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You Don’t Have to be Alone

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 is something of a landmark or dividing line. This Sunday is the last one where Jean and I will be in church as individuals. By the next time we gather with the rest of our little fellowship, we will have undergone an amazing transformation to become simply “The Porter Family.”

For that reason (and many, many others), it seems appropriate to us to begin recapping the past three or four months and consider some of the steps that we have gone through in the process of recovery – and highlight what is still left to be done. You see, remarriage is, for us, a wonderful milestone, but if you think about it, a milestone is just a marker on the road you are traveling. And your road will likely be different from ours, it may pass that same marker, or you may find yourself soon standing before a different one perhaps labeled, “Start Second Career” or something else. Literally, God only knows.

And speaking of roads being traveled, this week Jean and I will be on a post-nuptial road trip visiting family. Consequently, next Sunday we will not be posting, however we will be back June 13th.

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A recurring theme in many posts that we read on support forums – as well as life in general – concerns loneliness and the avoidance thereof. And there are good reasons for this concern to be so ubiquitous. For example, it is often the first symptom that the caregiver experiences personally as they stand by powerlessly while dementia begins to slowly eat away at the person they love.

This situation is an example of a condition called “Ambiguous Loss” – which includes the cruelly painful process of mourning the passing of someone whom you love, but who is still physically present. In fact, one of the things that God used to bring us (Jean Barnes and Michael Porter) together was the shared memories of navigating those terrible waters. Waters filled with horrifying icebergs in the form of doubts and questions about who we were and where we were really going.

While we survived that period of our lives, it certainly wasn’t pleasant. One of the keys to that survival was learning to draw a distinction between two very different, yet confusingly similar, ideas. What we are speaking of is the difference between being by yourself, and being alone. We have learned that drawing a clear, unambiguous distinction between the two is critical because when one is caring for someone else, one of them is just part of your daily routine, while the other is an illness that must be eradicated to the greatest extent possible.

To see what we mean, consider that being alone and isolated is normal and even to be expected when caregiving – especially in the midst of the current Covid-19 panic. However, aloneness is not inherently a problem. Many people enjoy hiking, climbing, fishing, hunting or other solo pursuits out in nature. And despite being the only human being in miles, they nevertheless report a deep sense of connectedness to God, nature, the universe, etc.

Being alone, on the other hand, implies a feeling of being disconnected from what is going on around you, of being dissociated from everything beyond the confines of your own skin. Hence, someone can feel very alone even in a crowded room. Quite rightly, the medical profession has identified this kind of dissociation as a pathology.

“The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.”

Unfortunately, this quote illustrates for us that dissociation is a pathology that society pushes relentlessly in nearly every realm of life – at times bordering on psychosis in the destruction of reality in favor of an oxymoronic “personal reality” or “individual truth.”
But getting back to caregivers, we have suffered through many things in common over the course of our separate caregiving journeys, but there are always many unique aspects, as well, so we’ll speak separately for a bit…

Michael:

A problem that I think is probably specific to men is that we tend to (as my sister once described it) put all our eggs in one basket. Or to put it another way, we tend to concentrate much of our attention on just one person: our wife. Consequently, when she begins to exhibit the signs of dementia, we tend to become lost very quickly.

For myself, this issue was particularly troublesome because my Janet was always the disciplined, logical one – then, seemingly overnight, it was just all gone. I remember thinking that my life felt like the rope to my anchor had been suddenly cut and I was adrift with no solid point of reference that I could guide on. During that time, I remember feeling like one of us was going insane, but which one was it? Looking back, I am amazed at how willing I was to throw myself under the bus to maintain the image of Janet that I had in my head.

I was totally unprepared to deal with the anger, irrational behavior, and violent outbursts. I had no idea, at first, what I should do. I remember crying out, “Why can’t I have Janet back for just five minutes so she can tell me what to do?” But that never happened.

In the end the image became unmaintainable and I had to come to grips with the objective fact that Janet, as I had always known her, was gone. And even more horrifying was the possibility that the person that I thought she had been, never really existed – that the “personality quirks” I had always recognized were not the legacy of an abusive childhood that could eventually heal, but symptoms of a disease that would only get worse.

There is no isolation so profound as the one produced when the person being missed is still present physically but is absent in every other possible way.

Jean:

If you had parked outside my house any time during 1987, you would notice a nightly routine. Our two children would be off to bed by 9:30 and their bedroom lights would go off. Soon the living room and master bedroom would go dark as we all went to sleep. Then about 30 minutes later, the living room lamp would come on. It was me. I was reading again every brochure we had accumulated about the relatively unknown condition called Huntington’s Disease. I would spend an hour or so reading and crying, begging the Lord to please not let us have to deal with HD.

My husband’s grandmother had died of HD a year before we married. Now Don’s dad was in late stages of the disease. A few months later we buried his dad in Indiana, and to my horror, I began seeing early signs in my husband. Don’s health continued deteriorating and in 2006, we laid him to rest. We had been married almost 35 years and I felt much loneliness. My identity as a wife and helpmeet to my husband disappeared. Then, just seven weeks after my husband died, his older sister also died in her sleep, of HD.

God gave us comfort and I felt surely my children would escape HD. My son seemed healthy, but then I began seeing signs of HD in my precious daughter. Jennifer was an accomplished church pianist and loved using her talents to serve the Lord. She and her husband had two precious sons that they had adopted.

About this time, her husband forced her out of the house to make room for another woman. Jennifer came to live with me. One of my greatest joys in life was taking care of her during her last years of life, even though every day was totally exhausting. In Feb. 2021, God called her home very unexpectedly. I knew she was getting weaker but surely did not expect her to die that day. The following days were a blur of wondering why I was even alive, and what my purpose in life was now? HD had now taken two of my immediate family – and five altogether.

So with these problems and experiences, what did we do? Well, ultimately we both came to see that our salvation lay, not in trying to avoid reality, but in fully embracing it. You see, no matter how difficult it might be, reality is – well, real. So in that sense, there is really no alternative – except perhaps a path resulting in extreme detachment or perhaps even psychosis.

But accepting reality means accepting all of what is real – not just the parts that we like or are ready to accept. For example, you might like the happy pleasurable parts of life but want to reject the messy bits, or you might find joy in creation while feeling uncomfortable with the idea of a Creator. Likewise, a common meme shows a tree growing up through a split that it has created in a large rock.

The picture’s intended lesson is about persistence and asks us to concentrate on the tree. But the rock also exists, and the picture shows the result of decades or even centuries of “contention” between rock and tree. While things look good for the tree right now, the final result is still far from certain. After all, a forest fire could still come through and destroy the tree while leaving the rock unscathed.

Perhaps a better lesson is that from the human perspective, reality is seldom a flash of life-changing enlightenment. Rather, for created beings such as ourselves, reality is always being revealed as a curious mixture of “is” and “is becoming,” where we can never be absolutely sure of all the final details. However, that uncertainty doesn’t mean that we are adrift with no solid point of reference.

To the contrary, verbs often imply nouns. For example, our existence as created beings implies the existence of a Creator. And the existence of blessings is a sign that the Creator cares about His creation. A point that brings us back to this post’s original assertion: You don’t have to be alone.

Even when times are at their darkest, you will discover that, if you look for it, there is always enough light to illuminate at least your next step. Our Creator has known for as long as there have been human beings, that it is not good for them to be alone.

So He is always there, and oftentimes He brings into our lives other people to accompany us and support us on our journey – sometimes as a friend, sometimes as a sibling, and sometimes as a spouse.

In Christ, Amen ☩

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A prayer for when you are feeling alone and disconnected…

“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 light and warmth that You bring to our world. But today I want to bless You especially for those loving souls that You call together to surround us with comfort in our pain. Please show me how to be such a person to others. Amen.”

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Anger and Aggression in Dementia,
Triggers and Responses

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…

To start this week, I have been overwhelmed with the response that I received to the first half of this discussion that I posted last Sunday. That post appears to have truly “struck a nerve” with many, many people as they have chosen to share with me their personal stories and experiences. Thank you for your openness and your concern for others.

This week we are going to continue the conversation by talking about some of the things that can trigger outbursts, and coping mechanisms that can be helpful. But first I need to make a quick Public Service Announcement.

Some time ago I talked about getting lost in an “Alice in Wonderland” world of lost perspectives and identity. To address this problem, you need to cultivate a relationship that can serve as your battle buddy. In our civilian context, this person has several additional jobs. First, they will be your point of reference to help you identify when the stuff starts to seriously hit the fan. Second, they must be someone whose opinions and judgments you absolutely trust. This point is critical because there will come a time when you are called upon to make some really hard choices. Their job is to help you to remember that your focus is getting your loved one the help they need – no matter what it feels like at the moment. Third, they must have the honor to keep what you tell them in confidence – and the wisdom and bravery to know when, for your safety, they should not.

Unfortunately, just finding this person can be traumatic. I have written before that when Janet started having really bad symptoms I tried to ignore them because I wanted her to be my partner in this battle – even when it became clear that such a partnership was no longer possible. Finding this support person can feel disloyal, but let me say in the strongest possible terms that as long as the relationship is maintained in integrity, it is not.

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Last week we talked about how common aggression and anger can be. The time has now come to start considering what are some of the things that can trigger violent or aggressive reactions? Here are just a few of the most common ones.

Lack of recognition: Simply put, they don’t know who you are. Despite all the memes and aphorisms about how you can’t forget love, the truth is that they can forget you. Sometimes the loss is temporary, and sometimes it is permanent. But being thrown together with someone they don’t think they know but yet exhibits a desire for emotional and perhaps physical intimacy, understandably produces fear and anger.

Progressive brain injury: Many sources of dementia are progressive – which is to say they get worse over time. The nightmarish part is that not only is your loved one’s brain dying, but they are awake to experience the full horror of it. I will never forget the looks of abject terror that I saw from time to time in my HD positive father-in-law’s eyes. At the time I didn’t understand the emotion behind those eyes but now I do.

Delusion: Dementia patients often start imagining troublesome realities. Ironically, these delusions can sometimes result from their injured brains trying to make sense of the previous two triggers. Note also that delusions come in two “flavors”. One, called reasonable delusions, are things that are possible, but unlikely. For instance, “My family is trying to kill me.” The other form, unreasonable delusions, consists of ideas that are clearly impossible like, “Zombies are hiding under my bed.”

Physical problems: These are issues like poor diet or ill health from unrelated maladies. For example, bad nutrition can put undue stress on anybody, and the last thing that someone with a degenerative brain condition needs is more physical stress. In the same way, ill health in the form of a Urinary Tract Infection (UTI) is a very common trigger for aggressive behavior. It should always be considered as a potential cause when the troublesome behavior begins very abruptly and the symptoms progress rapidly.

Ok, so we understand some of the things that can trigger aggressive behavior, but what are we supposed to do about it? While it’s not unusual to respond to anger and aggression with fear, shock, discouragement, confusion, feeling battered, irritation, and even anger of our own, these responses aren’t even remotely helpful, in that they do nothing to help your loved one, and make you feel rotten.

Of course we all know, or at least should know by now, that doing the right thing doesn’t always make you feel good either. Would it be wonderful if it did? Someday I may write about all the good, needful things we do that can leave us feeling rotten.

But I digress, let’s talk about some good responses. As we go through these ideas, think about how many of them fall under the broad heading of, “Do unto others as you would have them do into you.” Hence, maybe the fact we need most of this list says a lot more about us than it does about them. Just a thought to ponder.

So here we go, in no particular order:

Be realistic: Things have changed, and they aren’t ever going back to “normal.” I have talked about this point before, but I know that I need to be reminded. Some things are just not “fixable,” so excising from your mind the idea that you can fix the negative effects of the disease, will also remove a lot of stress. In turn it benefits your loved one because you will make better decisions.

Create a calm environment: Think about how to remove things from around them that are naturally upsetting. This might mean turning off the TV or changing the channel to something more calming. However, that act may not be as simple as it sounds. Recently, I saw a post from a woman who realized that one of the things that bothered her husband was watching the local weather forecasts! So don’t look for what you think is calming. Watch your loved one and observe what is calming – and don’t neglect the benefits of music, proper lights, and even the colors of the walls in their room.

Be vigilant: There is an old saying in the military about keeping “your head on a swivel.” What it means is that you don’t want to get so fixated on one problem that you miss another sneaking up behind you. Note this mode of behavior is not something most people do automatically. It may require a bit of conscious effort. In addition, this recommendation comes with a warning label: Remember that one of the symptoms of PTSD is hyper-vigilance. In that case, you may need help to turn things down a bit (see above: “Battle Buddy”).

Don’t ever argue: It never accomplishes anything, ever. The idea that there is such a thing as winning an argument is a myth – and a dangerous one at that.

Watch how you talk: Speak softly, slowly, clearly, and above all, reassuringly. Remember that for your loved one, their primary, everyday emotion may well be fear. When they are anxious or afraid, you want to be the one that they run to, not the one that they run from.

Give them time: Sometimes dementia patients require extra time to formulate a response. As much as is possible, let them set the pace of conversations. I have seen Janet take 30 to 45 seconds to complete the mental processing necessary to answer a question with a “simple” yes or no response. Likewise, you can help them by avoiding open-ended questions like, “What do you want?” Finally, remember that getting irritated won’t make their brain work faster.

Include them in the solution: Repeat their words back to them so they feel they are a part of, or are contributing to, what is going on. For example, Janet worries that when Frannie and I are out to eat, we won’t eat healthy. So on the occasions when we go out, I tell her that, “…we are going to eat healthy. Thank you for helping us to remember to do that.”

Redirection: Give them something to do instead of becoming angry and aggressive. For example, you can enroll them in “helping” you do what you need to do. If they are resistant to bathing, try giving them a cloth to wash their own hands while you clean everything else.

Don’t infantilize them! Even people with dementia can tell if you are being condescending towards them, and it irritates them just as much as it would irritate you. They may be acting like a child, but don’t treat them that way. Don’t order them around but instead, guide them in discovering the needful solution “on their own.”

Talk to the doctor When a new or troubling behavior appears, be on the phone talking to the medical staff about the problem to get their advice and, if necessary, medication.

So finally, there is one last topic that we need to talk about – and it’s the hardest one of the lot: institutionalization. While it is our most fervent hope and prayer that worst never comes to worst, we know that realistically, the odds are not in our favor. The best approach therefore is to have a plan, and step one is to educate yourself now. Don’t wait until there is a crisis and then try to figure it out on the fly.

First you need to know what resources are available in your area, and how to access them. Second, you need to know what the law is in your jurisdiction. Know what you are allowed to tell clergy, counselors, etc. in private. The issue here is that people can be compelled legally to contact the authorities if you confide certain things to them. Likewise, professional organizations often have ethics rules governing the disclosure of confidential information.

Remember, the point of all this preparation is that you need to be able to demonstrate that your loved one isn’t evil or a criminal, but rather that they are ill. They don’t deserve, and won’t benefit from, prison – they need hospitalization. So in order to be an effective advocate for them you have to find out what information or data you will need to prove that, realizing of course that there is no such thing as “too much” data. While the specifics may vary depending upon where you are, a good place to start is with documenting everything.

  1. Get letters from their doctors describing their condition and the effects that can be expected – and make sure that it is updated regularly.
  2. Take pictures of the bruises, cuts and scratches. If you take pictures with your phone, make sure that your phone is configured to automatically stamp pictures with the time and place where they were taken. Phones can also be configured to automatically backup all your photos to the cloud. Make sure both features are turned on.
  3. Keep a notebook where you make dated entries describing things that happen. These are called contemporaneous notes and are highly prized in court.
  4. Tell people what is happening – even if they don’t believe you. These are called contemporaneous conversations.

So there you have it, or at least the basics. All I have left to share is one last word of encouragement.

No matter how hard or painful the journey is, no matter how permanent your current tribulations feel, know that all of this is temporary. In addition, you need to also remember that our lives are ripples in the pond of the time. Hence, what happens now – and how you respond to it will have repercussions for years, and perhaps centuries to come.

So while it’s true that 100 years from now in 2121, your multiple-great grandchildren will likely know as little about your pain as you know about your multiple-great grandparent’s problems in 1921. The larger (and far more important) truth is that they will still be feeling the effects of your actions.

Through faith, this fact can be reassuring or without it depressing – it’s your choice.

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

“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 eternally present. But today I want to bless you especially for the part that You have given me in forming the eternal future. Guide my hands and direct my words to accomplish Your good works. Amen.”

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Anger and Aggression in Dementia,
How Common is it?

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 want to start a conversation about a problem that is all-too-common in folks that are suffering from any of the myriad of diseases that produce dementia. In addition, some conditions (such as Huntington’s Disease) produce this problem – not as a side effect, but as a primary symptom. The problem is, of course, anger and aggression.

On the support forums, these symptoms are depressingly common. It matters little what the underlying condition might be, violent behavior is not rare. Moreover, the family caregivers get stuck dealing with it because the professionals (nursing homes, memory care facilities, etc.) simply refuse to become involved. I have been told by nursing home administrators that they don’t accept Huntington’s patients because they are, “…too violent.”

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My first encounter with the degree to which the professionals abandon people with anger issues to the amateurs at home, was with my mother who was suffering from dementia as the result of two strokes. She was nearly evicted from a local nursing home for being too aggressive verbally. Really? She was an 84-year-old woman who couldn’t get out of bed by herself, and your staff was concerned for their welfare? Give me a break.

Still, it is an issue that is out there, so I decided to look into it and found an amazing amount of potentially useful information. In fact, there was so much good information that rather than trim it down and possibly leave out something important, I decided to cover it in two parts. This post discusses aggression, some of the non-obvious concerns, and how common it actually is. Next week we’ll talk about causes and coping techniques.

Please note that while some of the following sources are HD-specific, similar research exists for all sources of degenerative dementia. In any case, the basic principles are the same.

For me, my research started with a paper by C.A. Fisher, et al, Aggression in Huntington’s Disease: A Systematic Review of Rates of Aggression and Treatment Methods. Published in the January 2014 issue of the Journal of Huntington’s Disease, this article summarized the contents of 23 research papers, published around the world, and came up with some stark results. For example, it concluded that:

“Aggression is one of the primary causes of hospitalization in this population, is associated with higher rates of nursing home placement, and places family members, carers and other clients at risk of assault.”

So how common is it exactly? In the research that study reviewed, the incidence of aggression ranged between 22% and 65%. In order to explain this wide range, the authors made an interesting observation: studies involving patients that had only recently been diagnosed tended to have the lower numbers while the high end of the range came from patient populations that had been diagnosed 10 years or more previous – or to put it another way, the longer the patient survives, the greater the chance that they will exhibit significant aggression.

By the way, this observation correlates nicely with one generic dementia study I found that pegged the incidence of aggression in the end stages of the underlying disease at greater than 80%.

So when we’re considering aggression, what behaviors are we talking about exactly? Everything from angry words, to temper tantrums, to physical assaults. The research paper I referenced earlier uses this definition:

“…any behavior that attempts to inflict uninvited force, harm, or damage to a person or inanimate object, or verbal behavior that is delivered in an intimidating manner (swearing, yelling, shouting, insults or threats).”

I’m glad to see that they included “inanimate object” in their definition. Why? Well, my late wife Janet and I used to have an album of wedding pictures – but no more.

In the HD world, a number of tools exist to help doctors and other professionals in identifying aggression in a clinical environment. Two of the most common are the:

  • Unified Huntington’s Disease Rating Scale (UHDRS)
  • The Problem Behavior Assessment for Huntington’s Disease (PBA-HD)

But clear winner of the prize for cool and suggestive acronym is:

  • Rating scale for AGgressive behavior in the Elderly (RAGE)

Over the years, Janet participated in several such evaluations. A big problem with these tools, however, is that they were typically administered while both of us were present. Consequently, there were times when I was left with the choice to either:

  1. Tell the truth and deal with 45 minutes of yelling on the ride home.
  2. Lie like a rug.

In the end, I did a bit of both. It would be nice if doctors, and especially medical students doing a neurology rotation, understood that asking a question like, “Has your spouse ever been physically violent?” while the spouse is sitting there is not a good thing…

Of course when Janet was going through her violent phase, I didn’t need forms and scorecards to understand that there was a problem. All I had to do was count the bruises and scratches on my body. This is from when she grabbed my right arm with her nails. You can clearly see the marks from 3 or 4 fingers and her thumb.

So if you are just starting out on your caregiving journey, or even if you’ve been on this path for a while, how do you even begin managing this kind of risk?

As with most things in life, forewarned is forearmed. The first thing, therefore, is to make sure that you are squared away between the ears by setting your expectations appropriately. To be clear, our goal is to prepare for the worst case scenario, but pray for the best case scenario (in which many of the preparations we make will never be needed). If this sounds like we are getting ready to go to war, well guess what… we pretty much are.

One of the blessings – and one of the dangers – is that the aggression doesn’t start all at once. Like that proverbial story about the frog in a pot of water, the “heat” sneaks up on you. They don’t just wake up one morning as a violent tyrant. Or if they do, it probably isn’t due to dementia, and is therefore treatable.

In contrast, dementia-related aggression starts slowly, with an illogical argument that isn’t particularly intense, and proceeds step by step from there. This progression means you have time to adjust and learn. But it also means that you can miss what is happening.

Perhaps this slow change is why our families can be among the last people to recognize that a problem exists. Sometimes it’s a matter of people having trouble letting go of remembered images of the past, and understanding the gravity of the situation. For example, it can be hard to get your head wrapped around the idea that “the sweet little boy” who used to sit on your lap and play, is slapping his mother around or threatening her with knives.

To be honest though, other times it’s a matter of willful ignorance. To avoid having to face either the unpleasant truth that a disease can be this horrific, or their own responsibility to take action, family members will sometimes jump to the conclusion that you must obviously be doing something to “provoke” the person. To make matters worse, even you can fall into the trap of thinking that everything must be at least partially your fault, because, you reason, nobody in their right mind would act like that unless they were being provoked. But therein lies the rub: they aren’t in their right mind.

Please be clear on this point: Nobody is perfect. So as a caregiver, you will make mistakes – I personally have made some doozies. The thing to remember is that saying you are never at fault, is as wrong as saying that you are always at fault. Falling into the trap of either extreme has dire effects on both your health and the quality of care you can provide your loved one.

Sounds easy to say, doesn’t it? The normal human condition is to be sucked into one of the extremes like an errant planet losing its identity in the gravitational abyss of a black hole. Although the emotional “black holes” that threaten us are metaphorical rather than astronomical, they aren’t any less real. In fact, in terms of our immediate experience, they are far more “real” than some anomaly of physics light years away.

So next week we will get into the immediate causes of the aggression, and how to deal with them. For now, avoid the traps by remembering that the truth in this case lies not in either/or (good vs bad) but in the realm of both/and: I am not as good as I should be, but I’m also not as bad as I could be. We are all – caregivers and care receivers alike – works in progress and so are all (in the words of the song) “Stumbling To Bethlehem”.

In Christ, Amen ☩

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A prayer for when you are just stumbling along…

“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 grace and love. But today I want to bless You especially for knowing me even when I’m not sure that I know myself. Thank You for not giving up on me. Thank You for keeping my feet on the path, even when the way is dark, and I can’t feel Your hand. Amen.”

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Being Successful

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 facelift.

This week Jean went through the past posts and identified one that she felt was one of her favorites. It originally ran July 12th of 2020, and was entitled What is Success? The post is notable to me for being the first post for which Jean left me a comment:

“Oh, I sure needed this today! I want to save it and come back frequently to remind myself of these things, even though this is my 2nd HD marathon.

“Thank you, Michael, for your wisdom and faith, and for sharing your thoughts so eloquently!”

At the time, she was caring for her daughter (Jennifer), after already having lost her husband several years before. For me, the comment documents the day that I first became aware that a person named Jean Barnes existed. But concerning the future… I had no idea…

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A past post talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success.

However, that assumption begs the question, “In the context of caring for someone with an illness where the patient always dies, what exactly does success mean?”

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. A foot race has a clearly defined beginning when the starting pistol goes off, a predetermined length, and a precise end when the runner breaks the tape at the finish line. In addition, a race often includes the promise of a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics

The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations, a point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire, focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams. You soon discover, through the film, that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and (despite the racial problems) his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality that he lived, Abrahams had very different reasons for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to taunt them and rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But the price was a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race, an approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure won’t be judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/love my spouse/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

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A prayer for when you are feeling spent…

“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 gifts that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank You for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen.”

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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.”