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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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For the Men Folk

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 stopped eating. As I write this, Frannie and I have been able to get her to eat some soup from an Italian restaurant, but there were days when she didn’t eat at all. Her weight is below 100 lbs. How long can someone with such a low body weigh last with no – or at very little – food?

Janet and her Dad
This picture is of Janet on our wedding day with her father (from whom she inherited the gene). I have always loved this picture because it shows the little “derby” that went with her tulle veil – though to me it always looked more like a small white cowboy hat.

Janet has started taking naps in the middle of the day; in fact, she’s sleeping almost non-stop now. Friday morning we had a meeting with a hospice nurse, and she has been accepted back into home hospice, so we will be receiving visits from a home health aide three times a week. Later that day we took delivery on her hospital bed (which she loves) and some other miscellaneous equipment.

The only remaining question is how long will she be needing them?

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When I first started coming to the support forums, the first thing I noticed was that the demographic of the participants was overwhelmingly female. To me this fact was curious because I knew that HD affects men and women in equal numbers. Therefore, it seemed logical that there should be about equal numbers of male and female participants on the forums.

At Janet’s next HD appointment, I talked to the clinic’s social worker and related my observation. Her reaction was, “Oh yes, they have done studies and it’s a real thing. Male caregivers rarely reach out for support, and male patients with no woman (wife, daughter, etc) caring for them also don’t get the support they need.”

Ok, but is that observation accurate? Well, as they used to say back in the 60’s, “It’s a mixed bag.” On a gross level, my feeling about numbers was pretty close. An organization called the National Family Caregivers Association did a study a few years ago across all chronic conditions and determined that in the US there are about 54 million people who are serving as primary caregivers for a family member. Of that number 44% – or just shy of 24 million – are men.

But therein lies a problem. If the social worker is right that men just aren’t getting the support they need, guys should be dropping like flies, but statistically speaking, we just don’t see that happening. So it would seem that we men are getting the support we need, but it looks different. That realization, in turn, got me wondering: what other things do men do differently in a caregiving situation?

But before we go any further, I need to issue a couple warnings:

  1. Generalizations: There are a lot of them coming up. The point is not to try to force people into boxes with roles to fulfil. Rather, learning about generalized behavior can be a path to self discovery because, even if the fit isn’t perfect, it can nevertheless give you insight into how you behave and react.
  2. Exceptions: Yes, there are always exceptions. This point sort of goes with the previous one about generalizations. People are not stereotypes, so if you don’t fit the mold: Good for you! Celebrate the parts of you that don’t fit the pattern. Often I find that those “ill-fitting” bits are actually gifts that make me better suited for what I need to do.

So starting with the question of where do guys get support, we need to recognize that “support” can look very different for men.

To begin with, it is a well-recognized fact that men are not “joiners” – meaning that associations outside their inner circle of family and friends tend to be transient. In discussing this tendency, psychologists often like to think in “evolutionary terms” and so will wax philosophical about wandering bands of nomadic hunters meeting by chance on the vast Serengeti plain and agreeing to temporarily work together to bring down a mammoth, giant sloth or something.

For me, though, it matters little whether this trait was “evolved” into men, or as I feel is far more likely, consciously put there by our Creator. The point is that the support structures for men clearly tend to be less formal and more ad-hoc. Consequently, it is reasonable to have fewer men willing to “sign up” for a support group, and for fewer still to actively participate.

But, if support doesn’t occur in formal groups, where does it happen? Sometimes in a tree stand when there doesn’t appear to be a deer in 100 miles of you. Sometimes support occurs in a boat in the middle of a lake, when nothing is biting. And sometimes it happens during a lull in an oil change, or over a beer while you’re enjoying the pleasant coolness of dusk and watching the sun go down.

While, there will be those that will complain that the last paragraph was written from a rural North American (i.e. red-neck) perspective, the point is that support happens in unpredictable and unplanned ways. Support can also occur at work, in a pub or cafe, or riding on a commuter train.

Next, it should be noted that, paradoxically, many men will only argue with close friends. Why? First, it’s because the only opinions that most guys really care about are those of their friends. Why get into an argument with someone who’s opinions you don’t respect?

Please note that in making this statement I am drawing a distinction between having an argument (or making an argument), and just yelling at someone. It’s the difference between having a “meaningful dialogue” and “sending a message” – a thoroughly offensive cliché, by the way. For completeness sake, I should point out that there is also something called expository speech where someone is trying to convince someone of something. In this framework, expository speech falls somewhere between arguing and yelling at people – exactly where it falls, depends upon the topic and the speaker!

Secondly, men argue with friends because it is safe to do so. With a friend you can disagree and shout and yell, but you never have to worry about losing that which is really important: your friendship. This point is so important because the best conversations occur when personalities, identities and ego aren’t involved.

Therefore, among men, expressions of friendship can be more (How shall I say this?) “abrasive.” For example, once while I was in the Air Force we once flew into an Italian Air Force Base outside of Pisa. Two local civilians came out to service our plane and got into a disagreement with each other about something. Soon they were toe-to-toe screaming at each other and gesticulating wildly. Concerned, I asked another one of the other ground crew whether we should do something.

“No,” he said, “they’re brothers-in-law. They always yell at each other. They’ll be fine.”

And they were, I saw them a hour or so later laughing and joking over beers.

In a similar vein, it should be remembered that it was men who invented “snipe hunting” and many similar “bonding” exercises…

There are also differences in the way men approach challenges, in that we are problem solvers. We like to approach challenges logically and dispassionately because it is built into our DNA to react in that way. For us our #1 goal is to, “work the problem.” Hence, we try to shut out everything that isn’t part of the solution – including emotion.

So you see, it’s not that we don’t care, but rather it is precisely because we care very deeply that we appear to shut down emotionally. Perhaps this is the reason that men are so good at handling crises. Of course the other side of that coin is that we try to bring that same level of intensity to the management of chronic situations, so we tend to burn out (a lot) faster.

So where do I fit into this puzzle? Well remember what I said above about “generalizations” and “exceptions?” When I was a kid we would go to visit my Mom’s family in Iowa (a little town named Morse, near Iowa City). At these family gatherings, the men folk would, depending upon the season, congregate in either the living room or on the front porch. They would talk about cars, tractors and the price of hogs and corn – all important things to know about if you live in Iowa.

But the women – my Mom, grandmother, and always a couple aunts or great aunts – would gather in the kitchen and talk about things that sparked my imagination. They would have wonderfully loud, joyous conversations. In some ways, fixing dinner was like a religious ceremony because everything meant something.

For example, there were the holy relics:
“That’s your great-great-grandmother’s roasting pan.”

And rubrics:
“Always stir cake batter to the right and never reverse directions – it will spoil the cake.”

History lessons:
“Did you know, when I first started teaching, teachers weren’t allowed to be married?”

And applications for daily living:
“Don’t use all the buttermilk! Pappy will want some to sop his cornbread in after dinner.”

The bottom line is that dinner wasn’t just about food, it was about telling and retelling for the millionth time the story of who were. So I guess while I unabashedly exhibit many of the male traits mentioned above, thanks to the strong women that were around me as I grew, I have also come to wear my heart on my sleeve, at times rather more than what is comfortable.

Because I understand how remembered stories and traditions can hold us together when times are hard, I may someday share some of those stories. I may write about my grandmother who was a teacher in a one-room schoolhouse, and often said that the main thing you learned in a one-room school was how to be a good citizen. Or I might talk about her sister, my Aunty Butch (pronounced to rhyme with “hutch” or “crutch”) who gave up the chance of having children of her own to protect her best friend’s children from an abusive father.

We’ll see…

Finally, we need to understand that culturally, men are horribly ill-prepared for the role that they find themselves in when caring for a dying spouse. Think about it for a minute, little boys and little girls get dramatically different messages growing up. Little girls growing up see, modeled in the lives of perhaps their mother, but certainly their grandmothers, and ladies that they know socially, the truth that someday their husband will die and they will be alone again.

This fact is borne out by insurance actuarial tables, and even government statistics. The US Census Bureau has pegged life expectancy in the US at 77.1 years for men, and 81.9 years for women. While that knowledge certainly doesn’t make it any easier for women, when their spouse dies, they at least have role-models in whose footsteps they can follow.

But now think about little boys and the message that they get growing up. They witness the same world, and read the same statistics but have a very different reaction. I have to be honest, when Janet and I got married I didn’t hear the pastor say, “Till death do you part…”. What I heard the pastor say was, “You are going to be married to this beautiful woman for the rest of your life.” I mean, that’s the way the world works right? There’s a law about that or something … isn’t there?

For me, this point is getting to be very, very real. As I stated earlier, Janet is eating less and less, and sleeping more and more. What’s more, I know how this movie ends: one day I’ll go downstairs and she won’t wake up. Then what? The only widower that I knew personally was a great-uncle who started trying to act like a teenager again – it was embarrassing.

When our spouses die, men don’t usually have the benefit of reassuring role models to fall back on. Yet even in that dark time, we aren’t ever really alone. Even when the world seems upside-down and tilted off-center, even then we worship Emmanuel – God With Us.

In Christ, Amen ☩

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A prayer for when you are wrestling with what happens next…

“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 foreknowing wisdom. But today I want to bless You especially for the certainty that I can have that, even without role models, everything will work out as it should. Amen.”

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Mirages

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…

Janet is continuing to eat less and less. This week on Facebook, a memory picture came up of Janet back when we could go out to eat. At the time of the picture, we had gone out to a Cajun restaurant here in Houston and she probably weighed 185 lbs., or thereabouts. Now she weighs 100 lbs., give or take a bit.

Lately I have been thinking about the past and our life together – a lot. For instance, I have been remembering when she was pregnant with our son (our first child) and we were trying to spruce up the house that we owned in Norwood, Massachusetts. It was during that effort that we learned the “joys” of such things as removing horsehair plaster and working with turn-of-the-century electrical systems.

It was also during that remodeling effort that Janet got it into her head that what the house really needed was a fresh coat of paint.

Now the thing to understand is that while the house itself was only two stories high, due to the way the land sloped and the way the basement was laid out, the second floor in front was actually nearly three stories off the ground.

So we bought the paint, a spray gun, a ladder and all the other miscellanea that one needs when one is going to paint a house. After we got all the stuff home, I discovered that Janet expected that SHE was going to paint the house. When I tried to point out (quite reasonably, I thought) that she was eight months pregnant and shouldn’t be climbing up and down ladders, she pointed out that I needed to mind my own business. After all, she had painted a house before – even if that house was a single-story bungalow.

In the end (I thought) we agreed that she was not to be climbing up and down ladders. Moreover we would get professional painters to handle the eaves of the second floor, which were a full three (scary) stories off the ground.

But 2 days later, I got home from work and there was my very pregnant wife painting the second story eaves. Never did figure out how she got the ladder up that far…

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A basic truism today is that much of society is consumed with the issue of identity. And like so many things, people today have paradoxically redefined the word. Rather than meaning who you are personally, it is seen as a way of indicating what group you belong to. Don’t get me started on that degenerative practice!

But even when the word is used properly, it’s crazy some of the ways in which people choose to identify themselves. For example, when growing up I had an aunt who took great pride in identifying herself as a [blank] of the Rockford Illinois, [blank]s. I guess we were supposed to be impressed.

Then in the 60s and 70s, identity became something for which you had to search – often in exotic locales. In fact, it became something of a cliché for someone to say they were taking a trip or undertaking some other kind of experience in order to “find themselves …” Over time, as the baby boomers grew older and became more settled, the story evolved into one of a successful, but unhappy, person abandoning their comfortable life and taking up a quest to figure out “…who they really are…”

A popular subgenre of this type of story concerns a successful professional person who thinks that they have life pretty much figured out, but for some contrived reason, moves from the city to the country (or vice versa) and there discovers “…who they really are…” – often in tandem with a new love interest. Here in the US, there is an entire TV network (called The Hallmark Channel) dedicated to broadcasting seasonally-inspired versions of this story 24/7.

While a key part of all such modern fairy tales is the idea of making a clean break and starting over, reality has an unpleasant way of intruding. Even if you aren’t a successful professional, you can find yourself being forcibly evicted from your warm, safe, comfortable rut. When my wife first got sick, she did some counseling where she was advised to remember that, “You aren’t your disease.” And for a while, I guess that was true. But as time and the disease progressed, it became increasingly difficult to maintain that facade.

Moreover, it wasn’t just Janet that was going through changes. I was desperately trying to figure out where our life was going. Consequently, there were two identities in a constant state of flux, but what are the odds of two erratic lives staying connected the way they had been before?

In my own experience, as well as those of others, it is not uncommon to hear someone invoke or describe an “Alice in Wonderland” feeling. For instance, at one point, as Alice wanders about trying to find her way, she encounters a hookah-smoking caterpillar.

Alice and the Caterpillar
Alice and the Caterpillar

“Who are you?” said the Caterpillar.

This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I – I hardly know, sir, just at present – at least I know who I was when I got up this morning, but I think I must have been changed several times since then.”

“What do you mean by that?” said the Caterpillar sternly. “Explain yourself!”

“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.

“I’m afraid I can’t put it more clearly,” Alice replied very politely, “for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.”

Whether you are a patient or a caregiver, that is the haunting question – “Who are you?” – even as society imperiously demands that we explain ourselves. Moreover, we seem surrounded by things offering hope for our sad condition, each bearing helpful little tags reading, “Eat Me!” or “Drink Me!” Little wonder the 60’s drug culture fell in love with the book.

One pill makes you bigger,

One pill makes you small,

And the ones that mother gives you,

Don’t do anything at all.

Go ask Alice, when she’s 10 feet tall…

Jefferson Airplane (White Rabbit 1967)

Like Alice (and perhaps Grace Slick), we sometimes feel so big that we are the unwelcomed center of attention, while at other times we feel small, insignificant and ignored. And yes, being so many different sizes in a day is very confusing.

The basic problem is that we always define our identity, who we are, relative to something or someone else. My aunt derived her identity relative to her ancestors and their perceived social standing. People who went out trying to find themselves were searching for an identity based on novel experiences that were bigger than the familiar world they grew up in. The folks in the Hallmark Channel movies are simply exchanging an identity based in one set of professional and personal relationships for one based in a different set of professional and personal relationships.

But those relationships are the identity’s vulnerable spot. If something happens to the relationship, the identity or identities deriving from that relationship crumble. And what is there that isn’t susceptible to loss and decay? Marriages end in divorce or death, siblings are lost, children grow and move away for lives of their own, careers end, pets die, and organizations come and go – or change beyond recognition.

As far as the eye can see, everything around you, animate or inanimate, has a life span, a service life, an expiration date, a timeout, a proper season, or a shelf life.

So I might say, “Ok, if that’s the game – I choose not to play it!” Unfortunately that strategy doesn’t work either. Even if I eschew all contact with the world and become a hermit, I am still defining myself in relation to the world – in this case a world in which I don’t wish to participate. But that identity is as vulnerable as any other. Remember the classic children’s story Heidi? All it took was for a little girl to wander in and demonstrate that the world is not so terribly horrible and the grandfather’s identity as a curmudgeon is blown sky high.

So to recap, nothing around us is permanent and we can’t even “opt out” of the predicament. So is there no hope? Are we doomed to an endless cycle of traumatic relationship collapses and identity rebuilding exercises? No, there is good news to be had. The simple (though far from easy) solution is to base our identity on a relationship that is unshakable and indestructible to the point that it can survive anything – even death.

“But,” you might object, “didn’t you just say that everything around us is impermanent?”

Actually, what I said was, “As far as the eye can see…” Maybe we need to try looking where the eye can’t see.

“Sounds like we are back in ‘Wonderland.’”

Hardly. If you think back, last week we talked about the different reasons that people might have for running a race. One person ran as an expression of who he was as a human being. However that statement means more than simply identifying with a particular skill, which can obviously fade over time. For this runner, it meant that he ran because the skill was a gift that God had given him. Hence, he focused on God and giving Him pleasure by using that gift to the fullest extent possible. So while one gift might fade over time and be replaced with another, the runner’s identity remained untroubled and at peace because it was based on the identity of the Giver, the One who is never ending, and Who is constant.

There is our way forward: An identity that is based on God and His intent in creating us. As I have said many times in the past, whether you are the patient or caregiver, what you are experiencing is not random. There is a point to it all, and that point is to transform you into the being you were created to be.

By the way, as Moses (משה רבנו) discovered at the burning bush, God has a really good answer to the question “Who are you?” He simply said, “I am. I am the One who is.”

In Christ, Amen ☩

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A prayer for when you aren’t sure who you are…

“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 also being the basis for the ultimate reality of who I am. Help me to discern the difference between who I am and the temporary labels that I get from the world. Amen.”

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What is Success?

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 seems to be going through cycles where one moment she wants to be left alone, but the next, she wants to be involved in conversations and decisions. In fact, Frannie is experiencing increasing upset over Janet’s “eavesdropping” on conversations and then trying to participate in them – even when it’s clear that she didn’t really understand what she heard. I seem to be back in the mode of getting between the two of them to prevent verbal altercations.

Another thing I have talked about in the past, that bothers Frannie greatly, is Janet’s refusal to use her walker. I have come to realize that short of tying her down, there really is no way, as a practical matter, to stop her from getting up and toddling around the apartment. It strikes me that perhaps refusing to use the walker is her last act of rebellion.

Come to think of it, that word pretty well sums up Janet’s life: “rebellion.” Whether spiritually, politically, educationally or any other way you can name, Janet has always seemed to have her BS detector (on a scale of 1 to 10) hardwired on 11. She has left churches over misbehavior of clergy. Over two election cycles, she worked tirelessly for Perot. Even in her current diminished cognitive state, she still talks about his prescience in seeing where previous administrations were taking the country.

I have written before about how, when she was teaching in public schools, she tailored lessons for individual students. But she also cared about the small stuff. For example, Janet is from Massachusetts and for those of you who have never been there, yes, they do talk funny. But Janet was always careful to model correct pronunciation. In fact, one of the ways I could tell she was ill was if, in response to the question, “How are you feeling?” she would say “mediocah” (mediocre).

But Janet was always a rebel with a cause. She never believed in tearing things down simply for the pleasure of seeing others fail. For her, there was always a reason for her rebellion: to make the world a better place.

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The post last week 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, in the context of caring for someone with a terminal 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 for someone with a terminal illness? 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. Consider: a foot race has a clearly defined beginning (the starting pistol goes off), a predetermined length, a precise end (when the runner breaks the tape at the finish line), and 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. We talked about the lack of a definitive end last week.

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 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 he lived, Abrahams had a very different reason 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 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 it called for 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 isn’t 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/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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Brain Drain

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…

Janet seems to have made peace with the security cameras. In addition, she has accepted the need to wear the medical alert buttons. So much so, in fact, that she is now reminding me that she needs to exchange pendant for wrist strap or vice versa.

Emotionally, Janet is continuing to grow calmer – even when Frannie gets angry with her for not using her walker. Just today, after weeks of wanting to be left alone, she told me that she was lonely and that she loved me.

Unfortunately for all the gains in other areas, Janet still resists using the walker. This resistance is troubling because, when standing, she is constantly weaving back and forth. But perhaps that it is her final act of defiance to the disease that is killing her. I have the growing conviction that Janet will not be one who slowly fades away. Rather, in the words of Dylan Thomas, she will:

“Rage, rage against the dying of the light.”

From my Janet, I would expect nothing else…

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First used in the UK at the end of World War II, the term “brain drain” described the flight of European scientists and technologists to North America – typically the US. For example, much of the early US space program was populated by German expatriates who got their start building V2 rockets for the Nazis. Following the first successful launch of a V2 (that landed in London to devastating effect), Werhner Von Braun was heard to comment to a colleague, “The rocket worked perfectly, except for landing on the wrong planet.”

The point is that while the desire to leave a war-torn continent is more than understandable, the effect of this brain drain was to deny European economies access to some of their brightest minds, just at the time when they were most needed.

On the support forums I follow, I see an analogous problem – at the end of their personal “war” against a particular chronic terminal illness (i.e., as soon as their loved one succumbs), the caregiver often leaves the support forum.

Again, this desire is an understandable reaction: after all, people can be exhausted from years or even decades of caregiving. Alternatively, with their loved one dead, perhaps they feel like they no longer belong, or maybe they feel like they have nothing more to contribute. However, regardless of the reason, the choice to leave does have consequences.

The most drastic consequence for the former caregiver is that simply dropping everything and “retiring” can kill you. As a case in point, consider the life of General Daniel “Chappie” James.

Gen. Daniel “Chappie” James Jr.
Gen. Daniel “Chappie” James Jr. (U.S. Air Force photo)
Known for a deep and abiding patriotism that manifested itself in exemplary service to the nation, in 1975 he became the first African-American to reach the rank of four-star general in the United States military. His career spanned from World War II (when he helped teach some of the famed Tuskegee Airmen to fly) through Vietnam. He retired January 31st, 1978 after 35 years of honorable service, at the age of 58. Just three weeks later, he died of a heart attack on February 25th. The consensus at the time was that retirement killed him. As a result of his untimely death, the Air Force instituted a mandatory training program for all retiring senior NCOs and officers to teach them how to be retired.

But, short of death, there are other problems as well: the person leaving could be abandoning a source of support just at the time when they are going to need it most. The type of support you need might change (ever so slightly) but the need doesn’t go away. Others may have a different opinion, but to my mind, caring for a loved one with any sort of chronic terminal illness initiates you into a family with ties that outlast everything, including death – maybe, especially death.

So even though my Janet is currently still alive, I had to confront this same issue as I compiled these blog posts into a book. Specifically, I had to decide what to do about the fact that the story didn’t seem to have an ending yet. In fact, a couple publishers asked me rather pointedly about that narrative “problem.” Specifically, they wanted to know how I could publish a book with no ending?

To answer that question for the publishers (and the readers too) I wrote this in the book’s Epilogue:

… such an ending (Janet’s death) would be, in a sense, totally arbitrary in that it won’t really be the end of the story. In that respect, I am reminded of the war-time words of Winston Churchill: “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

Indeed, as long as anyone remains alive with this sort of disease, there will never really be an end because the world is like a still pond and each life that God drops into it produces ripples. These ripples, in turn, interact and produce unseen effects long after the lives that created the ripples have passed from human memory…

So given all that, how do you specify an “end” that isn’t totally arbitrary?

Like the television signals carrying the original live broadcasts of “I Love Lucy” and “The Honeymooners” out into the universe, the ripples of Janet’s life will continue to expand outward causing new, ever more distant effects. This is why, for myself, I have made the decision to keep writing after Janet’s death and to continue for as long as God gives me the words to say, the strength to type and the eye sight to find the keys (I do not touch type – I’m more of an advanced hunt-and-peck kinda guy).

Finally, I would be remiss if I failed to point out that the loss of participation also impacts the groups themselves in a very predictable way: loss of expertise and knowledge. When someone new joins, they have a few common questions that boil down to some pretty basic concerns:

  • What happens now?
  • What’s going to be the impact on my loved one?
  • How bad will it get?
  • I’m afraid. Is this survivable?
  • What happens to my family?
  • What happens to me?

Only someone who has been through the entire experience can answer all those questions. Only someone who has been through and seen the worst, can with authority say to another, “Yes, you can do this.”

And then moving beyond those basics, there are the hundreds (of thousands) of everyday questions about how to do this, or that. So remember experience brings wisdom, wisdom imbues credibility, credibility instills confidence, and confidence is transformative.

A recurring theme of my writing is that our everyday experiences are preparation for what’s coming. The things that you have endured have been to prepare you for the future. Now is your time.

In Christ, Amen ☩

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A prayer for when you feel drained…

“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 help You give, the salvation You provide and comfort with which you surround us. But today I want to bless you especially for the opportunity to share with and comfort those who are just starting on the road that I have been treading. Please show me how to give them hope and share with them a measure of the strength that you have given me. Amen.”

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July 4th, 2020

As is my habit, this post is to commemorate a special day. If you are wanting to read the last regular post, you can find it here. If you want to read the next regular post, standby for 24 hrs. It’ll be along presently…

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed,

That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed.

But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.

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Those revolutionary, disruptive, even subversive words are excerpted from the Declaration of Independence of a territory that would, after a war, become the United States of America. These words come right after the preamble (which explains what they are going to say) and right before the authors enumerated their (many) grievances against King George, et al.

Of course it goes without saying that we, as a nation, are still growing into those words. We used to have private ownership of slaves, now we do not. Women used to be excluded from having their voices heard at the ballot box now they are not. Political, ethnic, racial and religious minorities were routinely and legally excluded from fully participating in society, now they are not.

We have undoubtedly come a long way, and just as assuredly, we still have a long way to go. But isn’t that rather the point? Lofty words such as these function to establish goals that are, by definition, always just beyond our reach.

The problem we have today is that too many people are more concerned with feeling good about themselves than they are about growing into anything. Consequently, they set small goals, but, failing to meet even those, they in the future set still smaller goals. In the end, it seems like the only goal to survive this constant dumbing down is the goal to “only do what makes me feel good right now.”

But what happens when that intent is thwarted? The traumatized victim throws a temper tantrum like the petulant little child that they (emotionally) are. For example, consider the video of a hysterical woman sitting on the ground and screaming, in a theatrical attempt to drown out the sound of a U.S. President being sworn into office.

By the way, the word “hysterical” has two possible meanings, and both are applicable here.

But I digress: my point in this post is to talk to the remaining adults and point out that the woman in the video wasn’t just screaming “NO” at the man taking the oath. She was screaming “NO” at the process that put him in office. She was screaming “NO” at everyone who voted for him. She was screaming “NO” at the right of a free people to freely decide whom they want to have lead them. Therefore, in a sense, she was screaming “NO” at people who are longing for freedom anywhere on this planet.

The basic (self-evident) truth is that the Creator of humankind bestowed on all of His creation the same right of self-determination, so “NO” to one is “NO” to all. Unfortunately, the alternative to an “unalienable right” is temporary “permission” from a despotic government.

The job of proper government is not to bestow rights – that function is, in fact, unnecessary. The proper role of government is to protect, here on earth, the rights that we received as a gift from on high. Rights which include, among other things, “… Life, Liberty and the pursuit of Happiness …”

In Christ, Amen ☩

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A prayer for when you are feeling grateful for your freedom…

“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 unalienable rights that You bestow upon all people. But today I want to bless You especially for blessings of prosperity that, despite our many flaws, You continue to shower over us. Amen.”

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What… You too?

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…

So Janet now has two security cameras watching her, and between the two of them I can track where she is most of the time. I may need to get another for the kitchen, but we’ll see. The nice thing about the ones I purchased (which are made by Samsung) is that the setup was super simple, and it feels so nice to be able to check up on her anytime. Unfortunately, Janet doesn’t always feel the same.

Janet keeps wanting to stand up and walk around the apartment without her walker. One afternoon Frannie and I had to run a couple of errands, so Janet took our being out of the house as an opportunity to get up and have a bit of a walkabout without being scolded – or so she thought. As soon as she got up, the motion detector on the video feed tripped and I got a notification on my phone.

I opened the app and sure enough, there she was, walking around and no walker. The cameras also have built-in mics and speakers, that allow two-way communications. So I tapped the microphone button on my phone and said, “Janet, you aren’t supposed to be walking around. Go sit back down!” A couple seconds later I could hear my words coming out of the camera’s speaker. She looked startled, but she did it. This scenario played out twice more, but the second time when I tried to call up the camera, it was off-line – she had unplugged it.

When we got home, I reminded her that those cameras are helping to keep her out of a nursing home and that they need to stay on. She agreed, and promised not to disconnect it again, but just to be sure, I found a place to plug in the camera that she can’t reach…

Jan has also been having a lot of trouble grasping (a) how the medical alert system we just got works, and (b) the importance of wearing either the bracelet or the pendant at all times. For that piece of technology, I’m trying to keep it as simple as possible: “If you need help, just push the button.”

The service we have uses a box that is essentially a speaker phone on steroids. When Janet pushes the button, the box calls the service and an operator asks her if she needs help over the (very loud) speaker phone. If either Janet tells them she needs help, or the operator doesn’t hear any answer, they will start working their way down the contact list, calling first me, then Frannie, and finally 911.

A nice feature is that the service provides us with a lockbox for the front door (like realtors use) that contains a key to the door. This box allows the EMTs to come right in without needing to wait for the police to arrive and break the door in.

Now all I have to do is convince her to use the button. Today she fell and cracked her head. No major damage, but it bled like crazy for a couple minutes. After I got things under control, I asked her what she would have done if I hadn’t been right there when she had fallen. She said, “Surrendered to God…”

“No, wrong answer! Push the blamed button!”

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As I look back, the responses to my blog posts have run the gamut from extremely complimentary to borderline repulsive. However I can say, without hesitation, that the most common type of response could be summed up in the statement, “What… You too?” Despite the many modes and opportunities for communication we have at our disposal, we still can feel surprised when we encounter someone with whom we share experiences and feelings.

Sometimes this surprise results from unchallenged stereotypes. As a rather benign example, I can’t tell you how many times people have been taken aback by the fact that I enjoy knitting. But the fact of the matter is that in many cultures, it was historically common for men to knit because it uses many of the same skills that were needed to create and mend fishing nets. Besides, I find it utilitarian, relaxing, and even meditative.

Sometimes we are surprised by a shared appreciation of something. For instance: “Wow! You like lutefisk, me too!” Actually, that’s a bad example. Nobody likes lutefisk. You just eat it because you are Norwegian or Swedish – or a polite out-of-town visitor at a Lutheran potluck dinner.

But more ominously, the surprise sometimes derives from a feeling of isolation that leads us to believe that we are the only person in the entire history of humankind to have ever felt so sad, or so troubled, or so hopeless. Of course when you say it that way, it can sound a bit silly, but it’s not. When we are feeling isolated and alone, we have no point of reference to tell us that our current feelings are to be expected, and so are, in fact, rather common.

But that begs the question first posed above: How, in the face of all the communications options we have today, does someone end up feeling so isolated? Well, it’s not about technology, that’s for sure.

Long before the advent of Facebook, the World Wide Web, the internet, television, telephone or even the telegraph, personal isolation was a problem. The image of the loner isolated in the midst of a vast sea of humanity was a well-known theme the world over, and had been for a very long time. And to be fair, the world has, over the centuries, benefited greatly from such people. Whether you’re talking about authors, philosophers, painters, musicians, or anchorites, some of the greatest minds in history were loners.

But that image isn’t really the one I’m talking about. For those people, the solitary lifestyle they choose (or in some cases, perhaps, chooses them) was not about isolation. Rather, withdrawing from society was, for them, a tool that allowed them to be united with something larger than themselves: their art, their muse, or their God.

No, what I’m talking about is an isolation born of despair. The image I’m talking about is this one:

This painting by Edgar Degas and is titled L’absinthe or The Absinthe Drinker. Degas created the painting between 1875 and 1876, and it shows the interior of a cafe that still exists in Paris, La Nouvelle Athènes. Located a stone’s throw from a busy boulevard and, at the time, a gathering place for artists and young philosophers, the cafe and the street outside it were, no doubt, filled with happy, bustling throngs. This was, after all, Paris: the so-called “City of Lights.”

Yet all we see in the picture is darkness and isolation. The woman, apparently unaffected by the lights and crowds, is isolated from everyone – even from a male companion to her left. So she simply stares down into her drink or perhaps into the abyss.

Now, a hard question: Did any of you have a flash of recognition, like I did, looking into the woman’s face? A moment of, “What… You too?” If so, take a moment and then we’ll continue.

It would be hard to overstate the upset and anger that this painting caused when it was first shown publicly. It was called vile, disgusting, even obscene – and that was from Degas’ fans. One art critic was so repulsed and outspoken, that he later had to publicly apologize for a verbal outburst in which he referred to the woman as, “a whore.”

The point is that back then, as now, people didn’t like to look too deeply into the pain that lies in the hearts of others. Of course, we don’t know what brought the woman to this state, but does it really matter? Despair and isolation, regardless of the cause, are the same across cultures, and as we can see, across the centuries, as well.

Consequently, readers of the two or three dozen support forums I follow probably have little trouble recognizing both the feeling expressed in that face or identifying its many causes. For example:

  • Maybe you are someone who has just gotten a fatal diagnosis.
  • Maybe you are a new caregiver that has just seen your future disappear in a puff of purple smoke.
  • Maybe you are an experienced caregiver that has just been reminded of how profoundly out of balance your life has become.
  • Maybe you are wrestling with the fact that there is no one in your life that really understands you.
  • …and so on, and so on.

There is no end to the reasons…

So given all this familiarity, what is the solution? Before we can answer that question, we need to come to an understanding of the word, “solution.” There are pharmaceutical solutions, psychiatric solutions, religious solutions, and spiritual/esoteric solutions. Likewise, some solutions address root causes, while others simply help you survive until a long-term solution becomes apparent. In the right context, they can all be helpful.

But one that I particularly want to recommend could be called, “Ink Therapy.” Given recent history here in the US, I guess I should make it clear that I’m not telling you to ingest it, snort it, or take it intravenously. Rather, you want to use the ink for writing. Think about it, if the fundamental cause of “that face” is a feeling of isolation, the most direct attack on the problem is to refuse to be isolated. A couple weeks ago, I told you about my Uncle John who had the habit of just walking up to people on the street and introducing himself. In the context of the support groups that you follow, I’m suggesting that you do the same thing.

If all you’ve ever done is lurk in the shadows around the edges of our virtual campfire, go to your forums, click on the field that asks, “What’s on your mind?” and introduce yourself. Tell us who you are and what is going on in your life. Tell us your story – the end of which, by the way, you can’t yet see.

While it might seem obvious that your story is important to you, it’s probably not so obvious that it can be just as important to someone else. I have learned that there is one type of question on the forums that is almost always answered in the affirmative. I’m talking about the ones that start with the phrase, “Is it normal for…” The truth is, it doesn’t matter what symptom you describe to finish that sentence: 99.99% of the time, someone else will have experienced the same thing. So, yeah, it’s normal.

Talking, writing, communicating multiply your opportunities for “What… You too?” moments. And while those moments may not make your burden any lighter, they will nevertheless make them easier to carry because you know you aren’t really alone. Indeed, many other people have trodden the same path you are on now – and have come out the other side.

So two closing points:

First, don’t worry about whether your story is great literature – it doesn’t have to be. It just has to be real and authentic for where you are right now. Also don’t worry if your message evolves over time. One of the epiphanies I have had in going back and turning these posts into a book is that I am not the same panicked man I was last October – not to say that I don’t sometimes still panic. But I have grown, because any kind of writing (even just a short note) can be a journey of self discovery.

Second, don’t start your posts with, “Sorry, that this is a long post, but…” Nobody is handing out extra “brownie” points for being pithy. You matter. Your story matters. Just tell it.

In Christ, Amen ☩

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A prayer for when you are despairing…

“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 involvement in our lives. But today I want to bless You especially for Your intimacy with, and closeness to my heart. There are many times that I feel so broken and alone that I just want to sit and stop feeling anything. Thank you for being with me in those dark times. Thank you for surrounding me with Your children to reassure me. Take me by the hand and lead me back to hope. Give me the courage to keep reaching out. Amen.”

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Doing the Right Thing

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…

Got Janet outside a bit this week. She had to get her blood test redone for her thyroid meds. As it turns out, she has lost enough weight (she’s now down to 103 lbs) that her PCP has decided to reduce her dose from 60mg down to 30mg. By the way, for her thyroid she takes a natural product called Armour Thyroid.

“Oh Armour, you mean like the meat packing company?”

Yes, exactly like the meat packing company. The medication consists of desiccated and prepared porcine (pig) thyroid glands. The more common alternative is the synthetic hormone levothyroxine (often sold under the brand name Synthroid). Unfortunately, this synthetic hormone works slightly differently and Janet does not tolerate it well. Over the years we have had to do a lot to maintain her supply. At one point, the government tried to shut down production of the prepared tablets by issuing a total recall for unknown reasons. In response, we had to go to a “compounding pharmacy” that would buy the medication in bulk from the manufacturer and make up capsules for Janet to take. Of course, that source wasn’t covered by our insurance…

But back to this week. It did Janet a world of good for her to get out. After getting the blood draw done, we had a bit of shopping to do, and although all she did was sit in the car, it was like a tonic for her. She was able to see people and feel the warmth of the sun on her face. Sometimes doing things that make you feel healthy are more important than blindly conforming to someone else’s vision of what it means to be “safe.”

Unfortunately, that euphoria didn’t last and a couple days later I almost had to bring her to the hospital due to suicidal ideation. We now have two security cameras (with motion detection) watching her, and she has a new medical alert bracelet so she can call for help – and all the sharp silverware and cutlery is up, out of her reach.

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This week, I have been thinking a lot about an oft-told myth that to avoid trouble with others all it takes is do what is right and tell the truth. Thanks to the drama being played out every night on the evening news, we can see how tragically wrong-headed that idea is. Telling the truth is just as likely to get you stoned as it is to get you praised. And a big reason for this tragedy is that the standard of public discourse today seems to be, increasingly, questions in the form of the old joke:

“So, are you still beating your wife?”

In other words, before you have even opened your mouth, the inquisitor (and I use that word deliberately) has already decided you are guilty. The only matter left to determine is, of what?

Now, it’s one thing if all you have at stake is your personal comfort, livelihood, or freedom. But what happens if you are a caregiver for someone who is dependent upon you? In that situation, things get a lot more complicated. For example, you can’t simply say, “…go along, to get along…” because “getting along” might mean doing or submitting to something that is harmful to the one(s) for whom you are caring. However, if you resist too much and end up in jail for your “crimes” – like a father who was recently arrested for playing catch with his daughter in an empty park – who takes care of your loved one then?

If you are feeling confused and hopeless right now, know that those feelings are by design. You are experiencing exactly what many in power today (as well as the would-be power-brokers) want you to feel. Their goal is to fill your mind with so much doubt and fear that you are willing to be led by anyone proclaiming that they can see the way out of our current troubles. Of course, the problem with these “solutions” is that the people handing them out only provide advice that is going to benefit themselves, with the result that you, your loved one, and your real needs are left twisting in the wind.

Today, there are people offering solutions from a mad variety of political, sociological, and religious positions. However, the choice between them often boils down to who can give out the most “goodies” – and it matters little whether the advisor is offering money, power, enlightenment, or Heaven. Rarely, if ever, do we hear the argument made about which of these myriad of options is true.

In the past, there was a method for identifying what was true that revolved around a “marketplace of ideas.” The concept was that if people openly and honestly discussed questions, the truth would win out because it would be the only answer that satisfied reality. But for this competition of ideas to reach the desired goal, there are two obvious prerequisites: First, as the English poet and philosopher John Milton stated, there must be a “free, transparent public discourse.” Second, the participants in the discourse have to agree that there is such a thing as truth.

Unfortunately, today we fail on both counts. Increasingly, manipulators are either making certain ideas unacceptable by fiat at the outset, or are redefining phrases to make the accurate expression of certain ideas impossible. For example, you can’t have a serious discourse about “equality” if the person you are talking with has redefined the term as a racist “code word.” In either case, the goal is to control and regulate discourse so that only certain ideas can be expressed – and no dissent is allowed.

Likewise, if the manipulators are going to control the discourse, they can’t allow themselves to be embarrassed when one of their ideas bumps into reality. So they simultaneously give everyone the power to define what is real for themselves in the form of a personal reality that can’t be questioned.

Consequently, when all is said and done, the once-vaunted marketplace of ideas has become little more than a philosophical smorgasbord from which one can pick and choose any concept that strikes their fancy:

“Yes waiter, I would like the Existentialist Blue Plate Special with a small order of Religiosity on the side. Oh but hold the Libertarianism, it gives me gas…”

And if you happen to believe two contradictory ideas, no problem. What’s a little cognitive dissonance between friends?

Now if life is going along pretty well, you might be able to get by with this sort of intellectual dishonesty. But if you are suffering from a chronic disease, or are caring for someone who is, you don’t have time for such mind games. If, as in my case, your wife is dying, that is a hard, uncompromising reality that demands attention. And it matters not a whit whether you agree with the diagnosis. CAG counts trump opinions. It is an example of what I call True truth and a firm grasp of this truth is one of the things that you need in order to deal with the situation I outlined above.

The second thing you need is confidence that you aren’t in this struggle alone, but this conversation needs to be bigger than just how to obtain effective protection from the, “…slings and arrows of outrageous fortune.” Rather we need to see all our actions in the world as part of a process in which we are just one part. (For extra credit this week, contemplate the phrase that I didn’t include in that last sentence. I didn’t say, “small part.”) But if I am just a part, who is orchestrating the whole? I would assert it is The One whose very being defines the fundamentally True truth that is the basis for the reality in which we live. Here are three aspects of the support that we can expect:

First, God has redeemed my past. Unlike the opinion commonly expressed by the mob, I don’t have to be the result of an immaculate conception. In fact, God has a habit of using people with “a past,” as folks used to say. While the perfect, sinless people that are so common today would be tearing down their statues, God says, “That’s okay. We can fix that flaw and We’ll turn it into something beautiful.” Note that in the end, the resulting life is not as it was before – it’s better.

Second, to complete the work of redemption, God is walking with me in the present. And yes, it often isn’t pretty, but we can be confident that it will all work out because, unlike me, God is totally committed to the perfect end result. Consequently, whatever you or your loved one must endure in order to do what is right, it will move you towards the ultimate goal.

Third, God is going before me into the future. It may seem unfortunate, but the simple fact is that you and I can’t see even one second into the future with absolute certainty. As a result, we are often taken by surprise by what happens next. However, for God, all of human history is like a vast tableau that He organizes and structures for our benefit. However, this Divine Work isn’t like a movie I saw once where Greek gods were playing chess with people’s lives. God is not sitting uninvolved is some far-off heaven. Remember, He is “Emmanuel,” God with us.

So, in the end, we see that while the proper course of action may not be easy, it is really very, very simple. Truth matters. Right matters. So tell the truth and do the right thing.

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“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 certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. Amen”

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Building a Team

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…

The word for this week is “fading,” because that is what has been happening to Janet. Her speech is growing even softer and less distinct, and in general she is more withdrawn. On the other hand, there have been a few positives along the way. For example, she has agreed to start taking a medicine that the doctor prescribed several weeks ago, but then refused to take. (I mentioned it in an earlier post.) So far, she seems to be tolerating it well and it is definitely helping with her chorea.

Thanks to the new meds, she is sleeping more, and seems (finally) to understand that she can’t just get up and walk around the house whenever she wants. The other night she went to bed much earlier than normal. About 0 dark 30 I went down to get a drink of water and found her sitting on the toilet, unable to get up on her own. God only knows how long she had been there. She hadn’t used her walker, so she didn’t have her phone with her, and she couldn’t call for help. A large chunk of the problem is that the last time she fell she bruised a rib, and transitioning from one position to another is painful for her. In any case, I have a medical alert system ordered and I’m waiting for it to come in.

She is also craving human contact beyond just Frannie and me. Unfortunately, everyone is so anxious to “protect” her…

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It’s common for caregivers to feel like they are all alone, like a frontier explorer. However, the situation is seldom so bleak – or at least it doesn’t have to be. The other day I saw a post online:

I have read that, “It takes a village to raise a child.”
So I was wondering: Do they just show up, or is there somebody that I need to call?

In the same way, caring for a loved one suffering from dementia is definitely a “team sport.” Sometimes people just show up in your life and sometimes it takes a bit of team building. However, before we get into that topic too far, there is one more thing we need to consider: how “attractive” it can seem at times to be a lone wolf.

The truth is, sometimes people have a hard time letting go and asking for help. Although this condition may be more common among men, I have read stories of both husbands and wives resisting letting someone else do “their job.” One big place where this feeling can arise is when it becomes clear that the loved one they are caring for needs to make the move into a full time nursing facility. I have heard people say things like they feel they are “deserting” their spouse, or letting them down, or breaking a promise.

First, I would say to the caregivers that you are not deserting anyone, or letting them down, or breaking a promise to them – or for that matter, to God either. At some time or another, if your loved one lives long enough they will reach a point where you can no longer care for them. I’m so sorry, but that is just the truth. And when that point comes, your job will shift (but only slightly) from caring for them, to making sure that they have the care they need. One type of advocacy is as important as the other.

Second, if you are reading these words as the one who is being cared for, please start a conversation with your caregiver now, today. Let them know that you realize that someday you will reach a point where they can no longer care for you. Then together, figure out what they are to do when that time comes. Don’t forget to let them know that, whatever may come in the future and no matter what some “future version” of you may say, you trust them and believe in them. Unfortunately, Janet and I didn’t do that and it has made things so very much harder. Please. Learn from our mistake.

So back to team building…

I suppose the first thing to consider is what is a “team” anyway? Obviously, it is a group of people, but more to the point, a team is a group aligned on the same goal. But even more than that, the goal needs to be the right one. Once in a job interview, I was asked if I was a “team-player” and I said, “Depends. Is the team running towards the right set of goalposts?” While there is undoubtedly a lot of bad news in the world of chronic illness, there is one bit of good news: the goalposts are clearly marked.

At one end of the field is a set of goalposts bearing a beautiful banner emblazoned in gold with words proclaiming the intent to provide the best care possible physically, emotionally, and spiritually. At the other end of the field is a goal festooned with a bedraggled, dirty rag bearing a few scrawled words announcing the intent to do just the minimum to “get by.” If you are running towards the first goal, please keep reading, but if the second goal looks attractive, feel free to leave at any time. I am sure that upon reflection, you will see that you have already done far more than is absolutely needed. Of course there is that whole “Do unto others…” trope; as well as the very real possibility that you might, in your old age, fall into the clutches of someone who believes like you do now. But suit yourself…

Under ideal circumstances, the first group of people that we should always be able to count on is family. But we all know, or have heard, of situations where family didn’t always “come through.” In scripture we see hints that perhaps even Jesus had to deal with this issue. But the concept of family transcends mere biology or DNA. As we have talked about before, there is also the family that God creates for you out of whole cloth. These relationships can form anywhere communication is possible – even online. But if family is built on communication, someone needs to extend the first hand. In my family, they used to tell the story of a great-uncle of mine who if he saw someone on the street that struck him as a person he thought he might like to know, would walk up to them, stick out his hand and introduce himself saying, “The name’s Pennington, what’s yourn?”

The second source of team members is, obviously, where you worship. Whether you call your worship space a cathedral, church, temple, synagogue, shul or elementary school gymnasium, the people you find there are an invaluable resource. They may not be experts in the disease or condition you are battling, but can offer other things. Going back to Jesus and His disciples, we don’t really know a lot about them, but if Jesus followed the pattern of other itinerant rabbis of the time they would have been young. Peter was probably the oldest being married, so maybe 18, but the rest? Again, following tradition, most likely between 15 and 17 years old. Not exactly the group that you or I would pick to change the world. But nonetheless, they did it. In the same way, those whom God has called to be around you can help change your world too.

Finally, let’s consider the medical members of your team. For the most part, Janet and I have been extremely blessed. I have described Dr Cotugno in Pennsylvania (who figured out Janet’s diagnosis) as basically a bulldog in a white lab coat. He knew that it wasn’t just in her head, but that there was something wrong with Janet. But more to the point, he wasn’t prepared to rest until he found out what it was – that’s where the bulldog comes in. He was going to find out what was happening.

Then there was Dr Kostyk in Ohio. Knowing that we were “new” to the situation, she went far beyond simply examining and treating. She also spent a lot of time with us explaining and educating.

Finally, what can I say about the crew at the HDSA Center of Excellence at UT in Houston? Their attitude is that although Janet may be the only one carrying the gene, HD is nevertheless a family disease. I’ll never forget our intake appointment with Dr Erin Furr-Stimming. She sat with us for hours talking about everything. We discussed symptoms, family dynamics, medication, the future, everything. The thing they brought to the party was not just medical expertise, but also a lot of heart.

So there you have it. Hopefully by now you should see that there is a great team out there, and they’re waiting for you to find them.

In Christ, Amen ☩

PS: Just a quick note in closing. I have heard from a number of you that you would like to be able to get a compilation of my writing in book form. I am still working out the details, but God willing, that is going to happen this year. It will be available in soft- and hardcover, as well as an eBook. I’ll keep you posted.

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A prayer for when you need a team…

“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 lessons that you teach. But today I want to bless you especially for demonstrating the importance of teams – even Jesus had His disciples. So open my eyes to see the team that surrounds me, and open my heart to enthusiastically join teams that need me. 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”