Thoughts on Thanksgiving

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, in the U.S. at least, a holiday was celebrated (Thanksgiving) that had its foundation in the earliest years of our country’s formation, and was celebrated sporadically until it was formally defined by a Presidential proclamation in 1863. Although this event occurred during an exceedingly dark time in our nation’s history – our Civil War – President Abraham Lincoln declared the last Thursday in November to be a day of “Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens.” That much is history.

This year, Thanksgiving in the Porter household was a bit different. To begin with, Frannie and I can’t be out of the house at the same time now, so rather than going out to dinner, we decided to do Thanksgiving dinner here at home. I got a 12.68 lb turkey and fixed it with stuffing, mashed potatoes and gravy. Although the recipe specified 15 minutes per pound, the actual cooking time according to the all-knowing pop-up timer was slightly less that the 3 hours, 10 minutes and 12 seconds that the formula predicted.

In addition, Frannie and I ate on TV trays in the living room so we could be near to Janet – not exactly Norman Rockwell, but it got the job done.

Frannie in her Huntington’s T-shirt

As usual we did the “Five Kernels Of Corn” ritual, and while our mouths were still filled with the requisite thanksgiving and praise to God, this year some of the things for which we are giving thanks would probably seem a bit odd for those on the outside of our “community” who, looking in, might wonder what there is to be thankful for.

For instance, this year my first kernel of corn was, “I am thankful that Janet has started having bowel movements again, and is continuing to pass urine.” Strange, right? Not if you have ever cared for someone in the end stages of a terminal disease.

My second kernel of corn thanks God that things have worked out such that Janet can be in hospice here at home, protected from fearmongers that would isolate her from what little humanity she has left in order to “keep her safe.” Here at home, she has her husband and daughter to care for her, and while we might not be the most professional at times, we love her and care about her as a human being. Moreover, we recognize that the ultimate outcome is not in our hands. Although we might try to ignore the fact, this point is also true for all of us. Worry cannot add a single second to your life: all it does is steal your ability to live the life you have. There are no guarantees, and (with the possible exception of one or two) everyone ever born has died.

The third kernel of corn reminds me to be thankful that Janet is not surrounded by medical instruments and monitors to catalog every beat of her heart and measure every breath she takes. I did that once with my son Larry, who died when he was three days old. Those three days were beyond indescribable because, among other things, it turned his tormented little blue body into a machine that they had to keep going for one more hour, one more minute, one more second.

Unfortunately, that attitude can exist even without the monitors. And seeing humans as but mere machines has other implications, like the recent ruling in Denmark that says it is now permissible for a doctor to sedate a person to keep them from interfering with those who are “assisting” them with their “suicide.” Can you say “Orwellian?”

Kernel number four is for my daughter Frannie. She has been, and is continuing to be, amazing. She is daily dealing with things that women her age should not have to be concerned with. Together we have learned how to tag-team Janet’s care and how to work together to do such things as change the linens on a bed while it is still occupied.

The fifth, and last, kernel is for me a thankful reminder – and reassurance – that the words put down by the founders of our nation are most certainly true, that we, “ … are endowed by our Creator with certain inalienable rights … ” – a truth, by the way, which they did not create. It was another truth that they discovered, not unlike the truth of gravity or the truth of a (roughly) spherical world.

However, this bold statement changed the world, because it made clear the fact that human rights are not given by governments and rulers, but that they come from God. Secondly, the document as a whole proclaimed that that wasn’t true just for the citizens of thirteen British colonies in North America, but rather, this truth is fundamental and applies to all people regardless of who they are or even when and where they live. This point, in turn, should give rulers pause when they try to either take credit for, or abridge the rights of a people. Though it rarely does. I wonder what was the last thing to go through the minds of Benito Mussolini or Nicolae Ceausescu – I mean besides the bullets.

Therefore, while there might be much to be aware of, there is also much to be thankful for even in the hardest of situations. Yes, it is true that Janet’s health is failing day by day. But it is also true that when her end comes (whenever and however it might occur) she will not simply meld into some impersonal cosmic consciousness, evaporate into nothingness, or be patted on the head and told to go back and try again.

When she leaves here she will be going on to another somewhere, where she will meet the Someone who created her. Then, free of the Huntington’s Disease, she will be reunited with those who have loved her and gone before, “ … back a thousand generations, to the beginning of the worlds.”

In Christ, Amen ☩

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A prayer for when you are feeling less than thankful…

“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 all the manifest gifts that You bestow upon the world that You created. But today I want to bless You especially for the gifts that we remember on Thanksgiving. Please give me a perspective that allows me to see the blessing in all that You bring into my life. Then show me how to share those blessings and truths so as to enlighten the hearts and souls of my fellow travelers. Amen.”

Caregiving Beyond “Fear and Loathing”

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…

It is clear that death is drawing nearer. It would be nice if other things were equally clear. Dying is apparently a longer, more difficult process than I imagined. To be brutally honest, my main experience in watching people die has been via the medium of old westerns on TV or at the movies, where the process takes a maximum of about 30 seconds. True, my mother died a few years ago, but after standing by for 48 hours at her bedside, she waited until I went out for five minutes to get a sandwich, so all I got was a call from hospice that she was gone.

Old memories and attitudes continue to replay this week, though some are far from being “old friends” that have come to visit one last time. For example, this week Janet started to refuse her sublingual anxiety med because she said it made her constipated – and it does no good to remind her that she hasn’t had a bowel movement worthy of the name in several months, long before she started taking the sublingual meds. Her reply is always, “Well, I know my body!” – another very old tape that has been replaying a lot this week. I have often wondered how things might have been different if she had listened to her doctors, rather than fight them every step of the way. No doctor is perfect, but no doctor is 100% wrong, either.

We had to get her Foley catheter replaced because her original one was leaking. She has also become obsessed with the time. I bought her an “Alzheimer’s Clock” a couple months ago with letters big enough for her to read, but I suspect that she can no longer see things clearly that are more than a couple feet away.

This week we also decided to do Thanksgiving at home for the first time in several years. Typically we have gone out to keep things simple, but with Janet so ill, Frannie and I can’t be gone at the same time so I got a small bird and we are going to do it on our own again. In addition, we thought that Frannie’s boyfriend Leroy was going to eat with us, but his presence is required at his own family’s table – though he will be able to come by in the evening for pie and coffee. The end result is that we are going to have more turkey than we need for two, so if you are in southeastern Texas and alone, PM me and you can have Thanksgiving with us. Our place isn’t large but I think that we can fit in one or two more friends.

PS: If you like white meat, that is a “plus.” Frannie and I don’t.

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Maybe it’s the time of year, or maybe I am just becoming more sensitive due to where Janet is in the process of dying, but I seem to be seeing more posts expressing, as the title suggests, considerable “fear and loathing.” For example, fear of the future or the judgement of others, or self loathing rising from an unreasonable belief that you should do more, and complain less. The many other sources of these feelings are well known, so I won’t attempt to list them all here – besides you probably already in mind your own private list of triggers: that thing (or parade of things) that popped into your head as soon as you read the title.

This week I was conversing with a friend who has been amazing, caring for various members of her family for 40 years, yet she described being angry with herself for not doing more, and not being able to simply “snap out of it” when her latest loved one died. But it doesn’t take death to bring on the “fear and loathing.” I have seen the same issues come up when considering various care options for a loved one who is still alive. While the ”big one” is always the issue of whether it is time to consider a nursing home, it can also arise over issues such as needing to go to work, hiring an outside aide, preparing meals, or even asking for help from other family members.

And then there are the loathsome familial guilt-trippers. Like for example, the sister-in-law who lives two doors down and is constantly telling you what you should be doing to take care of your mother but refuses to lend a hand because, “She isn’t my Mom.”

The thing to remember when considering these issues is that there is a fundamental paradox involved. The people who logically have the least reason to feel these negative emotions (and guilt too, we can’t forget guilt!) often feel them the most strongly, while the people who have the most reason to feel them, rarely ever do. Why is that?

There may be many reasons, but a pattern I have observed over and over again is that good caregivers are never satisfied with the level of care they are providing. Consequently, they are constantly critiquing their own job performance and constantly finding it lacking. Combine this type of self judgement with the obvious fact that many caregivers are isolated from other human contact and you have the perfect setup for fear and loathing, with a heaping side dish of steaming guilt.

By contrast, we have what we shall call the good-enough caregiver. These people concentrate not on what the loved one needs, but what is good enough to be able to check all the right boxes. Just as the previous scenario is a recipe for fear and loathing, so this one typically ends in self-proclaimed absolution. “After all,” they reason, “what I’m doing may not be perfect, but it is good enough.”

But are those the only two options? Frankly, neither one is particularly appealing. For a little added insight, I once had a friend who was in AA. It was about this time of year and we were talking about how he gets through the holiday season sober, and his answer was telling. He said the way to get through it in one piece was to not get “too.” When I asked him what I meant he said, “You know: too happy, too sad, too depressed, too carefree, just don’t be ‘too’ anything. To stay out of the ditches, steer for the center of the road.”

So what does steering for the center of the road look like in caregiving? Well, the first step is make sure that we are making the most important thing, the Most Important Thing. Which is to say, making your loved one’s care the central focus of the exercise.

Next, make room for growth. We need to recognize that while constantly looking for ways to improve the quality of care is a good thing, that improvement is itself a journey, not a destination. Whether you are caring for your spouse as I am, or building automobiles like Toyota, the proper goal is not quality, but continually improving quality. So rather than beating yourself up for not as being as good as you will be tomorrow, acknowledge yourself for being better than you were yesterday.

Finally, we need to recognize that we do not have unlimited resources. While there are many things that we as caregivers can and do learn to do ourselves, there will often come a time when our loved one’s needs will out-strip what we can do, or learn how to do. When those situations arise, it is time to call in the people or services that can provide the needed care. In that case, your job as caregiver is to help identify, and set up the services that will provide what your loved one truly needs – which might require a bit of creativity.

For example, there was a situation where a daughter was worried for her parents, Her mother (84) had dementia and her primary caregiver was her father (86). It was absolutely clear to everyone in the family that Mom needed to be in a skilled nursing facility, but Dad wouldn’t hear of it. In his noble mind, it was his job to take care of his beloved, not work for some stranger. The solution: the family found a care facility that they could go into together and share a room. This arrangement gave him the dignity of continuing to fulfill his duty to care for the love of his life, while giving him the support and care that he was increasingly needing too.

So take heart, if you are worried about how good a job you are doing, you are already over the first and largest hurdle: You care and are dedicated to the best of care for your loved one. Now just steer for the center of the road.

In Christ, Amen ☩

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A prayer for when you are feeling guilty and afraid…

“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 divine wisdom and care that gives the cosmos its form. But today I want to bless You especially for the reassurance and strength that You provide. Thank You for holding me up when I feel weak. Thank You for the gift of life that You have bestowed upon me, and that You allow me to share with { Name of your loved one }. Show me every day how to do the job better. Amen.”

Nonverbal Communications

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for bringing order of chaos. But today I want to bless You especially for all the many and diverse ways in which you work to bring order and beauty to my life. Teach me to lift up your order and truth to those around me. Amen.”

Tempus Fugit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are on the way…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being our guide and provider. But today I want to bless You especially for all the ways you support me, the people who you bring into my life, and the knowledge and insights You bestow. But thank You especially for the opportunity to serve others. Amen.”

Waiting on God

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

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

Janet got back from her hospice respite time well-rested and well-cared-for, even if a bit confused. She didn’t understand who was picking her up, or where they were taking her. One thought was that they were picking her up to drive her to Heaven. But then she became convinced that she had been “kidnapped” by some shady operators from a political campaign, but she had forced them to bring her home instead.

While it might be tempting to snicker at or worry about these sorts of expressions, they actually show that her brain is still processing information and trying to do what human brains do best: make sense of the world – even when large chunks of information are missing or distorted.

Another example of the wonder of human consciousness is memory, and everyone knows that dementia means to forget. Nevertheless, there are exceptions. For some unknown reason, while the ability to retain short-term memory in general gradually disappears, something will occasionally “stick” and be retained.

A couple weeks ago when Janet was trying to figure out the logistics of how she was going to get to heaven, she asked me what dying would be like. In response, I told her it would be like drifting off to sleep, but when she woke up she would be looking into the face of Jesus. While that answered her question and put her mind at ease, it did create another issue: disappointment.

Every morning now, Janet opens her eyes, expecting to see Jesus, but instead beholds only me. Being understandably disappointed, she asks the one simple question that has been this week’s focus: “Why am I still here?”

Before continuing, I also want to acknowledge the CNA that the home hospice agency we are working with has assigned us. Latonya is a wonder, always kind and professional, but also playful and friendly. For example, this week she brought Janet some flowers to help cheer her up.

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One of the most common faith-based themes deals with the idea of waiting on God. However, in English, at least, the phrase “waiting on” can carry several different meanings. For example, in some usages it is a synonym for “serving,” as in: “I will be just a moment, I am waiting on another customer.” Occasionally this concept is used in a religious context to describe service to and for God. Interestingly, when considering the teachings of Jesus, the distinction between providing service to God and providing service for God, can get very fuzzy, especially when you consider the degree to which God identifies with the weak and powerless – as when he tells us, “As you have done to the least of these, so you do to me.”

Next, there is the idea of waiting on someone to provide an answer, such as God answering a prayer. We are often advised to pray and then wait on God to provide an answer. As an aside, we are told that God answers prayers by saying, “Yes,” “No,” or “Not now.” However, I have learned that other variations are possible, such as, “Yes, but…” Those are the tricky situations because like Cinderella we tend to hear the, “Yes you can go to the ball,” but miss the admonition or condition that follows.

Then finally, there is the sense in which Janet and our family are “waiting on” God. This type of waiting on isn’t primarily about service – though for those of us around Janet, there is that component. Likewise, we aren’t really waiting for a decision, because all the decisions to be made have been made. Rather, it feels like our task is simply waiting for the right time. But why is that waiting needed?

Well, in a world where we are alone and nothing we do or say impacts anyone else, there would be no need for this type of waiting. However, as you are no doubt aware, that is not the world we live in. Rather, we live in a world of unimaginable complexity. In the secular realm, this complexity is why governmental centralized planning has never worked well, regardless of how many times it has been tried, and it is why the phrase “unintended consequences” is now a standard part of the modern political lexicon.

An interesting movie that played with this idea of interconnectedness and the importance of timing, was a 1998 German film named Lola rennt, or for its English release Run, Lola, Run. The plot is really pretty simple: Lola gets a panicked phone call from her boyfriend Manni, who has just lost a bag full of money that belongs to the mob. If Lola can’t replace it in 20 minutes he will probably be killed. Because she has no car, she has to run across town (in this case, Berlin) and come up with a scheme for obtaining the money.

In a series of real-life instant replays, Lola tries three separate times using different ploys to get the money and obtained from the first two attempts different (unpleasant) results. On the third try, she finally gets the money, only to discover that it wasn’t really needed after all. However, for me, the most interesting part was how along the way she encounters the same people over and over again. Although the timing of their encounters varies by no more than a few seconds, the encounters produce dramatically different results in the lives of the people involved.

The obvious point of the movie is to highlight the chaotic nature of life and the unimaginable complexities of all the possible interactions between people and events. That much of the movie, at least, I can agree with. Unfortunately, the larger framework of the picture ends up being profoundly nihilistic in that the ultimate message is that all of life is left up to random chance. While the main characters (Lola and Manni) end up having what might be called a happy ending, the underlying message is despair masquerading as irony, because they just happened to be lucky – this time.

In that view of the world, the complexity of life results in despair because there is no one who sees the big picture, no one has a plan, and no one has their hands on the control levers. In point of fact, in that view of the world, there isn’t even any reasonable explanation for why the complexity even exists in the first place. In that view of the world, Janet and all the people like her are simply written off as unimportant because no one has a real answer to the question, “Why am I still here?” – let alone really hard questions like, “Why are any of us here?”

However, there is an answer that explains the complexity of the world, and which gives meaning to Janet’s life – and your life too. This answer has such power because it starts with the Creator God’s bold declaration at the birth of the universe that all of creation has value and meaning. We can know this because in Genesis 1, at the end of each creative step, the Creator God proclaims that each part of creation “is good” – an idea that the psalmist echoes over and over again in his glorification of God’s handiwork. The one exception, of course, is the creation of human beings, which He describes as, “very good.”

With that truth as the context for life, meaning and value are always available, because it recasts the hurt, pain, and brokenness of life in terms of renewing and restoring the goodness that was in the world originally, but was lost and is now being recovered through the faithful actions of believers. In this context, my wife – indeed all human life – is of infinite value regardless of age or circumstances because God has declared it to be so. Likewise, our service to others becomes a monument to truth and fidelity in a world that is sorely lacking in both.

In Christ, Amen ☩

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A prayer for when you are wondering why…

“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 how Your nature defines reality for us. Thank You also for not being silent, but speaking out to the world. Thank you for a reality that is plain and open, and not hidden behind esoteric masks. Amen.”

This is a test… This is only a test…

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…

One of the nice things about home hospice is that they offer an option for respite care – which is to say, a chance for the caregiver to get a little downtime to recharge a bit. The way it works varies from one agency to the next, but basically it involves them picking up your loved one in an ambulance and taking them to an inpatient facility for a short period of time of, say, five days.

We had tried once before for respite care, but there were no beds available in the area due to the panic over the virus. This time it worked out. They picked up Janet at 7:30 Wednesday morning and will have her home Sunday afternoon. My biggest two concerns were that A) Janet wouldn’t understand what was happening and B) She could pass while in their care – followed, naturally, by an entire alphabet of other concerns.

In order to address Concern A, we began talking to her about it as soon as I got word that all the arrangements were in place. She was confused at first because she thought they were coming to pick her up to take her to heaven (see last week’s post), but eventually she understood that she would be back home on Sunday.

Concern B has been a harder nut to crack because the truth of the matter is that she could die in the following five days – this is, after all, a hospice program and not an adult summer camp. The way we addressed it was to say our “final” goodbyes when she left the house, and we made sure that we showered her with hugs and kisses – even as they were loading her into the ambulance. But that got me thinking, isn’t that how we should be acting all the time?

Why should we wait for a loved one to be in hospice to make sure that they understand how much they are loved? We, of course, shouldn’t. But we all, of course, from time to time, do.

And what about the rest of the alphabet of concerns? All you can do is acknowledge that despite what culture tells us, we are not in absolute control of our destiny. But the bottom line for us is that these concerns have been our reality this week.

This week has been a chance to begin to experience life as it will be when Janet doesn’t need all of my attention and care. Like I say in the title of this post : This is a test… This is only a test…

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Anyone who has ever bundled up a child for their first day of school, summer camp, college, or basic training has had to face the specter of separation anxiety – which is really just a broad-brush label for responses to situations in which relationships are changing. Unfortunately, changing relationships is the hallmark of being a caregiver for someone with a chronic or terminal disease. To make matters worse, the speed and severity of these changes are beyond our control – even as we try gamely to control them.

However, if you look up the topic of separation anxiety online it is often characterized as a “disorder,” and worse, a disorder that primarily affects children and infants. In other words, if as an adult you are feeling this sort of anxiety, the implication is there that something is wrong with you – and perhaps even that you should just “grow up.”

To be fair, the problem isn’t with psychological professionals, counselors, and therapists as they can, and typically do, understand the nuances of our situation. The real issue is all the folk-psychiatrists that caregivers can encounter on a daily basis – which is to say, family members, friends, co-workers, and acquaintances.

But even if we accept the proposition that these people are doing the best they can, we have to recognize that telling someone who is suffering from guilt-driven separation anxiety to “take it easy” or “give yourself a break” does about as much good as telling someone with depression to “cheer up” – which is to say, none at all. So here are a few things that caregivers need to consider as they fight their way through this situation:

There are no quick fixes: Recovery from this sort of anxiety can be a long hard road because turning around and changing direction can feel an awful lot like giving up – even when we see that the way we are doing things now is not working. Sudden shifts can and do happen, but they are not the norm.

Change is inevitable: It might be nice to fantasize about a universe where everything is static and constant, it is in the end just that: a fantasy. The world changes, people change, relationships change, everything changes. Being in a state of flux is the normal condition of everyone and everything in the, at times maddening, headlong rush from “what was” towards “what will be.”

No one has infinite mental and emotional resources: Simply put, we all get tired and need to rest. Getting the rest that we need in order to function is not weakness, giving up, or copping out. Even Jesus took time to rest.

No one is infinitely wise: We all make mistakes all the time. That is a fact. But it’s also a fact that people usually make more mistakes by failing to act than they do by acting. So do your “due diligence,” decide on a course of action, and then act. A plan doesn’t have to be perfect when you start. Remember that you can’t steer a parked car. Movement, action is called for.

Professional caregivers can care as much as you do: One of the challenges that I ran into when considering putting Janet into inpatient hospice for five days, was the worry that the people there wouldn’t know how to take care of her. They don’t know how she reacts or feels and they don’t know what she likes. While that much is true, it’s also true that the vast majority of doctors, nurses, and CNAs are caring, tender people who will treat Janet like she is a member of their family.

Caregiving is a team sport: In a lot of ways, this point goes along with the last one. As a caregiver I am one (vital!) part of a care team. The other team members may not see my loved one every day, or ever, for that matter, but that doesn’t mean that everything is dependent solely upon me. That is why there is a team – so one person doesn’t have to do everything. In engineering terms, having a team means you as the primary caregiver are not a “single point of failure”.

You are never alone: While this point might sound a lot like the previous one, there is a difference. In addition to being part of a team that together takes care of Janet, I also have backup and support for my particular job on the team. This point is critical because the basis of my relationship with Janet is unique among the team members. Our relationship is based on a covenant between God, Janet, and myself, which means that my not being alone means far more than somebody being there to lend me a hand. It means that regardless of how bad things might seem at the moment, there is a hand on the wheel that is steadier than mine and an eye on the road ahead that is far clearer.

In Christ, Amen ☩

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A prayer for when you are tired…

“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 limitless strength to be found in You. But today I want to bless You especially for providing caring and skilled healthcare workers to care for my loved one while I rest, recuperate, and heal for this last leg of our journey together. Strengthen and guide me so that I might remain faithful to the end. Amen.”

The Veil Grows Thin

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 has been a week for spiritual conversations – some of which I have been a party to and some that I have not. However, when talking to someone with dementia, you have to always be aware that words do not always mean what they seem to mean at first blush.

For example, this week, out of the clear blue sky, Janet asked me, “How do you get to Heaven?” I first tried to reassure her that she had accepted Jesus many years ago, so there was no reason to worry. But then she started asking followup questions that made me realize that, in this particular case, the answer to the question wasn’t “accept Jesus as your personal Lord and Savior.” For Janet, this question wasn’t about spirituality, but rather was a matter of logistics.

Remember, this is the woman that would not leave on a trip until she knew exactly what roads we would be taking, where we would stop for gas, and which hotels we would stay in along the way. She was asking about Heaven in the same sense that one might ask, “How do you get to The Grand Canyon?”

She is saved, she knows she will be in Heaven. She was wanting to know how she is going to get there? What does she need to wear? Who will come get her? And so on. Think: prepping for summer vacation.

The lesson I learned was that just because I understand the words, I shouldn’t assume that I understand the question. This problem exists in other languages, but in English there can be a certain ambiguity that used to be exploited masterfully by comedians such as the Marx Brothers or Abbott and Costello – and still is by politicians and lawyers.

Sometimes a loved one also needs to be reassured that everything will work out in the end. For example, every morning, I ask Janet how she is doing. One day this week when I asked her, she said, “Not good.” When I inquired as to why, she said, “I grew a conscience overnight.” So I asked her what that meant. She said she was sorry, and she asked me if she was a “bad person.”

I told her that she is sick with Huntington’s Disease and that is responsible for much of what has happened. And the things that she is responsible for have been forgiven, because Jesus died for us.

“So God and I are good?” she asked.

I assured her that she and God were indeed good. That’s when she got hungry, so I gave her some yogurt and she fell asleep.

Finally, this week, I was out in the garage doing a bit of cleaning up. Going through a dusty box laden with cobwebs, I came across an old journal of Janet’s. When Janet and I first met, I had bought her this journal, advising her to fill it with, “nothing but thoughts of love, peace and goodness.”

The thing is, I didn’t think that she had ever used it – but she did. On January 31st of 1985 she used it to make a list of good things in her life. This was part of that list:

January 31st, 1985

This entry is the first record of her expressing love for me. Is this precious to me? You can’t even begin to imagine.

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I thought of this topic for a few reasons. First, veils are a common religious and cultural symbol or metaphor. For example, veils are mentioned numerous times in Scripture. Such as in Exodus, where Moses wore a veil after seeing God.

Then there was the veil used in the temple to segregate the Holiest of Holiest (which represented the actual physical presence of God) from the rest of the temple. And, of course, there was the tearing of said veil from top to bottom when Jesus finished what he came to do.

Finally, there are great hymns like My Hope is Built on Nothing Less, the second stanza of which reads:

When darkness veils his lovely face,

I rest on his unchanging grace;

in ev’ry high and stormy gale,

my anchor holds within the veil.

By the way, if you don’t understand the imagery of the last line, do a little research – it will be worth the effort. Hint: As a Christian symbol, the cross didn’t become common until about 400AD. Before that the primary symbol – especially during the Roman persecutions – was the anchor.

And then there are all the ways that veils appear in popular culture, including wedding veils. Then in literature (and not a few questionable jokes) we see references to things such as The Dance of the Seven Veils where veils are used as a device to actually intensify the meaning or power of that which is being “hidden”. And we can’t forget all the places where it is used in the negative sense, such as the unveiling of statues, paintings and plans.

The other reason that it came to my mind is a common belief that when someone is near death, the veil between this world and the next can grow thin, and this week, we had an experience that was – well, I don’t know what to call it, except that Janet seemed to be seeing beyond the veil.

Janet was asleep, when suddenly she woke up and called me over to her bed. She then asked me what my son’s name is.

I said, “David?” (My son who lives in Virginia.)

“No.”

“Larry?” (My son who died shortly after birth.)

“Yes! I’m in Heaven!”

“Do you see Larry?”

“Yes.”

“What does he look like?”

“He’s a grown man with something around his neck.” (Larry was strangled by his umbilical cord at birth.)

Then she repeated, “I’m in Heaven!” several more times, and went back to sleep.

I guess the biggest question that I have had out of the whole experience is this: Why was she seeing a relative of mine? She didn’t see her Mom or Dad, her late brother John who also had HD, or even her favorite aunt (Em) who was also her godmother.

Perhaps it’s similar to a week or so ago when I related that she included my daughter Catherine (Larry’s younger sister) in a list of her daughters. It would seem that my family is now her family, which makes me glad because one of the promises that we made as part of our vows was for our home to be a “place of healing” – and it has been.

In Christ, Amen ☩

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A prayer for when you are surrounded by strangeness…

“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 magnificence of Your creation. But today I want to bless You especially for the glimpses that You provide of the cosmos from Your perspective. Even though many things about the future remain veiled from my eyes, I can be certain that I will have a place in it with You – and I can be certain that it will be better than anything that I could possibly imagine. Amen.”

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.”

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.”

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.”