a pack rat. In our garage we have boxes with her grade books from classes she taught 40 years or more ago. Likewise, there were boxes of canceled checks that were not only written on accounts that don’t exist anymore, but in some cases on banks that don’t exist anymore!

However, I also found other things… One such find was a note that she wrote sometime in August of 2019. I know that because in it, she refers to the shooting that took place on the 3rd of that month where a deranged man shot and killed 22 people at a Walmart in El Paso. I don’t know why she wrote it or who it was for as she never showed it to me. She was apparently worried that I would be “inspired” by his actions and go on a similar killing spree.

I well remember those times. She was constantly worried about anything and everything. It was then that I started having to censor the radio and TV programming. I also had to be very careful about what I said around her because there was no knowing what news item or bit of conversation she would pick up on and start obsessing over.

For example, if I came home from work upset about something trivial that happened at work, she would right away jump to the conclusion that I was about to get fired, and she would go on about it for days. Ironically, by the time I eventually did get fired (for not communicating well!) her condition had degenerated to the point that she only asked me a couple times if we had enough money, and that was about it.

Thankfully, I had been putting a bit of money aside and we had enough for two months, which I was able to stretch to three months. Still, God brought this job along just in time.

❦ ❦ ❦ ❦ ❦ ❦

Several months ago I wrote a post entitled Ambiguous Loss. As I wrote then, this sort of loss can take two forms, the most common of which is feeling you have lost someone when in some way they are still there. A typical example of this type of loss is when dementia turns your gentle, loving spouse into a harsh, judgmental stranger. Or when your bubbly, outgoing loved one starts becoming sullen and unresponsive.

UNambiguous Loss is the old-fashioned, familiar kind, where the bed is empty and you are now officially a widow, widower, or orphan.

(Which, by the way, makes me wonder why isn’t there a word for describing someone who has lost a sibling? We really should have one…)

Even when the loss is finally unambiguous, the ambiguity can nevertheless continue in other ways. For example, a few days ago I got a care package from Houston Hospice that included a couple of books on the topic of grieving. Unfortunately, the books were not written with the world of caregivers in mind. Reading them, you find that the books do spend a page or two talking about death after a “prolonged illness.” The problem is that as you read further, you see that they define “prolonged” in terms of weeks and months – not years or even decades. Not surprisingly then, these books were written assuming a timeline that proceeds something like this:

  1. Loved one becomes ill, injured, etc.
  2. Loved one dies.
  3. Grief starts.

To be fair, this plan works fine for the majority of deaths – like if Janet had been hit by a bus, or had suffered a sudden heart attack. But it falls apart when the illness takes years or decades to reach its solemn conclusion. The problem is that in the sort of scenario many caregivers face, the three steps are no longer discrete points in time delineated by sharp edges separating one step from the next.

Rather, the steps get smeared out in time like a rain drop running down a window, or a tear running down a cheek. As a result, the steps start overlapping, getting smeared together. Or to put it another way, each step becomes a process. Sometimes it felt as though all three were happening simultaneously.

To begin with, it is not at all clear when Janet became ill – or is that even the right way to formulate the question? Perhaps I should say it is not at all clear when Janet became symptomatic. Remember, HD is a genetic condition so there was never a time in her life when her genes weren’t messed up. But even determining the onset of symptoms can be fuzzy. Her jaw used to “pop” shut. She said she had TMJ (temporomandibular joint problems) but maybe it was the HD.

But surely death is an absolute, isn’t it? Well in one sense, yes. But in another, I’m not so sure. As I look back, I try to figure out when the Janet I knew started dying. For months, my vigil by her bed had not been about waiting for death, because she seemed to be drifting back and forth between two worlds: the one where we all live, and the one where she is now. So even the concept of death became indistinct and cloudy.

In the end, about all I do know for sure is that, for me, the grieving did certainly not start the 10th of January 2021. For me, and I suspect many others who are caring for loved ones that truly have “prolonged illnesses,” the grieving starts a long time before the person you love and are caring for stops breathing.

In fact, if you look at any list of symptoms of grief you will see that the list is largely indistinguishable from the normal everyday experience of being a long term caregiver. Depression? Check. Feelings of guilt? Check. Exhaustion? Loss of Control? Loneliness? Check, check and check again!

I guess the point here is that things we read can serve to set out expectations of what is right or normal during grieving. So what happens when someone who is already in a precarious state emotionally reads a book that models grieving in a way that is so very different from their own experience? I’ll tell you one thing that can happen: the feelings of guilt that were never very far away, jump out and, taking center stage, start yelling at you.

“See your wife is dead and you can’t even do that right! Man, you are a piece of work! There is nothing that you can’t mess up.”

Needless to say, those sorts of comments are a load of what my Dad used to put on his roses.

Beyond the guilt, the other big issue that has been making itself known is anxiety – especially the fear of being alone. It suddenly struck me today that things are getting more and more serious between Frannie and her boyfriend. His mom and aunt are calling her regularly on the phone and she has met most of his family – of course everybody loves her. So Frannie could be moving back to Houston in the next few months to get married. Which, to be clear, would be a good thing. I have always wanted Frannie to have a life of her own, but still…

So, day by day, the battle goes on and along the way I am learning a few things. For example, it is pretty clear to me that Frannie and I have a lot deeper understanding of love than we would have had otherwise. I remember once, a long time ago, telling Frannie while I was helping Janet get cleaned up after a pee accident, “Don’t even consider telling a young man ‘I love you’ unless you would be willing to do this for him.”

By George, I think she has been listening.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when your grief seems overwhelming…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the gifts of strength and wisdom that You give so richly to all Your children. But today I want to bless You especially for eyes and ears that are learning to work better and better. Many times when he was among us in the flesh, Jesus talked about needing eyes that can see and ears that can hear. The lessons are hard, but I am learning to develop both. Thank you. Amen.”

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Ambiguous Loss

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

So what can I say about this week? Should I go into the details of what it is like to be quarantined with a woman that says the words, “I love you” but in actions says the exact opposite? No, there is no point in plowing that field again, so let’s talk about something else. The weather? No, that is too local. Politics? No, that is too divisive.

I have it: Risk. That is a good topic, but it is a dangerous one. To risk is to put something, perhaps everything, on the line. Risk means to put up or shut up, to commit yourself regardless of the cost. Risk is a timely topic right now too, as every newscast seems to be about it.

I haven’t mentioned it before publicly, but I have started learning Italian. Why? Partially because it is a risk, though an admittedly small one. But love, marriage and life – those are big ones. When Janet and I were going on our honeymoon, we decided to go to Tahiti because Janet had a job where she flew a lot, to the point that the airlines were almost paying us to go there. While there we met an Italian gentleman Signore Mantovani. As I recall he was some sort of official with the EU. He was alone because he had just lost his wife after a long illness and was traveling, revisiting all the places they had gone together as a couple. When he heard Jan and I were newlyweds he immediately “adopted us” taking us on obscure tours that he knew about and one night took us to dinner.

For those of you who have never had a real Italian dinner, it is not a quick sit-down to a plate of spaghetti at Olive Garden. A real Italian dinner is an all-night affair. So we had been “dining” for a couple hours and had just finished our appetizers and a bottle of very good wine, when Signore Mantovani looked at me and said, “You know what the problem is with Americans?” I had to admit that I did not know. He said, “You eat too fast! In Italy, we talk a little, we eat a little, we have some wine – and then we talk some more. In Italy, dinner holds us all together! Dinner isn’t about feeding the body. It’s about feeding the soul.” What he meant, of course, was that in Italy eating is always about more than food. Meals are about famiglia, family – and that understood in the broadest possible way. The dinner table is where traditions, lessons, love and recipes are passed on from one generation to the next.

Questo è per te Signore Mantovani!

Last week, I mentioned a term, more or less in passing. I had heard it from a friend online but have since found out that it is a real thing. The term is ambiguous loss, and it provides the title for this post. To my surprise, a psychologist, Dr. Pauline Boss, has been writing on this topic for nearly 20 years. One of the points that she makes in her work is that while “ambiguous loss” certainly applies to situations such as people suffering from dementia, there are also many other sources. For example, for someone who is divorcing, there is an ambiguity about the loss in terms of what exactly is going to be the relationship going forward. Likewise, she has worked with wives of MIAs about the ambiguity of their own marital status. Are they still married, or are they, in fact, widows. Even a child leaving home for college can produce a sense of ambiguity. Do we set a place for them at Thanksgiving, or should they be included when you say “we” (meaning the family) are going to do something? In the end, we see that ambiguous loss is actually much more prevalent than the “normal” kind where we can, for instance, see a body lying in a coffin.

For this reason, I have been looking into the matter further and the result is (at least) this post. While I haven’t done a book report since high school, that is what you are getting this week. Specifically, I’m going to be talking about Dr Boss’s first book on ambiguous loss called, appropriately enough Ambiguous Loss, Learning to Live with Unresolved Grief. This book is available on Amazon in hard copy or as a Kindle download, which is how I read it.

The first thing I want to point out about this book is that, while its primary audience is the psychological “clinician,” Dr Boss has a writing style that is nevertheless accessible and very easy to read. For example, the “case histories” that she presents are as likely to come from her own or her family’s experiences as from those of a client. Which is another good point, she never refers to the people or families that she sees as patients. Likewise, she doesn’t refer to her sessions as therapy because, in her view, words have meanings and to use the word “therapy” would imply that there is something wrong with the person or the family that needs to be fixed. In truth, she points out, the problem is not dysfunctional people but a dysfunctional situation. It is the situation that needs to be addressed. Consequently, rather than being the problem, the people are always part and parcel of the solution.

Dr Boss, likewise, doesn’t try to rephrase discussion of psychological matters in “layman’s terms.” She says, and I agree wholeheartedly, that talking down in that way is condescending to the people with whom she is working.

In addition to the psych-jargon and condescending attitude, also missing from this book are long drawn out discussions of the brilliant solutions that she developed for a family’s problems. Instead she presents solutions that people developed on their own to address their own needs. For example, she cited the case of a woman whose husband had an advanced case of Alzheimer’s Disease and who, despite not remembering who she was, was continually making sexual advances to her. In the end, the accommodation that the woman developed on her own, was to remove her wedding ring and put it in her jewelry box. She had realized that the thing that was causing her so much grief was the ambiguity between the conflicting roles of “wife” and “caregiver.” This simple act of removing the ring gave herself permission to temporarily set aside the wife role so she could concentrate on being the caregiver that her husband needed. Eventually, when her husband died, she retrieved her ring and took up her new role as “widow.”

Now obviously this solution will not work for everyone, but that very fact demonstrates an important point. Just as the loss is ambiguous, so are the rules that govern dealing with the loss. Therefore, the person or persons grieving will often have to cast a wide net to obtain the information that allows them to (prayerfully) synthesize for themselves a way forward. Such input can come from psychological professionals, family/cultural traditions, and their faith community.

In another case history, Dr Boss points out a fact that in hindsight is rather obvious: ambiguous losses are cumulative. In other words, most of us will go through multiple losses that would fall into this category and ones that are not resolved adequately add to the mental load imposed by the later ones. This stacking of loss upon loss can mean that dealing with a current loss can easily turn into an archeological expedition digging up and healing old unresolved grief that is being triggered.

So what is my final evaluation? I would say that this book would be money well spent for anyone who is being troubled by uncertainty – and who isn’t these days? You won’t find in it pat answers or how-to “recipes.” What you will find is information that will help you understand, and come to grips with, what is going on in your life.

As I was finishing up this post, it occurred to be that right now the whole world is in the midst of dealing with a massive ambiguous loss – so ambiguous that we can’t even be sure what it is that we might have lost. I am speaking, of course, of the pandemic that may (or may not) be raging across the globe. Is this the greatest threat to civilization since the bubonic plague, a hoax thought up by a shadowy global elite to enslave mankind, or a biological warfare experiment that went horribly wrong? Whom do we trust for information? Friends, family, media that can be owned by the government that it is reporting on, or the proverbial “guy in a bar”? Due to the ambiguity inherent in this situation, these ideas, whether we believe them or not, can and do create question marks in our minds that we have to deal with.

And then there is the question of what we may (or may not) be losing, or be in danger of losing: our life or the life of a loved one, freedom, country, religion or perhaps something larger like our sense of community and trust? Clearly we all have a lot of work to do.

In Christ, Amen ☩

A prayer for when you are feeling uncertain…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the certitude that You provide. But today I want to bless you especially for ambiguity. You are at once the central exclamation point of my life and the biggest question mark. There are so many things of which I can be absolutely certain, but at the same time so many things about You that are (to use the theological term) mysteries. Lord, help me to learn to be comfortable resting in the mysteries of who You are, and give me Your words to reach out to others. Amen”