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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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… but what do I need?

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 is the beginning of Lent, so perhaps appropriately, it’s been a rough week. Early in the week, the perseveration was running wild. Tuesday she was calling me every 5 minutes at work, angrily demanding (in the same sentence) that I both save the marriage and give her a divorce. My boss noticed and was understanding when he called me in to talk about what was going on, I just sat in his office and cried. The result was that he let me work out of the house two days this week so I can be here with Janet. She seems much more at ease if she knows that I am in the house, even if I am upstairs working.

After our “meet and greet” at the Thai restaurant in downtown Boston, the first real date for Janet and I was at a family party. Janet had a niece that was born on Christmas Day so Janet invited me to go with her to the combination Christmas and Birthday party at her younger brother’s house. Shortly after we arrived, Janet got spirited off for some family matter so I was left standing uncomfortably alone in the middle of the living room. A short while later a tall, attractive blond lady that I later found out was Janet’s sister-in-law Marilyn came up to me.

“So you are Michael.” A statement. “Have you and Janet been dating long?”

“Uh no,” I replied, smiling nervously, “This is actually our first real date.”

Marilyn looked at me hard and said to no one in particular, “For a first date she brings him to a family gathering. My God! She’s brave!”

And with that she turned on her heel and walked away.

Y-e-a-h… Welcome to the family…

Sometimes what you read in this space is about what Janet and I have been through, and sometimes it’s about what I see online on the support forums – this one is a mixture of the two.

It seems like I have been seeing a lot of comments lately from folks that are feeling guilty, and the source of that guilt is very familiar. The post I saw that really sort of crystalized it for me was a woman whose husband had become unable to express himself romantically and she had two questions:

“Is this normal in HD, and am I selfish for still wanting things to be the way they were before?”

My answer was short and sweet:

“Yes it is, and no you’re not.”

The longer (more piquant) answer to her second question is that grieving the loss what you had is not, of itself, selfish. Becoming a caregiver doesn’t mean giving up your rights to have needs. Rather, even in the midst of the most trying of times, human needs still have a place. For example, consider one of the events that occurred while Jesus was hanging on the cross. He looked down and saw His mother with His disciple John. Even in the midst of what could be argued was the paramount point of all human history, He looked down and said to her, “Woman, behold your son.” and then to John, “Behold your mother.”

Devoid of any deep theological or philosophical meaning, the point of those statements was simple. A widow with no sons in that culture and time was in many ways essentially a non-person. She had no name, no standing in the community and no resources. We have to be careful here to not attribute to Mary too much spiritual insight. There is no evidence that she had understood the prophecies that Jesus made about His death and resurrection any better than the disciples did – remember she showed up at the tomb Easter morning expecting to find a dead body.

So you know she had to have been thinking about it. “My husband is dead, my son is dying, what will become of me?” Hence, even in the middle of “making all things new”, Jesus took time to deal with the very practical, very human need of His mother by making sure that she still had a place in the world.

Returning to the present for a moment, there would also be those who would say to caregivers, why are you worrying about your needs? Don’t you have faith in God? Real nice folks, eh? You are doing your best to hold things together and they give you the Christianized version of the “Just snap out of it, and cheer up!” speech. But again, being needy is no more a lack of faith than it was selfishness. Remember the shortest passage in the Bible: Jesus wept. More than anyone alive then or now, Jesus standing at the tomb of His friend Lazarus understood the situation, He knew where Lazarus was, and He knew that Lazarus truly was in a better place. But He also could see and feel the grief of Mary and Martha who, more than anything in this world, needed their brother back. So Jesus wept: for Mary, for Martha, and perhaps a bit for Lazarus too.

In our humanness we have needs, we miss things, we long for what was and what was good, and there is nothing wrong with that. The good news is that support and comfort is available, that is why God gave us each other. But for me, that doesn’t mean that these new resources for comfort and support replace what I had with Janet. In the first place, they aren’t sufficient to fill a void so large and in the second, I wouldn’t want them to anyway. Those are precious memories and feelings that I don’t want lost or replaced. At some time in the future after Janet dies I may or may not find someone else with whom to share life, but if I do, that relationship won’t simply be a replay or continuation of what Janet and I had. It will be something new and unique that God creates for us.

So although the support we can give to and receive from each other now has its limitations, it is nevertheless tremendously valuable, because what it can do is help me survive the pain and fear that I am experiencing right now.

The other thing to remember about the pain of neediness is that injuries take time to heal. This point is obvious when someone is cut, bruised or breaks an arm. Then people say, “Ok they are injured. They need to take it easy for a while.” Unfortunately, though, when the injury is to the person’s heart and spirit, the tune is very different. They expect the healing to be instantaneous. Just say a prayer and it’s all handled. Except that it’s not. Consequently, people are often reticent to open up about what they are experiencing for fear of being judged as “faithless”.

For myself, I’ve had to fight my way through these feelings in a very public way: I’ve been writing about them for the past three weeks and every Sunday morning people were expecting an update. During this time I have learned volumes about being steadfast by sorting out exactly what “loyalty” means. I have learned that living a spiritual life is anything but formulaic. I learned that at times truth and honesty can be risky, and that healing in itself can be a painful process. But the biggest thing I learned was that this process takes time. God doesn’t often snap His fingers and heal broken bones, or broken spirits.

But, even in my pain, I have faith because I learned a long time ago that in my life journey, nothing happens by accident. Instead God assures me that there is always a purpose behind what I am experiencing: growth. As a parent, God wants me (and indeed, all His children) to grow stronger and more capable over time, and so be as prepared for life as we can possibly be. However, sometimes gentle words and persuasion won’t get the job done. Sometimes the future ahead of us is going to be so hard that, to be prepared for it, we have to go through a kind of spiritual “boot camp” to toughen us up.

For me, a key part of that toughening up was when my Mom had a stroke while visiting family in Arkansas. An uncle had her admitted to the nearest hospital with a stroke unit – which it turns out was Mercy Hospital in Fort Smith. I drove up from Pearland and arrived the day before a major snow and ice storm that totally shutdown the city for about a week. While Mom was in the hospital, there were a lot more bad times than there were good. Mom was often hallucinating and one night over the course of an hour she mistook me for her father, my father, both of her brothers and a stranger that was trying to attack her.

From the time I walked in the door of the ICU, I was assumed by the doctors and nurses to be part of the care team, which in one sense was really great. Of course, it would have been even better if I had had some idea of what was going on and what needed to be done. As it was, what I went through was not unlike learning to be an infantryman while storming an enemy beach.

After a couple very long weeks where I literally lived at the hospital with Mom, they determined that she was stable enough to transport down to the Houston area. As I was driving back to make arrangements for her here in Pearland, I was totally exhausted. Then God interrupted my thoughts and told me, “Of course you know this is just Round 1”. After thinking about the statement for a moment, I understood. After Mom, Janet would come next. Janet would be the one suffering from dementia. Janet would be the one in pain. Janet would be the one confused about where she was. Janet would be the one frightened and angry. Janet would be Round 2.

And I’m now praying there is no Round 3 in this bout.

In Christ, Amen ☩

A prayer for when you are needy…

“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 all the ways in which You provide for all my needs. But today I want to bless You especially for even caring about my needs. You certainly would not have to, but in Your immeasurable love, You do. Please show me how to care for the needs of others as You care for mine. Amen”

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Prayers or Pills?

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.

In case you just found this blog, this week’s installment is a little different from usual because it’s a continuation of the chapter from last week. So if you haven’t seen that post, you should read it first by clicking here. (Don’t worry, we’ll just talk amongst ourselves until you get back.)

In addition to what we discussed last week, this part of our family’s story also raises a common point of conflict between faith and medical care: How do I choose to treat any given symptom? In essence: “Do I pray about this, or do I take a pill?”

For most people, the answer is pretty clear when considering physical conditions. However, when dealing with mental or psychological problems, the water can get more than a little murky. Before going any further, please understand that I am not a doctor. So do not take what I’m saying as medical advice without first discussing it with your doctor – or perhaps even a couple of doctors.

Now with that said, let’s consider a few of the issues that you should take into account when considering a medication – for you or your loved one.

1. Can a pill address the real problem?

The first thing to consider is whether the real problem can even be fixed with a pill at all. To be sure, there are many medical reasons for psychological symptoms such as depression or anxiety, and the pills that medical science has produced are very good at handling these conditions. The problem is, what happens if the symptoms aren’t the result of a medical problem? If the symptoms are instead rooted in a spiritual problem, the pills many suppress them for a while, but the symptoms will return as soon as the pills wear off.

To address this potential, pills should ideally be given in concert with counseling from someone who is qualified to help the patient identify whether a pill is really going to help what is fundamentally wrong.

2. Lack of Authenticity

To highlight how complex these situations can become, let’s now consider the other side of the coin: Janet’s case. She didn’t want to have a pill “make her” be happy. Her underlying concern is that the happiness wouldn’t be “real” because the medicine is simply covering up a problem – which, of course, technically it is. The difference is that the “real problem”, in this case, is an incurable disease. Therefore, the best we can hope for is to cover up a troublesome symptom.

The fancy medical term for this type of treatment is “palliative care”. Again, much prayer and counseling should be used to guide you in making the correct choice.

3. Duration

This point goes with the previous two. Unless there is an underlying medical condition, psychoactive medication, should not be considered a long-term solution. If an otherwise healthy person is on this type of medication for years at a time, that diagnosis is likely one that should be revisited, with a different doctor, if possible. As an example of what you want to avoid, it is unfortunately common for doctors at the VA (the US Veterans Administration) to have vets suffering from PTSD and other conditions on a veritable cocktail of psychoactive drugs for decades with no real improvement in their condition.

Given a reasonable amount of time, if a treatment isn’t working, starting exploring what alternatives might exist for the failed treatment. For example, a recent study presents some exciting results for treating psychiatric problems with exercise. Note that the referenced document is a medical research paper so slogging through it can be slow going, but it contains a lot a good information.

4. Follow up

No competent doctor will put someone on a medication without ensuring that there is adequate follow up. The goal of this follow up is to make sure that the medicine is working with no, or at least acceptable, side-effects. In addition, while some side-effects show up right away, others can take much longer to appear. Therefore, ongoing checking and rechecking is needed.

For example, at one point Janet was on a common epilepsy medication to help control her body movements. She took it without problems for over 4 years, then suddenly it stopped working and began causing problems of its own.

5. Qualifications

The medication that I am taking can be legally prescribed by anyone with an “M.D.” after their name. But that doesn’t mean that just any doctor should be prescribing it. With specialized drugs, your primary care physician may not have had the training needed to identify problematic reactions before they become major health concerns.

Don’t be afraid to ask your doctors about their experience with the drug they are wanting to give you or a loved one.

6. Staying Alert

Continuing with the idea of healthy scepticism, whenever a new medication is recommended, you need to look it up online yourself. You can’t trust even the best doctor to tell you everything that you might need to know.

Janet has been blessed with some really excellent doctors, but once she was prescribed a drug that would have had a potentially deadly interaction with a thyroid medication that she was taking. This situation has only come up once, but in this case, even once would have been too much.

Beyond these sorts of situations, a caregiver has another advantage over a medical professional, in that you know your loved one better than they do. Consequently, you stand a much better chance of identifying subtle changes in their behavior. Good doctors will recognize this fact, and be anxious to take advantage of your “expertise”.

7. Faithfull Confidence

Finally, there is another spiritual principle to consider. In his letter to the Romans, Paul discusses a couple issues for which there was no definitive right or wrong answer. The logical point he makes is that if you don’t in good-faith have confidence that the course you’re going to pursue is acceptable, but go ahead and do it anyway, your actions are essentially saying to God, “It may be wrong, but I don’t really care.”

So whether you take the medication, or don’t, you need to be fully convinced in your own mind.

In Christ, Amen ☩

A prayer for when you are starting a new medicine…

“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 all the ways that You take care of us, heal our wounds and comfort us in our sorrows. But today I especially want to bless You for the knowledge that You give to doctors, researchers and scientists. Their skills make the world in which we live safer by turning killer diseases such as scarlet fever, into mere nuisances. Please guide my doctor in selecting a medication, knowing that in the end only You can ultimately heal. Amen”