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Denial as a Way of Life

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…

Another week past. Another week of watchfulness and (hyper) attentiveness. Another week of waiting for the “train to arrive.”

In the past, I have talked about how having a loved one with a terminal disease is like standing with them on a railroad track and watching the headlight of a train getting closer and closer. Well, to carry the metaphor further, the crossing guard arms are now down, the warning bells are dinging, and the train is blowing its horn.

This week we weighed Janet, and she is down another pound to an even 90 (or a bit under 41 kg). She is eating some, but not enough to maintain her weight – let alone gain any back. The “solution,” of course, is a feeding tube, or peg. However, Janet decided against that option years ago, and has that choice documented in her living will – along with a DNR (Do Not Resuscitate) order.

There have been those, even in our own family, who have asked how I could “allow” that. Now there is a funny word to use in relation to Janet: allow. She has spent her entire life as an independent person doing what she believes is right, and there is every reason to believe that she will die the same way – doing what she believes is right.

But more to the point, even if I were so inclined as to override her long-held wishes (which, by the way, I am not) what would be my logical argument, my justification? There is none.

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Once I was attending a caregivers conference and I asked how to help our son recognize the seriousness of his mother’s condition. I remember the session leader say,

“So he is in denial?”

To which I replied,

“Like a Pharaoh… ”

– a word play that I guess works better with an American southern accent where “denial” and “da Nile” are pronounced essentially the same.

When you start researching the topic of denial, the first thing you discover is that there is considerable disagreement, even among professionals, about the meaning, importance, and usefulness of denial.

For example, some point out that it is one of the first stages of grief and loss, and so has to be worked through on our way to the final goal of acceptance. Others see denial as a coping mechanism, a form of emotional hysteresis that helps people deal with things that are changing “too fast.” While still others see the term itself as being a way of judgmentally shaming a person into complying with our wishes.

And then there are the related issues, such as when denial takes the form of turning an inherited genetic disease into a “family secret.” But even here we hear people bloviating about “pros and cons” – though frankly I am still trying to find even one “pro.”

Finally, denial is also a lens through which you could view much of what I have written in the past 7 or 8 months. While my intent was to write about grieving, it is equally true that many of those early themes were also about coming to grips with reality and refusing to deny that things had fundamentally changed. To see what I mean, start with this link and, if you haven’t done it before, read all of our story.

From here, there are literally dozens of different directions that this conversation could take, but for now at least, I’ll concentrate on two that I see as being particularly significant for both caregivers and the ones that they are caring for:

Acceptance
The problem with acceptance is that many people think that they have come to accept the reality of what is happening in their lives, but are still living very much in denial. You see, acceptance isn’t just a mental exercise of intellectually recognizing that a given disease will be fatal – someday. It means accepting the reality of the negative consequences today – including those that seem too great to bear.

To begin with, accepting an unpleasant medical diagnosis can also mean admitting a weakness: a potentially bitter pill for someone who has prided themself on their independence and self reliance. Acceptance can also mean facing up to some big fears and scary symptoms.

For example, the list is long of HD patients who have been denigrated for apparent drunkenness, including Janet’s older brother John, who was accused of coming to his daughter’s wedding drunk. But luckily for him, Janet decided to not make her diagnosis a “Family Secret” (see below).

Moreover, many have an almost primal fear of people who are acting strangely or erratically – or of being someone who is acting strangely or erratically. In the same way, many people feel uncomfortable and even threatened by people that they can’t communicate with – whether due to disease or difference in language. We often have images in our mind of what “they” are like, and don’t want to be seen as being one of “them.”

Finally, there is the matter of “burdening” our loved ones. If you are ill, you likely do not want to think about your loved ones dealing with your decline and death.

Consequently, for all of these reasons – and more – we try to think of ways to hide what is going on. Unfortunately, hiding doesn’t work very well:

Hiding From Reality
The thing to remember when entering into this sort of conversation (either with yourself or someone else) is that there are no quick fixes, but rather a potentially long process digging through the layers of an emotional onion, or if you prefer, a parfait.

Family Secrets
While I will be discussing this matter in the context of chronic diseases – especially those for which either the disease, or the predisposition to contract the disease is hereditary – the following discussion would apply equally to any situation in which an individual or family decides to keep secrets including, but not limited to, sexual abuse, addiction, divorce, infidelity – even adoption.

For more information, try searching online for: “Why do families keep secrets?” What you will find will be enlightening, and occasionally disturbing.

As mentioned above, one of the first things that the “professionals” will tell you about family secrets is that we need to balance the pros and cons of keeping the secret. The problem is that while being open about the challenges that your family is facing may be uncomfortable or even painful, choosing to hide what is going on is truly toxic.

For example, my ex-wife and her new husband decided to attend a church that would not have welcomed them had the church known that she was divorced. To solve the “problem” imposed by the existence of the two children I had fathered, they simply changed the kids’ last names (for the sake of the church) to match their step-father’s. While this might have seemed like an easy solution to a problem, consider for a moment the day-to-day impact that it had on their family life.

Even leaving to one side the basic question of why anyone would want to belong to such an organization in the first place, there were many other ramifications to this one little secret. They couldn’t invite friends from church to school plays or sporting events because the friends might hear the kids being referred to by the “wrong” names. For the same reason, they also had to keep “church friends” separate from all their other acquaintances.

Likewise, when making prayer requests, or seeking counseling on even unrelated matters, they had to worry about whether they are saying too much or whether the request would give away the secret. And imagine the emotional burden of having to watch every word that came out of your mouth to make sure your story stayed consistent – and all that for the comparatively simple secret of a changed last name.

(By the way, in case you are curious, the secret was not kept successfully – my bad – and they were told to leave the church by the pastor.)

Now try to imagine what it is like to try and hide something like a chronic disease. While researching this post, I found this link from a few years ago about the stress of hiding Parkinson’s Disease.

While I understand that people have a variety of reasons for keeping quiet, I also understand that trying to hide the inevitable is the very definition of a quixotic quest. Additionally, when people do find out, you will still have to deal with all the same reactions – plus more. The two most common reactions are anger and disappointment.

  • “Why didn’t you tell me? I thought we were friends!”
  • “If I had known, I could have done more!”
  • etc.
  • etc.
  • etc.

I also understand the desire for privacy. In fact, as it applies to medical matters, the principle of privacy is (theoretically at least) enshrined in federal law here in the US. According to that law, we “own” our health status, and have the right to decide who else knows about it. But ethically, what happens to the right of privacy when the disease is a family matter? To make things very concrete, if Janet had been more “private,” her brother John might have gone to his grave A) not knowing he was sick, and B) with people thinking he was a drunk.

Still we need to acknowledge that having people know your secret is no guarantee of smooth sailing. There are always the twin problems of Stigma and Shame – which are really the same problem. The only difference between the two is who is doing the judging: Stigma is being judged by someone else and being found wanting. Shame is exactly the same thing except the judge is you.

Unfortunately, even in the 21st century, there are still way too many people who view chronic disease and other misfortunes in life in terms of whose “fault” it is. The people are still with us who asked Jesus why a man was blind, “…did he sin or was it one of his parents?” But in the final analysis, what difference does it really make? We should not stigmatize others, nor should we shame ourselves.

In Christ, Amen ☩

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A prayer for when you are in denial…

“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 certainty that You offer. But today I want to bless you especially for standing by me when I am in denial about the direction that life is taking me. Give me the courage to face the future without flinching. Amen”

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Nursing Home? Now?

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…

This week I’m continued to work downstairs so I could be near Janet. Things are going well except that Janet has an open sore on her bum. The nurse said it’s not a bed sore and they have given us some cream to put on it that is supposed to help it heal.

The other night, Janet called me and told me that she needed help getting into bed, and turning off the TV. She also had a tablespoon that she needed me to put in the dishwasher. Not a problem except that:

  1. She was already in bed.
  2. The TV was off and the room was dark.
  3. There was no spoon.

She may have been dreaming, or this may be something new – only time will tell. Perhaps it is related to something else that I have noticed: some time ago, Janet started losing track of what day it was. She has just started having trouble distinguishing day from night. The other afternoon I was finishing up my work for the day and Janet asked me what time it was. When I told her that it was 5 o’clock, she looked at me strangely and asked me what was the matter, couldn’t I sleep? Although I had been sitting next to her all day working, she thought it was 5 in the morning.

This week, I spoke with a family member of Janet’s who related all the people who (decades ago) might have had HD but were either diagnosed with something else, or simply passed off as unpleasant people that you didn’t contact unless you absolutely, positively had to. She spoke passionately about how bizarre it is that people have this disease in their family and they don’t want to talk about it. I had to tell her that I didn’t understand it either.

For me, the whole conversation really drove home two points: First, if we are open to the change, we can derive from our caregiving experiences a perspective that fundamentally alters the ways in which we interact with others. Maybe that guy who cut you off in traffic wasn’t a “jerk.” Maybe he is carrying around a pain that he can’t begin to express and you can’t begin to imagine. Second, what a blessing it is to have a definitive test for HD! As hard as it has been dealing with this disease, I can’t imagine going through this and not being sure what it is that we are fighting – but until 1993 that was exactly the situation we were in.

Bottom line is that I believe we owe a tremendous debt not only to the doctors, but also to those families in Venezuela who suffered in silence from the disease and the associated social stigma for generations. In the end, the thing that made the discovery of HD’s genetic markers possible was the unique circumstance that everyone in the region around Lake Maracaibo that had HD all shared one common ancestor from the 1800’s – who, by the way, has today an estimated 20,000 descendants who are at risk.

Thanks to Dr Huntington, we have a description of the disease and a name. Thanks to the people around Lake Maracaibo, Venezuela, we know what causes the disease that Dr Huntington identified. Thanks to the ongoing research in many countries, the cause identified in Venezuela has led to the testing of several potential treatments – a couple of which are showing great promise. The fact is, all these points in time are nodes on a golden thread that someday will end, not with just treatments for this disease, but with its eradication. Someday, someone will say, “I am the world’s first HD survivor.” and then in an even more distant time, “I was the last case of HD on earth…”

Consequently, no node along that thread is more important than another because if you take any one of them away, the thread breaks and we are left in a world of pain, superstition and uncertainty. So while the future may still be murky, we at least know what we are up against – and that’s not nuthin’.

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This week we are going to consider one of the common questions in the support forums – whether it is explicitly stated or not. This question appears in post after post written by caregivers who are at the ends of their figurative ropes. While the words of these messages might take the form of “rants,” the subtext lying just below the surface is often a very simple question:

How do I know when I’m in over my head?

Which, let’s be honest, is just a gentler of the way of asking the question that everyone is afraid to ask, and the “professionals” are apparently afraid to answer:

Is it time for my loved one to go to a nursing home?

I know that during the time that I have been caring for Janet, I have asked that question repeatedly of doctors, social workers and counselors. Unfortunately, the closest I ever got to an answer was,

“I don’t know, but families typically wait too long…”

So I did what people do these days to learn things: I tried looking online. However, even there I found little useful information because everyone seems more interested in telling me where to put Janet, than in telling me how to determine if she even needed to be in one.

What I have found is that a large part of the upset that people feel about putting someone in a care facility can be self-induced, because the caregiver failed to evaluate three big questions:

1. What is your loved one’s current situation?
This is a big one and potentially confusing, as well. The point here is you need to know and understand, as dispassionately as possible, your loved one’s strengths and weaknesses. However, while your opinions may play a role, in and of themselves, they aren’t enough. Your loved one’s abilities need to be measured, and that is where ADLs come in to play. The acronym stands for Activities of Daily Living, which is a term used in healthcare to refer to people’s daily self-care activities.

Common ADLs include the ability to feed oneself, bathing, dressing, grooming, work, homemaking, and toileting – all pretty basic stuff. Another ADL that requires a bit of explanation is functional mobility, often referred to as “transferring,” it is a measure of the person’s ability to walk, and to get in and out of a bed or chair. Don’t be anxious to rush past this one. Too many caregiving experiences come to a tragic, premature end as the result of a fall and a broken bone.

Now the tricky part of this sort of evaluation is that these measures are not simply black or white. Rather, the evaluation is all about analyzing the shades of gray! However, over the years, the medical profession has developed a number of tools for formally assessing your loved one. Common ones include the Katz ADL scale, the Older Americans Resources and Services (OARS) ADL/IADL scale, the Lawton IADL scale and the Bristol Activities of Daily Living Scale.

Normally, these evaluations are performed by trained personnel one-on-one with the patient, but you may be invited to assist in the evaluation – especially if your loved one has trouble with verbal communications. But if you are so called upon, remember that unless you are specifically addressed, your job is to help them communicate what they want to say. Of course, if they say something that is unequivocally false, by all means point it out, but don’t put words in their mouths.

Also think about current living conditions. Are they at home alone or are they living with you or another caregiver – such as an equally infirm spouse? Are they open to change? What sorts of changes will they likely accept? My mother, for instance, was absolutely insistent that she never become, “… a burden to my children.”

2. What is best for your loved one?
Clearly, this is a complicated question. The complication arises because the clause, “What is best…” implies a concern for their needs, but which needs? There are many categories that we could insert here, but to get a just a taste of what we are confronting, consider for a moment how overloaded a term the word “health” is. Everyone wants to be “healthy,” but nobody has a definitive meaning for the word or even a complete list of all the possible subcategories (mental health, physical health, spiritual health, financial health, etc.).

Next, what happens when the needs raised by one category are in conflict with the needs of another category? For example, in a mad rush to save peoples’ physical lives from a virus, we sometimes find ourselves killing them emotionally and spiritually. At one point, not long ago, the word “holistic” was being bandied about frequently in terms of healthcare, but no longer. Only the truly brave should take the time to contemplate what that fact says about us as a people.

Finally, in addition to needing to do a lot better job at prioritizing a person’s needs, we also need to think about interpersonal needs – such as when one or more of their needs is in conflict with a need of ours.

After my mother had her last stroke, she was left without the ability to speak, but made it clear that she didn’t want additional care: she didn’t want food or water, it was time for her to go. My son was visiting with us at the time and he participated in the conversation with the doctor where the decision was made to move her into hospice. At the end of the conversation, I asked him how he felt, and he gave a raw, honest answer. He simply said, “Selfish.”

Her need was to go on to what was next for her. His need was to not lose his grandma.

And unfortunately, that is where I’m going to have to leave this question. I don’t have any answers to give. But maybe that is the point. Maybe this question is one for which there is no “final” answer. Maybe this is a question that you must hold open and wrestle with every day.

3. What resources do you have at your disposal?
When people typically use the word “resources” today, it is most commonly used as a euphemism for “money,” and while the financial resources you have at your disposal are important, they are by no means the only resource of importance. As unhappy as this fact makes certain types of people, there are problems that can’t be fixed by “throwing money at them.” Still, there are things that money can buy to help keep a loved one out of a nursing home. For example, I have commented in the past about the interior security cameras that I installed to help me keep an eye on Janet – they weren’t inexpensive, but compared to a nursing home, they were a bargain.

My recommendation is to be systematic in analyzing all the resources that you have at your disposal. For example, you may have significant familial resources. Our situation is a good example of that. I don’t know if Frannie understands the positive contribution that she has made to her mother’s life, but she is amazing. Our son has also provided comfort and support, and an unending string of milestones that motivated Janet to keep going: graduation from college, military commissioning, marriage, children, and most recently his promotion to Major. In a broader context, even my children from my previous marriages have been there for her with prayers and advice.

In the same way, take some time to analyze the social, religious, governmental resources.

In terms of social networks, I have heard that there is no easier way to identify who your real friends are than to simply start honestly answering the question, “How are you doing?” But candid answers to that question can do more than simply weed out the smiling faces that really aren’t interested, they can also serve to attract people to you that are interested and concerned.

In this drive towards emotional honesty, don’t leave out honest conversations with your pastor, minister, priest, or rabbi. Likewise, if your loved one belongs to a different church (or faith) contact their clergy, as well. And be diligent to educate yourself about spiritual practices that might be supportive to them. For example, if your loved one attends a liturgical church (basically Catholic, Orthodox, Lutheran or Episcopalian) they may draw strength from Eucharistic visits by a member of the clergy, or a specially commissioned lay person called a Eucharistic Minister. Such visits are a time for conversation and prayer, but also an opportunity to receive Communion or the Eucharist. Last week I talked about how much such a visit meant to Janet. Just let them know ahead of time if there are any dietary restrictions – like no alcohol or gluten intolerance.

Finally, in terms of government (or quasi-governmental) support, many jurisdictions are trying to make it easier to get help. For example, in Texas, calling 211 puts you in contact with either an automated system or a human counselor that will help you identify your needs and the resources that might be available to meet those needs.

While you consider those questions (and others that you may discover on your own), I want to again point out how fast situations can change. For example, your loved one might be fine one day and but thanks to an injury or an acute medical condition that suddenly arises, they might need a short-notice placement in a nursing home or long-term care facility.

The thing to do is plan for contingencies. Be looking at places before you need them, and have your options narrowed down to a short list of two or three places that you would be happy with if a critical need should suddenly arise. Also be thinking about potential legal issues, and remember that elder law is a specialty (in the US at least) so have in your “back pocket” the name or names of lawyers in your area that have good reputations and are skilled in this aspect of the law, should the need arise.

Above all, make sure you have a medical POA (Power of Attorney) in place. This critical document must be executed while your loved one is still mentally competent to make decisions. Don’t forget to sort out their desires for end-of-life care.

In the US (and other places as well) there are also volunteer ombudsman programs that can help you navigate the often choppy waters of getting help for your loved one. Another good source is this website. Although it is managed by (of all things) an internet marketing firm located in British Columbia, it presents solid information and has no obvious “axes to grind” that I noticed.

Finally, remember that if you decide that the best thing for your loved one is to move to a long-term care facility of some kind, that placement changes your responsibilities as a caregiver – it doesn’t obviate them. For example, an unfortunate fact is that elder abuse is real and is unfortunately growing due to the lack of oversight due to such things as Covid-19 mitigation measures. At all times, as their advocate, you will need to be a bulldog: a polite, convivial, friendly, firm and (when necessary) courageous – bulldog.

In Christ, Amen ☩

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A prayer for when you need wisdom and insight…

“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 all-knowing presence. But today I want to bless you especially for the promise to give knowledge to those who earnestly seek it. I need your wisdom and discernment, please. Amen.”

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Life Interrupted

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…

This Monday we weighed Janet and she was down to 91 lbs. This week Frannie saw Janet as she was getting a bath and it scared her – again. Frannie and I take walks every evening and lately the topic of conversation is always the same: What are we going to do after Mom dies?

I guess it’s pretty normal to look at a coming change and wonder what it’s going to mean. Of course, most talk of that sort is really just speculation because, in truth, we have no idea what the impact is going to be.

My company has me working at home, at least until sometime in September. So for a change this week, instead of working in my office, I’ve been working downstairs sitting with Janet. On the one hand, having me in the same room seems to be calming. But on the other hand it means that I can watch her and she feels a bit resistant to the oversight.

Thursday, I was working and she asked me to go upstairs to work. When I asked her why, she said: “The clicking of the mouse is too loud.”

“The clicking of the mouse is too loud…” I said slowly. I was skeptical, but figured why not? So I gathered my things and went up to my office on the 2nd floor.

However, no sooner had I sat down at my desk than the alarm that we have on her chair to let us know when she is trying to get up went off. Running to the living room, I saw her quickly sitting back down.

“I was trying to reach the TV remote,” she explained.

“Janet, the remote is right next to you on your tray.”

“Oh?” she said, feigning surprise.

“Yeah. You know what it looks like to me?” I asked. “It looks to me like you wanted me upstairs so you could stand up and take a stroll without me scolding you. That’s about right, isn’t it?”

Realizing that she was busted, she nodded. “Yep…”

We talked about it a bit more, and then I moved my work back to the living room. I guess the mouse is much quieter now.

Then Friday, we had a visitor. Ray, the pastor of the church that Frannie and I have been attending during this shutdown, came by for conversation and prayer. The visit was also an opportunity for Ray to meet Janet and get to know her a bit. In addition, he brought communion – which is something that Janet has sorely missed. For Janet, communion is about remembering, but it is also a way of welcoming and receiving Jesus, again and again.

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It occurred to me this week that there are basically two kinds of people in the world: Those for whom reality is an interruption keeping them from the more important things in life, and those for whom the interruptions are life.

As a caregiver, I fall often into living out the first option, when I know that the second one is actually true. The problem is that there is a curious idea abroad in the world today that encourages us to establish goals for ourselves and then judge the quality of our life based on our perceived progress towards meeting those goals.

Unfortunately, this approach to life has some problems. For example, I (like many people) began choosing my future at an insanely young age when someone first asked me what I wanted to be when I “grew up.” Now, 66 years into the process of growing up, if I were to measure my life against those pre-pubescent goals, I would feel frustrated – I am clearly not an astronaut. But even if I shifted my focus to include more adult goals, the frustration would remain.

For instance, my intention was to have a home in one place and not move my family as much as my folks, brother and I moved while I was growing up. But those intentions were frustrated to the point that our kids don’t really feel like they have a “hometown.”

My goal professionally was to have a career with a good company and retire after many years of faithful service with the proverbial gold watch. That goal was frustrated by companies that labored under the burden of poor management – and my pathological inability to keep my mouth shut when I see something wrong. (I know, you would never have guessed that about me, right?)

And in terms of relationships, I had hopes for a long and happy marriage to Janet, and dreams of us spending our “golden years” traveling around the country in a motorhome visiting grand-kids – but these are the biggest frustrations of all.

If I were to focus solely on those frustrations I would, like the small-time boxer Terry Malloy from the play (and movie) On The Waterfront, cry out:

“I coulda had class. I coulda been a contender. I coulda been somebody…”

Viewed from that perspective, all I have to show for 66 years on this earth are regrets.

Of course, there are those who adhere to the cultural myth about the “self-made” man or woman who, through strength and perseverance, overcome all obstacles. But as attractive as it might seem to say with the Victorian poet William Ernest Henley:

I am the master of my fate,
I am the captain of my soul.

… the truth is that soul captains rarely meet happy ends. For example, Henley himself died in pain from tuberculosis at the age of 54 after an amputation caused by the disease, and in the end his over-the-top poem Invictus (for which he is famous) didn’t change his life in the slightest. I wonder if, in the end, the poem’s hubris provided him with any real comfort?

But there is still the other option – that these “interruptions” and “side-tracks” are themselves life – maybe not one we chose, but one that was needful. From that perspective I can see beyond the roadblocks to recognize that while some of the big things didn’t work out as I hoped, many others that I didn’t see coming were better than I ever imagined.

For example, dreams of having children together are wonderful – even better is the opportunity to actually help bring them into the world, as I did when I cut the umbilical cord for my son Michael. Or to share the joy of watching our daughter Frannie grow and exceed the expectations of the “professionals” who forecast for her a bleak future.

“Ah. But,” you might ask, “surely you don’t mean to suggest that there is anything positive in Janet’s current condition are you?”

Actually there is. Janet has been a teacher her whole life. This illness will have been her biggest lesson to the world: How to face a future that in the short-term is clouded and uncertain, and how to do so with grace, dignity and strength. She is a demonstration of faith in the face of absolute certainty of “failure.” She will die, but it will be a death that is her entry into a new life filled with joy and health. Over the years she has many times expressed that hope, and that faith.

And for me? Well, many people go through life wondering about and obsessing over whether they have ever “made a difference” in the world. When someday on my deathbed, I consider my life while the light fades, I will be looking not at a seamless darkness born of frustrations and failures, but rather a starry night shining brightly with a myriad of points of love and grace. Not exactly what I had planned, but truly it is all good.

In Christ, Amen ☩

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A prayer for when you are facing the end…

“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 eternal presence. But today I want to bless you especially for offering us an invitation to enter into your joy. Thank you for redeeming not just my future, but my past as well. Amen”

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Dealing with Aggression:
Triggers and Responses

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…

Due to the length of the main body of this post, and the fact that little has changed, my weekly update on Janet’s condition is foreshortened.

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

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

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

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

So moving on …

What are some of the other things that can trigger violent or aggressive reactions? Here are just a few of the most common ones.

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

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

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

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

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

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

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

So here we go, in no particular order:

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

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

Be vigilant: There is an old saying about keeping your head “on a swivel.” What it means is that you don’t want to get so fixated on one problem that you miss another sneaking up behind you. Note that this mode of behavior is not something most people do automatically. It will require conscious effort. The one warning I would offer is that one of the symptoms of PTSD is hyper-vigilance. In that case, you may need to turn things down a bit.

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

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

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

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

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

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

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

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

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

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

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

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

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

So while it’s true that 100 years from now in 2120, your multiple-great grandchildren will likely know as little about your pain as you know about your multiple-great grandparent’s problems in 1920, the larger truth is that they will still feel the effects of your actions.

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

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being eternally present. But today I want to bless you especially for the part that you have given me in forming the eternal future. Guide my hands and direct my words to accomplish Your good works. Amen”

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Dealing with Aggression:How Big is the Problem?

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…

There’s a lot of good news this week. Janet is sleeping and eating better and I think we may have gotten past the hurdle of Janet deliberately doing things that she knows are wrong.

First, the hospital bed that I mentioned last week is working wonderfully! She is, understandably, resting much better. Second, we have lowered the thermostat for the air conditioning from the normal 84° to a more moderate 79°, thus making the apartment more comfortable generally.

These two changes are, in turn, interrelated. It turns out that Janet’s resistance to a hospital bed had nothing to do with her sleeping “just fine” on the sofa. Likewise, she wasn’t “getting cold” if the thermostat was set below 84°. In both cases, the real problem was money. She was afraid that we couldn’t afford a new bed for her, or more air conditioning because at my old job, there were a few months when things were pretty tight. However, I have been at my new job for over a year and a half.

The way that the money issue came to light was through the ministrations of the visiting Certified Nursing Assistant (CNA) from the home hospice organization. When she came for her visit Friday, she had a long conversation with Janet that ended with Jan admitting the truth as to why she was resistant about hospital beds, air conditioning, using her walker (she was afraid that I had spent too much on that too). As icing on the cake, the CNA also got her to admit what I had long expected, that she was resistant to following instructions because she had been independent her whole life and was afraid of becoming dependent upon others.

I’m not sure how I feel about those revelations: Happy, irritated, relieved, upset – all the above and a few more besides? The feelings are definitely mixed. Things are better – which is a positive, but I feel irritated and sad that she put herself through this added stress and didn’t even mention it…

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An unfortunate aspect of HD and most other diseases causing dementia, is that anger and aggression are very common. On the support forums, these symptoms are depressingly common. It matters little what the underlying condition might be, where you find dementia, you find problems with violent behavior. Often the amateur family caregivers get stuck dealing with it because the professionals (nursing homes, memory care facilities, etc.) simply refuse to be involved. I have been told by nursing home administrators that they don’t accept Huntington’s patients because they are, “…too violent.”

Similarly, my mother who suffered from dementia as the result of two strokes was nearly evicted from a local nursing home for being too aggressive verbally. Really? She was a 84-year-old woman who couldn’t get out of bed by herself, and your staff was concerned for their welfare? Give me a break.

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

Please note that while some of the following sources are HD-specific, similar research exists for all sources of degenerative dementia. In any case, the basic principles are the same.
I’ll start with a 2014 paper by C.A. Fisher, et al, Aggression in Huntington’s Disease: A Systematic Review of Rates of Aggression and Treatment Methods. Published in the January 2014 issue of the Journal of Huntington’s disease, this article summarized the contents of 23 research papers, published around the world, and came up with some stark results. For example, it concluded that:

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

One of the blessings – and one of the dangers – is that the aggression doesn’t happen all at once. Like that proverbial story about the frog in a pot of water, the “heat” sneaks up on you. They don’t just wake up one morning as a violent tyrant. Or if they do, it probably isn’t due to dementia, and is therefore treatable. Dementia-related aggression starts slowly, with an illogical argument that isn’t particularly intense, and proceeds step by step from there. This progression means you have time to adjust and learn. But it also means that you can miss what is happening.

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are stumbling along…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your grace and love. But today I want to bless You especially for knowing me even when I’m not sure that I know myself. Thank You for not giving up on me. Thank You for keeping my feet on the path, even when the way is dark, and I can’t feel Your hand. Amen.”