Posted on

Tending to my Knitting

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…

Even as Janet has continued to fade physically this week – the CNA reports that the difference is visible from one day to the next – Janet is somehow more aware of what is going on around her. For example, one day after lunch I burped rather loudly, and I automatically said, “Excuse me.” Janet immediately replied, “You’re excused.” A small thing, I know, but it is something.

She has also decided that she doesn’t like yogurt and ice cream anymore. So we tried her on baby food. This change has really worked out well, though she insists on being fed by Frannie. Gerber makes small containers of various types including chicken and rice, chicken noodle, pasta primavera and (one of Janet’s new favorites) butternut squash. But these prepared foods have two problems.

First, they are very thin. However, that was fixed using an old trick that I remembered from when our kids were babies. The problem for the babies was that as they were being weaned off of Janet’s breast milk, we had trouble keeping their precious little tummies full. Baby foods, like what we are giving Janet now, were more substantial than milk, but they (especially our son) wanted more. The solution was that several manufacturers also made a flaked rice cereal that was intended to be mixed with water or milk. Mixing it with the baby food, essentially as a thickener, gave a bit of improved nutrition as well. The kids did well on it then, and Janet likes it now.

The second problem with the prepared baby food is that in response to parents’ complaints, the manufacturers stopped adding salt to them. This is good for babies, but often results in the food tasting not unlike wallpaper paste – and bland wallpaper paste at that! So we added a very little salt and the flavors improved significantly. While on the topic of seasoning, we discovered that Janet loves it when we add a pinch of cinnamon to her butternut squash.

Still, she is getting more confused. Today she’s been saying that she is on a “conveyor belt” and is worried that she has “lost her belongings.” I have no idea what that means, but we are trying to reassure her.

Also this week, a cousin of Janet’s sent us a picture of her. The year was 1955 and Janet was serving as flower girl in a family wedding.

I love the smile – how very, very Janet. One day soon she will have that smile back in all its mischievous wonder.

❦   ❦   ❦   ❦   ❦   ❦

In years past, there was a common saying that went, “Tend to your own knitting.” It meant that the person being addressed should mind their own business. Well, this week, I have been tending to my knitting, but in the literal sense. I knit. I don’t knit a lot, and I’m probably not very good at it, but should the need arise, I can still run off a couple of scarfs or a stocking cap. The most complex thing I ever tried was to make a pair of socks. Unfortunately, I used the wrong kind of yarn and they came out so thick they were more like my old Air Force arctic boot liners – they could literally stand up by themselves.

But while I hope that you are amused by the story about the socks, you shouldn’t be surprised by the idea of a man knitting. If you go back to many of the countries where knitting developed, it was traditionally the men who knitted. The craft was thought to have developed as an offshoot of making and repairing fishing nets. Plus, it was part of the division of labor: women spun the wool into yarn, and then the men made things from the yarn his wife created. It was only later that it was hijacked by Victorian matrons to be used as a signal for words that weren’t allowed to be uttered in movies. For example, you couldn’t use the word “pregnant” but showing a woman knitting a pair of tiny booties got the point across just as well.

The neat thing about knitting, from the standpoint of a caregiver, is that it is easy, portable, and relaxing – even meditative. Oh, and don’t forget cheap too. You don’t need a lot of expensive equipment, and the supplies don’t cost a lot, unless you want some kind of fancy yarn. A pair of needles (#8 in the US will do nicely), a skein of yarn, and instructions from the internet, and you are on your way to your first scarf. Scarfs are easy because you just knit back and forth until you run out of yarn and then you’re done. Or if you want, you can tie on another skein of yarn and keep going – it’s all up to you. The project that I am working on right now is the creation of two scarfs for Christmas presents.

There is something about the process of knitting that is extremely salutary to one’s mental state. All you have to do is repeat the same two stitches over and over again, and in the end you get a beautiful scarf. Oh, it might not be as fancy as one you buy in a story but it will be yours.

Earlier I said that knitting is meditative – and it is. The soft tapping of the needles and the still softer whooshing sound they make as they slide and rub against each other creates a wonderfully restful tap-whoosh-whoosh cadence, and as the fabric you are creating accumulates, you get a tremendous sense of accomplishment.

However, if you pay attention, there are some very important life lessons that you can learn from knitting. For example, a single stitch accomplishes little, just as a single act usually has little impact on the world. However, when you combine that single stitch with hundreds or thousands of similarly “unimportant” stitches, a beautiful fabric appears. Likewise, when you take a single act and combine it with hundreds or thousands of others you create a loving, supportive environment for the person under your care.

One of the things that makes knitwear interesting, and beautiful, is the patterns in it. These patterns can take the form of changes in colors or the ways the yarn twists and winds around itself in a fancy cabled sweater. But there’s a secret: In a sense, it’s all an optical illusion. The “pattern” results from how a single stitch relates to the stitches on either side of it, and how a row of stitches relates to the rows above and below it. To a single stitch, or even a row of stitches, there is no pattern – in fact at that level, all the stitches may appear identical and thoroughly unremarkable.

But to the creator, the one doing the knitting of the yarn, there is a pattern. But that pattern isn’t formed by the cleverness of a particular stitch or one row’s brilliant colors. In fact, those sorts of things will often ruin a pattern because they draw attention away from the creator’s intention for the pattern. A truly beautiful pattern only exists in the relationships between the various parts.

As a caregiver, it is easy to feel that the individual stitches of our lives don’t matter very much. For example, will the world come to an end if my loved one’s food is a bit bland? Probably not. In fact, your loved one might not even notice. But that does not mean that the act was pointless or the concern that drove it was futile. It is noticed and it forms a vital piece of the pattern for the world.

We are told of innumerable small, even trivial things that are important to The Creator knitting our world together: sparrows dying, cups of water, tiny coins. We also read that they are all important because they all play a part, sometimes in the causal sense as in this famous 13th century proverb:

For want of a nail the shoe is lost, for want of a shoe the horse is lost, for want of a horse the rider is lost.

But sometimes a small thing is important because, in the grand scheme of things, there is significance in the insignificant because everything came from the hand of the same Creator. In this view, there are no “throw-aways.” No throw-away acts, no throw-away words and certainly no throw-away people.

In Christ, Amen ☩

❦   ❦   ❦   ❦   ❦   ❦

A prayer for when you are feeling small…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your magnificence and splendor. But today I want to bless You especially for the meaning with which You imbue my life. Because I am working empowered by You, nothing I do is trivial or meaningless. Moreover, I know that even though I do my work imperfectly, Your grace will fill for my in any shortcomings. Amen.”

Posted on

The Agony of Prolonged Expectations

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 got this title as a (perhaps inadvertent) gift from my sister in Indiana. Which is what the Porters are knee deep in right now: prolonged expectations – and not a little associated agony. As I posted on my Facebook timeline, Frannie and I have started a new policy in terms of caring for Janet where one of us is with her 24/7. During the day, I sit next to her, while Frannie handles the “night shift.”

So Frannie doesn’t have to sit up all night, we have an old mattress that we put on the floor next to Janet’s bed. That way she can sleep when needed. She also sets a timer so that even if she sleeps, she wakes up once an hour to check on her mom. This morning about 2:00 when Frannie woke up to check on her, Janet had somehow managed to pull her pillow out from under her head and the pillow was over her face! Janet is okay, but it scared both of us.

In other news, when the nurse came this week, he determined that Janet was not making enough urine to justify the catheter, so he removed it. In addition, he began to suspect a UTI (perhaps caused by the catheter) so he recommended an antibiotic. This event had a couple of interesting side impacts. To begin with, it became clear that Janet heard and remembered the conversation that I had with the nurse.

In addition, while she is continuing to have a lot of trouble stringing thoughts together and speaking, she certainly understands much of what she hears. For example, when the medicine that the nurse recommended did not arrive on schedule she got very agitated, repeatedly asking the time and asking for her medicine. When we eventually got the medicine, she quickly calmed down and slept. Since starting the antibiotics, she has also drunk more water.

As it turns out, this reaction to the medicine is another potential indication of a UTI. Often people with dementia lose the language skills to express physical discomfort verbally so it comes out as irritation, aggression, or agitation. Consequently, when the medications started soothing the UTI, Janet became more calm and relaxed.

Finally, we got our Christmas decorations up this week. While there is no danger of our home being seen from space, we like the little potted pine that I bought at the store.

It’s not very big, but it is placed and decorated with love. Janet can see it from her bed, and that is enough…

❦ ❦ ❦ ❦ ❦ ❦

In addition to this blog, I am writing other things. For instance, I am currently working on the editing of a metaphorical fantasy book that I have written, titled simply The Journey. While doing that kind of work I like to listen to music on YouTube. In the comments section on one of the videos, I spied a comment by a young kid (maybe 18) who was talking about being depressed, alone and lacking motivation. The poster was also complaining about catching a lot of “bad breaks” and couldn’t wait to “get on with life.” At that age I know that I wanted – and expected – things to happen fast. The paradox, of course, was that life is already moving very very fast, but at 18 it feels like it is creeping by.

Still, there seemed to be a common thread between my book and the journey he was on, so I decided to reply. The post that the kid left was already 30 days old, so I started by referencing that…

I hope that things are going better for you now than they were a month ago. But looking back from a perspective of having seen 67 summers come and go, there’s a couple things that I want to say.
First, there is no such thing as an accident, random chance, or luck. Those are all concepts thought up by people who figured that they need someone or something to blame for misfortune. The truth is that you don’t need a scapegoat to blame because misfortune is itself a myth. Everything has a reason.

Second, being alone can be a terrible thing. I know because after 35 years of marriage to a woman I would do anything for, at some point in the next month or so, I know that I will be alone again because the woman I love will die from a condition called Huntington’s Disease. However, through my wife’s and my journey together I have learned that I am never really alone – even when the bed next to me is empty. Eyes are too easily fooled.

Third, it’s good that you have big plans, but big plans need big reasons to exist – bigger reasons than you. You want to be fabulously successful in business? Great, but you need a reason bigger than your own comfort or self-gratification. You want to be a great artist? Wonderful, but your art needs to have a purpose beyond having an impressive retail value.

The bottom line is that your life is not about you and what you can get. The only life worth living is one that is about the world around you and what you can give.

My comment has gotten a couple positive responses, but I have no way of knowing whether the original poster has seen it – he or she hasn’t responded.

I wanted to mention this post here because those points are critical for caregivers. Messages espousing self-centeredness are becoming increasingly common – even among those who frequent the support forums. I would be remiss if I failed to point out that this trend counters millenia of Judeo-Christian teaching and practice. For example, consider the Ten Commandments. While there are certainly repercussions when I violate any of them, ask yourself: who is most directly impacted by the transgression of most of these rules, you or the one being lied to (or about), murdered, robbed or sexually betrayed?

The point is that in this mad rush towards a worldview that puts us (individually) in the center of the cosmos, we are abandoning the very things that made our world what it is today.

Another disturbing trend that has at least the potential of impacting caregivers is that I have begun to see exposé articles online decrying the number of unskilled, unprofessional people (that’s us, in case you were wondering) who are caring for ill and infirm family members. The articles then go on to wonder aloud how the government allows (!) this to continue. One article even likened it to practicing medicine without a license. Their “solution” is to force or coerce the aged and ill into moving into government controlled facilities – just the sort of places that government officials turned into death houses during the recent pandemic.

But above all, we must resist surrendering to the fear that characterizes so much of society. Remember that fear is the deadliest virus because it not only steals your future, but your present as well. Moreover, it has this deathly impact whether the thing feared appears or not. What is more, it matters not whether you are fearing a pandemic or autocratic politicians, because neither in the end have any control over what ultimately happens to you.

To attribute the power of life and death to germs and politicians is the basest form of idolatry. So I guess the real lesson is that when the resolution of a situation is delayed, don’t go looking for an alternative solution. The best answer is coming and it is always worth waiting for.

In Christ, Amen ☩

❦ ❦ ❦ ❦ ❦ ❦

A prayer for when you grow weary of waiting…

“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 ways in which You hold the world together, from the mightiest star system to the tiniest particle of dust. But today I want to bless You especially for the perfection of Your timing. I often feel like something is taking far too long, or conversely, that it flies by without time to even appreciate its passing. Nevertheless, thank You for always having what I need when I need it. Amen.”

Posted on

Loneliness Redux

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 brought a big answer to prayer.

As I have mentioned before, I lost my job in early September. This change allowed me to care for Janet full time, but our finances were beginning to show the strain. To make a long story short, I was approached for a position up in the Fort Worth area. This will complicate matters, but there are reasons that I believe that this is the right step for now. To begin with, when the recruiter asked me how much I would need in salary, I took my old salary, added $6k to it and gave him that number. To be frank, in the current business climate I didn’t think that figure was even possible but I figured if I saw that, it would be a sign that this was the right move for us.

This week, after interviewing with the company twice on the phone, they sent me an offer letter $5k higher than the “unrealistic” number I had proposed! When I told Janet about the job, she smiled at me as best she could and said, “I’m proud of you.”

In terms of Janet’s condition, she wakes up very infrequently now, and hasn’t wanted to eat anything in three days – maybe four by the time you read this. There is no sign that she is in any discomfort or pain. I have had a lot of time to think about all the things that she has done with her life and despite everything, my main feeling at this point is one of gratitude for being a part of it all.

One of the things that distresses me most at this point in my life is that the lack of recognition the everyday people seem to be getting for their deeds of heroism and accomplishments. The thing that makes this world great is not so much the actions of a few “greats,” whether they be monarchs, elected leaders, or faceless bureaucracies. Greatness comes from the thousands of unrecognized actions by the “common” people.

In 1942, when WWII was in its darkest moment, Aaron Copeland wrote a piece to acknowledge the millions of “common” men and women that had died and were about to die in the great cause of beating down fascism. Called Fanfare for the Common Man the piece’s intend was to laud the life contributions of people who do not find their way into newspaper headlines. In fact, as the inscription on the Tombs of the Unknown Soldiers reminds us, sometimes even their names are lost – and are only remembered by God.

In a way that is enough, but in another it is not. Today too many people take for granted the world in which they live and disrespect the past because it does not measure up to their own personal standards. The greats are belittled and the common are ignored so that in the end, all that is left is self-centered grumbling. Although there are no easy solutions to this problem, we do have a place from which we can start. When a loved one dies, take a moment to write a tribute to who they were and what they, with the grace of God, accomplished – warts and all. Then post that tribute online, send it as a letter to the editor of your local newspaper, include it in an obituary, even send it your political representatives. That will be a fitting tribute and will lift up future generations.

❦   ❦   ❦   ❦   ❦   ❦

I have written before about one kind of loneliness that caregivers can experience. That is where you are lonely for the companionship that you used to derive from the person you are caring for, but now no longer can. Then there is the loneliness that can result from the feeling that no one really knows you or understands you.

But this week I want to talk about another kind of loneliness. This impersonal loneliness comes from being surrounded by people who have no idea what you are going through, and so can’t even begin to relate to your feelings, needs, or priorities. It goes far beyond simply not understanding you, it is like they are living on a different planet or in a different world from you. This loneliness is made all the worse because the people creating it have no understanding of their own blindness. They go through life blithely assuming that their opinions are not just their opinions, but rather are normative for the whole world. Consequently, it is inconceivable to them that anyone should feel any different than they do – and if you do, well obviously you are the problem.

So where do these jerks come from? That’s the bad news. Too often those jerks are you before you became a caregiver. Looking back, it should be obvious that being a caregiver fundamentally changes your perspective. In my life, Reality has wrought that change using two main tools:

  1. Different experiences – When one is living a life of unchanging sameness, it’s easy to fall into the trap of thinking that the world around you right now is just the way life is. Much is said today about people living in an “echo chamber” that reinforces one set of ideas to the exclusion of all others. However, experiencing differing things breaks down the walls of even the strongest echo chamber. One thing, therefore, that all caregivers must fight against is the desire to run back to some (probably mythical) sense of “normal.” Instead we must embrace the changes that are flooding our lives and the wisdom that the changes are producing in us.
  2. Challenges to my belief system – Ever had the experience of thinking to yourself that “God will take care of me if X, Y, or Z happens,” only to have X, Y, and Z all happen simultaneously? These sorts of experiences offer two sorts of opportunities. First, they allow you so see that what you previously held as a theoretical likelihood, is a fact. In other words, before you believed in God’s care, now you have an actual experience.

    Second, they give you the opportunity to stretch and grow strong. For example, I once read about a teacher who brought into class a clutch of chicken eggs that were ready to hatch. As the students watched the first couple of chicks struggle to break out of their shells, they began to feel sorry for them, so when the other two eggs started to hatch the students carefully cracked the eggs open for them so they didn’t have to struggle so hard. However, it turned out that their help really wasn’t very helpful at all because the last two chicks were weak and it took them many weeks to catch up with their two older siblings.

Finally, in closing, I feel like I need to offer one disclaimer: All lessons learned in life are provisional – but not because as Reality changes, it does not. The Ultimate Reality, God, does not change.

It occurs to me that “immutability” might be, on a practical level, a useful gauge in discovering the identity of a person’s god. It is that thing which cannot (or must not) ever change. Too often, the ultimate god today is named “Self” and produces bad caregivers, because being a good caregiver demands that one systematically minimize “self” for the good of the “other” – an anathema to the cult of self.

But if the One that I am trying to learn about is truly unchanging, why is my understanding always provisional? Because, for one, the student (me), far from being an apt pupil, is, in fact, often rather slow-witted. But more importantly, the subject of the learning is truly infinite in depth and scope. For example, I learn that God is Love – and that is certainly true. But now the hard part: Define Love. That lesson will likely take me centuries to grasp.

The good news that I can always depend on, however, is that the Teacher is slow to anger and abounding in steadfast love. This news holds a lot of comfort for us. But what about the “jerks” I mentioned before that haven’t had the experiences that we have. We could give into the anger and scream at them, “You don’t understand my world!” However, a better path is to forgive as we are forgiven – remember we used to be part of them.

In Christ, Amen ☩

❦   ❦   ❦   ❦   ❦   ❦

A prayer for when you are feeling alone…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your creation. But today I want to bless You especially for being a stable reality even when I’m not sure where things are going. Thank you for being the solid rock upon which I can stand. Please give me the confidence to continue walking even when all I can see is a tiny pool of light by my feet. Amen.”

Posted on

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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.

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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…

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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.

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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.

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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…

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”

Posted on

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.

❦   ❦   ❦   ❦   ❦   ❦

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 ☩

❦   ❦   ❦   ❦   ❦   ❦

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.”