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Being Successful

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’ll continue the process of revisiting some of my posts written over the past year and a half, and giving them a bit of a facelift.

This week Jean went through the past posts and identified one that she felt was one of her favorites. It originally ran July 12th of 2020, and was entitled What is Success? The post is notable to me for being the first post for which Jean left me a comment:

“Oh, I sure needed this today! I want to save it and come back frequently to remind myself of these things, even though this is my 2nd HD marathon.

“Thank you, Michael, for your wisdom and faith, and for sharing your thoughts so eloquently!”

At the time, she was caring for her daughter (Jennifer), after already having lost her husband several years before. For me, the comment documents the day that I first became aware that a person named Jean Barnes existed. But concerning the future… I had no idea…

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A past post talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success.

However, that assumption begs the question, “In the context of caring for someone with an illness where the patient always dies, what exactly does success mean?”

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. A foot race has a clearly defined beginning when the starting pistol goes off, a predetermined length, and a precise end when the runner breaks the tape at the finish line. In addition, a race often includes the promise of a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics

The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations, a point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire, focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams. You soon discover, through the film, that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and (despite the racial problems) his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality that he lived, Abrahams had very different reasons for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to taunt them and rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But the price was a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race, an approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure won’t be judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/love my spouse/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

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A prayer for when you are feeling spent…

“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 that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank You for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen.”

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Nonverbal Communications

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week we found out that Janet’s CNA nurse Latonya, prior to becoming a CNA, worked as a hairdresser. Consequently, when she came in on Monday, she was able to cut Janet’s hair to a much more easily maintained shorter style that will not get tangled and matted. She also remembered that the 13th was Frannie’s birthday and so brought her a dozen decorated cupcakes to celebrate.

In terms of Janet’s medical condition, the catheter is continuing to work well and her fluid intake has remained higher than it had been previously. One concern was that the fluid in the tubing and bag had begun to take on a cloudy appearance. However, the CNA said at this stage, that was not unusual – plus it has since cleared out again.

Janet’s eating regime has also changed over the past couple days. Recently, she has been eating soft foods (pudding, yogurt, baby food) three times a day. Thursday, she announced that she was no longer hungry and didn’t want to eat anymore. While she hasn’t yet fully stopped eating, she may be working herself in that direction in that she has shifted to an increased number of mini-meals where she eats a few spoonfuls and then stops. The first time she did this, she said she was feeling full, though she has since also complained of acid reflux.

Finally, she started complaining this morning of her hands and arms being either “dead” or “asleep,” and of an inability to feel her legs. In addition, she can no longer tell where she is or how her body is oriented. This evening she was feeling confused because she said that it felt like she was floating in the air. Don’t know what that means – if anything – but there we are…

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This week I have been thinking about something that, when it comes to being either a caregiver or the one who is being cared for, is often the 900 lb gorilla in the room: Communications – that constant struggle to comprehend the flow of information that is going on around us.

Notice, please, how I phrased that sentence. Although we tend to concentrate on spoken communication, the fact of the matter is that we are inundated by information in a variety of forms. In point of fact, there exist forms of communications that uniquely take advantage of each of our five human senses, and which deliver messages that are tailored to each mode of sense impression. Messages, I should point out, that are carried on, and mediated by, the central nervous system.

For example, we can hear language (typically words – though not always) that communicates ideas and concepts from one person to another. But hearing doesn’t stop there, we can also hear other sounds such as music, that communicate feelings or make us understand that the heroine on screen should really not go downstairs into the basement because that is where the guy wearing the hockey mask is hiding. Likewise, there are sounds like the cooing of babies or the smashing together of automobiles that each communicate their own kind of information.

Similarly, the senses of touch, smell, and even taste have associated with them their own unique types of messages. For example, taste helps me to understand my own physical condition, because when I am coming down with a cold or the flu, the first symptom I always detect is that I get a strange sort of “metallic” taste in my mouth. Smell can advise us that dinner is ready or that there is danger in the form of an overheating electrical device. Even touch can provide critical feedback that we are being loved and cared for, or that our phone is ringing thanks to haptic technology.

Finally, vision can help in the comprehension of language – as it is doing for you right now through a process called “reading,” or help us understand messages that pass between us through the ways that we hold ourselves or the looks on our face. However, this visual language is far less standardized than even English (which is notoriously bad on this account). For example, consider this picture taken in 1921 of the great Buster Keaton and his first wife Natalie Talmage on their wedding day.

Now we have no way of knowing whether the expression on his face was an accurate representation of his true feelings at the moment, or whether, given his persona as “The Great Stone Face,” he was posing for the photographers. However, if he had any inkling of how that union would turn out, it might have been either one. Regardless of which it is, the picture well illustrates the problem with a task that we take on without thinking every day: trying to understand what people are thinking based on hints that we get from their facial features and body language. If people’s faces are the windows to their emotions, those windows are often dirty or clouded by cultural, societal or personal concerns, garbling the nonverbal communications.

In addition, psychologists have done studies to analyze how people extract emotions and it appears that the processing required is far from trivial – and that’s for someone with a “normal” brain. If you start considering people with known neurological problems, you can begin to understand how daunting and fraught a task it can be for your loved one, who is dealing with some sort of degenerative condition – or you, for that matter, after having only gotten eight hours of sleep in the last three days.

Is there anyone alive who has not had the experience of saying something that we thought was rather obvious and suddenly had it blow up in our face? Now the first thing to understand is that these sorts of miscommunications will always be with us. Therefore we need to approach all communications from a place of humility where we need to hear what the person is really saying and not be simply “triggered” by certain words or phrases. For example, the book Huckleberry Finn is today censored and removed from library shelves because it uses the dreaded “N” word – while ignoring the fact that the book is a devastating evisceration of slavery and bigotry in the pre-Civil War south.

And the same concept applies on the mundane level of personal relationships. Let’s be honest, when you live with someone for a number of years, you learn words and phrases that you know are guaranteed to offend and exasperate the other person. For example, Janet learned the phrase that would trigger me, and as the disease progressed, she used it often. The phrase was, “ … I hate you, I want a divorce … ”

I well remember a couple of instances where, after she made that statement, family had to (metaphorically speaking) talk me in, off of the ledge. Now in a healthy relationship, both parties can be educated to not deliberately say things that they know will hurt a loved one, but in a situation where caregiving is involved, the relationship is not healthy – or at least not healthy in that way.

A contributing factor, that may sound strange, is a lack of vocabulary. If you are a caregiver, sometimes your loved one can simply “lose” words. A humorous instance of that occurred after my Mother’s first stroke. She was recovering well, but one troubling gap was that she could not think of the word “sofa.”

Oh, she had dozens of the other words to name that piece of household furniture, but “sofa” was just gone. So if I was trying to explain something to her and used that word, she would have had no idea whatsoever what I was talking about. More recently, I have had conversations with Janet, where I said something rather simply and plainly, but Janet didn’t understand, and surprisingly, saying the same words louder and more slowly, did not help her comprehension. What did help was rephrasing. Using different words allowed “meaning” to thread its way through the swiss cheese that is Janet’s brain, to reach “understanding.”

There are many parts to this effort to ensure clear communications, but as with all things in this life, we are not alone in this struggle. Sometimes it seems like God’s main job is to bring order out of chaos. The creation started with a formless chaotic void to which the Creator brought order and light, and so it is with life today: God continues to strike down the chaos of confusion and bestow on it order and light. A beautiful prayer that closes the sabbath observance for Jewish faithful speaks directly to this point by praising the Creator for bringing order to the world by making distinctions: distinctions between the holy and the profane, between light and dark, and between those who are faithful and those who are not.

In Christ, Amen ☩

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A prayer for when you are misunderstood, or are misunderstanding…

“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 bringing order of chaos. But today I want to bless You especially for all the many and diverse ways in which you work to bring order and beauty to my life. Teach me to lift up your order and truth to those around me. Amen.”

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Tempus Fugit

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

I don’t know if I mentioned it in the past, but a big concern with Janet, or anyone at this stage, is the operation of their kidneys. Which is to say, you worry over whether they are producing enough urine. We had a scare earlier when she went about 36 hours without wetting a diaper. But then it “let go” all at once in a veritable flood. After this cycle repeated a second time, we made the decision to insert a Foley catheter to help her pass urine. This procedure has been a rousing success in a couple ways: First, she is much more comfortable. Second, she is drinking more – no doubt because she feels more at ease doing so without the constant sensation of an overly-full bladder.

Unfortunately, her confusion is getting worse daily. In particular, she keeps asking me to help her to lie down in bed – when she’s already in the bed. Sometimes she thinks she is standing up, while at other times she thinks she is lying on the sofa that she used to sleep on. Just this afternoon she surprised me by asking me how my ex-wife Susan was doing.

I also realized that I need to be very careful about what I say around her. Even when she seems to be asleep, she hears conversations and gets worried about things she doesn’t understand – which is a lot. Been feeling very isolated this week.

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This week’s post marks something of a milestone. I have been writing this blog now for 52 weeks, or one full year. To me this feels a bit unreal for a number of reasons: To begin with, it doesn’t seem like it could have possibly been a whole year, even though it has been a very full year. While it is true that I had started healing by the time I began writing the blog, I was still very much an emotional basket case in November of 2019 and I feel amazed and incredibly blessed to still be standing a year later.

A year ago, Janet was in the midst of her violent, angry phase where she would strike out physically at anyone or anything that angered her, and at that time I angered her a lot. So not knowing any better, I guess, I just wrote about what I was thinking, reading, and feeling – everything. Although I probably wouldn’t have said it in this way back then, the bottom line was that I was tired of hiding. I was tired of having to maintain a public face for the world around me. Looking back, it is no surprise that this openness began healing some of the wounds in my heart – and seems to have helped a few other folks as well.

Looking back at some of my early posts, I realize that many of them were written in a state of near panic as I was trying to figure things out and keep my head above water. Some of the places where this panic is most obvious is in the prayers with which I closed every post. While some might consider this fact to be ironic, to me it has always made perfect sense. Consider, for example, the Psalms. They aren’t all lyrically enraptured reveries on the wonder of God’s creation – though a lot of them are. Many are also simply David complaining to God about how much his life at that moment stinks, but which nevertheless end with affirmations that everything really is under control.

I have often wished that Christians felt as open to complaining to God as our Jewish brethren do. How different our spiritual lives would be.

Something else I have learned is that the human body is a truly amazing thing. A year ago, I was in a rush to finish the first seven posts, because the way things were going I didn’t think Janet would last till the spring, but here we are in November. A year ago, Janet weighed 185 lbs, and when her weight dropped to 100 lbs I was sure death was very soon. But now she weighs less than 80 lbs – and still she keeps going. And if the body in general is amazing, how much more so the human brain?

The other day Janet and I were talking and she asked me how Dr Furr-Stimming (her neurologist) was doing. Janet was worried that her death would make the doctor feel like she had failed – a statement, by the way, that is so Janet. But it got me thinking, when was the last time you gave your loved one’s doctor a hug. Whether we are talking about Huntington’s, Alzheimer’s, Parkingson’s, Lewy Body or any of the many other degenerative neurological conditions, these folk go into work everyday knowing that nobody ever “gets well.” They, and the entire medical team, come to work day in and day out understanding, better than most, that behind all the platitudes lies the same grim reality: every one of our patients is dying and often there is little that we can do to even slow it down. Yet, they keep coming, prepared to face down the abyss.

In truth, they deserve far more than a hug, but maybe we can start there.

I have also learned that who you are coming into this experience is both a boon and a challenge. My approaching things as an engineer, the “boon” side of the equation included a predisposition to learning and figuring things out. Several posts are the direct result of my researching a topic that I needed to understand in order to better care for Janet. The “challenge” came from the innate drive that engineers have to fix things. However, in situations that are not “fixable” this drive can lead to frustration and anger. The lesson here is that regardless of how you were prepared for your journey as a caregiver, there is no universally perfect preparation, only what is needed for your specific situation.

Note also how I phrased that last sentence. The wording, “how you were prepared” was deliberate. At times it will feel like you have just been thrown into the deep end of the pool without any swimming lessons, but such is not the case. The truth is, no matter your background, it contains a veritable treasure trove of gifts for your current challenge, you just need to find them. And remember that the word “gifts” implies the existence of a “Giver,” and the presence of the gifts is an assurance of the Giver’s concern and involvement. The Giver is not silent.

In Christ, Amen ☩

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A prayer for when you are on the way…

“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 being our guide and provider. But today I want to bless You especially for all the ways you support me, the people who you bring into my life, and the knowledge and insights You bestow. But thank You especially for the opportunity to serve others. Amen.”

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Try to Remember

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week Janet has been going through fewer diapers – which is not a good thing. It means that her kidneys are beginning to shut down. She is also much more confused and is getting more and more agitated when not medicated. Much of her talking right now is just random phrases addressed to no one in particular.

She also is jumping between topics and everything is jumbled and out of order – sort of like a library after being hit by a tornado. She just now started yelling, “Help!” She is worried that our son was in “the wrong uniform” and that it was “Too late! Too late!” – though I have no idea what is too late.

This sort of rambling talk is hard on Frannie because she was raised to pay attention and respond when someone speaks to her or asks a question. But now the majority of her Mom’s words are incoherent or totally without context. Dealing with this new reality, in turn, has resulted in Frannie really getting it for the first time that in 35 years or so, that could be her (or her older brother) lying in the bed. Though neither have been tested, the possibility is certainly there for one or both.

Here’s praying for a cure.

Another problem is temperature regulation. She will say that she is freezing and (literally) 30 seconds later complain about being overheated. It could be that her thermal regulation is shot, or it could be that there is something else wrong that she doesn’t know how to express.

I also found the last remaining copy of the wedding invites that we mailed out 34 years ago.

As I sit here writing this, there are only 10 days before our anniversary. I also looked it up online and discovered that the church is still there.

East Weymouth Congregational Church

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The title this week is drawn from the first song of the 1960 off-Broadway musical The Fantasticks – which ran an astounding 42 years, closing in 2002. With words written by Tom Jones, the song evokes a sense of nostalgia for an earlier, more innocent time when the singer was a “callow fellow.”

However, the kind of remembering that the song calls for is more than just an encyclopedic recall of sterile facts and figures. It also includes images that invoke the feel of a time and place, like an impressionist painting by Claude Monet or really good photography like the work of Ansel Adams.

When your loved one is suffering from dementia, this unremembered memory can become critical because often the first thing lost is the “encyclopedia.” A situation that we can easily interpret like: “They no longer recognize me, so they are gone.” But even when the individual data points like addresses or names are gone, much of what truly constitutes “them” lives on.

Consequently, there remains much that we can learn from them – perhaps things that the “encyclopedia” hid. As an example of what I mean, consider the case of my own father.

To understand what happened to dad, you need to understand that my Grandfather Porter ran out on the family shortly after my dad was born, and that his mother (a first-generation, red-headed Irish Catholic lady with, we hear, a rather fiery temper) died of tuberculosis when he was five. At that time in rural Missouri, there was no formal adoption process and, for reasons that have never been adequately explained, my Grandmother Porter’s family (the Fosters) could have taken in my dad and his sister, but never did.

As a result, my dad was raised by a succession of local families until he ended up with a widow named Becky Moore, who was in her 80s when she took him in at the age of nine. She was clearly far too old to be trying to deal with a half-wild boy (my dad’s description of himself) and the measures she took to try and control him were often physically abusive – like smashing his knuckles with a chunk of stove wood.

Dad lived in her house (a tar-paper shack, really) until he was 16. When an Army recruiter came through town, Dad saw that visit as an opportunity to get out of a very bad situation by joining the Army. However, when the recruiter found out Dad was only 16, he wouldn’t let him enlist because he was too young. Dad made it a couple more weeks, but then something happened that truly put him in fear for his life so he lit out again, tracked down the recruiter in a nearby town, and pleaded his case for getting into the Army. Dad said it was very clear that the recruiter remembered him, because when Dad finished with his story, the recruiter looked at him and said, “Well I think we can get you into the Army. Just one question: how old are you today?”

When Dad said he was 18, the recruiter told him, “Well, it looks like you’re in the Army – raise your right hand.” And for the first time, Dad took the service oath, right there in the recruiter’s office. Was what the recruiter did illegal? Yeah, probably. But the recruiter knew that area of Missouri and knew that being in the Army wouldn’t hurt him – and might actually do him some good.

Dad would eventually retire 23 years later in 1954, a few months after I was born. Dad used to say that in a real sense, the US Army was his real mother and father, because it was the Army that taught him,

“…how to blow my nose, and keep my backside clean.”

So from Dad’s initial enlistment, let’s fast forward 70 years. My dad is now 86 and dying. As a retiree, he’s being treated in an Army hospital in Arizona, but his mind is muddled and worried. He doesn’t know where he is and doesn’t even recognize my mom. To him, she’s just a nice nurse that is always there whenever he wakes up.

Then one day, they had the door to his room open, and as he was lying in bed, he saw a soldier in fatigues walk by. That sight woke up some part of him that lay beyond the encyclopedic part of memory. It wasn’t something he remembered like the current day of the week or his phone number, but was simply a part of who he was.

He realized that he was in an Army hospital and he knew what had to be done. He grabbed my mom’s arm and told her that she had to find out from the orderlies what unit he was in and then contact his commanding officer so his CO would know that he was in the hospital and not AWOL.

What woke up was his sense of loyalty, honor, and duty to his “mother” and “father.” From that day on, Mom said he was never again worried or confused because he knew where he was – with his brothers.

I believe that in some way everyone is like that. We go through life with things so deep inside us that we don’t consciously realize they are even there – let alone where they come from. That’s why, whenever I’m interacting with Janet, I try to think about what her “random” words are pointing at.

In Christ, Amen ☩

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A prayer for when you’re trying to solve a puzzle…

“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 knowing all things. But today I want to bless you especially for opening my eyes when I cannot see, and making visible that which is hidden. Help me to understand the hidden needs and expressions of others. Amen.”

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Momentary Clarity

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week has been a time for clarity – though sometimes it has been a shrouded clarity. Confused? Well, let me explain.

For some reason, Janet has always had a special place in her heart for my daughter Catherine from a previous marriage. This concern was most commonly expressed in Janet’s desire for me to be in regular contact with her. We started with weekly phone calls, and now we often talk a couple of times a day via video calls. Consequently, my grandson, due in large part to my beard, actually believes that his grandfather is Santa Claus.

The depth of Janet’s concern for Catherine only became apparent this week. Lately, Janet’s perseveration has been being expressing itself in the form of a check list of concerns that she feels compelled to constantly re-verify to ensure that everything is organized for her end-of-life:

Life Insurance?   ✓ Check

Wills?   ✓ Check

Body Donation?   ✓ Check

After these standard items, she always runs through the family (including the dogs) to make sure that we are OK. However, a couple days ago, she changed the family list by asking, “…how are the girls doing?” Wait! We only have one daughter.

“The girls?” I asked.

“Yes, Frannie and Catherine,” she replied.

“Oh, they’re fine,” I said.

I have to admit that I was initially confused, but then I got to thinking that, viewed in a broader context, this “mistake” actually made a lot of sense. Janet has always cared about Catherine, though at times the emotional issues associated with HD got in the way of their being really close. Looking back, I think that emotionally Janet had a hard time saying what she felt, and this is how it is coming out now – clarified by Janet including her as a daughter for which she is concerned.

When a loved one with dementia says something you don’t understand, the immediate (and very human) reaction is to try to correct them. But this situation reminds me that to them, there may not be anything to correct. To them, the logic is perfectly clear and there is much that we can learn by restraining our urge to fix their perceptions, and simply hear what they are saying.

In other news, Janet’s weight continues to drop, and for the first time, she has slept for 24 hours straight – which did not help the weight issue. At the end of her long slumber, Janet seemed much better, so I guess she was just getting caught up. We have also gotten a new air mattress for the hospital bed to help with the problem of bed sores.

Janet is now going through periods where she doesn’t want anything to eat, and then suddenly will eat a lot all at once. Continuing a trend, she particularly likes anything that Frannie cooks for us, but I have to be careful to cut up whatever we are having into VERY small pieces. Janet is also asking for more personal contact like sitting and holding hands, saying “I love you” and the three of us praying together. The thing that breaks my heart, though, is that she is also apologizing more and more for being sick – like she has any control over it!

Something that I have often heard is that the one thing that never leaves is the anger. Well, for Janet at least, that is not the case – and I am very thankful.

Finally, I’m going to have to talk to the home hospice agency this coming week. Simply put, my back is giving out. I was diagnosed several years ago with sciatica and even using the proper techniques for moving and working with Janet that the CNA taught me, I still go to bed every night with an aching back.

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Something that seems to be coming up a lot these days is the concept of “value.”

I saw this cartoon months ago and the artist graciously gave me permission to use it here. As a good four-panel cartoon should, the first three panels set us up for what we are sure will be a warm and fuzzy ending, only to have the fourth frame jerk the ethical/moral rug from beneath our feet.

In terms of its ultimate message, this cartoon reminds me of a joke I heard several years ago about two men who were stranded on your prototypical desert isle – you know the kind: small mound of sand sticking up out of the water with nothing on it but one palm tree. One man (the pragmatist) tries to explain to the other one how dire their situation is: no food, no water, not even any shelter. But as each problem is presented, the other man simply says, “Don’t worry, I make ten million dollars a year.” Finally, the pragmatist yells, “You don’t understand! We are going to die!” To which the other fellow (who it turns out is also a pragmatist) replies, “No, you don’t understand. I make ten million dollars a year and I tithe. My pastor will find me.”

But all kidding aside, what does it mean to be of value? For as long as there have been legal systems, liability laws have had to wrestle with this problem: How do you put a price tag on something that is essentially priceless? How do you compensate a widow for the loss of her husband from (for example) an industrial accident? Obviously, there is no way to make her, in the legal sense, whole. So the law got as close as it could to a just answer and invented complex procedures to calculate such things as a lifetime of lost wages, with perhaps a bit added in for “mental duress” or “loss of companionship.”

Unfortunately, over time, society has come to believe that these calculated funny numbers really are the value of a human being. As caregivers, this is a critical issue because around the world, politicians and bureaucrats are beginning to openly question whether keeping certain people alive is worth the cost to society to do so. By the way, who do you think will be the ones to not “make the cut”? Certainly, the incurably ill and those past their wage earning years. While this attitude isn’t exactly the same as the one that drove the creation of gas chambers and mass crematoriums, it is without a doubt close.

So we must ask ourselves, what if the person whose value is being questioned is my spouse, or parent – or in a few years, even me? Suddenly this question is not at all abstract or academic. We have gone beyond actuarial tables and statistics to talk about real flesh-and-blood people – you know, the ones that the politicians like to forget.

What is disheartening for me is that I can remember a time when this question wasn’t even asked because the universal assumption was that human life is of value, all the time – not just when it is useful or convenient or wanted. Now even infanticide is on the table.

The root problem, as I discussed last week, is that only people of faith have the vision needed to see the interconnectedness that demonstrates the value of all human life. Without a perspective larger than ourselves, there is no basis for assigning worth or value to human life, and the resulting philosophy will be based largely on personal greed or authoritarianism.

Next, before closing, the passing of Justice Ginsburg has resulted in a flurry of breathless posts trying to shame people for saying things such as “Rest in Peace” or “She’s in a better place now.” Their point is that since she was Jewish, we shouldn’t be “polluting” her memory with such Christian concepts. The problem is that neither of these ideas are exclusively – or even originally – Christian. While it is true that Christians believe in (and in fact, are counting on) both of these ideas, they were also exceedingly common among the early founders of the faith who were predominantly Jewish, as well as modern day Judaism.

Finally, I know that post is relatively short, but this is a strange time in our household. I have spent many hours in tears and caring for Janet and Frannie.

In Christ, Amen ☩

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A prayer for when you are exhausted and hurting…

“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 everyday strength that you give. But today I want to bless You especially for the special strength and reassurance you provide to care for us in times of extraordinary trials. Thank you for the knowledge that darkness is always the precursor to light. Amen.”

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Music to Soothe the Savage…

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

More changes this week. Janet is only awake four or five hours a day. It has also become very difficult for her to walk because she can’t really support her own (steadily decreasing) weight. I may have to stop taking her to the bathroom. No walker, no wheelchair, just the bed.

At one time, her world was the world. She traveled to Europe, toured the US, and we honeymooned in Tahiti. Then due to this disease, her world shrank first to a single town, then to an apartment, then a room and now to an 80″ x 34″ hospital bed.

Once a teacher capable of explaining the intricacies of mathematics with precise, clearly formulated explanations, her words and thoughts are now both garbled. She is sundowning badly and spends much of her awake time confused and hallucinating. Consequently, I find myself reassuring her more and more by saying, “Don’t worry Janet, I’ve taken care of everything…” Which makes me feel like a fraud because it doesn’t feel like I have taken care of anything.

A brochure that we got from hospice presented such a comforting, peaceful view of an “end of life” process in which Janet would just quietly and effortlessly drift off into eternity. I find myself wondering where one signs up for that program. Despite everything that I’ve seen and written, I still catch myself thinking, it can’t get worse than this – and then it does…

I was talking to the hospice nurse this week, and they have a respite program where they will pick Janet up in an ambulance, check her into an in-patient hospice facility for five days, and then bring her home at the end of the stay. Hopefully, this time will give Frannie and me a chance to get some badly-needed rest and recharge a bit before the last big push. When I told Janet about it, the first thing she said was:

“What did I do wrong?”

She thought that this was some kind of punishment or “time out.” Frannie and I both reassured her that it was just a time of rest for all three of us – her included.

“Just think,” I told her, “five whole days of getting taken care of by people who really know what they are doing – and not a couple of amateurs like us.”

This end time is also a season for learning new skills. Most recently I learned how to cry silently so as to not disturb Janet.

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While the phrase “Music Therapy” may, at first hearing sound, very New Age, nothing could be further from the truth. The concept was expressed eloquently in the opening lines of the tragic play The Mourning Bride written in 1697 by the British poet William Congreve:

Musick has Charms to soothe a savage Breast,
To soften Rocks, or bend a knotted Oak.
I’ve read, that things inanimate have mov’d,
And, as with living Souls, have been inform’d,
By Magick Numbers and persuasive Sound.
What then am I? Am I more senseless grown
Than Trees, or Flint? O force of constant Woe!
‘Tis not in Harmony to calm my Griefs.
Anselmo sleeps, and is at Peace; last Night
The silent Tomb receiv’d the good Old King;
He and his Sorrows now are safely lodg’d
Within its cold, but hospitable Bosom.
Why am not I at Peace?

Although this verse documents a failed attempt at “soothing,” the concept predated the poem considerably. For example, Congreve’s line was probably a reference to a poem from the Roman poet Lucan, and Old Testament references to similar ideas (e.g. 1 Sam 16:15-16) show that the idea of music as a therapeutic agent was recognized far back into antiquity.

My first exposure to the idea came through a 1940’s cartoon in which Bugs Bunny quoted the line in his mixed Brooklyn/Bronx accent as:

Music hath charms to calm the savage beast

– which in the cartoon was a rather dopy lion. Also note the change of the last word. In the 1940s you couldn’t mention “breasts” in films – even metaphorical ones. Whether it’s Bugs Bunny’s fault or not, this is still the most common misquotation of the line.

However, the modern practice of music therapy is based on far more than folklore and literary tradition. In recent years, medical researchers have scientifically documented the effects that music can have on people’s mental and emotional states by using brain scans to track the neural signals that tell the pituitary gland to release endorphins, the so-called “feel good” hormones.

Studies have also documented music’s ability to relieve stress, decrease symptoms of depression, reduce negative thoughts, and generally improve the listener’s state of mind. One interesting discovery that is of particular significance to caregivers is that there is no single kind of music that is universally therapeutic. Depending upon the person, and their mood at the moment, nearly any genre of music can be of benefit.

Music can also aid people in self-expression, or bring to mind past experiences. But remember, not all feelings that a person can express are positive, and not all past experiences are pleasant. For example, one person I spoke with for this article shared how she was singing the John Denver song Sunshine On My Shoulders in a group setting and one of the clients started crying uncontrollably. Interestingly, this client had previously been completely shut down emotionally and unable to participate – so while whatever memory the song brought up may not have been pleasant, perhaps those emotions were what was needed to start him on the path to healing.

Note that MT can be applicable even for people who are either totally or partially deaf, in that they can still feel the vibrations or other physical sensations associated with the music (called haptics). In fact there are several websites dedicated to the use of music therapy with people having hearing deficits.

Formally, Music Therapy (MT) comes in two forms:

Active MT – This form involves the actions of a therapist playing music for and with the patient, encouraging them to play or sing along. This sort of work often, though not always, occurs in a group environment – such as a group in a nursing home where the clients are in various stages of dementia. It can be really helpful to sing songs that the people remember from earlier in life because memories of music are apparently stored in a different part of the brain than normal everyday memories and will therefore last a lot longer. Singing old songs by themselves, or in combination with the playing of instruments or hand clapping, can get a person moving and interacting with other people, which in turn helps to improve mood and health.

Note that in many jurisdictions, music therapists have certification requirements similar to the requirements for other forms of therapy, but that doesn’t mean you can’t work with your loved one on your own.

For example, a spouse knows the songs that were meaningful to their loved one and can use that knowledge to help keep them present and involved. Certainly, the same thing would be true for a parent dealing with a child suffering from a degenerative condition. Remembering children’s songs can give comfort and support by reminding them of happier times before they got sick.

Passive MT – In this form of therapy, the patient listens to music without any sort of required participation. Again, a caregiver’s knowledge of their loved one can serve as a guide in selecting the appropriate music. For example, just because a magazine or website may say that Mozart is “soothing” not everyone will find it to be so. For example, a given person may prefer Charlie Pride, The Oakridge Boys, The Beatles, Aaron Nevill or even The Brighouse and Rastrick Band – and that’s OK. It is all about what is soothing to them.

And don’t forget about religious music. Even if the person doesn’t normally listen to “church music” every day, hearing a favorite hymn or music from their church’s liturgy can be a comforting reminder of God’s love and care. Some of my most wonderful memories from growing up were from family trips, where my mother would sing to my father to help him stay awake on long drives. Hearing those hymns now never fails to bring a tear to my eye, but they also make me feel warm and loved.

For more information on any of this you can refer to the American Music Therapy Association. Their website provides links for obtaining more information, as well as a function for locating a licensed music therapist here in the US. The main thing to remember is that as a caregiver you have insights that a stranger – no matter how professional they may be – does not have.

And finally, don’t forget that music therapy works for you too.

In Christ, Amen ☩

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A prayer for when you are feeling savage…

“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 who You are. But today I want to bless You especially for a particular aspect of who my loved ones and I are. You have created us to be able to enjoy the music of others and the ability to create music of our own. Thank you for putting in our hearts the desire to make a ‘joyful noise’ in Your presence. Amen.”

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Dealing with Aggression:
Triggers and Responses

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

Due to the length of the main body of this post, and the fact that little has changed, my weekly update on Janet’s condition is foreshortened.

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Let me start this week by saying that I have been overwhelmed with the response that I received to the first half of this discussion that I posted last Sunday. That post appears to have truly “struck a nerve” with many, many people as they have chosen to publicly share their personal stories and experiences. Thank you for your openness and your concern for others.

This week we are going to continue the conversation by talking about some of the things that can trigger outbursts, and coping mechanisms that can be helpful. But first I need to make a quick Public Service Announcement.

A couple weeks ago I talked about getting lost in an “Alice in Wonderland” world of lost perspectives and identity. To address this problem, you need to cultivate a relationship that can serve as your battle buddy. In our civilian context, this person has several additional jobs. First, they will be your point of reference to help you identify when the stuff starts to seriously hit the fan. Second, they must be someone whose opinions and judgments you absolutely trust. This point is critical because there will come a time when you are called upon to make some really hard choices. Their job is to help you to remember that your focus is getting your loved one the help they need – no matter what it feels like at the moment. Third, they must have the honor to keep what you tell them in confidence – and the wisdom and bravery to know when, for your safety, they should not.

Unfortunately, just finding this person can be traumatic. I have written before that when Janet started having really bad symptoms I tried to ignore them because I wanted her to be my partner in this battle – even when it became clear that such a partnership was no longer possible. Finding this support person can feel disloyal, but let me say in the strongest possible terms that as long as the relationship is maintained in integrity, it is not.

So moving on …

What are some of the other things that can trigger violent or aggressive reactions? Here are just a few of the most common ones.

Lack of recognition: Simply put, they don’t know who you are. Despite all the memes and aphorisms about how you can’t forget love, the truth is that they can forget you. Sometimes the loss is temporary, and sometimes it is permanent. But being thrown together with someone they don’t think they know but yet exhibits a desire for emotional and perhaps physical intimacy, understandably produces fear and anger.

Progressive brain injury: Many sources of dementia are progressive – which is to say they get worse over time. The nightmarish part is that not only is your loved one’s brain dying, but they are awake to experience the full horror of it. I will never forget the looks of abject terror in my HD positive father-in-law’s eyes. At the time I didn’t understand the look, now I do.

Delusion: Dementia patients often start imagining troublesome realities. Ironically, these delusions can sometimes result from their injured brains trying to make sense of the previous two triggers. Note that delusions come in two “flavors”. One, called reasonable delusions, are things that are possible, but unlikely. For instance, “My family is trying to kill me.” The other form, unreasonable delusions, consists of ideas that are clearly impossible like, “Zombies are hiding under my bed.”

Physical problems: These are issues like poor diet or ill health from unrelated maladies. For example, bad nutrition can put undue stress on anybody, and the last thing that someone with a degenerative brain condition needs is more physical stress. In the same way, ill health in the form of a Urinary Tract Infection (UTI) is a very common trigger for aggressive behavior.

Ok, so we understand some of the things that can trigger aggressive behavior, but what are we supposed to do about it? While it’s not unusual to respond to anger and aggression with fear, shock, discouragement, confusion, feeling battered, irritation, and even anger of our own, these responses aren’t even remotely helpful, in that they do nothing to help your loved one, and make you feel rotten.

Of course we all know, or at least should know by now, that doing the right thing doesn’t always make you feel good. Would it be wonderful if it did? Someday I may write about all the good, needful things we do that can leave us feeling rotten.

But I digress, let’s talk about some good responses, but as we go through these ideas, think about how many of them fall under the broad heading of, “Do unto others as you would have them do into you.” Hence, maybe the fact that we need most of this list, says a lot more about us than it does about them. Just a thought to ponder.

So here we go, in no particular order:

Be realistic: Things have changed, and they aren’t ever going back to “normal.” I have talked about this point before, but I know that I need to be reminded. Some things are just not “fixable,” so excising from your mind the idea that you can fix the negative effects of the disease, will also remove a lot of stress – which, in turn, benefits your loved one because you will make better decisions.

Create a calm environment: Think about how to remove things from around them that are naturally upsetting. This might mean turning off the TV or changing the channel to something more calming. However, that act may not be as simple as it sounds. Recently, I saw a post from a woman who realized that one of the things that bothered her husband was watching the local weather forecasts! So don’t look for what you think is calming. Watch your loved one and observe what is calming – and don’t neglect the benefits of music, proper lights, and even the colors of the walls in their room.

Be vigilant: There is an old saying about keeping your head “on a swivel.” What it means is that you don’t want to get so fixated on one problem that you miss another sneaking up behind you. Note that this mode of behavior is not something most people do automatically. It will require conscious effort. The one warning I would offer is that one of the symptoms of PTSD is hyper-vigilance. In that case, you may need to turn things down a bit.

Don’t ever argue: It never accomplishes anything – ever. The idea that there is such a thing as winning an argument is a myth.

Watch how you talk: Speak softly, slowly, clearly, and above all, reassuringly. Remember that for your loved one, their primary, everyday emotion may well be fear. When they are anxious or afraid, you want to be the one that they run to, not the one that they run from.

Give them time: Sometimes dementia patients require extra time to formulate a response. As much as is possible, let them set the pace of conversations. I have seen Janet take 30 to 45 seconds to complete the mental processing necessary to answer a question with a “simple” yes or no response. Likewise, you can help them by avoiding open-ended questions like, “What do you want?” Finally, remember that getting irritated won’t make their brain work faster.

Include them in the solution: Repeat their words back to them so they feel they are a part of, or are contributing to, what is going on. For example, Janet worries that when Frannie and I are out to eat, we won’t eat healthy. So on the occasions when we go out, I tell her that, “…we are going to eat healthy. Thank you for helping us to remember to do that.”

Redirection: Give them something to do instead of becoming angry and aggressive. For example, you can enroll them in “helping” you do what you need to do. If they are resistant to bathing, try giving them a cloth to wash their own hands while you clean everything else.

Don’t infantilize them! Even people with dementia can tell if you are being condescending towards them, and it irritates them just as much as it would irritate you. They may be acting like a child, but don’t treat them that way. Don’t order them around but instead, guide them in discovering the needful solution “on their own.”

Talk to the doctor When a new or troubling behavior appears, be on the phone talking to the medical staff about the problem to get their advice and when necessary, medication.

So finally, there is one last topic that we need to talk about – the hardest one: institutionalization. While it is our most fervent hope and prayer that worst never comes to worst, we know that realistically, the odds are not in our favor. The best approach therefore is to have a plan, and step one is to educate yourself now. Don’t wait until there is a crisis and then try to figure it out on the fly.

First you need to know what resources are available in your area, and how to access them. Second, you need to know what the law is in your jurisdiction. Know what you are allowed to tell clergy, counselors, etc. in private. The issue here is that people can be compelled legally to contact the authorities if you confide certain things to them. Likewise, professional organizations often have ethics rules governing the disclosure of confidential information.

Remember, the point of all this preparation is that you need to be able to demonstrate that your loved one isn’t evil or a criminal, but rather that they are ill. They don’t deserve, and won’t benefit from prison, they need hospitalization. So in order to be an effective advocate for them you have to find out what information or data you will need to prove that, realizing of course that there is no such thing as “too much” data. While the specifics may vary depending upon where you are, a good place to start is with documenting everything.

  1. Get letters from their doctors describing their condition and the effects that can be expected – and make sure that it is updated regularly.
  2. Take pictures of the bruises, cuts and scratches. If you take pictures with your phone, make sure that your phone is configured to automatically stamp pictures with the time and place where they were taken. Phones can also be configured to automatically backup all your photos to the cloud. Make sure both features are turned on.
  3. Keep a notebook where you make dated entries describing things that happen. These are called contemporaneous notes and are highly prized in court.
  4. Tell people what is happening – even if they don’t believe you. These are called contemporaneous conversations.

So there you have it, or at least the basics. All I have left to share is one last word of encouragement.

No matter how hard or painful the journey is, no matter how permanent your current tribulations feel, know that all of this is temporary. However, you need to also remember that our lives are ripples in the pond of the time. Hence, what happens now – and how you respond to it will have repercussions for years, and perhaps centuries to come.

So while it’s true that 100 years from now in 2120, your multiple-great grandchildren will likely know as little about your pain as you know about your multiple-great grandparent’s problems in 1920, the larger truth is that they will still feel the effects of your actions.

Through faith, this fact can be reassuring or without it depressing – it’s your choice.

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

“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 being eternally present. But today I want to bless you especially for the part that you have given me in forming the eternal future. Guide my hands and direct my words to accomplish Your good works. Amen”

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Dealing with Aggression:How Big is the Problem?

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

There’s a lot of good news this week. Janet is sleeping and eating better and I think we may have gotten past the hurdle of Janet deliberately doing things that she knows are wrong.

First, the hospital bed that I mentioned last week is working wonderfully! She is, understandably, resting much better. Second, we have lowered the thermostat for the air conditioning from the normal 84° to a more moderate 79°, thus making the apartment more comfortable generally.

These two changes are, in turn, interrelated. It turns out that Janet’s resistance to a hospital bed had nothing to do with her sleeping “just fine” on the sofa. Likewise, she wasn’t “getting cold” if the thermostat was set below 84°. In both cases, the real problem was money. She was afraid that we couldn’t afford a new bed for her, or more air conditioning because at my old job, there were a few months when things were pretty tight. However, I have been at my new job for over a year and a half.

The way that the money issue came to light was through the ministrations of the visiting Certified Nursing Assistant (CNA) from the home hospice organization. When she came for her visit Friday, she had a long conversation with Janet that ended with Jan admitting the truth as to why she was resistant about hospital beds, air conditioning, using her walker (she was afraid that I had spent too much on that too). As icing on the cake, the CNA also got her to admit what I had long expected, that she was resistant to following instructions because she had been independent her whole life and was afraid of becoming dependent upon others.

I’m not sure how I feel about those revelations: Happy, irritated, relieved, upset – all the above and a few more besides? The feelings are definitely mixed. Things are better – which is a positive, but I feel irritated and sad that she put herself through this added stress and didn’t even mention it…

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An unfortunate aspect of HD and most other diseases causing dementia, is that anger and aggression are very common. On the support forums, these symptoms are depressingly common. It matters little what the underlying condition might be, where you find dementia, you find problems with violent behavior. Often the amateur family caregivers get stuck dealing with it because the professionals (nursing homes, memory care facilities, etc.) simply refuse to be involved. I have been told by nursing home administrators that they don’t accept Huntington’s patients because they are, “…too violent.”

Similarly, my mother who suffered from dementia as the result of two strokes was nearly evicted from a local nursing home for being too aggressive verbally. Really? She was a 84-year-old woman who couldn’t get out of bed by herself, and your staff was concerned for their welfare? Give me a break.

Still, it is an issue that is out there so I decided to look into it and found an amazing amount of potentially useful information. In fact, there was so much good information that rather than trim it down and possibly leave out something important, I decided to cover it in two parts. This post discusses aggression, some of the non-obvious concerns, and how common it actually is. Next week we’ll talk about causes and coping techniques.

Please note that while some of the following sources are HD-specific, similar research exists for all sources of degenerative dementia. In any case, the basic principles are the same.
I’ll start with a 2014 paper by C.A. Fisher, et al, Aggression in Huntington’s Disease: A Systematic Review of Rates of Aggression and Treatment Methods. Published in the January 2014 issue of the Journal of Huntington’s disease, this article summarized the contents of 23 research papers, published around the world, and came up with some stark results. For example, it concluded that:

“Aggression is one of the primary causes of hospitalization in this population, is associated with higher rates of nursing home placement, and places family members, carers and other clients at risk of assault.”

So how common is it exactly? In the research that they covered, the incidence of aggression ranged between 22% and 65%. An interesting point the authors made to explain this wide range was that studies involving patients that had only recently been diagnosed tended to have the lower numbers while the high end of the range came from patient populations that had been diagnosed 10 years or more previous – or to put it another way, the longer the patient survives, the greater the chance that they will exhibit significant aggression.

By the way, this observation correlates nicely with one generic dementia study I found that pegged the incidence of aggression in the end stages of the disease at greater than 80%.

So when we’re considering aggression, what behaviors are we talking about exactly? Everything from angry words, to temper tantrums, to physical assaults. The research paper I referenced earlier uses this definition:

“…any behavior that attempts to inflict uninvited force, harm, or damage to a person or inanimate object, or verbal behavior that is delivered in an intimidating manner (swearing, yelling, shouting, insults or threats).”

I’m glad to see that they included “inanimate object” in their definition. Why? Well, Janet and I used to have an album of wedding pictures – but no more.

In the HD world, a number of tools exist to help doctors and other professionals in identifying aggression in a clinical environment. Two of the most common are the:

  • Unified Huntington’s Disease Rating Scale (UHDRS)
  • The Problem Behavior Assessment for Huntington’s Disease (PBA-HD)

But clear winner of the prize for cool and suggestive acronym is:

  • Rating scale for AGgressive behavior in the Elderly (RAGE)

Over the years, Janet and I have participated in several such evaluations. A big problem with these tools, however, is that they were typically administered while both Janet and I were present. Consequently, there were times when I was left with the choice to either:

  1. Tell the truth and deal with 45 minutes of yelling on the ride home.
  2. Lie like a rug.

In the end, I did a bit of both. It would be nice if doctors, and especially medical students doing a neurology rotation, understood that asking a question like, “Has your spouse ever been physically violent?”, while the spouse is sitting there is not a good thing…

Of course when Janet was going through her violent phase, I didn’t need forms and scorecards to understand that there was a problem. All I had to do was count the bruises and scratches on my body. This is from when she grabbed my right arm with her nails. You can clearly see the marks from 3 or 4 fingers and her thumb.


So if you are just starting out on your caregiving journey, or even if you’ve been on this path for a while, how do you even begin managing this kind of risk?

As with most things in life, forewarned is forearmed. The first thing, therefore, is to make sure that you are squared away between the ears by setting your expectations appropriately. To be clear, our goal is to prepare for the worst case scenario, but pray for the best case scenario (in which many of the preparations we make will never be needed). If this sounds like we are getting ready to go to war, well guess what… we are.

One of the blessings – and one of the dangers – is that the aggression doesn’t happen all at once. Like that proverbial story about the frog in a pot of water, the “heat” sneaks up on you. They don’t just wake up one morning as a violent tyrant. Or if they do, it probably isn’t due to dementia, and is therefore treatable. Dementia-related aggression starts slowly, with an illogical argument that isn’t particularly intense, and proceeds step by step from there. This progression means you have time to adjust and learn. But it also means that you can miss what is happening.

Perhaps this slow change is why our families can be among the last people to recognize that a problem exists. Sometimes it’s a matter of people having trouble letting go of remembered images of the past, and understanding the gravity of the situation. For example, it can be hard to get your head wrapped around the idea that “the sweet little boy” who used to sit on your lap and play, is slapping his mother around or threatening her with knives.

To be honest though, other times it’s a matter of willful ignorance. To avoid having to face either the unpleasant truth that a disease can be this horrific, or their own responsibility to take action, family members will sometimes jump to the conclusion that you must obviously be doing something to “provoke” the person. To make matters worse, even you can fall into the trap of thinking that everything must be at least partially your fault because, you reason, nobody in their right mind would act like that unless they were being provoked. But therein lies the rub: they aren’t in their right mind.

Please be clear on this point: Nobody is perfect. So as a caregiver, you will make mistakes – I personally have made some doozies. The thing to remember is that saying you are never at fault, is as wrong as saying that you are always at fault. Falling into the trap of either extreme has dire effects on both your health and the quality of care you can provide your loved one.

Sounds easy to say, doesn’t it? The normal human condition is to be sucked into one of the extremes like an errant planet losing its identity in the gravitational abyss of a black hole. Although the emotional “black holes” that threaten us are metaphorical rather than astronomical, they aren’t any less real. In fact, in terms of our immediate experience, they are far more “real” than some anomaly of physics light years away.

So next week we will get into the immediate causes of the aggression, and how to deal with them. For now, avoid the traps by remembering that the truth in this case lies not in either/or (good vs bad) but in the realm of both/and: I am not as good as I should be, but I’m also not as bad as I could be. We are all – caregivers and care receivers alike – works in progress and so are all (in the words of the song) “Stumbling To Bethlehem”.

In Christ, Amen ☩

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A prayer for when you are stumbling along…

“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 Your grace and love. But today I want to bless You especially for knowing me even when I’m not sure that I know myself. Thank You for not giving up on me. Thank You for keeping my feet on the path, even when the way is dark, and I can’t feel Your hand. Amen.”

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What is the Point, Really?

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.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week Janet fell again – twice. According to her, she is totally wheelchair bound because she can no longer use her walker. Okay, fine. Except her solution is to not stay in the wheelchair and call Frannie or I when she needs help. Oh no, her solution is to try and walk where she wants to go without the walker! In her mind, the walker no longer works for her, so she just stops trying to use it. In fact, according to her, the walker is why she fell the last time. She said that she tripped over it. Unfortunately, she fell in the hallway and the walker was in the living room, two rooms away!

This whole situation really worries Frannie because she has a friend whose mom fell, broke her hip, and died in the hospital. Consequently, Frannie is scared – and not without reason. With the current panic about this virus, if Janet does fall and has to be taken to the hospital by an ambulance, Frannie might not get the chance to ever see Mom again, dead or alive.

So for now, Frannie and I will watch Janet more closely and try to keep her in her chair.

This week I have also been revisiting the topic of retirement – and unfortunately my own words have been coming back to haunt me. Many years ago, when our son was in Boy Scouts, I taught a financial planning merit badge class. During that class, we discussed looking for their life’s work. A point that I made was to always start the search from what you enjoy doing. My reasoning was (and is) that we are all here to fill a particular niche in the world, and because God loves us, He will put into our hearts a love for doing whatever it is we are here to do.

One of the boys asked, “But Mr. Porter, what if you can’t earn a living doing what you love doing?” In response I said, “Look, if a bunch of good ‘ol boys from down south that loved to fish can figure out a way to spend all their time fishing – and get paid to do it – you’ll figure something out!”

Those words were so easy to say, but how to put them into action? Now I am the one trying to figure out my future. To wit, how do I maximize my time at home taking care of Janet, while doing what I love (writing)?

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I feel I should start off by apologizing ahead of time in case the following conversation devolves into an emotional rant. This week it seems like I have been inundated with absurdist comments – or at least comments that from the Christian perspective, are rather absurdist. What makes matters worse is that some of the comments are coming from ostensibly Christian organizations. Consequently, I feel particularly uncomfortable with the direction in which things seem to be going.

Before the pan(icked)demic took hold, caregivers were under-appreciated and overwhelmed – but at least there was no hostility towards us. Over the past few months it feels like things have changed. It’s like people have turned off their brains and are all reading off the same script. I’ve been asked, “Don’t you care? You could bring the virus home and your wife could die.”

Sometimes, I feel like tapping them in the middle of the forehead with my forefinger (really hard) and yelling, “Hello? Anybody home? She has HD, she IS dying.” Sometimes, I feel judged by people who have no idea what is going on with Janet and seem unwilling or unable to grasp the implications of her disease. Looking back, I realize that there is only one thing that has remained constant in the time since Christmas: Janet is tired and wants to go home to be with God. Every day is painful for her, every day is torture as she feels herself melting away, and like an injured animal she just wants to curl up and hide. Who knows? Maybe those feelings are the root cause behind some of the behaviors that seems so willfully self-destructive.

Of course in the grand scheme of things, HD, with its 30,000 diagnosed cases, is not really very significant. But there are many other terminal diseases. At least people dying from cancer (like Lewis’ wife, Joy) can know and understand what is happening. However, do you have any idea how many different diseases can cause dementia? Those poor souls don’t know and can’t understand what is happening, so they die alone, deserted and isolated from everything that is familiar. Who of us can relate to that level of despondency?

However none of those facts matter in the slightest to the people with the scripts. They just read from the carefully typed-out and focus-group-tested talking points and no deviation is to be tolerated! Conform or be publicly shamed.

And then there are those who try to make it sound like they are concerned for you and your welfare. Admittedly I am old, but I can remember when the predominant feeling was that you deal with what life hands you, and just keep moving forward as best you can with God’s help. Now it seems like everywhere I turn there is someone telling me to just, “…say a quick prayer, and move on…”. The point of that particular post from a “Christian” organization, was that if you dwell on someone else’s problems it will drain you emotionally. I’m not saying that helping others doesn’t drain you emotionally, because we all know that it does, but their post was saying that we should use that effect as an excuse to not be involved in the lives of others – which is clearly wrong.

I once saw a cartoon where a lawyer was reading the will of a wealthy man to the “grieving” relatives who were presumably waiting to get their cut of the inheritance. The will started: “I John Smith, being of sound mind, spent it all before I died…” A real-world example of a similar attitude was Andrew Carnegie. While he accumulated unimaginable wealth as a young man, in later life, he started systematically giving away his vast fortune, to the extent that by the time he died he had little money left. And what did he use his money to build? Colleges, universities, but mostly libraries! I don’t know about you, but I grew up going to a Carnegie Library. Later, I was surprised to learn that there were actually libraries in the United States that he didn’t build. You see, in small town America, the words “Carnegie” and “Library” just went together.

That is sort of how I see things spiritually. I have been blessed with certain resources and, as in the parable of the talents, those resources are to be used. When those resources are used well, there is gain. But remember the words to the servant that just sat on his gift and hoarded it – he was called “wicked” and “lazy.” In sports, they use slightly different imagery. They say that if you have anything left when you get back to the locker room, you didn’t play hard enough. At the end of the day, that is what I want for myself: I want to be able to say that I “left it all on the field” – and if that makes me look irrational in the eyes of some, so be it.

In Christ, Amen ☩

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A prayer for when you are feeling tired and irritated…

“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 consolation you provide. But today I want to bless you especially for the gifts and resources that You furnish to Your children. You always send me out into the battle well-prepared. Thank you for always giving me what I need, even when I don’t realize I need it. 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”