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Caregiving Beyond “Fear and Loathing”

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

If you would like to read our story from the beginning, you can start here: How We Got Here…

It is clear that death is drawing nearer. It would be nice if other things were equally clear. Dying is apparently a longer, more difficult process than I imagined. To be brutally honest, my main experience in watching people die has been via the medium of old westerns on TV or at the movies, where the process takes a maximum of about 30 seconds. True, my mother died a few years ago, but after standing by for 48 hours at her bedside, she waited until I went out for five minutes to get a sandwich, so all I got was a call from hospice that she was gone.

Old memories and attitudes continue to replay this week, though some are far from being “old friends” that have come to visit one last time. For example, this week Janet started to refuse her sublingual anxiety med because she said it made her constipated – and it does no good to remind her that she hasn’t had a bowel movement worthy of the name in several months, long before she started taking the sublingual meds. Her reply is always, “Well, I know my body!” – another very old tape that has been replaying a lot this week. I have often wondered how things might have been different if she had listened to her doctors, rather than fight them every step of the way. No doctor is perfect, but no doctor is 100% wrong, either.

We had to get her Foley catheter replaced because her original one was leaking. She has also become obsessed with the time. I bought her an “Alzheimer’s Clock” a couple months ago with letters big enough for her to read, but I suspect that she can no longer see things clearly that are more than a couple feet away.

This week we also decided to do Thanksgiving at home for the first time in several years. Typically we have gone out to keep things simple, but with Janet so ill, Frannie and I can’t be gone at the same time so I got a small bird and we are going to do it on our own again. In addition, we thought that Frannie’s boyfriend Leroy was going to eat with us, but his presence is required at his own family’s table – though he will be able to come by in the evening for pie and coffee. The end result is that we are going to have more turkey than we need for two, so if you are in southeastern Texas and alone, PM me and you can have Thanksgiving with us. Our place isn’t large but I think that we can fit in one or two more friends.

PS: If you like white meat, that is a “plus.” Frannie and I don’t.

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Maybe it’s the time of year, or maybe I am just becoming more sensitive due to where Janet is in the process of dying, but I seem to be seeing more posts expressing, as the title suggests, considerable “fear and loathing.” For example, fear of the future or the judgement of others, or self loathing rising from an unreasonable belief that you should do more, and complain less. The many other sources of these feelings are well known, so I won’t attempt to list them all here – besides you probably already in mind your own private list of triggers: that thing (or parade of things) that popped into your head as soon as you read the title.

This week I was conversing with a friend who has been amazing, caring for various members of her family for 40 years, yet she described being angry with herself for not doing more, and not being able to simply “snap out of it” when her latest loved one died. But it doesn’t take death to bring on the “fear and loathing.” I have seen the same issues come up when considering various care options for a loved one who is still alive. While the ”big one” is always the issue of whether it is time to consider a nursing home, it can also arise over issues such as needing to go to work, hiring an outside aide, preparing meals, or even asking for help from other family members.

And then there are the loathsome familial guilt-trippers. Like for example, the sister-in-law who lives two doors down and is constantly telling you what you should be doing to take care of your mother but refuses to lend a hand because, “She isn’t my Mom.”

The thing to remember when considering these issues is that there is a fundamental paradox involved. The people who logically have the least reason to feel these negative emotions (and guilt too, we can’t forget guilt!) often feel them the most strongly, while the people who have the most reason to feel them, rarely ever do. Why is that?

There may be many reasons, but a pattern I have observed over and over again is that good caregivers are never satisfied with the level of care they are providing. Consequently, they are constantly critiquing their own job performance and constantly finding it lacking. Combine this type of self judgement with the obvious fact that many caregivers are isolated from other human contact and you have the perfect setup for fear and loathing, with a heaping side dish of steaming guilt.

By contrast, we have what we shall call the good-enough caregiver. These people concentrate not on what the loved one needs, but what is good enough to be able to check all the right boxes. Just as the previous scenario is a recipe for fear and loathing, so this one typically ends in self-proclaimed absolution. “After all,” they reason, “what I’m doing may not be perfect, but it is good enough.”

But are those the only two options? Frankly, neither one is particularly appealing. For a little added insight, I once had a friend who was in AA. It was about this time of year and we were talking about how he gets through the holiday season sober, and his answer was telling. He said the way to get through it in one piece was to not get “too.” When I asked him what I meant he said, “You know: too happy, too sad, too depressed, too carefree, just don’t be ‘too’ anything. To stay out of the ditches, steer for the center of the road.”

So what does steering for the center of the road look like in caregiving? Well, the first step is make sure that we are making the most important thing, the Most Important Thing. Which is to say, making your loved one’s care the central focus of the exercise.

Next, make room for growth. We need to recognize that while constantly looking for ways to improve the quality of care is a good thing, that improvement is itself a journey, not a destination. Whether you are caring for your spouse as I am, or building automobiles like Toyota, the proper goal is not quality, but continually improving quality. So rather than beating yourself up for not as being as good as you will be tomorrow, acknowledge yourself for being better than you were yesterday.

Finally, we need to recognize that we do not have unlimited resources. While there are many things that we as caregivers can and do learn to do ourselves, there will often come a time when our loved one’s needs will out-strip what we can do, or learn how to do. When those situations arise, it is time to call in the people or services that can provide the needed care. In that case, your job as caregiver is to help identify, and set up the services that will provide what your loved one truly needs – which might require a bit of creativity.

For example, there was a situation where a daughter was worried for her parents, Her mother (84) had dementia and her primary caregiver was her father (86). It was absolutely clear to everyone in the family that Mom needed to be in a skilled nursing facility, but Dad wouldn’t hear of it. In his noble mind, it was his job to take care of his beloved, not work for some stranger. The solution: the family found a care facility that they could go into together and share a room. This arrangement gave him the dignity of continuing to fulfill his duty to care for the love of his life, while giving him the support and care that he was increasingly needing too.

So take heart, if you are worried about how good a job you are doing, you are already over the first and largest hurdle: You care and are dedicated to the best of care for your loved one. Now just steer for the center of the road.

In Christ, Amen ☩

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A prayer for when you are feeling guilty 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 the divine wisdom and care that gives the cosmos its form. But today I want to bless You especially for the reassurance and strength that You provide. Thank You for holding me up when I feel weak. Thank You for the gift of life that You have bestowed upon me, and that You allow me to share with { Name of your loved one }. Show me every day how to do the job better. Amen.”

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Building a Team

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

If you would like to read our story from the beginning, you can start here: How We Got Here…

The word for this week is “fading,” because that is what has been happening to Janet. Her speech is growing even softer and less distinct, and in general she is more withdrawn. On the other hand, there have been a few positives along the way. For example, she has agreed to start taking a medicine that the doctor prescribed several weeks ago, but then refused to take. (I mentioned it in an earlier post.) So far, she seems to be tolerating it well and it is definitely helping with her chorea.

Thanks to the new meds, she is sleeping more, and seems (finally) to understand that she can’t just get up and walk around the house whenever she wants. The other night she went to bed much earlier than normal. About 0 dark 30 I went down to get a drink of water and found her sitting on the toilet, unable to get up on her own. God only knows how long she had been there. She hadn’t used her walker, so she didn’t have her phone with her, and she couldn’t call for help. A large chunk of the problem is that the last time she fell she bruised a rib, and transitioning from one position to another is painful for her. In any case, I have a medical alert system ordered and I’m waiting for it to come in.

She is also craving human contact beyond just Frannie and me. Unfortunately, everyone is so anxious to “protect” her…

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It’s common for caregivers to feel like they are all alone, like a frontier explorer. However, the situation is seldom so bleak – or at least it doesn’t have to be. The other day I saw a post online:

I have read that, “It takes a village to raise a child.”
So I was wondering: Do they just show up, or is there somebody that I need to call?

In the same way, caring for a loved one suffering from dementia is definitely a “team sport.” Sometimes people just show up in your life and sometimes it takes a bit of team building. However, before we get into that topic too far, there is one more thing we need to consider: how “attractive” it can seem at times to be a lone wolf.

The truth is, sometimes people have a hard time letting go and asking for help. Although this condition may be more common among men, I have read stories of both husbands and wives resisting letting someone else do “their job.” One big place where this feeling can arise is when it becomes clear that the loved one they are caring for needs to make the move into a full time nursing facility. I have heard people say things like they feel they are “deserting” their spouse, or letting them down, or breaking a promise.

First, I would say to the caregivers that you are not deserting anyone, or letting them down, or breaking a promise to them – or for that matter, to God either. At some time or another, if your loved one lives long enough they will reach a point where you can no longer care for them. I’m so sorry, but that is just the truth. And when that point comes, your job will shift (but only slightly) from caring for them, to making sure that they have the care they need. One type of advocacy is as important as the other.

Second, if you are reading these words as the one who is being cared for, please start a conversation with your caregiver now, today. Let them know that you realize that someday you will reach a point where they can no longer care for you. Then together, figure out what they are to do when that time comes. Don’t forget to let them know that, whatever may come in the future and no matter what some “future version” of you may say, you trust them and believe in them. Unfortunately, Janet and I didn’t do that and it has made things so very much harder. Please. Learn from our mistake.

So back to team building…

I suppose the first thing to consider is what is a “team” anyway? Obviously, it is a group of people, but more to the point, a team is a group aligned on the same goal. But even more than that, the goal needs to be the right one. Once in a job interview, I was asked if I was a “team-player” and I said, “Depends. Is the team running towards the right set of goalposts?” While there is undoubtedly a lot of bad news in the world of chronic illness, there is one bit of good news: the goalposts are clearly marked.

At one end of the field is a set of goalposts bearing a beautiful banner emblazoned in gold with words proclaiming the intent to provide the best care possible physically, emotionally, and spiritually. At the other end of the field is a goal festooned with a bedraggled, dirty rag bearing a few scrawled words announcing the intent to do just the minimum to “get by.” If you are running towards the first goal, please keep reading, but if the second goal looks attractive, feel free to leave at any time. I am sure that upon reflection, you will see that you have already done far more than is absolutely needed. Of course there is that whole “Do unto others…” trope; as well as the very real possibility that you might, in your old age, fall into the clutches of someone who believes like you do now. But suit yourself…

Under ideal circumstances, the first group of people that we should always be able to count on is family. But we all know, or have heard, of situations where family didn’t always “come through.” In scripture we see hints that perhaps even Jesus had to deal with this issue. But the concept of family transcends mere biology or DNA. As we have talked about before, there is also the family that God creates for you out of whole cloth. These relationships can form anywhere communication is possible – even online. But if family is built on communication, someone needs to extend the first hand. In my family, they used to tell the story of a great-uncle of mine who if he saw someone on the street that struck him as a person he thought he might like to know, would walk up to them, stick out his hand and introduce himself saying, “The name’s Pennington, what’s yourn?”

The second source of team members is, obviously, where you worship. Whether you call your worship space a cathedral, church, temple, synagogue, shul or elementary school gymnasium, the people you find there are an invaluable resource. They may not be experts in the disease or condition you are battling, but can offer other things. Going back to Jesus and His disciples, we don’t really know a lot about them, but if Jesus followed the pattern of other itinerant rabbis of the time they would have been young. Peter was probably the oldest being married, so maybe 18, but the rest? Again, following tradition, most likely between 15 and 17 years old. Not exactly the group that you or I would pick to change the world. But nonetheless, they did it. In the same way, those whom God has called to be around you can help change your world too.

Finally, let’s consider the medical members of your team. For the most part, Janet and I have been extremely blessed. I have described Dr Cotugno in Pennsylvania (who figured out Janet’s diagnosis) as basically a bulldog in a white lab coat. He knew that it wasn’t just in her head, but that there was something wrong with Janet. But more to the point, he wasn’t prepared to rest until he found out what it was – that’s where the bulldog comes in. He was going to find out what was happening.

Then there was Dr Kostyk in Ohio. Knowing that we were “new” to the situation, she went far beyond simply examining and treating. She also spent a lot of time with us explaining and educating.

Finally, what can I say about the crew at the HDSA Center of Excellence at UT in Houston? Their attitude is that although Janet may be the only one carrying the gene, HD is nevertheless a family disease. I’ll never forget our intake appointment with Dr Erin Furr-Stimming. She sat with us for hours talking about everything. We discussed symptoms, family dynamics, medication, the future, everything. The thing they brought to the party was not just medical expertise, but also a lot of heart.

So there you have it. Hopefully by now you should see that there is a great team out there, and they’re waiting for you to find them.

In Christ, Amen ☩

PS: Just a quick note in closing. I have heard from a number of you that you would like to be able to get a compilation of my writing in book form. I am still working out the details, but God willing, that is going to happen this year. It will be available in soft- and hardcover, as well as an eBook. I’ll keep you posted.

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A prayer for when you need a team…

“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 lessons that you teach. But today I want to bless you especially for demonstrating the importance of teams – even Jesus had His disciples. So open my eyes to see the team that surrounds me, and open my heart to enthusiastically join teams that need me. Amen”

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Of Heroes and Hypocrites

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 bad. I don’t know how else to put it. Bad is bad. The latest brouhaha was over whether Frannie could go over and see one of her friends. Janet’s pronouncement? “No, you can’t go because you didn’t ask my permission!” Just to be clear, Frannie is 29 years old. At that point I stepped in and pointed out that Frannie is an adult and doesn’t need to “ask permission” anymore. Things went downhill from there. This came on top of a week that started with me taking Janet’s phone away from her twice to keep her from calling and haranguing Frannie. Then when Janet caught onto that, she started sitting on her phone to keep me from confiscating it. In the end, I had to tell Frannie to just turn off the ringer on her phone.

Then today, Frannie and her friend made arrangements for Frannie to spend one (1) night at the friend’s house. When Janet heard about it, she “forbid” Frannie to go. Frannie was crying, Janet was yelling over and over about all the issues that Frannie and I had already discussed and had solved, like: “Who will take care of your dog?” and “If you go over there, who knows what she’ll have for you to eat? You’ll get FAT!” In the end, I had to tell Frannie to just go upstairs and ignore her mother.

Whether it was right or not I don’t know, but after Frannie was gone, I told Janet as directly and as controlled as I could that Frannie does not need her permission. And that her opinions and advice on matters were no longer required or desired. I again tried to explain to her the degree to which her only daughter is terrified to be alone with her. Then I went upstairs myself and cried.

This is not how marriages are supposed to be.
This is not how families are supposed to be.
This is not how life is supposed to be … but here we are …

Semper Prorsum

If you’re wondering about the title of this post, let me put your mind to rest: I am not going to be talking politics or public health policies – though an alert reader may find corollaries to both. Rather, I will be talking, as I usually do, about how these apparently disparate topics bear on being a caregiver.

One of the earliest conversations I can recall concerning heroism was with my father. Career Army, he fought in both WWII and Korea, and tried to volunteer to go back in to “help out” during Vietnam (but that’s a story for another time). Being too young to understand either what I was asking, or his response, I once asked, “Daddy, were you a hero in the war? Did you get any medals?” He answered that no, he wasn’t a hero. And as far as medals go, “I told them, I killed all the damned people you wanted me to kill. Don’t expect me to feel better about it because you hang a chunk of metal around my neck.” The thing to remember is that my father didn’t regret a moment of his service to this country, he just fully understood the cost of freedom: some people live and some people die – on both sides.

In a parallel vein, I saw a press conference this past week where an Italian doctor was asked about the heroes saving lives in hospitals, sometimes at the cost of their own. In trying to give his answer, the doctor broke down in tears and just sobbed for several seconds. When he finally regained his composure, he managed to get out his answer: “In our hospitals there are no ‘heroes’ or ‘heroines.’ Behind the masks are just everyday men and women doing extraordinary things for their fellow human beings.” His point is, of course, that heroes are not some supernatural form of life, but rather just people who do their jobs regardless of the cost. I don’t know what hospital he was from, or what his name is, but that man is my brother.

The other thread of this post is about hypocrites. Now, you might not be aware of it, but the English word “hypocrite” is derived from the ancient Greek word for actor “hupokritēs.” Something I just learned recently was that what the word literally means is something to the effect of someone, “who performs behind a mask.” The reference is to the fact that in ancient Greece, actors in plays wore masks so the audience could immediately recognize the character they were playing. This idea, of course, melded in my “unique” brain with the doctor’s statement and got me wondering about masks in general.

For example, where do I – or for that matter any of us – get the masks that we wear? Is there a difference between masks that I acquire for myself, and masks that I am given? How do I take the masks off, and if I do, what will I find? What are the risks of going out without a mask? I will leave most of those questions for adventurous readers to dive into because, truth be told, a book could be written about each. Instead I want to look at how these related ideas of “Heroes” and “Hypocrites” relate to being a caregiver.

Someone on the outside of the situation, in essence looking in, sees a hero. They see someone battling adversity and terrible odds to snatch from death even a tiny bit of life. They see courage, faith and stamina. In short, they see the hero mask. However, the caregiver acting behind the mask, the hupokritēs if you will, has a different view. They see unending effort that is only occasionally successful. They see fear, uncertainty and, more often than not, exhaustion. To those behind the mask, there is no grandiose crusade to make things better, there is just survival.

One problem that can arise is when the one behind the mask hears the acknowledgements of those outside. The outsider’s visions of reality can be so fundamentally different that all the caregiver can see in themselves is hypocrisy and a profound lack of authenticity. Or to put it another way, they literally feel like they are just “playing a part” and if their life was somehow turned into a movie, they would show up in the credits as simply, “Caregiver 1.”

Of course the outsiders usually interpret a caregiver’s aversion to attention as modesty, and describe them as “self-deprecating” when in truth, we are just trying to avoid the pain and embarrassment that we believe will result when people discover who we really are. And by the way, this same dynamic can even apply when one caregiver looks in on another caregiver’s situation and decides that they are so much better than I am. While I’m a fraud, they really are heroic! And so it goes, each person seeing the next as being in some way fundamentally better than they are at handling the same rotten job at hand.

Predictably, the result of all this unhealthy self comparison is guilt – not unlike what I talked about all the way back in our conversation on “Righteous Guilt.” You can fall into thinking that if my loved one just had someone to care for them like      {Insert Name}    then they would be so much better off.

The truth, however, is that our placement here on earth is not an accident, so while there will always be room for improvement because none of us are not perfect, there is no room for guilt because God, who could have picked anyone for your job, knew that you were the perfect fit.

In Christ, Amen ☩

A prayer for when you are not feeling particularly heroic…

“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 lengths that You go to daily in order to support me. But today I want to bless you especially for picking me to perform the job that I am doing. Thank you basing Your choice on Your foreknowledge and not my track record. 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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Righteous Guilt…

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.

Resuming where we left off last week…

This whole time, our daughter Frannie (who has learning disabilities) has been living with us, and she and I are both taking medications to help us deal with what was going on. Janet, of course, isn’t taking anything because: a) she doesn’t like taking medicine and b) she fundamentally doesn’t trust doctors.

However, a shift occurred a few months ago when I had an appointment with the psychiatrist that was prescribing my meds, and who also treats Janet. After we talked about how things were going at home, the doctor told me that, for her own good, I needed to get Jan onto some medicine – even if it meant giving it to her without her knowledge. Before leaving the appointment, I told the doctor that I would think about the matter and get back to her.

One of the medicines that we had tried with some good affect, was Risperidone. Like nearly all medications that we had tried, Risperidone was not a drug specifically for Huntington’s Disease. Rather, it’s an atypical antipsychotic that is usually used to treat schizophrenia, bipolar disorder and the irritability associated with autism. However, doctors had found that for HD patients it often helped to even out their mood swings and aided them in getting to sleep. A big plus was that it is available as a clear, tasteless liquid that can be put into a variety of drinks and foods, whether hot or cold.

The only problem with the medication was that after taking it for a few day, Janet started complaining of headaches, so she had stopped taking it. But after considering for a couple days what the psychiatrist had said, I realized that the doctor was right: Janet needed something.

It was then that I remembered that we still had several weeks supply of Risperidone on hand from when Janet had tried taking it before. Checking the bottles I saw that the expiration date was December of the following year – the medicine was still good. So the next morning I put the dose that the doctor had previously prescribed (2 ml) into the iced tea that Janet drinks and watched for side effects: headaches or anything else.

After drinking the tea, Janet slept almost the whole day, but thankfully there was no sign of the headaches she had complained about before. But just as important, after the first day, the medicine continued to help her sleep, but it didn’t knock her out. The acid test, though, was whether her doctors would notice a change in her condition at her next HD clinic appointment, which was a couple weeks away.

The short answer is, yes they did! Not only did she do markedly better on the standardized tests that they always perform, but she filled out a form that they needed by herself and at one point even read a bit of a magazine while waiting. These last two items were particularly significant because the HD had severely impacted her ability to concentrate and to do simple things like read and write. It would be a massive understatement to say that the doctors were blown away by the positive change – but they couldn’t figure out what could have caused it.

After the appointment, and before we left, I got one of her doctors (the psychiatrist) to the side and told her what I had been doing. Janet’s medical team had a quick conference and the consensus was that since Janet’s mental state was so much better, I should continue administering the medicine. The doctor even gave me a new prescription. So for the past three months, I have snuck down to the kitchen every morning and put the medicine in her tea.

While the cognitive and emotional improvements are great, for me the nicest change is that when I say, “I Love You” she doesn’t get angry any more, and she even lets me kiss her. Win!

This part of our story raises two important questions, I’ll deal with the first one now and finish the conversation next week:

The medicine that I have started giving Janet is clearly helping her with a variety of emotional and cognitive symptoms, but at what cost for me? The doctors tell me I’m doing the right thing, the social workers confirm it and I can feel it myself intuitively. But somehow my heart seems to have missed the memo, and I felt rotten – especially since we had always made honesty and openness a hallmark of our relationship. After all the talking that I have done about authenticity, there is now a built-in inauthenticity at the very time, and in the very place where I wish I could be the most truthful and real.

To make matters worse, this is just one instance of a scenario where I am increasingly finding myself. Every day I have to deal with the fact that I, as her caregiver, effectively have two lives: the life that I live around friends, family and co-workers, and the simplified, dumbed-down, de-stressed version of that life that I present to Janet. To be clear, I didn’t get up one morning and simply decide to start withholding things from her. Rather, it started innocently enough with a “short private conversation” between me and her neurologist, and then proceeded by small steps as I took over greater responsibility for running the home, and tried to shield Janet from worry and harm. Unfortunately, there really is no alternative because, the simple truth is that she no longer has the coping skills to handle many of the things that are happening around her.

Having said all that, do I still feel guilty from time to time? Oh yeah…

One approach to dealing with the guilt would be to simply point to the improvements that she’s experiencing and decide that it is clearly the right thing to do because it is helping her. The problem with that answer is that it begins to sound an awful lot like, “The ends justify the means” – which is just wrong…

Instead, for me, a large chunk of the answer lies in recognizing that our relationship has changed, and that the HD has changed it. Over the past decade, it has subtly shifted from a spousal relationship between equals, to take on more of a patient/caregiver relationship that is decidedly unequal and preempts parts of the earlier relationship. However, this change doesn’t mean that I am allowed to care any less, or love her any differently. I have seen folks in situations like this justify having an affair, by saying that the person with whom they fell in love and married “…doesn’t exist anymore…”. Due to these mental and ethical gymnastics, they feel that they are therefore free to go find someone else to fill in the blanks for them emotionally and sexually. In fact, on forums dealing with issues like PTSD, this sort of story is dishearteningly common.

However, that sort of pathetic self-justification is never acceptable. As I have written recently on a veteran’s forum, what I signed up for in the marriage ceremony was very clear. There was no marriage contract with page after page of dense legalese, and our marriage license contained no “fine print”. In fact, the exact terms between Janet and I were stated very clearly in front of (as we used to say in the Air Force) God and everybody. So the only real question left for people in a similar situation is, “Are you going to keep your damned word?”

But even in situations where the original relationship was something other than between spouses, the change can be incredibly traumatic. For example, when a parent becomes symptomatic, a kind of inversion occurs where the child has to assume the role of parent to their own mother or father. A good case in point for this relationship change is Frannie. For her whole life, Mom was always the one that took care of her, now she has to be there to take care of her Mom.

The reason for all this discussion is to point out that the cause of the guilt lies in the fact that you can no longer abide by all the terms of the old relationship. For myself, it is clear that while I am still bound by the terms of our marriage vows, my new role of “caregiver” places demands on me that requires a new point of view on the relationship, and a certain amount of emotional detachment.

The part of me that is grieving the ongoing, incremental loss of the dearest friend that I have ever had, is wanting to cry nearly non-stop. However, the caregiver part of me realizes that if I did that, I wouldn’t be able to provide Janet care that she desperately needs. So, for practical reasons, the new relationship needs to overrule the grieving – at least for a while.

Consequently, there are times when, for Janet’s own good, I sometimes have to make decisions for her, and without her “informed consent”. Sometimes I have to try to shield her from troubling details of life. Sometimes I have to be “inauthentic” by putting a smile on my face when what I really feel like doing is collapsing to the floor in a puddle of tears. Sometimes I go to bed feeling guilty for being a “bad husband”.

Welcome to the “new normal”.

As I have said before, Huntington’s Disease existentially sucks…

In Christ, Amen ☩

A prayer for when you are feeling guilty…

“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 having created me as someone with whom you desire to have a relationship. But today I especially want to bless You also for giving me the ability to have relationships with those around me. But sometimes it hurts when those relationships have to change. Sometimes I feel guilty because I have to do things that the one I love might not understand. Please God, cleanse me from this guilt, guide all my actions to meet my loved one’s highest needs and remind me that, ultimately, you are the one in control. Amen”