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Try to Remember

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

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

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

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

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

Here’s praying for a cure.

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

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

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

East Weymouth Congregational Church

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for knowing all things. But today I want to bless you especially for opening my eyes when I cannot see, and making visible that which is hidden. Help me to understand the hidden needs and expressions of others. Amen.”

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Getting to Beauty

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 morning my sister asked by Messenger how things are going in Texas. I replied, not so good, and went on to explain some of the challenges that have arisen in even just the past 48 hours. She replied,

“Very hard on everybody. Because she’s slipping away?”

“Yes, and the slipping is not smooth.”

I guess that you could say that the name of the game this week has been “agitation,” and more specifically, how to control it. But please note that this isn’t the kind of agitation where she is angry and striking out – she is much too weak for that. No, this agitation is characterized by constant talking, questioning, and worrying.

Adding to the troubles is that the verbal communications are often little more than word salad and we are left trying to figure out what she is trying to say. For example, this morning she said that she couldn’t see the apple on the wall, and was demanding that I find her apple. I had no idea what she was talking about, but then one time (and she only said it once) she said something slightly different. She said:

“I’m a teacher and I need my apple.”

That singular reference to being a teacher reminded me of a couple years ago when we went and talked to a group of 2nd year medical students about her disease. As a thank you gift, the class created a poster that they all signed, thanking her for coming to teach them.


There was her apple from a class of doctors that are graduating this year. I had it mounted and framed:


This experience got me thinking about understanding her in particular, as well as others in general. As I was talking about this “interpretation” problem with my sister, she reminded me of a passage that many churches today ignore that deals with two gifts of the Spirit: “speaking in tongues” and the “interpretation of tongues.” According to Paul, these gifts should always appear together. My sister said:

“But you can still, having a heart for Janet, pray for … knowledge that you can’t humanly know. So don’t look for carefully strung together, planned words from Janet (because she can’t do that anymore) – listen carefully from your heart for the spirit behind them. May the Spirit of God be your interpreter!”

“And your touch may be the most meaningful thing you can do now. Even if you don’t understand now, you understand.”

Sounds good to me.

In other developments, a real God-send has been the special air mattress that hospice provided. It is much more comfortable than her original solid mattress and is keeping her bedsore free. The way it works is that, unlike an air mattress that you might use for camping, this one has two independent sets of internal air chambers that an external pump fills alternately. Hence the places where her body is being supported is constantly varying – hence, no bedsores.

Janet is also now on oxygen part time. Every couple hours I check her oxygen levels and put a mask on her if it drops below 90%. In addition, we put it on her at night so we don’t have to bother her with the monitoring.

As far as new behaviors, just the past couple days she has started stretching her head and neck backwards, to the point that at times her chin is pointing almost straight up. What (if anything) that means, I have no idea, but it is something new. The only thing at this point that I can see is that it makes it more difficult for her to drink – even with an angled straw.

Oh yes, my unemployment approval finally came through. I may have forgotten to mention it, but I got fired the 2nd of September, my former employer saying that I don’t communicate well…

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This week I stumbled across a documentary called Why Beauty Matters that was produced by BBC Scotland and originally broadcast on BBC2. It was by the English philosopher Sir Roger Scruton. His point was that in art of all kinds, beauty has been replaced by what he called “a cult of ugliness,” as exemplified by the French artist Marcel Duchamp who signed a urinal with a fictitious name and put it on display as a work of art.

Likewise, in architecture, he asserted, beauty has been replaced by “usefulness” with the resulting buildings being so ugly that they ultimately became useless. As a case in point here, he used the example of his home town of Reading in South Eastern England, which in a fit of civic redevelopment during the 1960s, put up buildings that were so ugly that, by the time of the filming, they had been abandoned and vandalized, and were covered with graffiti.

By the way, if you are from Reading and are offended by that description, please understand that I have never been to the place, so I only have the documentary to go on.

In any case, his underlying point was that beauty matters, for it provides us consolation for the parts of our lives that aren’t working out so well. In his view, if we as a global society lose beauty, then we are truly lost.

Of course when you are caring for someone with a chronic health condition, we are often more conscious of the ugly than we are of the beautiful. Changing a diaper is not, in itself, beautiful. A person drooling all over their clothing is not beautiful. A person jerking spasmodically in a chair, or as they try to walk, is not beautiful. So if we see life like a medieval painting with no background, all we can see is the foreground image – which, let’s be honest, is often ugly, even if your loved one isn’t suffering from a terminal or chronic disease.

However, one of the innovations of renaissance art was the addition of backgrounds to paintings. This addition served to, among other things, set the foreground image (whether good or bad) in context as but one frame or scene of a longer story. In the same way, our lives and caregiving duties can have a background that sets the ugly moments in a context which allows us to see further and comprehend the beauty of the overall story.

One of the things that I try to emphasize to young engineers is that a number sitting inside a computer is essentially meaningless. For example, take the number 42, there is no way of knowing whether the number represents the temperature of an uncomfortably cool room in the US, an unbearably hot room in most other places in the world, the atomic number of molybdenum, or the “Meaning of Life, the Universe and Everything”.

And all of life is the same way: facts and events without context are (like the number 42) in themselves meaningless – or as the author of Ecclesiastes would say, just so much hot air. It is the context that gives them meaning. So what is the context for your life? Beauty is always available.

In Christ, Amen ☩

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A prayer for when you are overwhelmed with ugliness…

“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 beauty that surrounds us. But today I want to bless you especially for redeeming me and making my life beautiful – no matter how ugly it might seem at times. Show me how to reflect the beauty of Your being. Amen.”

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Momentary Clarity

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

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

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

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

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

Life Insurance?   ✓ Check

Wills?   ✓ Check

Body Donation?   ✓ Check

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

“The girls?” I asked.

“Yes, Frannie and Catherine,” she replied.

“Oh, they’re fine,” I said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are exhausted and hurting…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the everyday strength that you give. But today I want to bless You especially for the special strength and reassurance you provide to care for us in times of extraordinary trials. Thank you for the knowledge that darkness is always the precursor to light. Amen.”

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Watching, waiting …

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

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

This week has been a week about remembrances.

Remembering is important because in some ways our final legacy is the memories that we leave behind us, but what are memories? Science defines them as chaotic blips of electrical energy jumping between synapses, and so are “rewritten” each time they are remembered. On a related topic, I have a recurring dream in which I come back in 500 years and am in a conversation with a scientist of the day who will be amazed that I was actually so primitive that I thought memories were stored in the brain. “My goodness,” they will say, “what a quaint concept! Simply everyone knows that memories are stored in the [            ].” Fill in the blank with something that everyone will know about in 500 years, but which we don’t even suspect now.

The dream then ends with a close up of my shocked face – similar, no doubt, to the face of a proper Elizabethan learning that the heart was not really the seat of emotions, or the face of a noble Pharoah upon hearing that the home of the human soul is not the liver.

But what does any of this have to do with Janet? This week I have been watching Janet’s brain begin the process of shutting down, with the result that memories – or at least her ability to access them – are evaporating. The CNA from hospice is seeing significant changes over just a couple days between her visits. Her speech is nearly incomprehensible at times, and she is no longer eating anything solid – think: applesauce and yogurt.

Her vitals are normal and stable, but from the way she was responding yesterday they suspected that she was in pain so they gave her .5 mg of morphine orally, and she did much better, so it looks like they may have been right. During the day, I sit with Janet so if she needs anything, I’m right there. During the night either Frannie or I check on her every couple hours.

We started that additional precaution after Janet threw up in the middle of the night this week. She apparently didn’t choke, but it is unknown so far whether she aspirated any – a very real concern given that most studies list aspiration pneumonia as the leading cause of death in Huntington’s patients (between 70% and 85%).

When she sleeps, she talks – a lot. And her waking (?) conversations contain more and more non sequiturs like the comment, “I love you… Jackie loved JFK…” – she always admired President Kennedy. But then maybe it is like my sister suggested, and the ideas were connected. Then this morning she told me that, “The doctors are wrong and I don’t really have HD, I’m just very, very tired.”

But this has also been a week for remembrances.

Despite this decline, she still had a couple moments of clarity. A couple days ago she was upset because she realized that she was not going to make it to Frannie’s birthday in November. To compensate, Frannie and I put together a quick impromptu early birthday party for Frannie so Janet could celebrate her turning 30, with family and friends. For the celebration, Frannie found a box of brownie mix (which she fixed) and we were able to do a group video chat so Janet was able to sing happy birthday to her daughter one more time.

I also noticed this week that Janet’s Bell’s Palsy has come back. The last time it was apparent was when she was pregnant with our son. In all our family pictures from that time she has her left eye taped shut because it couldn’t blink properly.

Finally, this has also been a week for blessings.

This week I was here at home when the doorbell rang, unexpectedly. When I went to the door, our visitor was Pastor Regina Wilson, of the Word Fellowship Christian Church here in Pearland. We know her because the church that she leads shares the building with the congregation that Janet, Frannie and I belong to, and because she lives two doors down from us.

When I invited her in, she explained that she had come because when she woke up that morning, God was, “…whispering your wife’s name in my ear…”. So she came to minister and pray with and for us. On a practical level, she brought a thermos of chicken broth – which Janet has enjoyed. But she also came to minister spiritually. First, she anointed Janet with oil and prayed over her.

This simple act comforted Janet greatly. Then Pastor Wilson served communion to the three of us. And finally, in an act of divine service, she washed Janet’s feet.

While ritual foot washing is not something we do in our church, Pastor Wilson explained that it is a regular part of their church’s worship life and they do it for each other as a part of their regular worship once a month. The act is drawn from the Gospel of John when Jesus washed the feet of his disciples to emphasize that if He serves them in this way, how much more should they be serving others around them.

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Something that I haven’t mentioned before is that in addition to this blog, I have another writing project that has been ongoing for a few weeks – but it’s a very different kind of writing. Whereas this blog is (I hope!) very down to earth and practical, the story that I am writing has been since its inception almost like transcribing a dream. I didn’t know what it was to be about, how large it was going to be, or what it even meant – the words just poured out and I wrote them down.

As I added to it, and I got input from a couple of folks that I shared it with, I slowly began to see what the story means and where it is going. As it stands now, it’s over 100 pages in the word processor, and I have identified some of the major characters and themes, but I still don’t know exactly how long it will be, or how it will end – except that the last five words will be:

The End – But not really…

In any case, the reason that I am even bringing it up is that one of the epiphanies that I have had about it is that it is really covering the same territory as this blog, but in an allegorical sort of way. I realized this relationship when I came to a place in the story when one character was writing a love letter to another character. Suddenly it wasn’t two fictional characters, but Janet and I, and I was reliving our meeting and falling in love.

Last week, I wrote about the old meaning of the word respite which is “to turn around to look at” or “to regard” something. The point of this regard is to appreciate and celebrate the good, without needing to add footnotes or content advisories concerning the misery ahead. Or to put it another way, its point is to be in the moment – but in that moment. That moment before the anger started, before the doubts crept in, before the long, slow goodbye.

This week I have been remembering and reliving the good. It’s been a good week.

In Christ, Amen ☩

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A prayer for when you need to remember…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You as the Author of all good things and fresh beginnings. But today I want to bless You especially for the beautiful memories with which You have blessed me. Rather than letting me continue viewing roses as flower bushes with thorns, teach me to appreciate them as thorn bushes that you have adorned with flowers. Amen.”

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Respite – The Pause that Refreshes

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, Janet weighed in at 87 lbs – and that may be her last “official” weight because she is too weak to even stand up for a moment on the scale.

As the week went on, she became more and more disoriented and confused – symptoms that we have been treating with the occasional 1 mg Lorazepam sublingual tablet and many, many hugs and kisses.

She is still eating a bit, but it is mainly for the flavor – not the nutrition – and we have to feed her as she can’t find her mouth on her own. She seems to be particularly enjoying anything cooked by Frannie. The last two nights she fixed macaroni and cheese, and spaghetti with a veggie sauce. Janet enjoyed them both immensely and, thankfully, there has been no choking.

Saturday, Janet was mumbling about insurance, wills, organ donations, and a whole laundry list of other things that kept running through her head as things she needed to handle. She was worried about Frannie and me, and even whether Rocky and Lawtay (our two dogs) would be okay. Finally, I told her:

“Janet, you don’t need to worry. You have done everything that needed to be done, and handled everything that needed to be handled. You have worked so hard, for so long, and now it is time for you to rest. I am proud of you, and you have earned this rest. So sleep.”

I don’t know if she heard me, or understood what I said, but she seemed less agitated afterwards. Then, a few minutes later, she asked me to hold her hand for five minutes – which I did.

I have called our son and told him he needs to be thinking about heading back to Texas – and the sooner the better.

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The title of this post encapsulates the common meaning of “respite” as it is understood today. And if you can remember when the last part of the title was used as a marketing slogan for a popular soft drink, I hate to break it to you, but you are really old…

However, the word didn’t have that always meaning. In the 13th Century the word is derived from the Latin root respectus which meant “to turn around to look at” or “to regard” something. That is the sense I want to talk about now.

Oh, I had originally planned to discuss respite as a process for getting a break from the load of having to care for a loved one, but that didn’t work out. The nursing homes in the area that would normally provide in-patient hospice services have apparently confused a virus with a 99%+ survival rate with the bubonic plague, and are not taking any admissions. They have said that they are either afraid of giving Janet Covid-19 or are afraid of Janet bringing Covid-19 into their facility. Given that neither excuse stands up to any sort of logical scrutiny, I am at a loss for identifying the real reason, but it smells like lawyers.

So back to the original meaning…

I have written many times about the dangers of living life in the “rear-view mirror” and those warnings are still valid, but as is so often the case with coins, there is another side. Respite, in the old sense of the word, can also be a way to step back from your present troubles and objectively remember the past, for both the good and the bad that it contained.

For the good memories, these moments of “respite” can be an opportunity to relive the happy times without needing to invalidate them by saying, “Yeah that was good, but look what was coming.” Likewise, for the bad memories, your new perspective can lead you to the conclusion that some of the bad times weren’t really that bad after all, for they led to some good outcomes that, at the time, you couldn’t see. Moreover, if you see the opportunity to learn as a positive, you may find yourself in the position of watching all your “bad times” evaporate or slide to the other side of the ledger.

Recently, I read about a university in the US that performed a study demonstrating a relationship between a subject’s ability to perceive interconnections between different occurrences or events, and their ability to believe in a “supreme being.” Interestingly, an identical study was performed at a university in the Middle East with identical results.

That is what the data shows.

The researchers’ conclusion was (predictably) that people with this ability were “making up” God to explain the connections that they saw, but which didn’t really exist. Although a comparison to the mathematician John Nash in the movie A Beautiful Mind was never explicitly made, the implication was there – or perhaps that’s just my “beautiful mind” connecting more dots that aren’t really there.

But starting with a different set of presumptions, a different, equally valid conclusion is also possible. Perhaps the “dots” and the connections linking them really do exist, and people of faith (through the eyes of faith) are able to see those connections.

In the context of our current discussion, people of faith can see connections between events – even painful events – which lead to hope. On other hand, people without the ability to connect the dots see only random events – which leads to the kind of despair that we see around us everyday.

But what if the universe is just random? Well, that is a possibility, but then we would have to ask ourselves why the universe doesn’t act randomly. In fact there is a whole area of mathematics (called chaos theory) that is dedicated to the study of things that at first appeared to be random – but aren’t really. For example, I work with computers and something that you might think should be rather easy is actually very difficult: How do you calculate a sequence of numbers that are truly random (i.e. there are no patterns in the sequence of numbers)?

Note that this usage of the word “chaos” is actually a redefinition of the word. Prior to the 1970s, random and chaotic meant the same thing – and in some areas still do.

Spoiler: You can’t – this is why the biggest lottery in the U.S., PowerBall, uses physical balls in a television studio in Florida. It’s still not random, but its chaotic behavior means that it’s also not predictable, which is good enough for a lottery.

So if the universe really isn’t random – how are we to explain the order that we see everywhere we look? Well, perhaps the answer lies in what people of faith have known for untold millennia: everything has a cause, and The Cause is someone who is knowable.

In Christ, Amen ☩

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A prayer for when you don’t understand what is happening…

“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 order with which You created the cosmos. But today I want to bless you especially for bringing order to my life, even when I don’t see the patterns. Give me the grace to experience true respite. Amen.”

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Music to Soothe the Savage…

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

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

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

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

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

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

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

“What did I do wrong?”

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

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

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

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

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

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

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

Music hath charms to calm the savage beast

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling savage…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for who You are. But today I want to bless You especially for a particular aspect of who my loved ones and I are. You have created us to be able to enjoy the music of others and the ability to create music of our own. Thank you for putting in our hearts the desire to make a ‘joyful noise’ in Your presence. Amen.”

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Denial as a Way of Life

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…

Another week past. Another week of watchfulness and (hyper) attentiveness. Another week of waiting for the “train to arrive.”

In the past, I have talked about how having a loved one with a terminal disease is like standing with them on a railroad track and watching the headlight of a train getting closer and closer. Well, to carry the metaphor further, the crossing guard arms are now down, the warning bells are dinging, and the train is blowing its horn.

This week we weighed Janet, and she is down another pound to an even 90 (or a bit under 41 kg). She is eating some, but not enough to maintain her weight – let alone gain any back. The “solution,” of course, is a feeding tube, or peg. However, Janet decided against that option years ago, and has that choice documented in her living will – along with a DNR (Do Not Resuscitate) order.

There have been those, even in our own family, who have asked how I could “allow” that. Now there is a funny word to use in relation to Janet: allow. She has spent her entire life as an independent person doing what she believes is right, and there is every reason to believe that she will die the same way – doing what she believes is right.

But more to the point, even if I were so inclined as to override her long-held wishes (which, by the way, I am not) what would be my logical argument, my justification? There is none.

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Once I was attending a caregivers conference and I asked how to help our son recognize the seriousness of his mother’s condition. I remember the session leader say,

“So he is in denial?”

To which I replied,

“Like a Pharaoh… ”

– a word play that I guess works better with an American southern accent where “denial” and “da Nile” are pronounced essentially the same.

When you start researching the topic of denial, the first thing you discover is that there is considerable disagreement, even among professionals, about the meaning, importance, and usefulness of denial.

For example, some point out that it is one of the first stages of grief and loss, and so has to be worked through on our way to the final goal of acceptance. Others see denial as a coping mechanism, a form of emotional hysteresis that helps people deal with things that are changing “too fast.” While still others see the term itself as being a way of judgmentally shaming a person into complying with our wishes.

And then there are the related issues, such as when denial takes the form of turning an inherited genetic disease into a “family secret.” But even here we hear people bloviating about “pros and cons” – though frankly I am still trying to find even one “pro.”

Finally, denial is also a lens through which you could view much of what I have written in the past 7 or 8 months. While my intent was to write about grieving, it is equally true that many of those early themes were also about coming to grips with reality and refusing to deny that things had fundamentally changed. To see what I mean, start with this link and, if you haven’t done it before, read all of our story.

From here, there are literally dozens of different directions that this conversation could take, but for now at least, I’ll concentrate on two that I see as being particularly significant for both caregivers and the ones that they are caring for:

Acceptance
The problem with acceptance is that many people think that they have come to accept the reality of what is happening in their lives, but are still living very much in denial. You see, acceptance isn’t just a mental exercise of intellectually recognizing that a given disease will be fatal – someday. It means accepting the reality of the negative consequences today – including those that seem too great to bear.

To begin with, accepting an unpleasant medical diagnosis can also mean admitting a weakness: a potentially bitter pill for someone who has prided themself on their independence and self reliance. Acceptance can also mean facing up to some big fears and scary symptoms.

For example, the list is long of HD patients who have been denigrated for apparent drunkenness, including Janet’s older brother John, who was accused of coming to his daughter’s wedding drunk. But luckily for him, Janet decided to not make her diagnosis a “Family Secret” (see below).

Moreover, many have an almost primal fear of people who are acting strangely or erratically – or of being someone who is acting strangely or erratically. In the same way, many people feel uncomfortable and even threatened by people that they can’t communicate with – whether due to disease or difference in language. We often have images in our mind of what “they” are like, and don’t want to be seen as being one of “them.”

Finally, there is the matter of “burdening” our loved ones. If you are ill, you likely do not want to think about your loved ones dealing with your decline and death.

Consequently, for all of these reasons – and more – we try to think of ways to hide what is going on. Unfortunately, hiding doesn’t work very well:

Hiding From Reality
The thing to remember when entering into this sort of conversation (either with yourself or someone else) is that there are no quick fixes, but rather a potentially long process digging through the layers of an emotional onion, or if you prefer, a parfait.

Family Secrets
While I will be discussing this matter in the context of chronic diseases – especially those for which either the disease, or the predisposition to contract the disease is hereditary – the following discussion would apply equally to any situation in which an individual or family decides to keep secrets including, but not limited to, sexual abuse, addiction, divorce, infidelity – even adoption.

For more information, try searching online for: “Why do families keep secrets?” What you will find will be enlightening, and occasionally disturbing.

As mentioned above, one of the first things that the “professionals” will tell you about family secrets is that we need to balance the pros and cons of keeping the secret. The problem is that while being open about the challenges that your family is facing may be uncomfortable or even painful, choosing to hide what is going on is truly toxic.

For example, my ex-wife and her new husband decided to attend a church that would not have welcomed them had the church known that she was divorced. To solve the “problem” imposed by the existence of the two children I had fathered, they simply changed the kids’ last names (for the sake of the church) to match their step-father’s. While this might have seemed like an easy solution to a problem, consider for a moment the day-to-day impact that it had on their family life.

Even leaving to one side the basic question of why anyone would want to belong to such an organization in the first place, there were many other ramifications to this one little secret. They couldn’t invite friends from church to school plays or sporting events because the friends might hear the kids being referred to by the “wrong” names. For the same reason, they also had to keep “church friends” separate from all their other acquaintances.

Likewise, when making prayer requests, or seeking counseling on even unrelated matters, they had to worry about whether they are saying too much or whether the request would give away the secret. And imagine the emotional burden of having to watch every word that came out of your mouth to make sure your story stayed consistent – and all that for the comparatively simple secret of a changed last name.

(By the way, in case you are curious, the secret was not kept successfully – my bad – and they were told to leave the church by the pastor.)

Now try to imagine what it is like to try and hide something like a chronic disease. While researching this post, I found this link from a few years ago about the stress of hiding Parkinson’s Disease.

While I understand that people have a variety of reasons for keeping quiet, I also understand that trying to hide the inevitable is the very definition of a quixotic quest. Additionally, when people do find out, you will still have to deal with all the same reactions – plus more. The two most common reactions are anger and disappointment.

  • “Why didn’t you tell me? I thought we were friends!”
  • “If I had known, I could have done more!”
  • etc.
  • etc.
  • etc.

I also understand the desire for privacy. In fact, as it applies to medical matters, the principle of privacy is (theoretically at least) enshrined in federal law here in the US. According to that law, we “own” our health status, and have the right to decide who else knows about it. But ethically, what happens to the right of privacy when the disease is a family matter? To make things very concrete, if Janet had been more “private,” her brother John might have gone to his grave A) not knowing he was sick, and B) with people thinking he was a drunk.

Still we need to acknowledge that having people know your secret is no guarantee of smooth sailing. There are always the twin problems of Stigma and Shame – which are really the same problem. The only difference between the two is who is doing the judging: Stigma is being judged by someone else and being found wanting. Shame is exactly the same thing except the judge is you.

Unfortunately, even in the 21st century, there are still way too many people who view chronic disease and other misfortunes in life in terms of whose “fault” it is. The people are still with us who asked Jesus why a man was blind, “…did he sin or was it one of his parents?” But in the final analysis, what difference does it really make? We should not stigmatize others, nor should we shame ourselves.

In Christ, Amen ☩

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A prayer for when you are in denial…

“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 that You offer. But today I want to bless you especially for standing by me when I am in denial about the direction that life is taking me. Give me the courage to face the future without flinching. Amen”

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Nursing Home? Now?

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 I’m continued to work downstairs so I could be near Janet. Things are going well except that Janet has an open sore on her bum. The nurse said it’s not a bed sore and they have given us some cream to put on it that is supposed to help it heal.

The other night, Janet called me and told me that she needed help getting into bed, and turning off the TV. She also had a tablespoon that she needed me to put in the dishwasher. Not a problem except that:

  1. She was already in bed.
  2. The TV was off and the room was dark.
  3. There was no spoon.

She may have been dreaming, or this may be something new – only time will tell. Perhaps it is related to something else that I have noticed: some time ago, Janet started losing track of what day it was. She has just started having trouble distinguishing day from night. The other afternoon I was finishing up my work for the day and Janet asked me what time it was. When I told her that it was 5 o’clock, she looked at me strangely and asked me what was the matter, couldn’t I sleep? Although I had been sitting next to her all day working, she thought it was 5 in the morning.

This week, I spoke with a family member of Janet’s who related all the people who (decades ago) might have had HD but were either diagnosed with something else, or simply passed off as unpleasant people that you didn’t contact unless you absolutely, positively had to. She spoke passionately about how bizarre it is that people have this disease in their family and they don’t want to talk about it. I had to tell her that I didn’t understand it either.

For me, the whole conversation really drove home two points: First, if we are open to the change, we can derive from our caregiving experiences a perspective that fundamentally alters the ways in which we interact with others. Maybe that guy who cut you off in traffic wasn’t a “jerk.” Maybe he is carrying around a pain that he can’t begin to express and you can’t begin to imagine. Second, what a blessing it is to have a definitive test for HD! As hard as it has been dealing with this disease, I can’t imagine going through this and not being sure what it is that we are fighting – but until 1993 that was exactly the situation we were in.

Bottom line is that I believe we owe a tremendous debt not only to the doctors, but also to those families in Venezuela who suffered in silence from the disease and the associated social stigma for generations. In the end, the thing that made the discovery of HD’s genetic markers possible was the unique circumstance that everyone in the region around Lake Maracaibo that had HD all shared one common ancestor from the 1800’s – who, by the way, has today an estimated 20,000 descendants who are at risk.

Thanks to Dr Huntington, we have a description of the disease and a name. Thanks to the people around Lake Maracaibo, Venezuela, we know what causes the disease that Dr Huntington identified. Thanks to the ongoing research in many countries, the cause identified in Venezuela has led to the testing of several potential treatments – a couple of which are showing great promise. The fact is, all these points in time are nodes on a golden thread that someday will end, not with just treatments for this disease, but with its eradication. Someday, someone will say, “I am the world’s first HD survivor.” and then in an even more distant time, “I was the last case of HD on earth…”

Consequently, no node along that thread is more important than another because if you take any one of them away, the thread breaks and we are left in a world of pain, superstition and uncertainty. So while the future may still be murky, we at least know what we are up against – and that’s not nuthin’.

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This week we are going to consider one of the common questions in the support forums – whether it is explicitly stated or not. This question appears in post after post written by caregivers who are at the ends of their figurative ropes. While the words of these messages might take the form of “rants,” the subtext lying just below the surface is often a very simple question:

How do I know when I’m in over my head?

Which, let’s be honest, is just a gentler of the way of asking the question that everyone is afraid to ask, and the “professionals” are apparently afraid to answer:

Is it time for my loved one to go to a nursing home?

I know that during the time that I have been caring for Janet, I have asked that question repeatedly of doctors, social workers and counselors. Unfortunately, the closest I ever got to an answer was,

“I don’t know, but families typically wait too long…”

So I did what people do these days to learn things: I tried looking online. However, even there I found little useful information because everyone seems more interested in telling me where to put Janet, than in telling me how to determine if she even needed to be in one.

What I have found is that a large part of the upset that people feel about putting someone in a care facility can be self-induced, because the caregiver failed to evaluate three big questions:

1. What is your loved one’s current situation?
This is a big one and potentially confusing, as well. The point here is you need to know and understand, as dispassionately as possible, your loved one’s strengths and weaknesses. However, while your opinions may play a role, in and of themselves, they aren’t enough. Your loved one’s abilities need to be measured, and that is where ADLs come in to play. The acronym stands for Activities of Daily Living, which is a term used in healthcare to refer to people’s daily self-care activities.

Common ADLs include the ability to feed oneself, bathing, dressing, grooming, work, homemaking, and toileting – all pretty basic stuff. Another ADL that requires a bit of explanation is functional mobility, often referred to as “transferring,” it is a measure of the person’s ability to walk, and to get in and out of a bed or chair. Don’t be anxious to rush past this one. Too many caregiving experiences come to a tragic, premature end as the result of a fall and a broken bone.

Now the tricky part of this sort of evaluation is that these measures are not simply black or white. Rather, the evaluation is all about analyzing the shades of gray! However, over the years, the medical profession has developed a number of tools for formally assessing your loved one. Common ones include the Katz ADL scale, the Older Americans Resources and Services (OARS) ADL/IADL scale, the Lawton IADL scale and the Bristol Activities of Daily Living Scale.

Normally, these evaluations are performed by trained personnel one-on-one with the patient, but you may be invited to assist in the evaluation – especially if your loved one has trouble with verbal communications. But if you are so called upon, remember that unless you are specifically addressed, your job is to help them communicate what they want to say. Of course, if they say something that is unequivocally false, by all means point it out, but don’t put words in their mouths.

Also think about current living conditions. Are they at home alone or are they living with you or another caregiver – such as an equally infirm spouse? Are they open to change? What sorts of changes will they likely accept? My mother, for instance, was absolutely insistent that she never become, “… a burden to my children.”

2. What is best for your loved one?
Clearly, this is a complicated question. The complication arises because the clause, “What is best…” implies a concern for their needs, but which needs? There are many categories that we could insert here, but to get a just a taste of what we are confronting, consider for a moment how overloaded a term the word “health” is. Everyone wants to be “healthy,” but nobody has a definitive meaning for the word or even a complete list of all the possible subcategories (mental health, physical health, spiritual health, financial health, etc.).

Next, what happens when the needs raised by one category are in conflict with the needs of another category? For example, in a mad rush to save peoples’ physical lives from a virus, we sometimes find ourselves killing them emotionally and spiritually. At one point, not long ago, the word “holistic” was being bandied about frequently in terms of healthcare, but no longer. Only the truly brave should take the time to contemplate what that fact says about us as a people.

Finally, in addition to needing to do a lot better job at prioritizing a person’s needs, we also need to think about interpersonal needs – such as when one or more of their needs is in conflict with a need of ours.

After my mother had her last stroke, she was left without the ability to speak, but made it clear that she didn’t want additional care: she didn’t want food or water, it was time for her to go. My son was visiting with us at the time and he participated in the conversation with the doctor where the decision was made to move her into hospice. At the end of the conversation, I asked him how he felt, and he gave a raw, honest answer. He simply said, “Selfish.”

Her need was to go on to what was next for her. His need was to not lose his grandma.

And unfortunately, that is where I’m going to have to leave this question. I don’t have any answers to give. But maybe that is the point. Maybe this question is one for which there is no “final” answer. Maybe this is a question that you must hold open and wrestle with every day.

3. What resources do you have at your disposal?
When people typically use the word “resources” today, it is most commonly used as a euphemism for “money,” and while the financial resources you have at your disposal are important, they are by no means the only resource of importance. As unhappy as this fact makes certain types of people, there are problems that can’t be fixed by “throwing money at them.” Still, there are things that money can buy to help keep a loved one out of a nursing home. For example, I have commented in the past about the interior security cameras that I installed to help me keep an eye on Janet – they weren’t inexpensive, but compared to a nursing home, they were a bargain.

My recommendation is to be systematic in analyzing all the resources that you have at your disposal. For example, you may have significant familial resources. Our situation is a good example of that. I don’t know if Frannie understands the positive contribution that she has made to her mother’s life, but she is amazing. Our son has also provided comfort and support, and an unending string of milestones that motivated Janet to keep going: graduation from college, military commissioning, marriage, children, and most recently his promotion to Major. In a broader context, even my children from my previous marriages have been there for her with prayers and advice.

In the same way, take some time to analyze the social, religious, governmental resources.

In terms of social networks, I have heard that there is no easier way to identify who your real friends are than to simply start honestly answering the question, “How are you doing?” But candid answers to that question can do more than simply weed out the smiling faces that really aren’t interested, they can also serve to attract people to you that are interested and concerned.

In this drive towards emotional honesty, don’t leave out honest conversations with your pastor, minister, priest, or rabbi. Likewise, if your loved one belongs to a different church (or faith) contact their clergy, as well. And be diligent to educate yourself about spiritual practices that might be supportive to them. For example, if your loved one attends a liturgical church (basically Catholic, Orthodox, Lutheran or Episcopalian) they may draw strength from Eucharistic visits by a member of the clergy, or a specially commissioned lay person called a Eucharistic Minister. Such visits are a time for conversation and prayer, but also an opportunity to receive Communion or the Eucharist. Last week I talked about how much such a visit meant to Janet. Just let them know ahead of time if there are any dietary restrictions – like no alcohol or gluten intolerance.

Finally, in terms of government (or quasi-governmental) support, many jurisdictions are trying to make it easier to get help. For example, in Texas, calling 211 puts you in contact with either an automated system or a human counselor that will help you identify your needs and the resources that might be available to meet those needs.

While you consider those questions (and others that you may discover on your own), I want to again point out how fast situations can change. For example, your loved one might be fine one day and but thanks to an injury or an acute medical condition that suddenly arises, they might need a short-notice placement in a nursing home or long-term care facility.

The thing to do is plan for contingencies. Be looking at places before you need them, and have your options narrowed down to a short list of two or three places that you would be happy with if a critical need should suddenly arise. Also be thinking about potential legal issues, and remember that elder law is a specialty (in the US at least) so have in your “back pocket” the name or names of lawyers in your area that have good reputations and are skilled in this aspect of the law, should the need arise.

Above all, make sure you have a medical POA (Power of Attorney) in place. This critical document must be executed while your loved one is still mentally competent to make decisions. Don’t forget to sort out their desires for end-of-life care.

In the US (and other places as well) there are also volunteer ombudsman programs that can help you navigate the often choppy waters of getting help for your loved one. Another good source is this website. Although it is managed by (of all things) an internet marketing firm located in British Columbia, it presents solid information and has no obvious “axes to grind” that I noticed.

Finally, remember that if you decide that the best thing for your loved one is to move to a long-term care facility of some kind, that placement changes your responsibilities as a caregiver – it doesn’t obviate them. For example, an unfortunate fact is that elder abuse is real and is unfortunately growing due to the lack of oversight due to such things as Covid-19 mitigation measures. At all times, as their advocate, you will need to be a bulldog: a polite, convivial, friendly, firm and (when necessary) courageous – bulldog.

In Christ, Amen ☩

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A prayer for when you need wisdom and insight…

“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 all-knowing presence. But today I want to bless you especially for the promise to give knowledge to those who earnestly seek it. I need your wisdom and discernment, please. Amen.”

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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”