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Tending to my Knitting

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…

Even as Janet has continued to fade physically this week – the CNA reports that the difference is visible from one day to the next – Janet is somehow more aware of what is going on around her. For example, one day after lunch I burped rather loudly, and I automatically said, “Excuse me.” Janet immediately replied, “You’re excused.” A small thing, I know, but it is something.

She has also decided that she doesn’t like yogurt and ice cream anymore. So we tried her on baby food. This change has really worked out well, though she insists on being fed by Frannie. Gerber makes small containers of various types including chicken and rice, chicken noodle, pasta primavera and (one of Janet’s new favorites) butternut squash. But these prepared foods have two problems.

First, they are very thin. However, that was fixed using an old trick that I remembered from when our kids were babies. The problem for the babies was that as they were being weaned off of Janet’s breast milk, we had trouble keeping their precious little tummies full. Baby foods, like what we are giving Janet now, were more substantial than milk, but they (especially our son) wanted more. The solution was that several manufacturers also made a flaked rice cereal that was intended to be mixed with water or milk. Mixing it with the baby food, essentially as a thickener, gave a bit of improved nutrition as well. The kids did well on it then, and Janet likes it now.

The second problem with the prepared baby food is that in response to parents’ complaints, the manufacturers stopped adding salt to them. This is good for babies, but often results in the food tasting not unlike wallpaper paste – and bland wallpaper paste at that! So we added a very little salt and the flavors improved significantly. While on the topic of seasoning, we discovered that Janet loves it when we add a pinch of cinnamon to her butternut squash.

Still, she is getting more confused. Today she’s been saying that she is on a “conveyor belt” and is worried that she has “lost her belongings.” I have no idea what that means, but we are trying to reassure her.

Also this week, a cousin of Janet’s sent us a picture of her. The year was 1955 and Janet was serving as flower girl in a family wedding.

I love the smile – how very, very Janet. One day soon she will have that smile back in all its mischievous wonder.

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In years past, there was a common saying that went, “Tend to your own knitting.” It meant that the person being addressed should mind their own business. Well, this week, I have been tending to my knitting, but in the literal sense. I knit. I don’t knit a lot, and I’m probably not very good at it, but should the need arise, I can still run off a couple of scarfs or a stocking cap. The most complex thing I ever tried was to make a pair of socks. Unfortunately, I used the wrong kind of yarn and they came out so thick they were more like my old Air Force arctic boot liners – they could literally stand up by themselves.

But while I hope that you are amused by the story about the socks, you shouldn’t be surprised by the idea of a man knitting. If you go back to many of the countries where knitting developed, it was traditionally the men who knitted. The craft was thought to have developed as an offshoot of making and repairing fishing nets. Plus, it was part of the division of labor: women spun the wool into yarn, and then the men made things from the yarn his wife created. It was only later that it was hijacked by Victorian matrons to be used as a signal for words that weren’t allowed to be uttered in movies. For example, you couldn’t use the word “pregnant” but showing a woman knitting a pair of tiny booties got the point across just as well.

The neat thing about knitting, from the standpoint of a caregiver, is that it is easy, portable, and relaxing – even meditative. Oh, and don’t forget cheap too. You don’t need a lot of expensive equipment, and the supplies don’t cost a lot, unless you want some kind of fancy yarn. A pair of needles (#8 in the US will do nicely), a skein of yarn, and instructions from the internet, and you are on your way to your first scarf. Scarfs are easy because you just knit back and forth until you run out of yarn and then you’re done. Or if you want, you can tie on another skein of yarn and keep going – it’s all up to you. The project that I am working on right now is the creation of two scarfs for Christmas presents.

There is something about the process of knitting that is extremely salutary to one’s mental state. All you have to do is repeat the same two stitches over and over again, and in the end you get a beautiful scarf. Oh, it might not be as fancy as one you buy in a story but it will be yours.

Earlier I said that knitting is meditative – and it is. The soft tapping of the needles and the still softer whooshing sound they make as they slide and rub against each other creates a wonderfully restful tap-whoosh-whoosh cadence, and as the fabric you are creating accumulates, you get a tremendous sense of accomplishment.

However, if you pay attention, there are some very important life lessons that you can learn from knitting. For example, a single stitch accomplishes little, just as a single act usually has little impact on the world. However, when you combine that single stitch with hundreds or thousands of similarly “unimportant” stitches, a beautiful fabric appears. Likewise, when you take a single act and combine it with hundreds or thousands of others you create a loving, supportive environment for the person under your care.

One of the things that makes knitwear interesting, and beautiful, is the patterns in it. These patterns can take the form of changes in colors or the ways the yarn twists and winds around itself in a fancy cabled sweater. But there’s a secret: In a sense, it’s all an optical illusion. The “pattern” results from how a single stitch relates to the stitches on either side of it, and how a row of stitches relates to the rows above and below it. To a single stitch, or even a row of stitches, there is no pattern – in fact at that level, all the stitches may appear identical and thoroughly unremarkable.

But to the creator, the one doing the knitting of the yarn, there is a pattern. But that pattern isn’t formed by the cleverness of a particular stitch or one row’s brilliant colors. In fact, those sorts of things will often ruin a pattern because they draw attention away from the creator’s intention for the pattern. A truly beautiful pattern only exists in the relationships between the various parts.

As a caregiver, it is easy to feel that the individual stitches of our lives don’t matter very much. For example, will the world come to an end if my loved one’s food is a bit bland? Probably not. In fact, your loved one might not even notice. But that does not mean that the act was pointless or the concern that drove it was futile. It is noticed and it forms a vital piece of the pattern for the world.

We are told of innumerable small, even trivial things that are important to The Creator knitting our world together: sparrows dying, cups of water, tiny coins. We also read that they are all important because they all play a part, sometimes in the causal sense as in this famous 13th century proverb:

For want of a nail the shoe is lost, for want of a shoe the horse is lost, for want of a horse the rider is lost.

But sometimes a small thing is important because, in the grand scheme of things, there is significance in the insignificant because everything came from the hand of the same Creator. In this view, there are no “throw-aways.” No throw-away acts, no throw-away words and certainly no throw-away people.

In Christ, Amen ☩

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A prayer for when you are feeling small…

“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 magnificence and splendor. But today I want to bless You especially for the meaning with which You imbue my life. Because I am working empowered by You, nothing I do is trivial or meaningless. Moreover, I know that even though I do my work imperfectly, Your grace will fill for my in any shortcomings. Amen.”

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Clouds Parting

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.

I guess you could say that it all started with Frannie wanting to get her hair dyed. She had always had brown hair and, perhaps as a way to express her independence, she decided to dye her hair red – not a bright fire-engine red, but a nice natural burgundy color. So after some internal family turmoil (which is not part of the story) she purchased the dye and I agreed to help her dye her hair. The clear understanding was that no matter how it turned out, it was her decision, and her own responsibility

When the time arrived to “do the deed”, Frannie came to my room to let me know that she had everything set up. So I got up, took two steps, and the next thing I knew I was sitting on the floor cross legged with a bump on my head and Frannie kneeling next to me saying, “Are you Ok Dad? Are you Ok?” I had momentarily blacked out. After sitting on the floor for a few moments I got up and laid down on my bed.

My first thought was that I had recently lost several pounds and so perhaps my high-blood pressure medicine was at too high a dose. So I decided to stop taking it and wait a couple days to see how things fared. Two days later when I took my BP again, it was still very low so, at the urging of two daughters and a sister, I went to the local Emergency Room here in Pearland to get it checked out.

In the end, after interminable tests, two different sonogram examinations and numerous samplings of various bodily fluids, the determination was that my BP meds were too high which, through a series of interactions that would have potentially stumped Dr House, had left me severely over-medicated and under-hydrated.

The other significant side-effects of all this drama were that I was in the hospital overnight. From that brief respite, I discovered that Janet did just fine without me hovering around every second, and Frannie did an exceptional job handling things while I was out of commission.

PS: Frannie did get here hair dyed, and it’s really lovely!

Years ago, I wrote a monthly column for our church’s newsletter called Everyday Epiphanies – a title that I always liked due to its slightly oximoronic flavor. After all, epiphanies are supposed to be epic discoveries typically accompanied by things like burning bushes or God engraving commands in to your living room carpet with fire. They certainly aren’t “everyday”. This memory comes up for me today because this week has been one of epiphanies for me, but ones coming from very everyday sources.

My first insight was that when God is telling you that it’s time to sit down and slow up for a bit, you need to do it. Otherwise, He will sit you down – sometimes cross legged on the floor. The point here is that just because you have a job to do, that doesn’t mean that you are indispensable. God never sends you into a situation without backup. In my adventure this week, my backup turned out to be my daughter Frannie. And to show how deep a bench God has, He backed her up with a large supporting cast including my daughter Catherine, my sister Margie, our pastor, and a family from church that I’m not totally sure that I know.

Before this week, I had major concerns as to how well Frannie could handle things in a crisis. Now I do not. I see now that when push comes to shove, Frannie has the backbone to do what needs to get done. I am very, very proud of her.

The other insight that I gained this week was about the basic nature of mourning and grieving. The source of that epiphany was a short video clip that I posted to my timeline on Facebook. The video is the end of an obviously, much longer musical piece by a Croatian cellist named Stjepan Hauser. The music itself is the climax of an operatic aria, the title of which I don’t remember though I seem to remember hearing Luciano Pavarotti sing it.

The video is very moving in that it shows a variety of people: first responders, shop clerks, everyday people removing their masks and smiling. These images, combined with the music brought tears to my eyes – so I shared the video. However, when you share something like that, Facebook wants you to comment on it when creating the post, and the problem was that I had trouble describing my feelings. The music was very triumphant, but nothing has, of yet, been won. In fact, there is still a long way to go. Moreover, I’m not even sure that thinking about this in terms of “victory” and “defeat” is the right paradigm because both imply an end to the story. We may “defeat” this virus, but there is always more that needs to be done. In fact, there is an unending list of diseases (both contagious and not) that need to be conquered.

Likewise with grieving, there is no “end” to the process, there is no point (here on this side of the veil at least) where you can say, “Ok, that was a nasty job but it’s over, and I am free to move on now.” – a statement that pretty much sums up the myth of “closure”. Closure is the idea that at some point you will get to a place in life where having lost a loved one will no longer hurt. The only problem is that grief doesn’t work like that. Over time the open wound may heal, but like an injured joint that aches when the weather is changing, things are never quite the same as they were before.

In the end, I described the video as “coming out from under a cloud”. In this view, the cloud doesn’t go away, just as the pain, the loss, and the risk of disease, never goes away. The difference is that I no longer choose to live in the cloud’s shadow or let my life be ruled by it. Consequently, I may still have the pain or the fear, but I have decided to stop being the pain and the fear. Instead of railing against the darkness and rain, I will now begin moving towards the light.

Going through this transition is hard and unfortunately there is no set formula for how to do it. Moreover, it is no simpler helping someone else go through it either. As much as I would like, there are no A, B, Cs on how to do it that I can give you. But I can tell you that it requires many of the things that we have talked about before. Things like empathy so you can truly feel their pain; love to enable you to go through it with them; and a willingness to leave behind formulaic “solutions” in favor of (lots of) prayer that provides the insights to replace the formulas.

In Christ, Amen ☩

A prayer for when you are living under a cloud…

“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 light and joy that You bring into my life. But today I want to bless you especially for the support you give when my life seems dark and cloudy. Thank you for those You send into my life to support me, especially {  name supporters  }. Please show me how to pass along this divine gift to others. Amen”

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Thoughts from a fairly good friday

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.

Perhaps because we have all been confined here at home due to this virus, or perhaps just because things always get worse, this week has been something of a mess. Early on, I had hopes that things might get a bit better because Janet and I talked on the phone with her neurologist and Janet agreed to try an additional medicine (Klonopin) to help with her mood and chorea. Unfortunately, in the 24 hours between the phone call and being able to pick up the medicine, Janet changed her mind again and decided that she would try it, but only after her bowels got sorted out. Translation: She’ll take the new med when pigs fly!

Subsequently, I have spent a lot of time this week crying over losses – a situation exacerbated no doubt by my inability to sleep through the night. The world seems overflowing with things to fret about. Things like dear friends being in peril, from viruses – and other things. Then there are the hopes that seem to revive and then deflate, all within a few hours. As roller coasters go, the one I’m riding now pretty much stinks. The problem of course is that with a physical ‘coaster you get to experience thrills and chills, but in a safe environment where no one is ever really in danger. Unfortunately, with the one that I’m on, people really die. The “thrills and chills” come from trying to figure out whether they are going to die now or later.

People who have been following this blog for a while know that my Janet most-likely inherited HD from her father. Long time readers will also remember that he and I never got along very well. In fact, harsh words often passed between us. Or they did at least until one day when Janet and I went to see him while he was in a hospital towards the end of his life. At one point he got Janet and her mother out of the room on the thinnest of pretenses:

“Mena, why don’t you take Janet and show her the cafeteria in this place, it’s very nice.”

The cafeteria? Really? What could this be about? As soon as they were gone, he called me to his bedside and held out his right hand. When I took it he said,

“I just wanted to tell you that I’m sorry. You are a good man and I am glad you married Janet.”

I thanked him, and shook his hand. After that we sat quietly until the ladies got back from their “tour” of the hospital’s culinary facilities – each of us deep in our own thoughts. A few weeks later, Janet’s dad was dead.

The reason that I am bringing this up, is that this morning, Janet (in a rare moment of mental and verbal clarity) told me that she was grateful for all the things I had done for her, and that I had been a “good husband”. Soon, however, the HD closed back in and I was back to being an insanely huge mistake in her life.

Please excuse the language, but roller coasters are a bitch.

Today, as I write this, it is Good Friday. To modern Christians, it is certainly a strange name for an admittedly strange holy day. It commemorates the death of Jesus on the cross. Especially now, in the midst of a pandemic panic, why would that death, or any death for that matter, be considered “good”?

And what are we supposed to do with Good Friday anyway? We certainly don’t run around telling one another, “Merry Good Friday!” The problem with Good Friday is that the holiday and the name come from a time before we (individually) became the center of the universe. It was born out of a culture where sacrifice was seen as a noble thing – and not at all stupid, offensive or degrading. But mostly, it came from a time when people were able to maintain perspective about the importance of experiences and situations.

In some ways, a lack of perspective may be a uniquely American problem. After all, our mere 250 years of existence is quite literally the blink of an eye in the overall flow of history. Not long ago I was talking to someone from Italy about the virus and my concern for the health of her family. Her advice: “Don’t worry ahead of time. God takes care of things.” In these situations, Italy has the advantage of millenia of historical perspective. Within just the past 100 years, they have had to deal with not one but two world wars that were fought at least partially within their own national borders. Unlike the US, for whom both wars were “over there”. And when the pandemic did come knocking, they did what needed to be done, but didn’t abandon community. Instead they moved to their balconies and had nightly distributed concerts and community sings. They played, sang and cheered for each other because they knew that when this plague passed – and plagues always do – life resumes. So while the loss of life is tragic, only the loss of community would be truly catastrophic.

By contrast, here people are in a tizzy over the fact that 100,000 people could die from this virus while ignoring the fact that this total is still thousands short of the death toll that the seasonal flu racks up every year. To be clear, if the death toll rises that high, every one of those deaths will be a tragedy, but how about a little perspective? Look up the number of people who die from things like heart disease, cancer, suicide or even childbirth. Moving closer to home, what is the annual death toll of degenerative neurological diseases? Although there are arguments over the exact number, some reports show that for Alzheimer’s alone, the US total could be over 500,000. Every. Single. Year.

Perspective…

Another thing that would be nice is to be able to get the facts of what we are going through right now with a lot less sensationalism. The other day I saw a news story that described in excruciating detail (and with pictures!) how right now, all over the world, there are literally millions of medically untrained senior citizens providing the day-to-day care for loved ones with terminal diseases! This revelation might have been earth-shattering to the 20-something that “discovered” this fact, but for many of us, it’s not a revelation, it’s our life. Want to see a really scary number? Research the number of these “untrained senior citizens” (i.e. caregivers, like us) that die every year, decades before our peers. In one sense, this lack of recognition feels very familiar – I was, after all, in SAC (Strategic Air Command). Who knew or really understood what we did either?

Furthermore, consider this very blog. Who in blazes am I to be advising others? I’m just another medically untrained senior citizen who is trying to pass along what I am seeing and feeling and experiencing, and praying to God that I am doing even a few things right. I don’t enjoy flying by the seat of my pants, but what else is there? If Janet didn’t have me, she wouldn’t have anyone.

The bottom line is that we are all amateurs on this bus. We all have things to contribute and to learn. None of us are really prepared for the jobs into which we have been thrust. We all lean on and depend on one another. We all have a dirty job but we do it, even though it often means sacrificing years off of our lives. So perhaps Good Friday is, after all, the perfect time to acknowledge the “good” work we do. But it is also, without a doubt, the time to remind ourselves of a few things.

First, we don’t live in a “safe” world. None of us are guaranteed even the next five seconds. Something could happen before you finish reading this paragraph, and anyone who says otherwise is lying to you. Bottom line: life has a 100% fatality rate. The question is not whether you will die, the question is whether you will live before you do so. Second, this work isn’t about us – that is why it is called service. Consequently, whether we realize it or not, what we do does get noticed. Even without accolades from important people, ribbons or medals, what we do is seen by Someone. Third, we are never really in this fight alone. In addition to the globe-spanning support community that we have created for ourselves, The One who notices, is also The One who blesses, strengthens and sustains us. In the end, that support is our only real source of hope. And without that hope, we are (as Paul pointed out) above all people, most to be pitied.

In Christ, Amen ☩

A prayer for when you feel that the world is on your shoulders…

“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 world in which we live and the protection that You give us. But today I want to bless you especially for the strength and insight You provide to me. It is so easy for me to fall into the trap of believing that I am just a small cog in a very big machine. I know that most of the time, I can’t comprehend what it is that You are up to, but thank you for showing me the pieces that I can understand. Thank you for the courage to continue on when I seem surrounded by darkness and pestilence. I pray, Lord, that You will show me how to be a beacon of light and hope. Amen”

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…but what else 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 we had an appointment with Janet’s neurologist. It went well, though her weight had gone down 2 lbs. Janet started a new medication this week that should help her with mood, chorea and sleeping. So far it seems to be helping a lot with her sleep. Last night she went to bed about midnight and didn’t wake up until about 10:30 am! Mood is continuing to be a problem. Last night she was yelling at me and Frannie about cough medicine. She said that I lied because I forgot to get the cough syrup that Frannie requested when I went to the store on the way home from work. Then when I found a bottle of a different brand at home and Frannie told me that it was ok and would work fine, Janet started yelling that Frannie was lying too. At that point I stepped in to protect Frannie and things went downhill from there…

After the party that I discussed last week, things went well between the two of us until Janet’s dad heard that I was (a) divorced and (b) a Lutheran. To this day, I’m not sure which bothered him more. I found out later that before we met Janet hadn’t been to Mass in 15 years, and although we had only known each other for 6 months, I somehow became responsible retroactively for the entire 15 years of her apostasy. In any case, one Sunday we were at her mom and dad’s house and they asked Janet to come with them to a back bedroom. A few minutes later she came out and announced, in no uncertain terms, that we were leaving – Jan was clearly angry. When we got out to the car she told me that her parents had been grilling her about my past life. She tried telling them that we had discussed it in detail and that was all that was necessary. But not for her dad, he just kept getting angrier and angrier. Have I mentioned that we think her dad is where she inherited the HD?

The whole next day at work, the conversation kept replaying in my head and every time it did, it bothered me more. So I decided to go back and talk to them about it – without Janet. By the time I get to my future in-law’s house, I was angry too. When I sat down to talk to her dad I reiterated that she and I had discussed everything so she was going into whatever was ahead with her eyes open. Consequently, if he had any questions about my past he was to talk to me directly and he was not to harangue Janet about it.

So he demanded to know whether I was paying child support. I assured him that I indeed was paying support. But he pressed further, “How much are you paying?” Looking him in the eye, I told him, “None of your damned business. Next question?”

For a moment, I was afraid that I had overplayed my hand. You see a few years before Janet’s dad had suffered a stroke and I was momentarily afraid he was going to have another one. His face turned a bizarre reddish-purple color and the veins on his forehead were bulging. So reckoning that I had made my point, I left. Later, when I arrived at Janet’s house, she met me at the door and related to me the contents of a phone call she had just had with her mother, and asked me if what her mother just told her on the phone was true. I told her it was, and she hugged me around the neck.

In the past, I have talked several times about the loss of identity that can occur when you lose a loved one and are grieving that loss. For example, after 30+ years of marriage, you might have come to identify as one half of a couple. But when that relationship ends you can be left wondering who you are now. Of course with diseases that produce dementia, your loved one doesn’t even have to die for you to experience that sort of identity crisis. As their personality changes, or worse, dissolves completely, you can be left in a state where you question everything about who you are, what you are doing and whether your work is actually accomplishing anything useful.

I believe that crises of these sorts all lead back to a common root: needing to be needed.

So to explore that point a bit, let’s start with the situation where your loved one is still alive, but is rapidly deteriorating. Oftentimes when a loved one is newly diagnosed with a degenerative disease, they respond with thankfulness and gratitude for every little bit of service that you provide them. But then things start to change. Due to the effects of the disease, the warm feedback stops and your loved one becomes sullen, uncommunicative or even openly hostile. Instead of the original, “Oh thank you, honey, for getting that sandwich for me.” You have to deal with, “So what took you so long?!” – or worse. To address this case, let’s take a riff on a famous kōan:

“If a tree catches fire in the middle of the forest, and there is no one there to see it, is a fireman needed?”

Clearly, one tree can catch another, thus leading to a wide-spread conflagration, so in one sense, yes, a fireman is needed. Now, let’s say that by chance, a fireman happens by and seeing the flames, puts them out, and saves the forest. The thing is, as that fireman proceeds on his way, he may be basking in a real sense of accomplishment, but it’s very likely that he won’t feel “needed” because there was no one around to acknowledge that need or express gratitude for his actions.

Here we see in stark contrast the two aspects of needing to be needed. One is the objective question of whether or not some action is actually warranted. The other, subjective point, is how your actions are perceived. From this explanation we can see that most scenarios where a caregiver complains about not being needed are actually cases of where they don’t feel needed – an important distinction.

Consider that saying, “I’m not needed”, is voicing a statement that is almost entirely about you: You are not adequate for the task at hand. You are not important. You are not enough. However, saying, “I don’t feel needed.” is a comment that is all about the care situation. In fact, the assumptions behind such a statement are that you are adequate, and you are important, and you are enough. The problem is in the reaction. That is a much different, and far easier, problem to solve, and one that we have talked about before.

Curiously, this dichotomy can even exist in the situation where the loss is complete because the loved one has died – though it looks quite a bit different. Now the objective view affirms that you indeed are not needed because the person needing you has died so there is nothing more that you can do for them. But here, the subjective view can come to your rescue by pointing out some important things to consider.

Above all, there is the matter of perspective. Maybe you aren’t feeling needed because your worldview is too small. Instead of wringing your hands over being “useless”, try asking God, “What is there for me to do?” Alternatively, you can look at the challenges that you have recently faced and reconsider them from the standpoint of the question, “What was God preparing me for?” Now admittedly that might be a novel perspective for some, but I have found that it’s the novel perspectives that give the most interesting answers. Oh, and given that there is no such thing as a coincidence, don’t forget to consider the talents that you have picked up along the way – even a trivial one like knowing how to knit…

To illustrate, many years ago when we lived in Tucson Arizona I heard a story on the radio about how dangerous hypothermia can be for people living in the streets – even in Tucson. So in response, I came up with the idea of creating an interdenominational project to knit stocking caps for the homeless men, women and even families. Each cap came with a tag inside it that said:

“This cap was not bought in a store. It was hand-knitted by someone who believes that you are worth the effort it took to create it.”

For distribution, I went to the Salvation Army. By the end of the project, they had handed out over 700 caps that we created.

Now I assumed that this project would do great things for the folks receiving the caps. What surprised me, though, was the gift that it was to the knitters. For example, one the ladies was from one of the big Catholic churches downtown. She and her husband had been active members for many years and when he passed, she embraced new role as widow, and threw herself body and soul into serving the parish. She chaired committees, headed up charities and out-reach programs, you name it.

Then one day her doctor told her that she had a very bad heart and that she had to stop all outside activities – she wasn’t even allowed to leave her apartment to go to Mass. In one day, she went from being involved in everything to feeling literally quite useless. And to make matters worse (from her perspective at least) it quickly became apparent that all the parish organizations that she had been in were managing quite nicely without her.

A few weeks later when the priest came by for his weekly eucharistic visit, he told her about this guy who had contacted the parish office with a project to knit stocking caps for the homeless. Maybe that was something that she could do since knitting isn’t at all strenuous. So she called and I explained the project and why it was needed. Even though it had been years since she had knitted, in the end she agreed to try. The next day I went to visit her and give her some yarn to get started and a pattern.

To make a long story short, she attacked this new project the way that she had everything else in her life and soon she was turning out caps at an amazing rate. It didn’t take her long to use up the yarn I brought her. So she had friends run to the store and she bought more yarn on her own, and people she knew from the parish brought her even more when they heard about what she was doing.

With this simple thing she found new meaning and new usefulness. But mostly she found people who truly needed her.

However, all this discussion begs the question, “What is it about being needed that we find so important?” Well I believe that when God created humankind He, metaphorically speaking, left His fingerprints in the wet clay. And I believe that one of those fingerprints is our deep need to serve others. The reason we need to be needed is that it’s built into who we are as people. In fact, it’s so much a part of who we are that to deny it we have to in essence deny our very humanity. Perhaps this is the one of the root problems of big cities and other environments that teach us to ignore others and just look out for ourselves: survival is framed as being dependent upon us not being human.

So to close I want to quote Ralph Waldo Emerson. I feel with its pithy, very New England tone, this statement puts the point particularly well.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

In Christ, Amen ☩

A prayer for when you don’t feel needed…

“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 creating me in Your image. But today I want to bless you especially for the divine mark that You left on my soul that enables me to not only enjoy serving, but allows the serving to sustain me, like emotional or spiritual food and water. Correct my too-small perspective and clear my eyes so that I might see the work that you have set before me. Dear Father, make me useful. Amen”

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Puppy Dogs and Unicorns

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

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

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

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

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

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

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

Yes, being an HD caregiver can be dangerous.

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

A prayer for when your past comes calling unbidden…

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

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Getting Ready for the End

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.

Back before Christmas, you may recall that Janet decided that she was tired of fighting and wanted, to go be with God. However, our son and his family visited over Christmas and that visit has been like a tonic for her. As things sit right now, her attitude is much better and she is wanting to resume PT — all good stuff. But having said that, she is still basically living on yogurt. We have tried a few other things, but the result is always the same: choking.

So for now, things are better, but as with most things related to HD, “better” is always a relative term that can change at any moment. So I’m enjoying the present respite and refusing to worry about the disease’s next phase — I’ll worry about that when it gets here…

In the past, I have written about the process of letting go that a family goes through, and let’s be honest, the final stage in this process — physical death — is going to be traumatic enough without needing to worry about (for the lack of a better term) the logistics of dying. Please note that several of the things we’ll be covering could have legal implications depending on where you live. One of the things that has surprised me about this blog is how far it has reached. As I sit here writing, the blog has been accessed from more than 30 countries. For this reason, I have no way of knowing what local requirements might exist in your local jurisdiction. So please check with appropriate authorities for what legal requirements you might need to satisfy.

Much of what we are going to be talking about falls under the heading of End of Life Planning or Final Arrangements. Hence, the first important point to make is: Do not wait for the “End of Life” to formulate your End of Life plan! In an ideal world, spouses should have addressed at least some of these issues as soon as they were married, but when you are young and are convinced that you live forever, matters like these are often avoided because it can be uncomfortable to consider your own mortality. If you have been in the group just, “kicking the can down the road”, it stops now. There’s no road left.

The matter is especially urgent if your loved one has, or has just been diagnosed with, a degenerative condition like Huntington’s, Parkinson’s or Alzheimer’s. For much of this planning, you are going to need their input which means that you need to be discussing these matters while your loved one still has the mental capacity to communicate their thoughts and desires. For example, if your loved one is nonverbal and not eating, that is not the time to be trying to figure out whether they would want a feeding tube.

Maybe it was because we were older when we got married, or more likely this is just who Janet is, while we were still dating she and I talked about issues like what level of life support we desired in the case of a catastrophic illness or accident. Most young couples discussed wedding plans over candle-lit dinners, we discussed the pros and cons of feeding tubes and ventilators.

It is important to note that while you don’t have to agree on everything, you do need to know what your spouse wants for him/herself. Whether you are legally assigned as their medical power-of-attorney (MPOA) or just recognized as the “next-of-kin” you have, at the very least, an ethical responsibility to speak for them and not insert your own wishes into the process. When making these arrangements, you can discuss, advise and counsel, but at the end of the day, it is their life and (right or wrong) it is their decision to make.

The other thing you have to decide is what happens after they die. Ever since Janet discovered that she did not have Hepatitis as a baby (long story) she has wanted to be an organ donor and so has been signed up for years. However, a couple years ago we realized that the exact circumstances of her death could compromise her organs for use in transplants. Therefore, as a backup plan, she made arrangements to donate her whole body the McGovern Medical School at the University of Texas to help train future doctors. Alternatively, if your loved one wants a traditional burial or cremation service, now is the time to make those arrangements and, if possible, make pre-need payment arrangements.

Next, the surviving family — and the caregiver in particular — need to be thinking about how they want to spend their time the day that their loved one dies. Do they want to spend the day:

  1. Praying, crying together and consoling one another
  2. Running around the house like a crazy person looking for phone numbers and legal papers

Obviously, Option A is preferable, so now is the time to be making that day possible. First, you need to know what actions will need to be taken, and who needs to take them. I spent a chunk of time while I was in the Air Force flying with “The Peacemakers” the Strategic Air Command, or SAC. One of the things that SAC loved was checklist, because checklists are a great way to make sure everything that needs to happen, does. When the stuff starts hitting the fan in a serious way (whether it is World War 3 starting, or your wife dying), it can be easy to get emotionally overwhelmed. The checklist provides a point of focus and a list of things that you can do to manage the situation.

To create your checklist go back over your arrangements and decide what things need to be done, the order on which they need to be done and who is responsible for doing each of them.

For Janet, if she dies at home we know that the number for hospice as our first call. They will, in turn, contact the organ donation folks and the medical school to determine the final disposition of Janet’s body. Next, we have a list of family members that we need to contact as well as our pastor and a couple folks from church. By the way, that contact list includes an item to update this blog with a notice that I have it written. All I need to do is fill in the date and time, and post it. If it sounds strange that I would get online at a time like this, well, regardless of which of the 30+ countries you live in, you all are family too, so I want you to know. Finally, there are the legal calls to the life insurance company, social security, and the state agency that is providing disability services for Frannie. She has learning disabilities and her mother dying impacts (in a good way) the services that she can get.

The second thing you can prepare ahead of time is a binder containing all your legal documents to include: Will, hard copies of the MPOA paperwork, insurance papers, birth certificate, an up-to-date list of the medications they were taking, and so on. If you are working with a hospice organization, they can advise you on what you should have available. Note that this binder can also come in handy if the need ever arises for you to bug-out fast due to a fire or natural emergency.

Finally, and I can’t stress this point strongly enough, make sure everyone in the immediate family understands the arrangements that you have made ahead of time. You don’t need the added drama of someone getting angry because they didn’t understand the plan. Remember also that when “The Day” finally comes, people (including you) can express what they are feeling in a variety of ways. Some may get busy “doing stuff”, some may pray quietly, some may wander around aimlessly, some will want to sleep, and some may develop a sudden urge to play a video game or watch an absurd, pointless program on television. And some, remembering a past incident or hurt that the disease caused, may want to get angry and yell.

Try to organize sufficient family time combined with times that let everyone process as they need, as long as their behavior isn’t disruptive to the others. When there are disagreements, try to remember the real reason for the upset probably has nothing to do with what the argument is about. Rather, it’s because you all have just lost someone that was part of your life.

So, how about an 11th commandment: “Thou shalt cut each other some slack.”

In Christ, Amen ☩

A prayer for when you are preparing for The Day…

“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 wisdom and care. But today I want to bless you especially for the promised eternal life that You have waiting for {The name of the person for whom preparations are being made.}. As I work to complete the preparations for their trip home to You, give me wisdom to make the right decisions, and when the day comes for their departure, please fill out home with your holy angels to soothe old wounds and to remind us of the reunion that lies ahead. Amen”

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Semper Prorsum

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

So we come to the end of the Year of Our Lord 2019 — which is also the end (though it doesn’t seem possible) of the second decade of the 21st century. As has become customary for this time of year, I want to take a few moments to talk about the changes that the last year has wrought in my life.

2019

The end of last year and the end of this one could not be more different. A year ago I was, to be frank, foundering. I felt cold, cynical and what writing I did dripped with dark sarcasm. Janet was constantly angry, confrontational and critical, and there didn’t seem to be any hope and no future.

When someone asked me what I was going to do after Janet died, I told them that I had absolutely no idea because I hated everything about the situation that I was in. I told someone once that with my luck I would die only to discover that the Catholics were right about purgatory and I still had 15,000 years more to go before I got to Heaven.

On a personal level, I likewise felt very much adrift. On the one hand, I dreaded the idea of being alone, but on the other, I felt beat up and wondered who would ever want to be with me. I even wondered whether it was even fair for me to consider “inflicting” myself on someone else. I felt like damaged goods: a dented, expired can of Spam — which is to say something people aren’t too excited to have when it’s new, and when it’s not… Yeah, you get the idea.

While work was still somewhat fulfilling, even it had starting to drag on me. I had always assumed that retirement was for other guys. I had even told people that I would stop programming and retire when, “…they pried the mouse out of my cold, dead fingers.” Now I just didn’t know, but I also didn’t know what else there was for me to do.

For most of the year, one day followed another, endlessly gray and undifferentiated.

But I guess at some point I was finally ready to hear what God had to say, because things began to change. Bit by bit, through a friend from church, prayer and of course my sister, I began to see a light at the end of the tunnel, that I was pretty sure wasn’t the headlight of an oncoming train. As I travelled on, the light slowly got bigger and bigger, and I could see that the track I was following led out of the tunnel and wound around a bend. While I couldn’t see where the track led, that didn’t seem to matter anymore — it led somewhere, and that was all that was important.

What really made the difference, though, was you folks on the support forums. I initially got on the forums as a way of letting people know about the blog. I started out with just the Huntington’s and Juvenile Huntington’s groups but quickly branched out to others. The important thing was that I realized that whether the group was for HD, JHD, PD, Alzheimer’s, mental illness or dementia, caregivers all had similar challenges.

By reading your stories I got a sense of perspective on my own troubles. I saw that Janet could have been much worse, and I needed to spend more time being grateful and less time complaining. Moreover, I realized that I had more to contribute than just writing the blog. Things I had learned the hard way could help other people, so I began participating more. After experiencing the results from supporting and praying for people as they work their way through their pain and trials, I saw my load got a little lighter too.

Which reminds me, one of the things that that has amazed me is that since this blog went live 7 weeks ago, there have been over 2500 page views, by 1290 visitors, from 35 different countries. I am in absolute awe. Thank you all so much! I wish I could hug all 1290 one of you!

2020

Well, that brings us almost up to date. Next Sunday will be the last time where I will speak in the past tense. After that post, the blog will be about what happened that previous week.

So what will we talk about this new year? Beyond a few obvious things like, at some point, Janet will die in 2020, I really don’t know, but I promise you this, we will always be moving forward. Which, by the way, is what the title of this post means: “always forward”. When you are a warrior for God, one of the things to remember is that He doesn’t back up, or give ground. Ever.

In closing, I love you all, and thank you for your prayers and blessings.

In Christ, Amen ☩

One last prayer for 2019…

“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 how you empower us to reach out in love to others. But today I especially want to thank you for this year. Although there have been hard times, I can nevertheless see your hand guiding and directing me. Teach me to love you more deeply, trust you more completely, and follow you more speedily. Amen”