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Fear of the Future

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

My husband was in his fourth year of needing full time care in a nursing home due to Huntington’s Disease, when he suddenly began to repeatedly try to run away from the facility to go back home. We lived 20 miles away, and at this time, he could hardly take a step without falling. To make matters worse, he began to get aggressive with anyone who got in his way. One day I got a call at work from the Director of the nursing home, telling me they had had an “incident” with Don, and they had had to call the police to restrain him. He was OK, but he had been transported to a local hospital until they could decide what to do with him. He had shoved a little elderly lady when he was trying to make a run for the door to get outside. The little lady had no injuries, but was understandably traumatized. The police were involved in case charges were filed against him.

When I got to the hospital, Don was in a cheery mood. He had no memory of what had happened and was actually loving all the attention he was getting in the hospital. He was put in the ICU so he could be monitored all night. The next morning, two police officers came to take Don to a psychiatric hospital where they could do an evaluation of all his medications.

My heart broke when I saw them place Don in the back seat of their squad car and speed off. I needed to tell Don one more time that he would be OK, that I would check on him daily, and that I loved him. Little did I know that I would be unable to even see or visit him for seven days. Then I could only visit for 30 minutes, twice a week. It was a scary place to visit. I looked around at all the men in his visiting area, and some were huge burly men who seemed to pick a fight with anyone around. Thankfully, Don kept to himself.

I was so afraid for his safety. Fear became my constant companion. Would he be safe? Would his medicines be regulated so others would feel safe around him? When these sorts of things happen to other people, there can be added worries about family finances. They might lose their home. They may have to go down to one car. And then there is medical care.

After I became a caregiver, a whole new set of fears arose. I was not sure I could even give Don good healthcare. I worried about whether I was physically, emotionally, and spiritually prepared to literally give my life to caring for another person. I was uncertain about how long this journey would last or how bad it would get. When I am cooped up in the house 24/7 and can rarely have a meal out with friends, will I even have a social life?

I worried about our two children during these years. How would this all affect them? Both were smart and made good grades in school, and both had close friends. Would they be comfortable inviting friends over… or would I be comfortable with them inviting friends over? We never knew what Don’s mood of the day might be. And, if one of the kids stumbled, or dropped a dish, or forgot something, I prayed it wasn’t an early sign. Only parents of at-risk children can understand what this truly means. This brought me huge fears as I never wanted to see my own flesh and blood have to live their life with HD.

In the end, at the psychiatric hospital, all Don’s medicines were stopped and slowly a few were added back, with a few new ones. He was now very calm and compliant and after six or eight weeks, he was cleared to go back to the nursing home. However, the Director had decided he would not be allowed to move back. Every nursing home I talked with gave me the same answer. No. They were not able to care for HD patients. Eventually, after meeting with the Director at our original nursing home, she agreed to allow him to come back on a trial basis. It was a calm, sweet patient who returned, and there were no more behavior problems.

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There are very real fears and uncertainties that patients with degenerative neurological conditions and their caregivers might experience – even before they know anything is definitely wrong. These diseases have so many possible early signs and symptoms that anger episodes can seem as though the person is just having a really bad day and overreacting. Often, the explosive person forgets it as soon as they calm down and cannot understand why the caregiver can’t just let it go.

I remember being hurt by things said or done by my husband, and it was always up to me to forgive and forget. He saw no problem with his actions and it was just easier for me to be the one to try to make things right. It was happening frequently and I became understandably fearful that this was the new normal.

The best thing I could do at those times was to get alone and tell God about it. He knows the situation, but I can pray to ask for His help for my fears and heartaches because I am His child. He loves to hear from His children and longs for them to talk to Him every day. In Philippians 4:6-7, God tells us not to worry about anything, but to come to Him and let Him know our needs. He gives us a great peace in our hearts and minds. He understands and comforts us! And He is waiting to hear from you, too.

Certainly when I am unsure of what my future might hold, fear often grows as my faith is challenged. Perhaps we see our loved one with health problems but have no idea yet what might be the cause. Every visit to a doctor makes you wonder if it might be the appointment when you get a diagnosis.

Other areas that brought me fear were parts of caregiving that only grew more difficult. My husband had the diagnosis by now and we knew HD could stretch on for years. I wondered which symptom would show up next. How long would he be able to work? When would he decide to make small repairs needed around the house? Every time he drove the car, I was terrified he would have a wreck. His braking response was slow, and his speed control was very erratic with an uneven pressure on the accelerator. But I knew that, for him, giving up driving would not be an easy transition.

Fear is a very normal human response and we learn to express it at an early age. A baby cries in fear when someone else is caring for them and they want their mommy. Kindergarten students are often scared and fearful on those first few days in a classroom setting. As a school age child, I never would go to sleep with one leg out of the covers and my foot dangling off the bed. I had a fear that a tiger or bear would surely take a bite out of my toes.

As a caregiver or friend to those with health problems or who are grieving, I should be ever mindful of the trap that fear places us in. It can stop us in our tracks and the burden of our daily life becomes almost unbearable. I can truly grow in this experience when I allow our Heavenly Father to lead and guide me.

I had to go to the Lord all through each day, to ask for peace in my heart and mind. All through the day I would think of the verse in Psalms 34:4: “I sought the Lord, and he heard me, and delivered me from all my fears.” All through the day his presence helped me put away those fearful thoughts.

In Christ, Amen ☩

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A prayer for when you are feeling fear of the future…

“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 how You love and protect Your children. But today I want to bless you especially for how you are with me every single moment of every day. You know when I am feeling depressed, overwhelmed with duties in life that seem to never end, scared of what the future holds and full of fear. Help me to turn my thoughts toward You when I am weak. Teach me to remember to depend not upon my own abilities, but upon Your strength. Amen.”

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Temper, temper…

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…

My dad used to say that it was a miracle that he didn’t end up either in prison or on death row. He was born in a sod hut on the plains of Nebraska in 1916 or 1917. Soon after his birth, the family moved to Grandin, Missouri. But things didn’t go well for him there. His father ran out on the family (which consisted of my dad, his older sister Hattie, and their mother) when he was just a toddler. When Dad was about five, his mother died of tuberculosis, and he was given to a family to raise but was soon handed over to an old woman named Becky Moore. She was in her later 70s, and was extremely abusive, physically.

He lived with her until he was about 16. He survived by learning to be quick on his feet to dodge chunks of cordwood that she would chuck at him – her favorite way of expressing her “displeasure” with something Dad had done. He also learned the value of “lighting out” ‒ getting out of the house for a few days to live in a lean-to he’d built for himself on an island in the middle of the nearby Little Black River.

Shortly after Dad turned 16, a recruiter for the Army came through town, offering what Army recruiters have offered since time immemorial: good pay, adventure, and a chance to see the world. That all sounded good, so Dad went in to talk to him but discovered that at age 16 he was too young. However, a week or so later, something made Becky Moore even more angry than she usually was, and which put Dad in fear for his life, and he knew he had to light out for good.

He tracked the recruiter down at his office in Poplar Bluff, Missouri and pleaded his case, hoping that the Army could make an exception. Looking back, Dad could see that the recruiter recognized him from their previous meeting in Grandin, because when Dad finished his story, all the recruiter said was:

“So how old are you today?”

To which Dad answered, “Eighteen, sir.”

“Well, in that case, son, it looks like you’re in the Army. Hold up your right hand and repeat after me…”

Though the Army obviously produced challenges and plenty of heat of its own – like two wars – it was very good for my dad. He used to say that in a very real sense, the Army was his mother and father because it taught him to say “sir” and “ma’am,” and how to keep his nose clean. So, he grew up to be a kind and gentle man, a dauntless friend and a fearsome enemy. He never swore because he said that using profanity was a sign of a lack of education.

William Lawrence Porter ‒ Dad

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I have written about my dad before, but I bring him up again because the comparison between him and his sister Hattie is particularly telling – and significant when talking about caregiving, grieving, and recovery.

You see, after their mother died, Hattie had some hard times too. Being five or six years older than my dad, she was taken in by a well-to-do family there in town and grew up never needing anything. But the outcome was very different. She grew up mean and argumentative, with a demanding nature where everything had to be her way. As a child, I remember Aunt Hattie as being someone who didn’t know how to play – and her language would occasionally leave drunken sailors blushing with envy. Even when she wasn’t angry, she sounded like she was snapping at you, biting off her words. In the end, her temper pretty much defined her. One thing Dad used to say her that was always assured to irritate her was, “Now sister: Temper, temper…”

However, the word “temper” has more than one meaning. In addition to being a noun that names something (typically negative) that someone has, it can also be a verb. Tempering is something that you can do to something, typically a ferrous metal such as iron or steel. (For cooks: Yes, I know you can temper chocolate too, but that’s an analogy for another day.)

The process for the tempering of steel starts by heating it to several hundred degrees and then quenching it quickly in water or oil. Though many people don’t know it, steel has a crystalline structure and the heating causes the atoms in the metal to become more mobile and redistribute themselves in a chaotic manner. The quenching then cools the metal quickly, essentially locking the metal’s new crystalline structure in place. The result is a metal that is very hard and very strong, but which exhibits a significant downside. Metal in this state is also very brittle and when deformed too much will sometimes shatter. Similarly, steel in this condition can be sharpened to a very fine point, but it won’t hold the edge well, as its brittleness means that it will wear rapidly.

Tempering deals with this limitation by reheating the metal (or more typically some part of the metal) and letting it slowly cool. This part of the process allows the crystalline structure to relax a bit, which weakens it slightly but also makes it more ductile and far less susceptible to catastrophic breakdown.

In addition to iron and all manner of steel, people can also be tempered – and as with the metal it sometimes requires a lot of “heat”.

In the case of my father and his sister, they both went through the “heat” of the initial trials and at first became very hard. But after that initial “heat treatment,” the reactions of the two were very different. My dad saw subsequent trials as things to be overcome, and as opportunities to learn. So over time, he became my dad, hard where he needed to be, but also warm and loving.

Aunt Hattie, however, just saw additional trials as things to be avoided at all costs. Her motto was to always take the easiest road possible. Consequently, she remained hard, and her spirit was brittle and susceptible to shattering. Many of the defining events in her life were places where she had to stop and “pick up the pieces.”

As we go through life as caregivers, care receivers, or those grieving a loss, the same two options are available to us. We can let the heat come when and where it may and welcome it as a force to form us into who we were meant to be, or we can reject it and the change it could have wrought and remain hard, and spiritually and emotionally brittle.

Taking the step to embrace the heat can take courage – in fact, a lot of courage. But where does that sort of courage come from?

The truth is, having the courage to believe in the future is only a risk if the future is random and uncertain. Thankfully, such is not the case. Thankfully, there is Someone with a hand on the wheel who sees not only your future, but the future of everyone who ever was, is now, or ever will be.

What’s more, the owner of that hand cares about you deeply, and in ways that you can’t begin to imagine. So the real question is, how do you begin to trust in that Guide? A very long time ago, a young man got so excited about the possibilities that he wrote a song about it:

“O, taste and see that the LORD is good; How blessed is the man who takes refuge in Him!”

Ps 34:8

In a sense, this statement is the exact opposite of “blind faith” that many people think is required. Rather, this speaks to a faith that has proven itself over and over again across untold generations. A faith that is not only unafraid of reality checks, but actively invites them.

Our Creator intends far more for us than mere survival. He earnestly desires for us to thrive, where we are as sharp tools in the hands of a skilled craftsman – and for that we sometimes need to go through the flames to be perfected, refined, and tempered.

One last point I want to make is that last week, I left a cryptic note at the end of the last post, that we would have to see how things went “next week.” Well, those of you who follow me on Facebook already know how things went. I have changed my profile to reflect that I am “In a Relationship” with a beautiful Christian lady by the name of Jean Barnes.

My Beautiful Jean…

She lost her husband to HD 15 years ago, and her daughter to the same disease in February. She was the dear friend I mentioned in a post, when I drove into Dallas to attend her daughter’s visitation. After a few subsequent visits and many long text conversations and phone calls, it became obvious to both of us that we needed each other and God was bringing us together.

So, yes, I have tasted, and indeed He is very good…

In Christ, Amen ☩

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A prayer for when you are going through the fire…

“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 commitment to me as shown by Your willingness to sacrifice so much for me. But today I want to bless You especially for the miraculous ways in which You have brought together the disparate threads of my life and satisfied my innermost needs by answering prayers I didn’t even know enough to pray. Amen.”

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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.”