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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.”

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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.”

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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.”