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Life Interrupted

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 Monday we weighed Janet and she was down to 91 lbs. This week Frannie saw Janet as she was getting a bath and it scared her – again. Frannie and I take walks every evening and lately the topic of conversation is always the same: What are we going to do after Mom dies?

I guess it’s pretty normal to look at a coming change and wonder what it’s going to mean. Of course, most talk of that sort is really just speculation because, in truth, we have no idea what the impact is going to be.

My company has me working at home, at least until sometime in September. So for a change this week, instead of working in my office, I’ve been working downstairs sitting with Janet. On the one hand, having me in the same room seems to be calming. But on the other hand it means that I can watch her and she feels a bit resistant to the oversight.

Thursday, I was working and she asked me to go upstairs to work. When I asked her why, she said: “The clicking of the mouse is too loud.”

“The clicking of the mouse is too loud…” I said slowly. I was skeptical, but figured why not? So I gathered my things and went up to my office on the 2nd floor.

However, no sooner had I sat down at my desk than the alarm that we have on her chair to let us know when she is trying to get up went off. Running to the living room, I saw her quickly sitting back down.

“I was trying to reach the TV remote,” she explained.

“Janet, the remote is right next to you on your tray.”

“Oh?” she said, feigning surprise.

“Yeah. You know what it looks like to me?” I asked. “It looks to me like you wanted me upstairs so you could stand up and take a stroll without me scolding you. That’s about right, isn’t it?”

Realizing that she was busted, she nodded. “Yep…”

We talked about it a bit more, and then I moved my work back to the living room. I guess the mouse is much quieter now.

Then Friday, we had a visitor. Ray, the pastor of the church that Frannie and I have been attending during this shutdown, came by for conversation and prayer. The visit was also an opportunity for Ray to meet Janet and get to know her a bit. In addition, he brought communion – which is something that Janet has sorely missed. For Janet, communion is about remembering, but it is also a way of welcoming and receiving Jesus, again and again.

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It occurred to me this week that there are basically two kinds of people in the world: Those for whom reality is an interruption keeping them from the more important things in life, and those for whom the interruptions are life.

As a caregiver, I fall often into living out the first option, when I know that the second one is actually true. The problem is that there is a curious idea abroad in the world today that encourages us to establish goals for ourselves and then judge the quality of our life based on our perceived progress towards meeting those goals.

Unfortunately, this approach to life has some problems. For example, I (like many people) began choosing my future at an insanely young age when someone first asked me what I wanted to be when I “grew up.” Now, 66 years into the process of growing up, if I were to measure my life against those pre-pubescent goals, I would feel frustrated – I am clearly not an astronaut. But even if I shifted my focus to include more adult goals, the frustration would remain.

For instance, my intention was to have a home in one place and not move my family as much as my folks, brother and I moved while I was growing up. But those intentions were frustrated to the point that our kids don’t really feel like they have a “hometown.”

My goal professionally was to have a career with a good company and retire after many years of faithful service with the proverbial gold watch. That goal was frustrated by companies that labored under the burden of poor management – and my pathological inability to keep my mouth shut when I see something wrong. (I know, you would never have guessed that about me, right?)

And in terms of relationships, I had hopes for a long and happy marriage to Janet, and dreams of us spending our “golden years” traveling around the country in a motorhome visiting grand-kids – but these are the biggest frustrations of all.

If I were to focus solely on those frustrations I would, like the small-time boxer Terry Malloy from the play (and movie) On The Waterfront, cry out:

“I coulda had class. I coulda been a contender. I coulda been somebody…”

Viewed from that perspective, all I have to show for 66 years on this earth are regrets.

Of course, there are those who adhere to the cultural myth about the “self-made” man or woman who, through strength and perseverance, overcome all obstacles. But as attractive as it might seem to say with the Victorian poet William Ernest Henley:

I am the master of my fate,
I am the captain of my soul.

… the truth is that soul captains rarely meet happy ends. For example, Henley himself died in pain from tuberculosis at the age of 54 after an amputation caused by the disease, and in the end his over-the-top poem Invictus (for which he is famous) didn’t change his life in the slightest. I wonder if, in the end, the poem’s hubris provided him with any real comfort?

But there is still the other option – that these “interruptions” and “side-tracks” are themselves life – maybe not one we chose, but one that was needful. From that perspective I can see beyond the roadblocks to recognize that while some of the big things didn’t work out as I hoped, many others that I didn’t see coming were better than I ever imagined.

For example, dreams of having children together are wonderful – even better is the opportunity to actually help bring them into the world, as I did when I cut the umbilical cord for my son Michael. Or to share the joy of watching our daughter Frannie grow and exceed the expectations of the “professionals” who forecast for her a bleak future.

“Ah. But,” you might ask, “surely you don’t mean to suggest that there is anything positive in Janet’s current condition are you?”

Actually there is. Janet has been a teacher her whole life. This illness will have been her biggest lesson to the world: How to face a future that in the short-term is clouded and uncertain, and how to do so with grace, dignity and strength. She is a demonstration of faith in the face of absolute certainty of “failure.” She will die, but it will be a death that is her entry into a new life filled with joy and health. Over the years she has many times expressed that hope, and that faith.

And for me? Well, many people go through life wondering about and obsessing over whether they have ever “made a difference” in the world. When someday on my deathbed, I consider my life while the light fades, I will be looking not at a seamless darkness born of frustrations and failures, but rather a starry night shining brightly with a myriad of points of love and grace. Not exactly what I had planned, but truly it is all good.

In Christ, Amen ☩

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A prayer for when you are facing the end…

“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 eternal presence. But today I want to bless you especially for offering us an invitation to enter into your joy. Thank you for redeeming not just my future, but my past as well. Amen”

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Dealing with Aggression:
Triggers and Responses

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

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

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

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

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

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

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

So moving on …

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

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

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

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

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

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

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

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

So here we go, in no particular order:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being eternally present. But today I want to bless you especially for the part that you have given me in forming the eternal future. Guide my hands and direct my words to accomplish Your good works. Amen”

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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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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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Of Heroes and Hypocrites

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.

This week has been bad. I don’t know how else to put it. Bad is bad. The latest brouhaha was over whether Frannie could go over and see one of her friends. Janet’s pronouncement? “No, you can’t go because you didn’t ask my permission!” Just to be clear, Frannie is 29 years old. At that point I stepped in and pointed out that Frannie is an adult and doesn’t need to “ask permission” anymore. Things went downhill from there. This came on top of a week that started with me taking Janet’s phone away from her twice to keep her from calling and haranguing Frannie. Then when Janet caught onto that, she started sitting on her phone to keep me from confiscating it. In the end, I had to tell Frannie to just turn off the ringer on her phone.

Then today, Frannie and her friend made arrangements for Frannie to spend one (1) night at the friend’s house. When Janet heard about it, she “forbid” Frannie to go. Frannie was crying, Janet was yelling over and over about all the issues that Frannie and I had already discussed and had solved, like: “Who will take care of your dog?” and “If you go over there, who knows what she’ll have for you to eat? You’ll get FAT!” In the end, I had to tell Frannie to just go upstairs and ignore her mother.

Whether it was right or not I don’t know, but after Frannie was gone, I told Janet as directly and as controlled as I could that Frannie does not need her permission. And that her opinions and advice on matters were no longer required or desired. I again tried to explain to her the degree to which her only daughter is terrified to be alone with her. Then I went upstairs myself and cried.

This is not how marriages are supposed to be.
This is not how families are supposed to be.
This is not how life is supposed to be … but here we are …

Semper Prorsum

If you’re wondering about the title of this post, let me put your mind to rest: I am not going to be talking politics or public health policies – though an alert reader may find corollaries to both. Rather, I will be talking, as I usually do, about how these apparently disparate topics bear on being a caregiver.

One of the earliest conversations I can recall concerning heroism was with my father. Career Army, he fought in both WWII and Korea, and tried to volunteer to go back in to “help out” during Vietnam (but that’s a story for another time). Being too young to understand either what I was asking, or his response, I once asked, “Daddy, were you a hero in the war? Did you get any medals?” He answered that no, he wasn’t a hero. And as far as medals go, “I told them, I killed all the damned people you wanted me to kill. Don’t expect me to feel better about it because you hang a chunk of metal around my neck.” The thing to remember is that my father didn’t regret a moment of his service to this country, he just fully understood the cost of freedom: some people live and some people die – on both sides.

In a parallel vein, I saw a press conference this past week where an Italian doctor was asked about the heroes saving lives in hospitals, sometimes at the cost of their own. In trying to give his answer, the doctor broke down in tears and just sobbed for several seconds. When he finally regained his composure, he managed to get out his answer: “In our hospitals there are no ‘heroes’ or ‘heroines.’ Behind the masks are just everyday men and women doing extraordinary things for their fellow human beings.” His point is, of course, that heroes are not some supernatural form of life, but rather just people who do their jobs regardless of the cost. I don’t know what hospital he was from, or what his name is, but that man is my brother.

The other thread of this post is about hypocrites. Now, you might not be aware of it, but the English word “hypocrite” is derived from the ancient Greek word for actor “hupokritēs.” Something I just learned recently was that what the word literally means is something to the effect of someone, “who performs behind a mask.” The reference is to the fact that in ancient Greece, actors in plays wore masks so the audience could immediately recognize the character they were playing. This idea, of course, melded in my “unique” brain with the doctor’s statement and got me wondering about masks in general.

For example, where do I – or for that matter any of us – get the masks that we wear? Is there a difference between masks that I acquire for myself, and masks that I am given? How do I take the masks off, and if I do, what will I find? What are the risks of going out without a mask? I will leave most of those questions for adventurous readers to dive into because, truth be told, a book could be written about each. Instead I want to look at how these related ideas of “Heroes” and “Hypocrites” relate to being a caregiver.

Someone on the outside of the situation, in essence looking in, sees a hero. They see someone battling adversity and terrible odds to snatch from death even a tiny bit of life. They see courage, faith and stamina. In short, they see the hero mask. However, the caregiver acting behind the mask, the hupokritēs if you will, has a different view. They see unending effort that is only occasionally successful. They see fear, uncertainty and, more often than not, exhaustion. To those behind the mask, there is no grandiose crusade to make things better, there is just survival.

One problem that can arise is when the one behind the mask hears the acknowledgements of those outside. The outsider’s visions of reality can be so fundamentally different that all the caregiver can see in themselves is hypocrisy and a profound lack of authenticity. Or to put it another way, they literally feel like they are just “playing a part” and if their life was somehow turned into a movie, they would show up in the credits as simply, “Caregiver 1.”

Of course the outsiders usually interpret a caregiver’s aversion to attention as modesty, and describe them as “self-deprecating” when in truth, we are just trying to avoid the pain and embarrassment that we believe will result when people discover who we really are. And by the way, this same dynamic can even apply when one caregiver looks in on another caregiver’s situation and decides that they are so much better than I am. While I’m a fraud, they really are heroic! And so it goes, each person seeing the next as being in some way fundamentally better than they are at handling the same rotten job at hand.

Predictably, the result of all this unhealthy self comparison is guilt – not unlike what I talked about all the way back in our conversation on “Righteous Guilt.” You can fall into thinking that if my loved one just had someone to care for them like      {Insert Name}    then they would be so much better off.

The truth, however, is that our placement here on earth is not an accident, so while there will always be room for improvement because none of us are not perfect, there is no room for guilt because God, who could have picked anyone for your job, knew that you were the perfect fit.

In Christ, Amen ☩

A prayer for when you are not feeling particularly heroic…

“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 lengths that You go to daily in order to support me. But today I want to bless you especially for picking me to perform the job that I am doing. Thank you basing Your choice on Your foreknowledge and not my track record. Amen”

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Mary lost her son, a story of Holy Week

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.

This week I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“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 wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. Amen”