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Time for a Nursing Home? Now?

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

My husband was 14 years into his HD journey when I began to see the need for nursing care than I could not provide. I was working full time, and our teenage son was in high school. Every morning before leaving for work, I would prepare breakfast for my husband, Don, as well as a lunch that he could easily heat in the microwave or that was ready-to-eat cold. Don had been having occasional seizures, but they were suddenly increasing in frequency and becoming more severe. He dropped medicines, and spills or broken dishes were common. Falls were a part of everyday life. From the moment I got home from work until bedtime, I was cleaning, repairing, and preparing for the next day. My sleep at night was a very few hours of tossing and turning.

Finally, I knew it was time.

An opening in a wonderful nursing home became available close to my work location. The Director was a precious lady who helped make the transition much easier for us all. It is so important to develop a relationship with the front office when possible. You will need them, trust me! Don adjusted very well and especially loved Saturday and Sunday because I took him home on weekends.

Although going to visit every evening after work and taking him home on weekends was an improvement, it still wore me down and still led to exhaustion. Then about four months into his stay at this nursing home, I learned they would be closing it down in a month. I had to find another nursing home fast, and quickly located another one close by our home. From the very beginning, it was obvious it was not as caring a place as the first one.

At first I was encouraged to hear they had two other HD patients in this home, but soon realized they were banished with Don down what I came to call “the hallway to nowhere.” The staff’s attitude seemed to be out of sight, out of mind. The call lights were just a waste of electricity. Most of the patients on this hall were non-verbal and non-ambulatory, and as far as the staff were concerned, they were just occupying space.

During my husband’s two years at this home, he suffered two concussions and one broken wrist from falls, and many seizures due to medicine not being given on time or at all. Every evening I swept the floor in his room and every evening I swept up prescription medications that my husband had been prescribed but which were dropped by the nurse and forgotten.

Don had a little elderly friend who had moved to this home from the same nursing home we had first been in. They both had rooms on the same hall. Every morning the nurse’s aide would bring their wheelchairs out to the lobby area in front of the nursing desk. They would sit there all morning until it was time for lunch. One morning, as Don was sitting by his little friend, he noticed the man slump over to one side. Nursing staff and aides passed by their wheelchairs and no one stopped to check on him. Don said he was leaned over so far that he was afraid the little guy would fall out of the wheelchair. When lunchtime arrived several hours later, a nurse found that the little man had died.

I knew the man’s wife and felt so sad and angry that he had died essentially alone, no one noticing that he was even gone.

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As caregivers, we all have some common goals. We desire to see our loved one in a safe, comfortable environment where their needs are met with respect and dignity. We want our loved one to get the best possible care. And we want to see them happy and thriving.

These goals can be met in several possible ways but it takes a lot of preparation, prayer, and investigation to assess your loved one’s needs and find the best solution. This care can sometimes be provided at home or in the home of another relative. When this solution is practical, it is often less traumatic to everyone because the patient can continue to live in familiar surroundings, and family is there to do the caregiving. However, everyone needs to realize this commitment can be challenging physically, mentally, and emotionally.

Moreover, one person should not be expected to be on duty 24/7. From the beginning, there needs to be a schedule for respite for the main caregiver that allows other family members or friends to step in and provide the needed care.

In many situations though, especially with degenerative neurological conditions, the solution demands the involvement of professionals. Seemingly overnight, symptoms can escalate to requiring care in a nursing home. There our loved one can have the skilled care they need and deserve. It is OK to realize that the best care is not always at home.

How do we make these decisions? What are the signs that let us know a decision needs to be made? After all, you would think that a family would give the very best care since we love the patient most. But this situation isn’t just about love. It’s about satisfying a complex and ever-growing set of needs that sometimes require very specific sets of skills and knowledge.

When you decide that it is time for a nursing home, there is one more very hard question that you need to answer: How will you react if you find your loved one has been mistreated?

Probably the most important thing to remember when getting nursing care to come into your home, or placing your loved one in a nursing home, is the fact that your responsibility never ends. Your loved one still needs an advocate to speak up loud and clear when basic needs are not being met. In every care facility, there are wonderful nurses with hearts of gold. Unfortunately, there are also some lazy staff members who just do not care. But you do not have to settle for neglect – and should not under any circumstance!

Make sure your loved one doesn’t feel deserted. Visit as often as possible and drop in for visits at various times of the day so you can observe the staff and their interactions across all shifts. And if the circumstances require it, don’t be afraid to let your inner “Mama (or Daddy) Bear” come out.

Bring pictures so they can recognize items from home. Decorate so they can feel some good memories of childhood or of their children growing up. Make the room as cozy and home-like as possible.

One other small, but very important, thing you can remember to do for your loved one is giving them a loving touch and hug. The small act of putting hand lotion on their hands and arms is so soothing. If it makes our hands feel better to have nice lotion, imagine how relaxing that feels to them! If a child is there, let them help with this. Make some memories! I promise you won’t be sorry. I love this Bible verse from Jude 1:22, “…And of some have compassion, making a difference.”

Next week we will look further into how to be the best advocate for your loved one. We will discover ways to check on nursing homes or home health care companies to reveal those who have poor grades in your particular locale. Let’s be caregivers who show compassion – and make a difference!

In Christ, Amen ☩

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A prayer for when you are faced with making a hard decision…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being our Heavenly Father. But today I want to bless You especially for leading and guiding me when I come to You asking for Your help in making decisions. You are never too busy to hear my prayers and always listen when my heart is aching. Thank You for the peace and comfort You give me when You work in my life. Help me to let You always lead so those who You place in my care receive the compassion and service that they need. 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.”

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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.”

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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.”

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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.”

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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.”

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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.”