Okay, Now What?

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This is the section where I would normally give an update on my Janet’s health condition, but that is clearly no longer of any significance, given her change of residence to heaven.

So now come the adaptations and the wondering about how to be a widower. And the first step in that process is figuring out how to tell someone what happened without breaking down in tears. I got a lot of opportunity to practice this week because I started a new job on Wednesday and, because the job is in a different part of the state, I was looking for a house or apartment for Frannie and I to rent. The conversation would go something like this:

“So, Mr. Porter, how many adults will be living here?”

“Just two, my daughter and I.”

“Oh?”

Nothing judgmental there, all she said was, “Oh?” So why do I feel like I’m being interrogated?

“Yes, my wife just passed away Sunday from a degenerative neurological condition called Huntington’s Disease. It has been described as having Alzheimer’s, Parkinson’s and ALS simultaneously…”

“Oh, I’m so sorry for your loss.”

At this point, I would typically just say “Thank you,” and try to move on with the conversation. Occasionally, they would say something about how “brave” I was. I know that such comments are intended as compliments or reassurance. But, in this context at least, being “brave” simply means continuing to move forward and refusing to die too. Most people have no idea how many ways a person can be dead and still continue to breathe.

Semper Prorsum.

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I know what you’re thinking: “Didn’t he say last week that he wasn’t going to be posting for a while?” And you are right. The only problem was that when it got right down to it, I couldn’t keep myself from writing. The title is really what I have been going through this week: “Now what?” Of course that simple question could be answered in a number of ways:

  • Now what, for our family?
  • Now what, for Frannie and me personally?
  • Now what, for my writing and this blog?
  • Now what, for my job?

But as I contemplated it, I had a thought that this question, as simple and as common as it is, may actually be part of the problem – or at least, part of my problem.

When Janet was still ill, I used to ask myself this question quite often because I was trying to understand where things were going. What was the next symptom? What was the next challenge to be faced and overcome? I wanted to know what the future held. And now I am feeling the same desire – though for a slightly different reason. So what, in the final analysis, has Janet’s transition to the next life fundamentally changed? As it turns out, not a whole lot.

You see, we all like to tell ourselves that once our loved one has gone on or the present predicament has passed, life will calm down and be more predictable. Sounds good in theory, but the truth is that life remains stubbornly UNpredictable. The exact nature of the unpredictability may change, but at the end of the day, I’m still left trying to figure out what is coming down the road so I know what to do about it. I still think that I can prevent more “bad stuff” from happening – all the while ignoring the fact that there isn’t anything I can do. Not really.

Oh, I can take action based on projections and predictions of likely future events, but those are really just guesses – and sometimes not even very well-educated ones. So what should I do? Well, stopping isn’t really an option. Likewise, hiding and licking my wounds sounds oh so comforting, but is likewise out. All that is left, really, is for me to do the same as I have always done: take it one day at a time, doing what God has put before me for that day. Or at least, that’s the same as I have always done on my better days…

In any case, this week I started my new job and I think I am going to enjoy it, as there is a lot of work to do and solid support in the company to get it done. Can’t ask for much more than that! I also found a house for us to move to in Mineral Wells, Texas. It will be a long drive to work, but as compensation, it will be a long drive through some of the prettiest country on earth: the Texas Hill Country!

To give you a sense of my new work, this is a picture of the morning rush hour in beautiful downtown Cisco, Texas.

This is going to be great!

In Christ, Amen ☩

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A prayer for when you feel directionless…

“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 there to guide and direct the steps of Your people, and through them, the world. But today I want to bless You especially for the grace that keeps my feet moving and guides their path. You know that sometimes I feel like stopping and hiding. Thank You for the faith to keep walking. Amen.”

In Memoriam, J.A.P.

בָּרוּךְ אַתָּה ה’ אֱ-לֹהֵינוּ מֶלֶךְ הָעוֹלָם,

Barukh ata Adonai Eloheinu, melekh ha’olam
Blessed are You Lord God, King of the Universe

The above phrase begins most important Jewish prayers because regardless of whatever else you are wanting to say, it is important to start by putting things in their proper context – and there are several things that I want to say, and that is the proper context for saying them.

First, on Jan 10th 2021 at 2:30am my beloved wife Janet Anne Porter passed from this world into eternity due to the actions of Huntington’s Disease. Note that I didn’t say, “…the victim of Huntington’s Disease…” because Janet was never a “victim” of anything. She may have lost the physical battle, but was spiritually victorious.

Second, though I am crying (copiously), now is not the time for just sadness. I also rejoice because while her body is cold and inert, I know that the part of her that was really “her” survived HD. And I don’t mean that in the soft sort of way that is common today, as in “…she will live on in our hearts forever…” While that is most certainly true, it is not what I mean.

Janet was far more than an amalgamation of biochemical interactions that other amalgamations of biochemical interactions (i.e. us) interpreted to be a “person.” For Janet, as with all people, there was also that part of her that wasn’t confined to the limits of her physical body, and because it is not dependent upon that body for its existence, it continues to live even as the body that housed it degenerates and dies.

Call that part of her (or you!) the spirit or soul – the label isn’t what matters. What matters is that it lives on and, as you read this, Janet is united with the One who created her and the spirits of all those friends and family members that have gone before her: people like her mother and father, her older brother John who also had HD, and her beloved godmother Aunt Ann whom she missed so much. And then there is the broader gathering of the faithful that The Apostles’ Creed simply refers to as “the communion of saints.”
No doubt she will be anxiously awaiting her other brother, Danny, who still has HD.

What all that reuniting looks like I have no idea, but I know and celebrate this: Janet’s mind is again clear, her hands and feet are steady, and she can now run and dance again to the tune that she, and not Dr Huntington, calls.

Third, I want to assure you, my readers, that just as Janet’s life did not end, mine did not either. As you might imagine, I may be “off the air” for a bit with family responsibilities and what not, but I am not going away. The work that my sister (with inspiration from God) set before me as a challenge, is far from done. We still have a very long way to travel together, and there are unfortunately new folks joining our solemn caravan every day.

If you wish to memorialize Janet and her contribution to the world, please make a donation in her name to the support and medical research organization for the disease that affects you, and which is active in your country.

…and please remember in your prayers those who are still fighting the good fight for the care and dignity of our families.

In Christ, Amen ☩

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A prayer for when you are confronting the end…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the reality of eternity. But today I want to bless You especially for providing for my loved one who now lives on in Your Divine Presence. Even though I cry now, even as You did when Your friend Lazarus died, I know that the grave does not have the final word and the doorway that we call death is not a corrupting, defeated end, but a glorious new beginning. Amen.”

I’ll see your “Tempus fugit”
…and raise you a “Carpe diem”

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…

As I write this it is 8 pm Friday night, January 8th. For the past three or four days Janet has been fighting a battle with almost nonstop diarrhea. She hasn’t eaten anything in several days, but still the flow continues. In addition, this morning she was experiencing a raging thirst but had lost the ability to suck on a straw.

After a few minutes’ search I found the Provale cup that I bought a year ago but which, at the time, Janet refused to use. The cup is designed such that each time it is tipped, it only dispenses a precisely metered amount of fluid – either 5- or 10-cc. This helped with her thirst, but was a short-term solution at best.

A bit later, the hospice nurse called on the phone and after I described what was happening, she said that we may need to get Janet into their inpatient facility. Twenty minutes later, the nurse was in our living room and, after examining Janet, she called the doctor and got orders to transport her to their facility. The ambulance arrived a bit after 3 pm and Janet was on her way in about 20 minutes.

Between the time that the orders went in and the ambulance arrived, we got a phone call from Janet’s brother in Massachusetts. He hasn’t spoken to her in a couple years, and in her current extremely confused mental state, I didn’t know whether she would understand what he said to her or not – or whether she would even recognize his voice. But I held the phone up to her ear and told Dan to go ahead and speak.

There were a few comments like “You need to rest and get well.” Then he got to the main point of the call and said, “I love you, Janet.” And Janet replied, very softly, “Love you.” I think he may have finally understood that he might not get another chance to speak to his only sister – on earth at least.

About a quarter to 5 pm, I got a call from the intake nurse at Houston Hospice and she told me that Janet had arrived safely and was at last resting comfortably. They examined her and found additional blockage, which they cleared out, and then they put a catheter back in place and started an IV with a morphine drip to make her more comfortable.

Frannie and I were able to visit her Saturday. Here is her room. Frannie is taking a nap next to Janet. Janet is covered by her two favorite fleece blankets.

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Many questions that newly diagnosed patients have on many support forums can be boiled down to one common concern. While the specifics obviously vary from one condition to the next, the basic question is the same: “How much time do I have?”

While that is a very understandable concern for everyone involved, it can be a bit problematic. In the first place, unless your doctor is a psychic or a prophet, there is no way of knowing how much time you have left. Consequently, you are left with statistical answers and educated guesses. As an example of how troublesome statistics can be, consider the situation with Huntington’s Disease.

An often-cited statistic is that average survival is 20 years after diagnosis. However, that number was derived in the past when it was mainly the physical symptoms that were driving people to the doctor to get a diagnosis. But that situation has changed. Today, more people are going to the doctor with the onset of the emotional and cognitive symptoms, which some studies say may precede the physical symptoms by as much as 20 or 30 years. Then, add on top of all of that the fact that people often have nervous tics or mannerisms that have nothing to do with HD or any other pathology, and you can see that attempting to apply an average to one specific life can become very dicey indeed.

So what are we to do? My recommendation is to stop trying to see into the future. The really important statistic is this one: Life has a 100% fatality rate. Moreover, whatever disease you have may not kill you. People with all kinds of serious neurological diseases die from injuries in car wrecks, heart attacks, cancer, or you name it. The only guarantee my Janet has is that she won’t die of old age. Everything else is still on the table.

The only reasonable course of action is to recognize the concepts of Tempus Fugit and Carpe Diem, specified in the post title:

Tempus Fugit – Time flies. As Chaucer observed in 1395 in his work The Canterbury Tales, “Time and tide wait for no man.” The point here is that there are no timeouts in life. You may at times feel like you are on the sidelines watching the game, or marking time and going nowhere (I know I often have), but that feeling is an illusion. The truth is that even when there is no apparent progress, life is still moving on, and the changes that need to happen are occurring at the pace in which they need to occur. Sadly, many times we only recognize the changes and developments in hindsight.

This idea feeds seamlessly into the second:

Carpe Diem – Seize the day. If every day passes by heedless of whether we are involved or not, the only rational response is to fully engage with each day and wring out of it every drop of living that we can derive. In order to do that, we need to recognize that this living can take two forms: receiving all that each day offers, and giving all that we have to offer it.

But to seize each day in this manner, our eyes need to be open and our senses tuned to that which is outside ourselves. In the military, this tuning of the senses is called “situational awareness,” and all it means is to be conscious of what is going on around us. That is often much easier said than done. At times like these when we are surrounded by so much ugliness and anger, it can be comforting – and oh so much easier – to simply tune out the world and curl up in a nice quiet bunker somewhere until things get better.

However, if you do, just be aware that nothing will ever get better. Life only improves when people like you and I are involved in the world around us and doing what we were put here to do, even if our own individual acts don’t seem very big or significant.

The other day while standing in line at Walmart, I noticed that a woman in one of their motorized carts had two large cases of water in her basket and no way to get them onto the conveyor belt to be rung up. So I walked up and offered to help her get them onto the counter. Then later, I noticed the same lady’s car was parked directly across the parking lane from my car, so I went over and again lifted her water into the trunk of her vehicle. Now will world peace be brought about because I helped her? No. Will I get extra brownie points in heaven for doing a good deed? I sincerely doubt it.

So what was the importance in what I did? Simply this: I saw her. I allowed myself to become aware of a fellow human being and their need without imposing on them what I thought they needed. And if more people did that, perhaps we would get a bit more peace in the world.

Remember that each fleeting day is a gift from our Creator and in response to His gift, seize it in both hands and with your eyes wide open. Right now is all we really have.

In Christ, Amen ☩

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A prayer for when you are worried about tomorrow…

“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 Lord of all that is, all that ever was, all that ever will be, and all that ever could be. But today I want to bless You especially for being the Lord of the small subset of the cosmos in which I live. Thank You for caring about me, individually. Thank You for giving me senses with which I can perceive those around me, and hands with which I can help to meet their needs, no matter how small. Thank You for this day of my life, please help me to live it to the fullest. Amen.”

First Time – Last Time

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…

Well, Janet made it through New Year’s, though she probably has no idea that it occurred. Per tradition, we are keeping her little Christmas tree lit until Epiphany (Jan 6th) which commemorates the arrival of the Magi in Bethlehem.

In a little over a week I will start my new job, so, to provide better care, I have changed the hospice organization we were with to a larger one, which has more resources and so will be able to provide better services during the transition time. Of course, a lot of the details are dependent upon the transition that Janet ends up making. She could, after all, transition directly to Heaven before the job even starts.

Lately, I have found my prayers for Janet have changed. More and more I find myself praying for her peace as she moves from this world to the next. I am praying for no upset, no anger, no drama, and no pain. I read a story this week written by Douglas Gresham, the older son of Joy Davidman and the stepson of C.S. Lewis. At one point, when he was nine, he prayed for her cancer to go away. Shortly thereafter, it indeed did go into remission. But then five years later, it came back and he related how he again prayed:

“I was fourteen by this stage—not a little boy anymore. He (God) said: If you need me to do this, I can fix it again. And I thought to myself: Asking for the same miracle twice would probably be a greedy thing to do, and my mother had gone through enough agony the first time. So I said: Thy will be done. I walked out, and she died two days later.”

Well, I’m not 14, but I know the feeling. There comes a time when you suddenly realize that your desire for their survival is not about them at all, but is in actuality a rather low form of selfishness. It can be hard to accept that the best thing for your loved one is to go on to what is next for them because if you profoundly love someone you want to be with them. Very natural, but nevertheless a major gut check.

Unfortunately, another component leading to the trauma in the survivor can be the expectations of others. I have seen people (and I’m sure you have too) that use the ways and degrees that you mourn to measure how much you really cared for the person. In other words, if your behavior doesn’t agree with their image of what mourning is supposed to look like, you must not have really cared. Of course this reaction isn’t new. We even see it documented in scripture when David doesn’t mourn “properly” for his son by Bathsheba.

I guess this discussion is just a long-form way of saying that when Janet’s ultimate transition takes place, I don’t know what my mourning will look like. I may collapse in tears on the floor – or I may not. But regardless, know that my love for Janet is real and that, as always, I desire that she be happy and healthy. And also know that, like all caregivers of those with neuro-degenerative conditions, the mourning started a long time ago.

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So January has finally come as it usually does, festooned with streamers, confetti, and champagne bottles – not to mention the requisite sorrows about the past and hopes for the future. Moreover, this sort of thing appears to be inherent in our makeup as humans, for end of year observances have been going on for thousands of years with surprising consistency. For example, despite how it may appear, the concept of a New Year’s Resolution is not a marketing scheme thought up by the operators of gyms and spas. In fact, the idea goes back to at least 2000 BC with the ancient Babylonians. Some may find it comforting that, according to archaeologists, the ancients were no better at keeping their resolutions than we are.

Another aspect of the New Year is visible in the month’s name: January. Though there is a bit of controversy, it was probably named for the Roman god Janus who had two faces: One facing forwards, and one backwards. A rarity in the Roman pantheon, Janus was not inherited in any form from the Greeks, but was instead a purely Roman invention. Janus started as the god of doorways, but this duty quickly expanded to covering any sort of transition. A sense of that meaning is even retained today as we use the New Year as an excuse to indulge in endless retrospectives of the past and prognostication over what the future may hold.

As a caregiver, however, I find it difficult to get too excited because in so many ways, New Year’s is just another day. There is food to prepare and diapers to change – and of course, naps to be taken when (if) the opportunity arises.

The other point is to recognize the date’s apparent arbitrariness. Why does January 1st have such an important place in the culture? The historical answer to that question lies with a couple of Popes and a Roman emperor or two. But after the history lesson, the answer to our question becomes real clear: There is no reason for the first day of January to be any more important than any other day. It is a time landmark because we say it is.

Of course, the converse is also true. There is no reason for the first day of January to be any less important than any other day. Hence it is not a day to be wasted or passed over mindlessly. To do so runs the risk of missing, as the title says, “First Times” and “Last times” because they can both arise without warning. For instance, the first time she shows a particular symptom, or the last time we kiss. Consequently, I also spend time praying for vigilance to not miss any of these precious moments. Like every day, it is to be lived to the fullest in service to those around us.

Finally, we need to recognize that nothing is, in the end, truly arbitrary. Just because we can’t divine a reason, that doesn’t mean a reason doesn’t exist. The point is that God has a habit of taking things that have no intrinsic meaning and giving them meaning – this is how stones become monuments, tents become tabernacles and a simple meal eaten in haste becomes a sign to the world of God’s faithfulness. So, remember the fundamental question behind that meal, “Why is this night different from all other nights?” and remember also the answer: “Because on this night God acts.”

In Christ, Amen ☩

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A prayer for when you are on the cusp of change…

“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 the same yesterday, today, and forever. But today I want to bless You especially for being there for me when I am in the midst of change that I don’t understand and traveling on a road that I can see only dimly. Thank you for guiding and directing my steps. Please show me how to be a light for the steps of others. Amen.”

The Gift of the Magi

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…

Okay, it happened this week. The other night Janet looked up and asked me what my name was. She knew I was her husband, but she couldn’t remember my name. Then the next morning, she could remember my name, but not Frannie’s.

However, the main topic this week is gifts. This week (Christmas Day, in fact) we were blessed with another visit from Pastor Wilson, whom I’ve mentioned before in a previous post. She was in the neighborhood having Christmas Dinner with a member of her congregation and she stopped by afterwards to look in on us. During this visit, Janet was able to confide in her that she was afraid to die because she worried about Frannie and me. Pastor Wilson said that Janet has the heart of a mother and the heart of a wife. We were able to reassure her that we will be fine, and that we have friends who will help take care of us.

Yesterday (Saturday), our son, his wife and their three daughters came to visit. Shortly after the first of the year, they will be moving to Germany for an 18- to 36-month duty assignment. So this will be the last chance for them to see her alive and say goodbye. Everyone took advantage of the opportunity. When they arrived, our son immediately went to his mom and said, “Hello.” She, in turn, responded with, “Where are the girls?” The granddaughters all took turns talking to their grandmother. Mikaela, the one on the left below, wanted to paint grandma’s nails with a glittery green polish, but the chorea made that task impossible.

We had a chance to sit and talk for three hours, and then they needed to be heading out – besides Janet was getting very tired. As they were leaving, each of the girls gave their grandma a final hug and a kiss, and our son took several seconds whispering something in Janet’s ear. I couldn’t hear what he was saying, but she nodded several times.

Finally, she looked up at me and said it was good to see the girls again, and I nodded in agreement. She next asked if I enjoyed seeing them, and I said that I enjoyed it very much. Then she looked me straight in the eye and said, “Merry Christmas.”

And here I thought I was giving her a Christmas present…

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The name of this post is drawn from the title of a famous short story by O. Henry, pseudonym for the American author William Porter. I enjoyed reading his works for two reasons. The first was his name. He was the first person of note that I became aware of with the same last name as mine. Moreover, my father’s name was William. The second was because his stories were so good and often had a humorous twist. For example, he is also famous for his story The Ransom of Red Chief in which some hapless swindlers decide to make a quick buck by kidnapping the son of a wealthy man. The only problem is the parents don’t want the young hellion returned. In the end, the kidnappers have to pay the parents to accept the kid back.

Perhaps because he was known for humor such as this, people often misinterpret the ending of The Gift of the Magi as humorous as well. But I have always felt that it goes much deeper. To recap, the story is set the early 1900s and the day before Christmas a young wife realizes that she only has $1.87 to spend on a present for her husband, so in desperation she goes to a local shop and sells her beautiful long brown hair for $20. Then with the proceeds in hand, she hurries off to buy a gift for her beloved. What she gets is a beautiful chain for the heirloom watch that her husband had inherited from his father.

When her husband returns home that evening, he initially expresses dismay over her hair being cut so short. Because she is worried that he is angry (he had always loved her long hair), she presents him with the fine chain for his watch. In response, he embraces her and reassures her that he doesn’t love her any less for having short hair. Then he pulls a package out of his pocket and throws it on the table. When she opens it she discovers a set of beautiful ornate combs that he had bought her to hold her long hair in place. Then he confesses that to get them he had to sell his prized watch.

Many readers, however, stop right there and with an ironic laugh move on, failing to really read the last paragraph of the story:

“The magi, as you know, were wise men—wonderfully wise men—who brought gifts to the newborn Christ-child. They were the first to give Christmas gifts. Being wise, their gifts were doubtless wise ones. And here I have told you the story of two children who were not wise. Each sold the most valuable thing he owned in order to buy a gift for the other. But let me speak a last word to the wise of these days: Of all who give gifts, these two were the most wise. Of all who give and receive gifts, such as they are the most wise. Everywhere they are the wise ones. They are the magi.”

That is the real point of the story, and for that matter of our lives – and especially so if we are caregivers. We often sacrifice, without thinking, the most precious things we have to care for our loved ones. And for that we are, unfortunately, sometimes called fools. It can be tempting to attribute that judgment to the sad times in which we live. However, we are not the first to be called fools for loving and caring for others, and we certainly won’t be the last.

Almost 2000 years before O. Henry wrote his story, someone who was very wise indeed wrote this in a letter to a group of his friends: “…the foolishness of God is wiser than men.” I have heard many who interpret this statement to be about how much bigger and more majestic God is than humankind. And while that is certainly true, I don’t believe that is what this statement is about. Rather it’s a statement about what truly constitutes wisdom.

We see the message every day: “Don’t be a fool! Look out for yourself, nobody else will.” However, that message is the real foolishness. Everyone dies, the wise and the fool alike. The difference is that when magi die, they leave behind them a world that is a bit better than the world they entered. So if the world seems to be “going to heck in a hand-basket,” perhaps the problem isn’t an excess of fools, but a dearth of magi.

In Christ, Amen ☩

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A prayer for when you are feeling foolish…

“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 wise counsel and direction. But today I want to bless You especially for opening my eyes to the truth that the giving and sacrifice You modeled for us two millennia ago is still the wisest course of action. Please, touch me and teach me so that I might be able to present truly wise gifts. Amen.”

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.

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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 ☩

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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.”

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…

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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 ☩

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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.”

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.

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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 ☩

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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.”

Thoughts on Thanksgiving

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

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

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

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

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

Frannie in her Huntington’s T-shirt

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling less than thankful…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for all the manifest gifts that You bestow upon the world that You created. But today I want to bless You especially for the gifts that we remember on Thanksgiving. Please give me a perspective that allows me to see the blessing in all that You bring into my life. Then show me how to share those blessings and truths so as to enlighten the hearts and souls of my fellow travelers. Amen.”

Caregiving Beyond “Fear and Loathing”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling guilty and afraid…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the divine wisdom and care that gives the cosmos its form. But today I want to bless You especially for the reassurance and strength that You provide. Thank You for holding me up when I feel weak. Thank You for the gift of life that You have bestowed upon me, and that You allow me to share with { Name of your loved one }. Show me every day how to do the job better. Amen.”