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This is a test… This is only a test…

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…

One of the nice things about home hospice is that they offer an option for respite care – which is to say, a chance for the caregiver to get a little downtime to recharge a bit. The way it works varies from one agency to the next, but basically it involves them picking up your loved one in an ambulance and taking them to an inpatient facility for a short period of time of, say, five days.

We had tried once before for respite care, but there were no beds available in the area due to the panic over the virus. This time it worked out. They picked up Janet at 7:30 Wednesday morning and will have her home Sunday afternoon. My biggest two concerns were that A) Janet wouldn’t understand what was happening and B) She could pass while in their care – followed, naturally, by an entire alphabet of other concerns.

In order to address Concern A, we began talking to her about it as soon as I got word that all the arrangements were in place. She was confused at first because she thought they were coming to pick her up to take her to heaven (see last week’s post), but eventually she understood that she would be back home on Sunday.

Concern B has been a harder nut to crack because the truth of the matter is that she could die in the following five days – this is, after all, a hospice program and not an adult summer camp. The way we addressed it was to say our “final” goodbyes when she left the house, and we made sure that we showered her with hugs and kisses – even as they were loading her into the ambulance. But that got me thinking, isn’t that how we should be acting all the time?

Why should we wait for a loved one to be in hospice to make sure that they understand how much they are loved? We, of course, shouldn’t. But we all, of course, from time to time, do.

And what about the rest of the alphabet of concerns? All you can do is acknowledge that despite what culture tells us, we are not in absolute control of our destiny. But the bottom line for us is that these concerns have been our reality this week.

This week has been a chance to begin to experience life as it will be when Janet doesn’t need all of my attention and care. Like I say in the title of this post : This is a test… This is only a test…

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Anyone who has ever bundled up a child for their first day of school, summer camp, college, or basic training has had to face the specter of separation anxiety – which is really just a broad-brush label for responses to situations in which relationships are changing. Unfortunately, changing relationships is the hallmark of being a caregiver for someone with a chronic or terminal disease. To make matters worse, the speed and severity of these changes are beyond our control – even as we try gamely to control them.

However, if you look up the topic of separation anxiety online it is often characterized as a “disorder,” and worse, a disorder that primarily affects children and infants. In other words, if as an adult you are feeling this sort of anxiety, the implication is there that something is wrong with you – and perhaps even that you should just “grow up.”

To be fair, the problem isn’t with psychological professionals, counselors, and therapists as they can, and typically do, understand the nuances of our situation. The real issue is all the folk-psychiatrists that caregivers can encounter on a daily basis – which is to say, family members, friends, co-workers, and acquaintances.

But even if we accept the proposition that these people are doing the best they can, we have to recognize that telling someone who is suffering from guilt-driven separation anxiety to “take it easy” or “give yourself a break” does about as much good as telling someone with depression to “cheer up” – which is to say, none at all. So here are a few things that caregivers need to consider as they fight their way through this situation:

There are no quick fixes: Recovery from this sort of anxiety can be a long hard road because turning around and changing direction can feel an awful lot like giving up – even when we see that the way we are doing things now is not working. Sudden shifts can and do happen, but they are not the norm.

Change is inevitable: It might be nice to fantasize about a universe where everything is static and constant, it is in the end just that: a fantasy. The world changes, people change, relationships change, everything changes. Being in a state of flux is the normal condition of everyone and everything in the, at times maddening, headlong rush from “what was” towards “what will be.”

No one has infinite mental and emotional resources: Simply put, we all get tired and need to rest. Getting the rest that we need in order to function is not weakness, giving up, or copping out. Even Jesus took time to rest.

No one is infinitely wise: We all make mistakes all the time. That is a fact. But it’s also a fact that people usually make more mistakes by failing to act than they do by acting. So do your “due diligence,” decide on a course of action, and then act. A plan doesn’t have to be perfect when you start. Remember that you can’t steer a parked car. Movement, action is called for.

Professional caregivers can care as much as you do: One of the challenges that I ran into when considering putting Janet into inpatient hospice for five days, was the worry that the people there wouldn’t know how to take care of her. They don’t know how she reacts or feels and they don’t know what she likes. While that much is true, it’s also true that the vast majority of doctors, nurses, and CNAs are caring, tender people who will treat Janet like she is a member of their family.

Caregiving is a team sport: In a lot of ways, this point goes along with the last one. As a caregiver I am one (vital!) part of a care team. The other team members may not see my loved one every day, or ever, for that matter, but that doesn’t mean that everything is dependent solely upon me. That is why there is a team – so one person doesn’t have to do everything. In engineering terms, having a team means you as the primary caregiver are not a “single point of failure”.

You are never alone: While this point might sound a lot like the previous one, there is a difference. In addition to being part of a team that together takes care of Janet, I also have backup and support for my particular job on the team. This point is critical because the basis of my relationship with Janet is unique among the team members. Our relationship is based on a covenant between God, Janet, and myself, which means that my not being alone means far more than somebody being there to lend me a hand. It means that regardless of how bad things might seem at the moment, there is a hand on the wheel that is steadier than mine and an eye on the road ahead that is far clearer.

In Christ, Amen ☩

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A prayer for when you are tired…

“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 limitless strength to be found in You. But today I want to bless You especially for providing caring and skilled healthcare workers to care for my loved one while I rest, recuperate, and heal for this last leg of our journey together. Strengthen and guide me so that I might remain faithful to the end. Amen.”

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Watching, waiting …

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 has been a week about remembrances.

Remembering is important because in some ways our final legacy is the memories that we leave behind us, but what are memories? Science defines them as chaotic blips of electrical energy jumping between synapses, and so are “rewritten” each time they are remembered. On a related topic, I have a recurring dream in which I come back in 500 years and am in a conversation with a scientist of the day who will be amazed that I was actually so primitive that I thought memories were stored in the brain. “My goodness,” they will say, “what a quaint concept! Simply everyone knows that memories are stored in the [            ].” Fill in the blank with something that everyone will know about in 500 years, but which we don’t even suspect now.

The dream then ends with a close up of my shocked face – similar, no doubt, to the face of a proper Elizabethan learning that the heart was not really the seat of emotions, or the face of a noble Pharoah upon hearing that the home of the human soul is not the liver.

But what does any of this have to do with Janet? This week I have been watching Janet’s brain begin the process of shutting down, with the result that memories – or at least her ability to access them – are evaporating. The CNA from hospice is seeing significant changes over just a couple days between her visits. Her speech is nearly incomprehensible at times, and she is no longer eating anything solid – think: applesauce and yogurt.

Her vitals are normal and stable, but from the way she was responding yesterday they suspected that she was in pain so they gave her .5 mg of morphine orally, and she did much better, so it looks like they may have been right. During the day, I sit with Janet so if she needs anything, I’m right there. During the night either Frannie or I check on her every couple hours.

We started that additional precaution after Janet threw up in the middle of the night this week. She apparently didn’t choke, but it is unknown so far whether she aspirated any – a very real concern given that most studies list aspiration pneumonia as the leading cause of death in Huntington’s patients (between 70% and 85%).

When she sleeps, she talks – a lot. And her waking (?) conversations contain more and more non sequiturs like the comment, “I love you… Jackie loved JFK…” – she always admired President Kennedy. But then maybe it is like my sister suggested, and the ideas were connected. Then this morning she told me that, “The doctors are wrong and I don’t really have HD, I’m just very, very tired.”

But this has also been a week for remembrances.

Despite this decline, she still had a couple moments of clarity. A couple days ago she was upset because she realized that she was not going to make it to Frannie’s birthday in November. To compensate, Frannie and I put together a quick impromptu early birthday party for Frannie so Janet could celebrate her turning 30, with family and friends. For the celebration, Frannie found a box of brownie mix (which she fixed) and we were able to do a group video chat so Janet was able to sing happy birthday to her daughter one more time.

I also noticed this week that Janet’s Bell’s Palsy has come back. The last time it was apparent was when she was pregnant with our son. In all our family pictures from that time she has her left eye taped shut because it couldn’t blink properly.

Finally, this has also been a week for blessings.

This week I was here at home when the doorbell rang, unexpectedly. When I went to the door, our visitor was Pastor Regina Wilson, of the Word Fellowship Christian Church here in Pearland. We know her because the church that she leads shares the building with the congregation that Janet, Frannie and I belong to, and because she lives two doors down from us.

When I invited her in, she explained that she had come because when she woke up that morning, God was, “…whispering your wife’s name in my ear…”. So she came to minister and pray with and for us. On a practical level, she brought a thermos of chicken broth – which Janet has enjoyed. But she also came to minister spiritually. First, she anointed Janet with oil and prayed over her.

This simple act comforted Janet greatly. Then Pastor Wilson served communion to the three of us. And finally, in an act of divine service, she washed Janet’s feet.

While ritual foot washing is not something we do in our church, Pastor Wilson explained that it is a regular part of their church’s worship life and they do it for each other as a part of their regular worship once a month. The act is drawn from the Gospel of John when Jesus washed the feet of his disciples to emphasize that if He serves them in this way, how much more should they be serving others around them.

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Something that I haven’t mentioned before is that in addition to this blog, I have another writing project that has been ongoing for a few weeks – but it’s a very different kind of writing. Whereas this blog is (I hope!) very down to earth and practical, the story that I am writing has been since its inception almost like transcribing a dream. I didn’t know what it was to be about, how large it was going to be, or what it even meant – the words just poured out and I wrote them down.

As I added to it, and I got input from a couple of folks that I shared it with, I slowly began to see what the story means and where it is going. As it stands now, it’s over 100 pages in the word processor, and I have identified some of the major characters and themes, but I still don’t know exactly how long it will be, or how it will end – except that the last five words will be:

The End – But not really…

In any case, the reason that I am even bringing it up is that one of the epiphanies that I have had about it is that it is really covering the same territory as this blog, but in an allegorical sort of way. I realized this relationship when I came to a place in the story when one character was writing a love letter to another character. Suddenly it wasn’t two fictional characters, but Janet and I, and I was reliving our meeting and falling in love.

Last week, I wrote about the old meaning of the word respite which is “to turn around to look at” or “to regard” something. The point of this regard is to appreciate and celebrate the good, without needing to add footnotes or content advisories concerning the misery ahead. Or to put it another way, its point is to be in the moment – but in that moment. That moment before the anger started, before the doubts crept in, before the long, slow goodbye.

This week I have been remembering and reliving the good. It’s been a good week.

In Christ, Amen ☩

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A prayer for when you need to remember…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You as the Author of all good things and fresh beginnings. But today I want to bless You especially for the beautiful memories with which You have blessed me. Rather than letting me continue viewing roses as flower bushes with thorns, teach me to appreciate them as thorn bushes that you have adorned with flowers. 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”