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Which Way is Up? (Part 2)

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

This week has been hard. The new medication is helping a bit with Janet’s chorea and she is sleeping like a baby every night. However, other issues are continuing to worsen. The anger has been much more pronounced and she is very demanding in terms of what to do and the order in which to do it. Our daughter Frannie, understands that when Mom changes her mind and gets angry, that it is the HD. But on some level, she doesn’t care anymore. She just wants Mom to hear her and believe what she says. For myself, everything that I hear about on the news seems in a lot of ways be our home dynamic playing out on the world stage.

It occurred to me that maybe all the news readers have HD, or Alzheimer’s or something and that is why they can never get the stories right. But no, that’s crazy, right?

A long time ago (or at least what feels like a long time ago) my second post to this blog was titled, “Which Way is Up?”. That post was supposed to be about some of the disorienting changes that took place in our lives after Janet got her diagnosis. Although it started off that way, the post quickly developed a mind of its own and wandered off in another direction – which wasn’t necessarily a bad thing. It did, however, leave this topic unresolved and recently I have seen a lot of newbies on the support forums who are struggling with this transition. Consequently, I’m circling back to give a little more of a voice to this early time in our HD journey.

After Janet got her diagnosis, we moved back to Ohio pretty quickly so her first real HD appointment was going to the Center of Excellence at the University of Ohio Medical Center. During that first appointment we understandably had hundreds of questions about the disease and the sort of care that would be needed. So someone advised that a great way to get our questions answered would be to attend a local support group meeting, and we arranged to go to the next one. Unfortunately, no one spoke to us to prepare us for the meeting, or help us to set our expectations.

Their group at that time had a couple late-stage patients attending. Needless to say, we were totally unprepared for what we saw, and we went home terrified – each for our own reasons. At that time Janet’s major physical symptom was that her feet were twitching at night. She couldn’t imagine needing to be strapped into a wheelchair so her convulsions wouldn’t throw her out if it. For myself, I had no idea how to care for someone with that level of need.

When, a few years later, we had gathered enough courage to attend another meeting – this time in Texas – we were better prepared and understood things much better. First, we understood that everyone with HD is on their own journey. Some have extreme chorea, some have hardly any. Some slowly forget everything about their previous life and drift off into a kind of non-being, some become so emotionally disturbed that they must be committed to an asylum. Still many things are common for most, like anger or perseveration.

Which, by the way, brings up another good point. If you are a caregiver for someone with HD you will be learning a new language. I know your neurologist appears to speak the same language you do, but in fact they are speaking a specialized dialect called “doctor”. So you will be learning a lot of new words – like perseveration. Over the coming years, you will also be earning a minimal degree in nursing as you learn to deal with your loved one’s daily medical and personal care needs. And that’s to say nothing of all of what you will learn about how the medical systems in your country work, which it should be no surprise, is very different from the way the politicians tell us they work.

My advice? Get a notebook and keep notes of everything you hear and learn. There will be a test on it later.

During this time, I also learned the real meaning of the term “degenerative”. It means that often today, no matter how bad it may be, today may be the best day that Janet will have for the rest of her life. I also learned that “degenerative” can be a kind of perverse blessing in that as Janet slowly grew worse and worse, I had the time to grow up and grow into my new role. If you are the caregiver, there will be days when you want to give up and surrender or simply give in to the anger, depression and anxiety. While I could tell you to not give in because it doesn’t work, I won’t bother because everyone does from time to time – or they do until they learn for themselves that it doesn’t work.

So does anything help? Yes. Prayer (constant and unending), counselling (to help you learn), fellowship (to gain perspective) and medications (to get you through the rough patches) – these can all help.

The thing that has been the hardest for me to remember is that who Janet and I were 12 years ago, is gone. But as bad as it has been for me to watch what Janet has gone through, I can’t begin to imagine the horror of being her, and everyday feeling some piece of who you are, slip away through your fingers.

When Janet and I first got married, there were many things that I didn’t understand about Janet’s personality. However, Janet came from an abusive home environment so I thought that eventually Janet would come to learn that in this relationship, at least, she was valued and treasured. But that never happened. I learned instead about Huntington’s Disease, and I learned that her father wasn’t just abusive, he was sick. Finally, I learned that Janet had the same illness, and many of the same symptoms.

So, I guess, I have made peace with the way things are. Or at least I have made peace to the degree that peace is possible. How does one ever make peace with seeing the one you love disappearing before your very eyes, yet while their body continues to exist. I have heard that this process is called “Ambiguous Loss” because your loved one is gone, but then again, they aren’t. One of the things that I have consistently tried to express throughout this blog, is that there is no going back. Who you were and who they were, no longer exists.

Given all this doom and gloom, there are those around me who, like Job’s “friends”, seem to suggest that I should just curse God and die. In addition, there are those that claim that HD is unequivocal proof that God does not exist, or if He does exist he is in reality a demon. But I reject both arguments. I reject them because, as I’ve explained before in the blog, they start from faulty assumptions about the world. But just as important, while there are many dark places where I am traveling right now, there are also many bright spots. While some of those bright spots are the many wonderful programs and facilities that are available to support you and your loved one, for me though the brightest spots are always the people. On the support forums, God has gathered together many, many really good people. For example, there are people from the USA, the UK, Australia and Italy that I have never met face to face, but who, if it came right down to it, I would nevertheless trust with my life. In addition, the internet is global in scope so if you have a problem, someone is always awake, no matter what the local time is for you.

So there is my message for the newcomers: have faith, learn as much as you can, don’t stress over letting go of things that you can’t hang onto and, to quote the line from the play, Who’s Afraid of Virginia Woolf, “Fasten your seat belts. You’re in for a bumpy ride.”

In Christ, Amen ☩

A prayer for when you are new, confused and afraid…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your love and presence. But today I want to bless you especially for not abandoning the world that you created perfect, but which, today, has so many problems. Thank you for living among us as “Emmanuel”. Thank you for using me to help heal the brokenness in this world. Show me the way forward. Amen”

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Puppy Dogs and Unicorns

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

The big news this week is that I got a call from Houston Hospice that Janet is stronger and so no longer qualifies for their services! While that is good news, there appears to be a little confusion. I was called by Jan’s hospice nurse Friday morning and was told at that time that Jan no longer qualified. Then Friday afternoon the same nurse came by the house and not only failed to mention her status change (which the nurse told me on the phone she would) but went on to tell Janet that she was going to get evaluated for PT under hospice next week – what?

Beyond that, there is a new symptom that I don’t think I have mentioned. She has suddenly started needing to know exactly where I am every minute. For instance, if I go to get her something at the store she will call me once while I’m on my way, at least once while I am there, and again as I’m on my way home. Not sure what that is about, but it’s not worth stressing over.

I remember the very first time I saw Janet. It was at a restaurant called “Friendly’s” that was across from Symphony Hall in Boston. As I explained previously, we met through a newspaper ad that I ran, so I didn’t know what she looked like. Unfortunately, I have to admit that the first thing that ran through my mind when I saw her was, “Man, she’s short.” But she packed a lot into a small package. From Friendly’s, we walked to a Thai restaurant that was around the corner, to have dinner. There I learned that she had just recently left teaching due to layoffs. She had also traveled internationally, visiting England, Scotland, and France – and liked trying new things like Thai food. Before saying goodnight, I remember thinking, “Yeah, this one is special. I’ll be calling this one back. Definitely.”

The first thing I need to say this week, is that the title above is a bit of a red herring as this post has absolutely nothing to do with either puppy dogs or unicorns. Rather, the title is a bit of dark humor that I will explain later. In fact, one of the things that I enjoy most about writing is being able to draw connections between seemingly disparate things, and in so doing, expose larger patterns in the world. However, making the connections that I have in mind this week won’t require much imagination at all.

Lately there has been a lot of conversation about being a “warrior” – I even wrote about it myself a few weeks ago. The problem is that there are two sides to everything, and being a warrior is no exception. There are the strong, heroic images of warriors in armor battered and bruised, but victorious! We love seeing those kinds of pictures where we can imagine ourselves or a loved one in the heroic role.

But another side also exists that is not so pleasant to consider. In addition to the prize that goes to the victor, there is also the price that the warrior has to pay in order to gain the victory. In the real world, all-out battle can sometimes extract a heavy toll in the form of a physical injury or disability, while at other times the injury is emotional or psychological in nature.

Yes, being an HD caregiver can be dangerous.

“Wait, what? Caregivers? I thought you were
talking about military veterans!”

What I’m talking about is a condition called Post-Traumatic Stress Disorder, or PTSD, and to be honest, up until a few years ago PTSD was for the most part only considered in terms of either the military or first-responders like the police, firefighters and EMTs. However, recent research is showing that anyone can feel the effects of PTSD, from little children to grandparents, and one of the top sources of PTSD in the civilian population is being a caregiver for someone with a long-term debilitating illness like HD.

Unfortunately, this condition is something I know about. I was diagnosed with it about 4 years ago as a result of my military service and something else that I will talk about later. In terms of the military, I was in the United State Air Force and my last duty assignment was in the Strategic Air Command, or SAC, where I was Radio Maintenance, or RM, flying on what was called the Airborne Command Post. One of our EC135s was in the air 24/7/365 for more than 5 decades. At the same time, we had crews standing by on ground alert, but we all had the same mission: Wait for WWIII to start, and if it did, fight it regardless of cost. To be clear, I in no way regret my service. It was the dedication of military men and women on both sides of the “Iron Curtain” that kept WWIII from ever happening. Since you are here reading this, it’s clear that our mission was a success. But for me personally, there was a cost: an inability to sleep, a trashed marriage, depression, emotional and social isolation, accentuated startle response, and flashbacks when fire alarms went off unexpectedly.

The thing that saved me was when God brought Janet into my life. She helped me see beyond the old pain and start healing by making it safe for me. She was also one of the few people I have met who fully understood what I was doing in SAC. She used to call me her hero for helping to protect her. Unfortunately, Janet is now dying of HD, and the stress is slowly bringing back the old symptoms – and a few new ones to boot. Recently, a fellow wrote on one of the HD support forums about the changes that his wife had started going through. I told him that, “…being a caregiver feels at times like you are literally living in a war zone.” Some days it takes an act of God for me to get to work and stay connected to the world around me.

But what is PTSD actually and what are the major symptoms? To answer that questions, you remember seeing this list online anywhere? This is PTSD symptoms in a nutshell.

For a more formal evaluation, I have also found an excellent website by the Anxiety and Depression Association of America, or the ADAA. This link is to the section specifically on PTSD. In addition to the quality of information, the other thing I like about this site is that it (like this blog) has a menu that allows you to select the language in which to display the contents, from Afrikaans to Zulu.

To help you gain insight into either your own condition or the condition of a loved one, there is an online evaluation you can take. Unlike other online tests I have seen, the result of filling out the form isn’t an answer, but rather an opportunity to print out your answers with a recommendation to see a doctor and share the results. In other words, you are pushed to get evaluated by a doctor, which is the responsible thing to do.

Unfortunately, that simple step can be the hardest. A friend from the UK recently told me that the waiting list for obtaining psychiatric therapy with the NHS was 2 years and even when you do get to see a doctor, according to my friend, “…they just want you to pop pills, it’s cheaper.” However, while pills may help you through a crisis, they are not a long-term solution, and what we need is a solution not for the next few hours or even the next month or so. We need a solution for the rest of our lives because the trauma that causes our PTSD doesn’t get better or go away. Like all our experiences, the trauma becomes part of who we are.

So if we can’t depend on “the system” to take care of us and our PTSD, what can we do? The option we have left is self-care, which obviously starts with awareness. Of all the posts I have read on the HD, Parkinson’s, and Alzheimer’s support groups I have yet to see even one that talks about PTSD and identifies it correctly. As caregivers we need to educate ourselves on this condition and be sharing with one another what we have learned. We need to be talking about it and sharing our stories of success and failure. We need to own what is going on inside our heads because if we don’t, it will own us.

The other thing we need to do is set reasonable expectations. There will be days when we are doing well, and there will be days when the old dragon will unexpectedly awaken, and we will have to respond – like a couple months ago when my sister was getting ready to welcome her 18th grandbaby, a boy. The other source of trauma that I didn’t mention earlier was that my second wife and I lost our first child, a boy, when he was three days old. In short, when I heard that my niece had gone into labor, my mind went into a tailspin and all I could hear was the beeping of the fetal monitor and the doctor saying over and over again, “The baby’s in trouble… heart rate is dropping… heart rate is dropping… heart rate is dropping…”

Physically, I was sitting at my desk at work, but mentally and emotionally I was in that delivery room 40 years ago. I was totally blindsided by something that I thought I had resolved decades ago. But the fact of the matter is that no one can ever say I used to have PTSD. The dragon may be asleep or quiet for a time, but it is never gone. No matter how “resolved” you think things are, there will be times when it will stretch out its serpentine neck and try to push you to the limit. We need to always be ready to counter those attacks using the same weapons of grace and faith that got us through the original trauma – especially if you don’t think it was grace that got you through originally.

So for me, reading the forums and answering questions is hard, and writing this blog can be very hard – but I soldier on because I know that each obstacle surmounted strengthens my faith, makes my vision clearer, and enlarges my heart. In fact, that is where the title of this post came from. The other day I was talking with someone about this post and I cried out at one point, “God, why can’t I just once write about puppy dogs and unicorns?” Giving this post that title is basically my military sense of humor kicking in to say to PTSD: you may always be part of me, but you are not me, screw you. (I’m no John Howard, but it works for me…)

In Christ, Amen ☩

A prayer for when your past comes calling unbidden…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the ways that you make all things new. But today I want to bless you especially for this thorn in my flesh. Thank you for using my past to make me stronger. Sometimes it hurts so much that I would rather hide away, but you have shown me again and again that when I am at my weakest, you are at your strongest. Thank you for not letting my life be ruled by random chance. Thank you for giving me the experience, skill and wisdom that will make me useful to you. Show me how to reach out to others despite my wounds. Amen”

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Who me, an Advocate?

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

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, which if you haven’t read it yet, can be found here. The point of the conversation was the prayer. Margie was curious about whether I intended it to be purely personal, or would it apply to everyone.

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 that 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 that 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 of 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 that 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. So I would assume that we are in agreement that the life of a caregiver largely sucks. 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, 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, but he repeated 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 or 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 Christ” there is a powerful moment when Jesus, beaten and abused, embraced His cross with quivering hands as though it were the most precious possession He had 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 this midst of this broken, fallen world, God can create for us a holy place where truly, it is all good…

In Christ, Amen ☩

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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Reaching Further Out, #2

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

I had not originally planned to have a follow-up for last Sunday’s regular post, but earlier this week I read something online that changed my plans. What I saw was a Facebook post from Corrie Harris on an HD support forum. It was so good and to-the-point that I knew I had to give her words broader exposure. So here they are. I have touched up the formatting a bit, and fixed a couple misspelled words, but the heart, love and message are all Corrie’s:

In Christ, Amen ☩

01/04/2020 00:40

So, I have been contemplating whether or not to type this out and hit the send button — or just not post and continue to suck it up.

There is a scripture that says, “…Rejoice with those who rejoice and weep with those who weep…” I don’t know how many years I’ve been on the Huntington’s support group pages and have known each of you, but I have known a few of you for over 5 years, all online. We get close because we are all going through similar things. You were and still are my ONLY support. My only cheerleaders. The only place I go when I want to vent or rejoice. Until about 18 months ago, most of my time online was spent either in questions, research, agony, complaining, or being stressed out of my mind by my husband Richard’s HD symptoms and new-found personality.

Many of you have been there for me and I will always appreciate each one of you for that. Your presence reassured me that I was not alone in my pain. But now, with thanks to God, a better HD team, better meds for Richard, and an absolute change in my own attitude and heart, that season has melded into a new one. I see my husband, and the marriage covenant in general, differently. Things are now in the “happy” and “going good” zone, but I still feel a little alone here in my JOY.

I think it has bothered me for a while, but I couldn’t put the exact words to the emotions I was feeling — now I think I understand. I realize that reading a post saying, “I’m having a good day.” can be hard to read when things are falling apart in your own life. I know how hard that can be because I have been on the other end of that relationship!

But, I now realize that the JOY and the good times, days and moments are equally as important to share, so we can rejoice with and encourage each other. Frankly, too many caregivers suffer alone and die early deaths because in the end they are undone by the disease they are fighting. Without encouragement, the tragedy, heartache, anger and pain of this disease sucks the life out of us.

A spirit of complaining and drudgery does NOT help any of us. In fact, it kills us, and it kills our families. It makes it such that our children never want to come home for the holidays or even to visit. I have not handled all of these things well in the past, so I guess more than anything I am just wanting to say that we need to celebrate each other as much as possible, and to not forget that laughter and joy is excellent medicine. Love is a healer and hope gives LIFE.

I have avoided this group for a bit because (as I said before) I was feeling isolated due to how well things were going. But now I’m back and I’m putting out these honest thoughts in hopes that I can help to build an authentic community that is healthy and helps to produce life-giving and long-lasting friendships. This disease is brutal and we all need friends, especially friends that understand.

By the way, I celebrated our 32nd wedding anniversary today by posting the news on Facebook. Richard saw the post and liked it, but there was no other response. I haven’t had a gift, a card or even a real hug in nearly 5 years. Richard can no longer provide those things, and that breaks my heart. For many years I was selfish and angry and could not see the difference between the HD and him, but now I do. Lord, have mercy on me for when I didn’t! Richard would love me back if he could. I know it.

Corina

A prayer for when you are having a moment of clarity…

“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 clarity that you bring to my life. But today, I want to especially bless you for the clarity of understanding that I now have, as fleeting as it may be. In scripture, you told Abraham and his descendants to set up monuments or institute holy days so they will remember Your goodness and blessings. Lord, please be a living monument in my heart. Never let me forget the lessons that I have learned, or the perspective on life that you have brought me. Amen”