Caregiving and the “I-Word”

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 week we’ll continue the process of revisiting some of my posts written over the past year and a half, and giving them a bit of a face-lift.

As in the past, the procedure has been for Jean to go through the past posts and identify one that she felt was an “evergreen” topic. This one is the sequel to the one that we presented last week. It originally ran February 16th of 2020.

One big change worth noting is that, in addition to assisting me in identifying posts, my soon-to-be wife Jean has also taken over the editing duties from my sister in Indiana. More on the “soon-to-be wife” comment later.

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In the past, we have considered loneliness from the standpoint of things a caregiver can typically lose due to the progression of a neurological condition. The things we discussed ranged from the patient’s inability to simply express love by saying “I love you,” to their inability to even behave like a rational human being.

With that in mind, there is one remaining piece of business that needs to be handled. You see, in the past as I considered my situation, I saw that I was surrounded by people who loved me in a multitude of ways. Moreover, many were even willing to demonstrate it in the form of hugs, gentle touches and reassuring words. I received this kind of support from family, friends from church – even people I knew from online forums and local support group meetings. While loneliness does often result from not being told that you are loved, that didn’t seem to be at the root of my loneliness. So I continued looking…

My next clue came when I saw a post online from a woman who described in heartbreaking detail the feeling of being invisible – of people not really seeing her. Professional caregivers would come into her home to take care of her husband, and as they went about their duties she would feel pushed to one side – not really a part of what was going on.

Now that feeling struck home.

The HD clinic that we went to was always great, but there were other circumstances that were not so positive. I can remember, for instance, going to an Urgent Care clinic and being treated like little more than the bus driver that got her there. If you think about it, it actually made perfect sense. After all, Janet was the patient, not me. Still, I had gotten used to being part of her care team, and then suddenly in those situations, I was not.

So with that one insight, I began exploring the idea a bit, and the more I thought about it the more real it felt. Moreover, connecting the dots between invisibility and loneliness turned out to be really easy. If you are invisible, you are unseen. If you are not seen, there is no way that you can be known, and it is the recognition of this isolation that produces a profound sense of being alone.

The progression from invisible to alone

But this progression also points to the solution. If the sense of aloneness is brought on by not being known, the obvious solution is to become known. Consequently, being known results in you being recognized, and this recognition enables you to become fully present – which in this sense is clearly the opposite of invisible.

The progression back to present

Looks easy on paper, right? How do I become known, and in so doing, put this insight into action? Well, there is a word to describe this process of getting to know someone deeply by profoundly understanding them. Unfortunately, the best word to describe this process is “intimacy.”

I say “unfortunately” because that word today carries with it quite a bit of cultural baggage. Our society has turned intimacy into a virtual synonym for sex. Ironically, this redefinition is occurring at the same time that common terms like “friends with benefits” are turning sex into a purely physical act that is totally devoid of anything even remotely resembling actual intimacy! If you have never heard the term, feel free to look it up online, but be forewarned: it may turn your stomach.

So what could I do? I could simply accept the Orwellian redefinition of yet another word, but as many people have noted, to change the culture you don’t need a mighty army, just the ability to print dictionaries. If you can redefine the words people use, you can control their thoughts, and if you can control their thoughts, you can control them.

“But,” you might ask, “what real difference does it make?”

Simply this: If intimacy is redefined as simply a contextless, amoral physical act, we have essentially undercut the emotional and moral underpinnings that hold our society together by making emotional isolation and hopelessness the norm.

Or consider another potential impact. I have complained in the past about the lopsided distribution of men and women on the forums. The question is, where are the other men, and where are they going to get the support they need? Well according to one social worker I spoke with about the matter, they aren’t going anywhere. They are just going without the love, care and support they need. Maybe the effect that I am talking about here is playing a role. Regardless, I think that it is high time we reclaim the true meaning of intimacy as profound emotional and spiritual connectedness, and reject the hyper-sexualized context into which it has fallen.

If you look up intimacy in a dictionary, you will see that the first synonym is often closeness. For me at least, this first-order approximation is lacking because I don’t want to just be close to someone. I want them to know me and to understand me. More than that, I want to be able to know them and understand them because, you see, real intimacy is always a two-way street.

The next thing to notice about intimacy, and perhaps this is why true intimacy is so rare in our culture, is that it takes time to develop. Intimacy doesn’t come together over an occasional cup of coffee at work, talking about baseball scores. It grows slowly as people become deeply known to each other by discussing topics that expose who we are and what we stand for. Moreover, intimate conversation can be difficult because we soon discover that other things are needed for true intimacy to grow and flourish.

For example, people are not all the same, so we need to be able to appreciate the differences between us and accept each other for who we are – not who we might turn into someday. Likewise, I have to be willing to set aside making judgments about the things that I don’t like.

In addition, there are risks associated with losing your “invisibility cloak.” True intimacy is risky, and the biggest problem with people knowing who I am is that, well, people know who I am, and people are notoriously unreliable. Unfortunately, there is a small percentage of folks that actually enjoy making other people feel bad, and someone who is emotionally open forever carries a target on their back. If I am to be truly intimate with another, I need to be open to exposing to them who I really am at my core. Or said another way, I need to let you see my hopes and dreams, while simultaneously laying bare my fears and pain – as well as the scars that life has given me. I must bring forth into the light all the dark, injured, or damaged parts of my soul so they might be healed. True intimacy requires honesty at an unprecedented, and oftentimes painfully uncomfortable, level.

The bottom line is that true intimacy is an extraordinary act of faith, and it is not a process to be taken on lightly or cavalierly. Please don’t take that statement as being in any way judgmental. You have your own decisions to make on this matter, but I have already made mine. For myself, I am deciding for intimacy, openness, and transparency. I have spent too much of my life in an emotional bunker where only a very select few were allowed in.

In the not-too-distant past, I was reaping the result of those poor decisions. I was 66 years old and while I had friends, most of the people that I was ever really close to were either dead or soon would be. This distortion resulted in me having a hard time hearing compliments because I always said to myself, “Oh yeah, you say that now. But you wouldn’t if you really knew me.”

However, you’ll notice that I am speaking of those issues in the past tense. So what made the difference? In a word: “Faith.” The faith to keep my word and remain faithful to the vows that I made to Janet. The faith to not give up and die when she did. The faith to reach out and support someone I barely knew when she needed comfort over the death of her daughter. The faith to pick up the phone and invite the lady to lunch at a Cracker Barrel restaurant after church a few Sundays later.

To be very clear, the relationship that now exists between Jean and myself is not a reward for having done what was right. Rather it was a gift that I was only able to have because all the preceding faithful acts had changed me, turning me into someone who could see the gift and receive it. If I had not been faithful, Jean would have still been the beautiful woman that she is, so the gift would still have been there. But I would have not been able to see it, or perhaps seeing it, I would have been unable to grasp it and pick it up.

Another important point about intimacy concerns the relationship between intimacy and love: the one leads to the other. I dare you to learn to deeply know and understand someone and not start loving them on some level. (It is, after all, possible to love someone that you are not married to…) I think this relationship is why when comparing Faith, Hope, and Love, Paul says that the greatest of them is Love. As Paul pointed out, when you have received everything that God has in store for you, neither faith nor hope will any longer be needed. However, love comes from knowing, so it will continue to exist and will even thrive as real intimacy grows over eternity.

Finally, we need to remember that regardless of what your decision might be about openness and transparency, there is one point about intimacy that is unavoidable. The simple truth is that no one is ever truly alone. As the Psalmist so eloquently pointed out, there is no place where we can go that God is not already there. Likewise, there is nothing that we can do to hide who we are from God. Consequently, when God says that He loves you, you shouldn’t doubt that love. The truth is that God doesn’t love us in spite of knowing us, rather God loves us because He knows us.

In Christ, Amen ☩

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A prayer for when you are feeling invisible…

“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 intimacy of Your presence in my life. But today I want to bless You especially for the ways in which Your intimacy can draw us together. Thank You Lord, for my family and friends, and all those to whom I am drawn close in Your love. Please show me how to reach out to those who do not feel Your presence and give me the grace to help draw them into Your healing light. Amen.”

Hard Truth

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…

Last week I began to realize how crazy life was getting. I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the first one last week and had a pretty good reception, so let’s try another one.

As with last week, the procedure was for Jean to go through the posts and identify one that she felt was an “evergreen” topic. It originally bore a title that indicated it was about loneliness – but it really wasn’t. Hopefully this title is better. It originally ran February 9th of 2020.

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Something that I have been trying to track down for a while now is the source of the intense loneliness that I am experiencing. Over this week and next, I want to look at some of the sources and resources that I have identified. Note that some of these sources will be common to all caregivers, while others may only apply to men. I don’t know – we’ll see.

My first thought was that the sense of being alone was related to Janet’s inability (or at times unwillingness) to say, “I love you.” This is certainly a common enough complaint. I have read many dozens of heartbreaking posts on Facebook with the same refrain: If only I could hear my husband/wife/child/mother/father tell me that they love me just one more time, but now they are apathetic and distant – or conversely they are angry and abusive.

Unfortunately there is a lot of bad advice being handed out in response to these posts – often by people who, though presumably well-intentioned, are in fact far more interested in maintaining the façade of normality than they are in solving any problems. Typical of this sort of response was one I read the other day that asserted, “HD or no HD, no one has the right to treat you that way!” This statement has so much wrong with it that it’s hard for one to decide where to start. The main issue for me, is that the speaker clearly has no idea how devastating a disease HD is for the patient. Instead, they seem almost totally fixated on their pain, their problems, and their rights.

If that is your view, let me clue you in, Buttercup, HD isn’t a head cold that you can get through by “toughing it out.” It is also not a choice like drinking or abuse. And your loved one is certainly not faking it or trying to selfishly manipulate you. Rather, you and the afflicted are living in a nightmare reality where any sense of “normal” is at best wishful thinking, and at worst a cruel hoax. If you haven’t grasped this fundamental truth, you need to do so now because there are no easy ways out. There are, in the end, only two options: you can choose to stay and be called a saint, or choose to leave and be called a selfish jerk – or something worse. In either case, the label will be correct. There are no other alternatives.

Then there are those who will say, “Oh, but what about the children? You have to protect the children!” That is undoubtedly true, but there is a hard truth to be recognized here as well. Children learn from what they observe. If they see Mommy or Daddy knowingly and mindfully sacrificing themselves out of love for a spouse or another loved one, the children will learn the depth of commitment and the holiness of sacrifice.

If, however, they witness Mommy or Daddy abandoning a loved one when the stuff starts to seriously hit the fan, they will learn that there are limits to the love of Mommy or Daddy. And let’s not forget that we are talking about an inherited disease. They will also learn that if I develop this disease, Mommy or Daddy will have no qualms about abandoning me too.

But even if they don’t inherit the gene, the problem of “limited love” still exists. The children can and do start obsessing about what else could cause them to be abandoned. What if I’m gay, or start drinking, or use drugs, or marry someone they don’t like, or fail at school, or start practicing a different religion, or wear too much makeup, or … ?

For her amazing first album “Jagged Little Pill,” Alanis Morissette wrote an autobiographical song named Perfect. This song is pertinent to our current conversation, because the last line has the parent affirming:

We’ll love you just the way you are,
If you’re perfect.

Yes, by all means, let’s “protect” the children – but from what? There is no demonstrable benefit to shielding even small children from harsh realities and hard truth. In fact, children are amazingly resilient when it comes to dealing with adversity as long as they know that they are safe. To see what I mean, think about the kids who are suffering from juvenile HD – like an amazing 13-year-old girl I knew about in Michigan who didn’t live to see 16. Her strength and courage was truly humbling. And then there are the siblings who, like that girl’s two big sisters and little brother, take it upon themselves to be best friends, advocates, playmates, and defenders for their sick sister, even though they know full well the inevitable outcome.

Finally, what is all this talk about rights anyway? If someone was injured in a car wreck, would you go running up to them and demand to know who gave them the right to bleed all over the street? Well, maybe if you are in a Monty Python skit, but no rational person would behave in that way. When you are cut, bleeding is not a voluntary act. However, expectations change when someone’s brain is dying. Suddenly the sufferer becomes responsible for all of their symptoms, and they are held accountable in ways that no other injured person is ever expected to be.

So if that comment is typical of the bad advice out there, what constitutes good advice? Well, first and above all, learn as much as you can about the disease that you are fighting so you can always maintain a realistic view of what is happening and what is possible.

But the most important thing we can do to handle apparent rejection and/or anger from a loved one is to remember that regardless of how bad or random things feel, there is someone in control: God. Of course people will put forward objections to what is for them a very hard truth. For example, there are the people who claim to be atheists because they couldn’t worship any God who would create HD. As much as I would love to address this view, there are so many fundamental errors in that one statement that addressing them in even a cursory way would take us far beyond the scope of this post. Still if you want to discuss it, send me a comment and we can talk. Alternately, C.S. Lewis wrote an exceptional book on this general topic called The Problem of Pain. As it so happens, I have 10 copies of this book on hand and I will ship a copy free of charge to the first 10 mailing addresses that are left in a comment to me.

A far more manageable point is illustrated in this hypothetical conversation:

“If God truly loves my husband/wife/etc./etc./etc., why isn’t He doing more to help them?”

“Well actually He is, and when you think about it, it’s really miraculous what He is getting done.”

“Oh yeah? What is God doing for them that is so miraculous?”

“You. He is doing you.”

Do you think your relationship with your loved one is an accident or random chance? It is not. As caregivers we need to learn to recognize the ongoing miracle that is our life and relationship with the one for whom we are caring. As an example of what I’m talking about, consider my case with Janet. When Janet first started experiencing physical symptoms, we were living in Knox County, Ohio. Despite going to multiple doctors, she was getting a variety of different diagnoses as to the cause of her troubles.

Then “coincidentally” I lost my job and the only one I could find was in western Pennsylvania. But when the doctor there looked at Janet, he realized that there was something neurological going on and gave us a referral to a neurologist.

The neurologist who “coincidentally” we were referred to was basically a bulldog in a white lab coat. I have no idea how many things Dr Brian Cotugno of Washington, PA (bless him) tested Janet for, but his gut told him there was something wrong and he was determined that he was not going to quit until he found out what it was. And he did. But, a new problem arose: at the time Janet got her diagnosis, the Huntington’s Disease Society of America (HDSA) did not have a Center of Excellence (COE) in western Pennsylvania. In fact, the nearest one was 4 hours away at the OSU Medical Center in the state we had just moved from!

Then “coincidentally,” less than a week later, the company I worked for got a contract at Wright-Patterson AFB and decided to move me to Dayton, Ohio to service it – 45 minutes from OSU. While going to OSU, Janet was under the care of Dr Sandra Kostyk, a wonderful doctor who taught me my first fancy medical term: Perseveration.

Then when Ohio winters started getting too bad for Janet and we started contemplating a move south, I was able to find a job in Houston, Texas, which “coincidentally” has a COE at the UT Medical Center (where we are now seeing Dr Erin Furr-Stimming). And the management company that owned the apartment complex we lived in also “coincidentally” owned a complex in Pearland (just south of Houston) which significantly lowered the cost of the move by allowing all our deposits to be transferred. Not only that, but now I am working for a company whose CEO “coincidentally” had a brother who died of HD and so understands at a very personal level what I am going through.

And these are only the major “coincidences” in our lives. Now I suppose that all those things could have just lined up in the right way by accident, but at some point it requires less faith to simply believe that God is in control.

In Christ, Amen ☩

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A prayer for when you have lost so much that you feel no good options are left…

“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 always being present in our lives. But today I want to bless You especially for the ways that You support and reassure me when I feel like I have lost so much – or perhaps everything. The problem is that I can’t see things from Your perspective. Teach me to believe without seeing and show me how to guide others along this same path. Amen.”

Being Your Loved One’s Advocate

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…

As I am writing this, life is moving really fast and getting everything done is becoming a bigger and bigger challenge. Then I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the idea by Jean – and she loved it – so we are going to give it a try.

The procedure is for Jean to go through the posts and identify various ones that she feels are “evergreen” topics. This is the first one. It’s about one of a caregiver’s biggest tasks – being an advocate for their ill loved one. It originally ran January 19th of 2020.

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Last Sunday, I spent a chunk of the afternoon on Messenger talking with my sister — nothing unusual there. What we talked about was the post that went live on the blog that morning. The point of the conversation was the prayer.

I humbly ask that You would bestow on me the privilege of being an advocate for them in the world.

Margie was curious about whether I intended it to be purely personal, or would it apply to all my readers. I think that part of the matter might have been my usage of the word “advocate,” which I realize, in retrospect, is a word that is typically used to communicate very specific and formalized responsibilities. Derived from a Latin root that is essentially a translation of the Greek word παράκλητος (paráklētos) the word refers to someone who is called, or summoned, to stand beside you for support – often in a legal sense. For Christians, the most well-known use of this word is when Jesus used it to describe the coming Holy Spirit.
But I want to step back for a moment and think about it from a slightly different perspective. For my starting point, I’ll take a famous quote from the Shakespearean play Twelfth Night:

“Some are born great, some become great, and some have greatness thrust upon them.”

It struck me that if you replace the words “great” and “greatness” with “advocates” and “advocacy,” the result is a pretty good description of the core of what it means to be an advocate.

“Some are born advocates, …” Most of us have known people who seemingly from the time they were born, realized that their place in the world was to stand by others and speak for them. We typically think of these folks in terms of being social workers, lawyers, or perhaps members of the clergy. But I would assert that there is another side of advocacy. Sometimes words are not enough. Sometimes actions, even strong actions, are required to “stand by” another.

Consequently, advocates are sometimes seen wearing flak jackets under desert brown or blue uniforms. Sometimes, to do their work, advocates have to don green flight suits and prepare to fight a war that is unthinkable, with the goal that it remains unthinkable. Sometimes advocates rush to be the first to respond to a tragedy so they can perhaps snatch some remnant of life from the jaws of death. Advocacy is not just about supportive words…

“…some become advocates, …” Here, we need to consider the Biblical story of the Good Samaritan. We have no idea what was going on inside the Samaritan’s head when he saw the man beaten by thieves and left for dead. Clearly, he could have crossed over to the other side of the road, like the religious men who had come by before him had done, and just kept going.

Instead though, Jesus says that he “took pity on” the man who had been attacked by robbers and so, in that moment, chose to become his advocate. A choice, by the way, that cost him time and money, no doubt disrupted the day he had planned for himself, and could even have put him in added danger as the robbers might have still been in the neighborhood. Moreover, he happily took on the responsibility to see the job through to the end by making arrangements for settling any subsequent debts when he returned: more time, more money, more inconvenience.

“…and some have advocacy thrust upon them.” I want to look at this last situation in a bit more detail because it should feel familiar to anyone who is a caregiver to someone with a chronic disease. I don’t know about you, but nobody ever asked me if I wanted this job. Nobody ever said, “Your wife is going to get this horrible disease. Oh, and by the way, you get to watch her die a little more every day. So, if you could help out, that would be grea‑a‑a‑a‑t.”

The job that gets handed to a caregiver is massive, uncomfortable, long, and so dirty that even Mike Rowe would think twice about taking it on. And it’s certainly not fair that we have to do these kinds of jobs alone or with too little support from families and friends – or even adequate training for what we need to do. Oh, and then there’s the guilt! I have never met a caregiver whose normal mental state wasn’t feeling guilty.

I would assume that we are in agreement that the life of a caregiver largely stinks. So what do we do? The truth is, the sun will come up tomorrow and we will have to do something.

A number of years ago, I went to a seminar where the leader called up to the front someone from the audience and held out two ice cream cones: one vanilla, and one chocolate. He then instructed the person to choose one. The participant got the ice cream they picked and returned to their seat happy. The leader now repeated the exercise with a different volunteer, but this time only held up the one remaining ice cream cone, repeating the same instruction: “Choose one.” The result was a spirited conversation (read: “argument”) about the nature of choosing.

The point of the exercise was to illustrate how people have no problem choosing if they see alternatives, as when they can choose between vanilla and chocolate. However, problems arise when only one flavor is available. We don’t see that as a choice. Rather we devalue it as simply being all that’s left. Consequently, we derive no joy from what we do have – after all, who gets excited about making do with the leftovers? Moreover, we can begin to feel pretty resentful and angry toward those enjoying what we don’t have, or who we imagine are enjoying what we don’t have. I can remember nights driving home from work obsessing about the smiling people in the cars around me and resenting the happy homes that I imagined they were returning to.

In the movie The Passion of the Christ there is a powerful moment when Jesus, beaten and abused, embraces His cross with quivering hands as though it is the most precious possession He has in the world – which of course, it was. At that point, there were no options left available to Him. There was no choice: to “go to the cross” or …
All that was left was the cross, and as an example to us, Jesus chose it, embraced it, and created from it the best possible Good News.

I hope that you see where I’m going with this unfortunately autobiographical tale. As caregivers, we can easily become trapped in a sense of hopelessness that leads us to feel angry and resentful of those around us who are living “normal” lives. That anger and resentment, in turn, bears fruit in the form of a bitterness that convinces us that, in reality, we are the real victims of this disease, not the person dying. And this victimhood is the final link in a vicious loop that feeds on itself, solves nothing, and makes everyone involved in the situation more miserable by making us even more angry and more resentful.

The only way to break out of this death spiral – I call it that because it will kill you – is to choose the situations in our lives in which there are no options (in Biblical terms, “our cross”). When in this way we not only take up our cross, but truly embrace it, we discover that a joyously new and miraculous possibility emerges: the possibility of regaining just a tiny bit of that perfect Eden experience where life wasn’t supposed to be governed by choices between good and evil, right and wrong, or even vanilla and chocolate. We begin to realize the possibility of living our life of service immersed in and infused with the love of God. We can discover that in the midst of this broken, fallen world, God can create for us a holy place where truly, it is all good.

In Christ, Amen ☩

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A prayer for when you’re out of options…

“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 bounty of Your love. But today, I especially want to bless You for making my gift of standing up for others into a way for me to experience a foretaste of Heaven. Please give me eyes to see my own calling, and the strength to complete what You have set before me. Amen.”

Flashbacks

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…

The settling in process continues. For example, as I was writing this post the mail arrived with an envelope containing two copies of Janet’s death certificates. I guess it’s really official now.

So it’s official…

I had a chance to go on a little local radio station this week to talk about caregiving and grief. The host and I talked for about half an hour, and he was wanting to go longer, but our time slot was up. So before we stopped, he asked me on the air if I would be willing to come back and continue the conversation. I agreed, so I will be doing it again, same 8:30 am time slot, on the 9th of April. Also I will be getting an audio recording of the radio conversation that I will be publishing as soon as I can.

Frannie also had a visitor this week ‒ her boyfriend from Houston flew up to visit. He is flying back down to Houston Sunday afternoon.

I had a doctor’s appointment Thursday to get hooked up with a new PCP (Primary Care Physician) after our move up here. My blood pressure is high (which I knew about) but he restarted me on meds for that. He also did an EKG and some blood work. My heart is good and my blood sugar is fine – to tell the truth, I had been a bit concerned about that.

The really interesting thing, though, is that when I mentioned that Janet had died of Huntington’s Disease, my new doctor told me he had been involved in treating members of three separate families in Mineral Wells (pop. 16,788) that had members with Huntington’s! You just never know…

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About a year ago when I first wrote about the connection between PTSD (Post Traumatic Stress Disorder) and caregiving, it was sort of a new idea, but now the connection is well established. This week I had another encounter with one of the hallmarks of PTSD: the flashback.

Flashbacks are when something occurs that puts the person back into a past situation emotionally. For example, in the past I have been triggered by fire alarms that sounded too much like a klaxon, and was put back into the mental state of trying to find my alert EC135 to run to, when there are, of course, remarkably few planes of any sort in downtown Waltham, Massachusetts. This week I got triggered again, but this time by a dream about being a caregiver.

In some ways, the exact circumstance of the dream is a little sketchy, but I remember that Janet was upset about something (I don’t remember what) and was yelling about it. And as had happened so often in real life, the more I tried to explain things, the angrier she got. I eventually awoke with a start, and I remember being stuck for a time in the same old conundrum of how to explain whatever the problem was in such a way that she would understand and calm down. After a few minutes of my mind and heart racing, trying to come up with a solution, I calmed down myself and realized that there was nothing to figure out and no crisis in need of a solution. But boy, it sure felt like there was a crisis…

But that is one of a flashback’s defining symptoms: your mind and body respond to the situation as though it were happening again. My mind was racing; my heart rate was up and I could hear my pulse pounding in my ears; my breaths were shallow and rapid; and I was sweating like mad.

Again I was reminded of what it felt like to be in a seemingly hopeless situation. Of course the situation wasn’t really hopeless – and not just because the situation was at its root a dream and so of questionable reality. But even when the situation that the dream was flashing back to was occurring in real life, it wasn’t hopeless. That was a lesson that I had to learn back then and is apparently one I needed a “refresher course” on, or perhaps a bit of continuing ed.

Which brought up for me an interesting thought: Perhaps learning from flashbacks is possible. I know that’s a curious, counter-intuitive thought, but stick with me here.

Flashbacks are by definition reliving a past experience that was stressful and even dangerous, but doing so in an environment that is often totally safe. For example, in this most recent case, I didn’t really have to worry about anything bad happening to me. After all, I was lying safe and alone in my bed. No monsters hiding in the closets, and no boogeymen (boogeypersons?) hiding under the bed. So if you think about it, what better way is there to work through fear and trauma than to replay it in a totally safe environment? This realization can be huge – especially if (like me) you are one of those people who always thinks of the thing that they should have said on the way home. Similarly, it is so easy to imagine later what I should have done when this or that happened to me.

Unfortunately, I find that too often I don’t want to actually resolve a situation, not really. Often my sights are set much shorter like merely avoiding the consequences, or figuring out how to hide the problem so I don’t have to think about it. Eventually however, the heartache, whatever it is, will come out – often at a time when I am least capable of dealing with it. For example, there are the WWII vets who have suppressed trauma related to their service for 70 years or more. Now they are suffering from Alzheimer’s or other conditions, and memories that they thought were stuffed down so far that they would never again see the light of day, are popping back up to the surface, multiplying the trauma they are experiencing.

So given these consequences, why would we not choose to really deal with a situation and have it be done with? After I toyed with that question long enough, I finally understood that the logical answer I was looking for didn’t exist. Logically, there is no reason to put off handling problems. One of the first lessons I learned as a little kid was to stand up and deal with the past and face the future – but why is doing that so hard?

As I have thought about it this week I have become convinced that it is not just about human cussedness – though that undoubtedly plays a large part. Sometimes we are told that “stuffing it” is the proper solution. We are told that big boys (or girls) don’t cry and no one wants to hear our troubles anyway. Sometimes it’s the feeling that is so prevalent in culture today, that if it hurts, it’s bad.

For caregivers, the problem can be procrastination born of emotional, spiritual or physical overload. I know that I always found it way too easy to say, “I’ll think about that tomorrow…” Then at some point, there is so much stuff put on hold that either “tomorrow” can’t hold any more or suddenly (as was my case) you aren’t a caregiver anymore, and the pile of things that you have been putting off comes crashing down on you like a high-country avalanche. The result is that now I am not only grieving, but also trying to deal with all the stuff that I kept putting off.

Still, looking to the future, my continuing prayer is that as I experience flashbacks, that God gives me the grace to learn from them what there is to learn, and not simply recoil in fear so the lesson has to be repeated again in the future. And as far as the flashback I had this week, well I’m still working on that one. So though, here at least, I will never be perfect, I can keep moving forward.

In Christ, Amen ☩

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A prayer for when your past is coming back to haunt you…

“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 perfection with which You work together the intricacies of creation. But today I want to bless You especially for the wondrous and, at times, mysterious ways in which You weave together my life. I have seen Your glory shining is my mornings and Your majesty filling my nights. Amen.”

Preparing for Reentry…

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…

Not much news this week on the home front – our futon arrived three days early and Frannie and I got it set up in three or four hours. Now if we have any visitors (?) they will at least have a place to sit. To tell the truth, I would have rather bought something used, but none of the Goodwill stores in the area accept furniture.

In other news, Frannie dropped the bomb on me in passing, that her boyfriend Leroy is coming up for a visit – no word on whether he is packing a ring…

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The term “reentry” of course comes from the American space program and refers to the process of coming home from space and reentering the earth’s atmosphere. As it turns out, actually being in space is not that difficult. Likewise, getting to space is not inherently very hard. Put enough thrust under anything and it ends up in space – even a red Tesla sports car. No, the really tricky bit is getting home in one piece – you’ll note that Elon isn’t trying to get his car back.

As a kid growing up in Missouri, I remember watching Walter Cronkite using a plastic model of the capsule to explain for the 900th time about a feared malfunction with the heat shield of John Glenn’s Friendship 7 Mercury space capsule, and how they hoped to minimize the risk of it falling off by not jettisoning the retrorocket pack. Their hope was that its retaining straps might help hold the shield in place.

I also remember interviews with Glenn afterwards in which he related the consternation he felt during reentry as he watched flaming chunks of metal hurtling past the windows of his capsule and wondered, “Was that the retropack burning up, or was it my heat shield breaking off?” As we discovered later with the Space Shuttle Columbia disaster, the heat of reentry is so intense that if it had been his heat shield he wouldn’t have had time to even finish that thought.

Recently, I have been thinking a lot about reentry as well. Not reentering the atmosphere from the vacuum of space, but reentering public life from the vacuum of caregiving. Though to be honest, I haven’t actually gotten as far as “reentry.” Right now I’m all about the “Preparing for…” phase of the process, and the first thing I noticed was that, with the exception of the airplane-like Space Shuttle, everyone who has ever gone into space has come home sitting backwards.

Which, if you think about it, is an interesting metaphor for life in general, and life post-caregiving in particular. As humans we seem to prefer to back into the future. For me, that posture is often more comforting because it means that I can be reassured by the sight of all the things that I’ve survived – which can be preferable to having to consider all the challenges and hills that there are still ahead of me. The unfortunate side effect, though, is that it makes it kind of hard to see where I am going. So, yeah, I guess that is one thing that I need to be working on.

In conjunction with that exploration, I have noticed something interesting about myself. I often say that if I ever created for myself a personal motto, it would probably be something along the lines of:

Just get started,

inspiration will come…

However, probably from the effect of living with Janet for 35 years I have become much more of a planner – though, from time to time, I still tend to start moving before I have a clear idea of where I’m off to. And while going through life “facing front” allows me to see opportunities and to be prepared for them as much as possible, it also allows me to see innumerable challenges fraught with all manner of potential problems.

For example, being out in the world means having to deal with people you don’t know and perhaps could be even someday, eventually, possibly, maybe, (gasp) dating. I have been out of the loop for so long that I don’t remember all the rules, and the ones I do remember are probably offensive to somebody now. All I know is that the last time I had to figure out “the rules” was Junior High – and that was a pain that I am not looking forward to repeating.

My best friend: “Hey Mike, I talked to Rebecca 4th period and she says she likes you.”

Me: “Hey, that’s great!”

Best friend: “Yes but, she also said that she doesn’t like you, like you…”

Me: “AAARRRGGGHHH!”

And add to that looming dread, the fact that while I can (with enough editing) come up with some pretty good written words, I am fundamentally not super comfortable speaking with people live or in online chats. So I am often left wondering, if we can send people to the moon, why can’t we figure out a way to edit the words coming out of our mouths? Like the time I called Janet by one of my ex-wives names in the middle of an argument. My, but that escalated fast…

But beyond any potential re-living of the bad old days of my youth, this last point brings up another topic. The world has changed a lot in the past couple years. Coming out of the bunker where I was caring for Janet I am finding a world that I at times don’t really like, or even recognize. So I begin asking myself questions like:

  1. How do I fit in?
  2. Can I fit in?
  3. Should I fit in?

With the third question being in many ways the most important. To begin with, the level of fear in society is unbelievable – and to me personally, intolerable.

Or again, people used to say, “You only have one chance to make a first impression.” Today, unfortunately, you seem to only have one chance – period. If in your entire life you have ever said anything that is troublesome to anyone, you are just done. There is no acceptance of misunderstandings and no tolerance for differing opinions, and even if you apologize for something that you acknowledge you were wrong about, there is certainly no forgiveness. Sometimes it all gets me thinking that perhaps sitting on my front porch and yelling at people who walk on my lawn wouldn’t be such a bad life. But do I really want to end up like Clint Eastwood’s character in Gran Torino?

This point ties in with another challenge I have been considering. As I grow older, I have noticed a tendency to become more introverted – a not uncommon situation. Recently, I was listening to a radio program that was discussing retirement, and they mentioned that introversion was a real problem in that context as well. The counselor leading the discussion said that too many people decide to simply withdraw from everything, and sit on their front porch in a rocking chair and watch the world go by. But as I have written before, that can kill you.

So with all these challenges in front of me, what am I to do? Well, I could turn back around, try to convince myself that the things I saw when facing the other direction weren’t real, and resume sliding into the future backwards. But for me it boils down to a rather old-fashioned word that people today like to ignore or redefine – Integrity. And as far as I can see there is only one thing that I can do with integrity, and that is to continue becoming who God made me to be. Who I am as a created being is what ultimately gives my existence meaning. As an engineer, I like to tell people that raw data is meaningless. The thing that gives it meaning – and therefore value – is its context. The proper context for my life is The One who created it.

Admittedly, figuring out who that person is can be a big challenge, but then only the big challenges are really worth tackling. It is only by learning who I essentially am that I can learn to let go of the temporary and accept what comes next. For example, the relationship that Janet and I had was the best that I could ever conceive. But that, in a way, is part of the problem: It’s the best that a human mind could conceive – I think I’d kind of like to find out the best that the mind which created the cosmos in all its amazing complexity and diversity could conceive. Now that could be interesting!

So the preparations continue…

In Christ, Amen ☩

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A prayer for when you are going through life sitting backwards…

“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 future that You have prepared for those who love You. But today I want to bless You especially for our ‘swivel seats.’ So often I feel afraid of the future, but You are eternally forgiving and patient. At any moment I can turn around in my seat and face ahead towards the future, fearlessly. Thank you. Amen.”

His ‘n’ Hers

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…

As we continue getting settled in, the place is really beginning to come together. This afternoon (Sunday) we will be getting our washer and dryer delivered. They are both made by LG and while I have never owned one of their appliances before, I did have a couple LG phones that I really liked, so I’m hopeful.

I mentioned last week that a dear friend’s daughter died of HD. Well this week there were visitation hours over in the Dallas area so I attended. I am so glad I did!

In business there is the term, “flying the flag” that refers to attending a meeting with little or no expectation of really doing anything useful, but you go because you feel you need to. As I was driving to the visitation I was feeling on some level that this was a bit of a “flying the flag” kind of trip. I was going because she was a dear friend and I wanted to be there to help support her but I had no idea what that would look like. Plus, to be honest, there was a certain amount of apprehension as well. After all, we had never actually met so I guess on some level you never really know, do you?

But what I found was very different from those worrisome thoughts. Jean is as wonderful a lady in person as she is online, and her family is great too. Turns out that her daughter taught at a local Christian school and a lot of former students were stopping by to pay their respects – which says a lot about who she was during her life here on earth. But more importantly, attending the visitation really did accomplish some things that were very positive.

In case you didn’t know, Janet donated her body to the local medical school to help train future doctors in anatomy. Consequently, when Janet died, her “final arrangements” consisted of calling a pager number and telling the school where they could pick up the body. There was, therefore, no visitation, no memorial service, and no funeral – just a phone call and a pickup by a local mortuary. In six months to a year when the school is done with Janet’s body they will cremate what is left and send the ashes to us via UPS.

Now don’t get me wrong, her body donation made the time immediately following her death much more bearable. Moreover, I am so glad that she made that choice because it was a perfect expression of her life and attitude. But there were also negatives to that decision. For instance, seeing her body in a casket would have provided a certain kind of closure, which Frannie and I missed.

But in the end, while I benefited from this visitation greatly, this visit wasn’t about me. The primary goal was still to support Jean and her family. I have never met IRL (In Real Life) someone that I had first met online. Hence, one thing I became aware of was that, for me at least, the initial meeting felt a tad awkward. We had talked so many times, about all manner of things, so in one way it seemed like we were old friends, but in another way we were just meeting. Still, we had time to share blessings and challenges, and I felt very blessed by the time together – and hope Jean did too.

On a completely different track, this week I realized a couple of other nice things about living in a small town like Mineral Wells. First, at night it gets really dark so you can see so many stars, it is incredible! Second, it is quiet. When we were living in Pearland, the TV volume was typically set around 30 to 40 on a 100-point scale. Here in Mineral Wells, with the same TV displaying the same programming, I have the volume set between 10 and 12.

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Many years ago, a common gift idea for newlyweds was “His ‘n’ Hers” gifts. At one time, nearly anything that both members of the couple could use came in special monogrammed versions. However, linens were often the most common of such gift idea – and the most practical. When Janet and I were married, Janet’s best friend (and Frannie’s future godmother and namesake) gave us a set of monogrammed towels and washcloths from LL Bean. Amazingly, some of the towels survive to this day.

That towel serves as a reminder to me that as a married couple there are certain things that we should share. However, one thing that we should not share is symptoms – and sometimes when caring for someone 24/7 it is hard to avoid that sort of “togetherness.”

The first time I ran into this effect was with my first wife’s mother. All mother-in-law jokes aside, she was one of the most emotionally hardened, manipulative, bigoted people I ever had the displeasure to meet. She would come home at night laughing about how she had twisted a person’s words and manipulated situations to accomplish what she wanted – oh, and did I mention that she worked in Child Protective Services? Sweet, right?

From day one, she angered me and I was offended by her warped sense of ethics that allowed her to do things like tell her daughter that if her future son-in-law had a black best man she was going to walk out on the ceremony. It’s a long story, but I didn’t find out about it until years later. When I did, I blew my stack, and had to deal with her retribution for years. Which is another long story.

The point is that the more I thought about what she had done, the more emotionally hardened I became. When I realized what was happening, I was confused. How could I become like the person I disliked so much? But then I was going through some counseling, and the therapist explained it to me. She said that at the subconscious level our mind doesn’t understand right and wrong, so if it sees me focusing on something a lot – like what a jerk my ex’s mother was – it would figure, “Oh, that’s what Mike wants to emulate,” and start moving me emotionally in that direction.

But this principle also appears in other places – like in the Scriptures where Paul gives us the prescription for preventing the problem: “Focus your mind on things above, not on things on the earth.” Col 3:2.

In other words, concentrate on the good stuff, and the best of the good stuff is our Creator.

While this is an important lesson for everyone, I think that it is particularly critical for caregivers. On the support forums you are inundated with people asking for help with a loved one who is becoming increasingly argumentative, judgmental, and accusatory. Sometimes you see that the original poster has started mirroring their loved one’s emotional state – which the loved one sees and can, in turn, react to by amplifying their behavior.

So ‘round and ‘round she goes,

and where she stops, nobody knows.

Compounding this tragedy is that the emotional responses that started the cycle in the first place weren’t even real, but the symptom of a disease. So they end up with His ‘n’ Hers symptoms. What is needed is a way to break the cycle of ever-worsening actions and reactions – and Paul’s prescription is an excellent tonic. But it will require letting go of some stuff before you can experience its salutary effect.

For example, there’s the attitude that says, “Well they started it! They have to say, ‘I’m sorry’ first.” Of course there are two immediate problems with that perspective.

First, you probably aren’t five years old any more. Do I really need to go into more detail here?

Second, the person who you are wanting the apology from is ill. Often things like repentance, logic, and even “common sense” are all things that they simply don’t possess any more. Sometimes expecting them to behave in a different way is akin to asking a paraplegic to run a 100-yard dash.

The other factor that plays in here is forgiveness. Very often as a caregiver you truly have been wronged by the person that you are caring for, and that injury must be dealt with. Thankfully we live in a world where our Creator has also made true forgiveness available, and it is only that forgiveness that has the power to wipe the slate clean and give us a fresh start – both with Him, and with our fellows.

In Christ, Amen ☩

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A prayer for when you are feeling short of patience…

“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 compassion and forgiveness. I know firsthand how healing the words, ‘I forgive you,’ can be. So today I want to bless You especially for the gift of being able to forgive others. Thank You for making available the blessing of forgiveness to all. Amen.”

You can’t choose, what you can’t choose

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…

I want to start this week with a word of gratitude for the support that has been showered on my daughter Frannie and me. At one point, I thought of trying to respond to each one of you, but that plan quickly proved impractical. In the first place, there were so many comments that I couldn’t keep up with them all. But more importantly, I’m not totally sure that I even saw them all. The problem is that when you start receiving a lot of comments, Facebook doesn’t generate notifications for every one. So let me just say to all of you who commented, liked, or otherwise reacted to my posts about Janet’s passing: Thank you so much! It has been a true blessing to my family as we navigate these uncertain waters.

I want to especially thank all of you who shared how my writing has helped you to, in some small way, confront the challenges that you have before you – which is exactly what I was hoping to accomplish when I started this effort some 14 months ago.

One of the hardest parts of this effort has always been to keep myself engaged. As I have alluded to many times, the challenge is to resist the strong impulse to hide behind a façade that would allow me to avoid letting people really see what was happening in our life. But what kept bringing me back was the sure knowledge that what really heals (myself and others) is not convincing myself that everything is okay, but ripping off the bandages so others can see the wounds and burns – especially the self-inflicted ones. The simple truth is that those sorts of things are what give hope, and hope is what enable us to survive what we are going through.

Of course, that truth runs counter to what our culture is constantly telling us. Culture tells us that only perfection is acceptable – no wonder we see so much hopelessness around us. The mere hint of a skeleton hiding in someone’s closet is enough to get them ostracized and “canceled.” No wonder, also that there is so little intellectual honesty. Many people feel – and not without reason – that they can’t afford to be honest. Recently, I read an essay by a fellow named Brad Listi and one sentence really jumped out at me:

…I think that in the age of social media, we get to curate ourselves to such a fanatical degree that a lot of people have become masterly (sic) at cultivating online personas or a written persona or a digitally presented persona that is sort of like Teflon—all the rough edges are sanded away.

Setting to one side the fact that the author clearly has no idea what Teflon is, that statement certainly rings true as an indictment of the cultural environment that surrounds us every day. But for the most part that is not what I have found here among the folks that read and respond to my writing. So again, let me thank you all for the support, strength, and hope that you have given me and my family. We’ll get each other through this…

Whatever you are going through right now, it is survivable.

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Recently, in sharing the story of what has been happening in my life. I have had quite a few people say to me that with Janet gone, I can at least do what I want to do now. To be clear, I have no doubt what they meant when they spoke those words to me. What they intended to say was that at least life will be easier now, without the burden of caring for a terminally ill spouse – a point which is most certainly true!

However, given the way my brain works, it didn’t take me long to see that although they didn’t mean it in this way, the statement had an alternate understanding that highlighted a truth about myself, and I would suspect many other caregivers. That same statement could also imply that in some way my service to Janet was something that I was forced to do – it is that idea that I want to explore a bit.

Underlying the idea of being “forced” to serve is the belief that no one in their right mind would choose to do things that are hard and unpleasant. Perhaps this is why so many people today have a hard time understanding people in the military, first responders, … and of course, caregivers. We live in a society where the main deity being worshiped is named “Self.” Hence, even when people talk about altruism, it is often couched in terms that are ultimately selfish. For example, we are told that we should give to one cause or another because it “feels good to do good.” In other words, altruism isn’t really about helping the other person: it’s about making yourself feel good.

However, real altruism often imposes far more penalties than it bestows benefits. All caregivers have at one time or another gone to bed mentally and physically exhausted, and the only (minimal) comfort they had was that they did what needed to be done. Perhaps that is the normal state of affairs for you right now. I can certainly remember many times when it was so for me. A phrase that is often heard during the grueling training required to become a Navy Seal is, “Embrace the suck.” One former Seal has written a book of the same name. He says that what the phrase means is to:

…Lean into the suffering and get comfortable being very uncomfortable.

Whether you are fighting a war against a foreign enemy or a disease that is slowly destroying your loved one, in many ways the personal challenge is the same: proactively learning to get comfortable with being uncomfortable.

People have asked whether I wished that I had chosen a different path in life, and my answer is always the same. I would have preferred that Janet and her father did not have Huntington’s Disease. I would have preferred being able to spend more time laughing and cuddling with Janet. I would have preferred retiring and growing old with Janet while travelling around the country in an RV visiting our kids and grandkids. I would have preferred all those things and so much more, but all those preferences have one thing in common: they weren’t possible. And, as the title of this post points out, “You can’t choose what you can’t choose.”

I couldn’t choose a different circumstance or a different Janet because those options didn’t exist. At the end of the day we all – the great and the small – have to deal with what really is, and reality always wins out. We can for a time choose to ignore reality, but that is not the same thing as changing what is ultimately true. I could have chosen to divorce Janet when it became clear that she was not changing as I thought she would in response to my love. I could have also chosen to divorce her years later when I learned why she was not changing. Then there were multiple times when I could have chosen to divorce her for being verbally and physically abusive.

However, none of those “choices” would have changed the underlying reality that Janet was desperately sick and needed help. And none of them would change the reality of her ultimate fate, because ignoring reality doesn’t make it less real. Moreover, while reality may be uncomfortable or even painful, the thing to remember is that the very attempt to ignore reality imposes its own penalty that gets added on top of any discomfort that reality imposes.

So you hurt because reality sometimes stinks, and you have additional pain from trying to ignore it.

In the end, I choose reality. I choose to take on the job in front of me, to serve and to get comfortable with being uncomfortable.

And I thank God for the opportunity to do so.

In Christ, Amen ☩

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A prayer for when you are feeling “uncomfortable”…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the beauty of the cosmos that you created. But today I want to bless You especially for the times when reality is not particularly beautiful or pleasant. Help me to remember that I am living in a world that is broken and hurting, and remind me that you are setting things right, bit by bit. Thank you also for using me – flawed though I may be – to effect change and to help in setting things right. Please Lord, show me how to keep my eyes open to the brokenness around me and give me the courage and wisdom to set it right. 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.”

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.”