Momentary Clarity

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 time for clarity – though sometimes it has been a shrouded clarity. Confused? Well, let me explain.

For some reason, Janet has always had a special place in her heart for my daughter Catherine from a previous marriage. This concern was most commonly expressed in Janet’s desire for me to be in regular contact with her. We started with weekly phone calls, and now we often talk a couple of times a day via video calls. Consequently, my grandson, due in large part to my beard, actually believes that his grandfather is Santa Claus.

The depth of Janet’s concern for Catherine only became apparent this week. Lately, Janet’s perseveration has been being expressing itself in the form of a check list of concerns that she feels compelled to constantly re-verify to ensure that everything is organized for her end-of-life:

Life Insurance?   ✓ Check

Wills?   ✓ Check

Body Donation?   ✓ Check

After these standard items, she always runs through the family (including the dogs) to make sure that we are OK. However, a couple days ago, she changed the family list by asking, “…how are the girls doing?” Wait! We only have one daughter.

“The girls?” I asked.

“Yes, Frannie and Catherine,” she replied.

“Oh, they’re fine,” I said.

I have to admit that I was initially confused, but then I got to thinking that, viewed in a broader context, this “mistake” actually made a lot of sense. Janet has always cared about Catherine, though at times the emotional issues associated with HD got in the way of their being really close. Looking back, I think that emotionally Janet had a hard time saying what she felt, and this is how it is coming out now – clarified by Janet including her as a daughter for which she is concerned.

When a loved one with dementia says something you don’t understand, the immediate (and very human) reaction is to try to correct them. But this situation reminds me that to them, there may not be anything to correct. To them, the logic is perfectly clear and there is much that we can learn by restraining our urge to fix their perceptions, and simply hear what they are saying.

In other news, Janet’s weight continues to drop, and for the first time, she has slept for 24 hours straight – which did not help the weight issue. At the end of her long slumber, Janet seemed much better, so I guess she was just getting caught up. We have also gotten a new air mattress for the hospital bed to help with the problem of bed sores.

Janet is now going through periods where she doesn’t want anything to eat, and then suddenly will eat a lot all at once. Continuing a trend, she particularly likes anything that Frannie cooks for us, but I have to be careful to cut up whatever we are having into VERY small pieces. Janet is also asking for more personal contact like sitting and holding hands, saying “I love you” and the three of us praying together. The thing that breaks my heart, though, is that she is also apologizing more and more for being sick – like she has any control over it!

Something that I have often heard is that the one thing that never leaves is the anger. Well, for Janet at least, that is not the case – and I am very thankful.

Finally, I’m going to have to talk to the home hospice agency this coming week. Simply put, my back is giving out. I was diagnosed several years ago with sciatica and even using the proper techniques for moving and working with Janet that the CNA taught me, I still go to bed every night with an aching back.

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Something that seems to be coming up a lot these days is the concept of “value.”

I saw this cartoon months ago and the artist graciously gave me permission to use it here. As a good four-panel cartoon should, the first three panels set us up for what we are sure will be a warm and fuzzy ending, only to have the fourth frame jerk the ethical/moral rug from beneath our feet.

In terms of its ultimate message, this cartoon reminds me of a joke I heard several years ago about two men who were stranded on your prototypical desert isle – you know the kind: small mound of sand sticking up out of the water with nothing on it but one palm tree. One man (the pragmatist) tries to explain to the other one how dire their situation is: no food, no water, not even any shelter. But as each problem is presented, the other man simply says, “Don’t worry, I make ten million dollars a year.” Finally, the pragmatist yells, “You don’t understand! We are going to die!” To which the other fellow (who it turns out is also a pragmatist) replies, “No, you don’t understand. I make ten million dollars a year and I tithe. My pastor will find me.”

But all kidding aside, what does it mean to be of value? For as long as there have been legal systems, liability laws have had to wrestle with this problem: How do you put a price tag on something that is essentially priceless? How do you compensate a widow for the loss of her husband from (for example) an industrial accident? Obviously, there is no way to make her, in the legal sense, whole. So the law got as close as it could to a just answer and invented complex procedures to calculate such things as a lifetime of lost wages, with perhaps a bit added in for “mental duress” or “loss of companionship.”

Unfortunately, over time, society has come to believe that these calculated funny numbers really are the value of a human being. As caregivers, this is a critical issue because around the world, politicians and bureaucrats are beginning to openly question whether keeping certain people alive is worth the cost to society to do so. By the way, who do you think will be the ones to not “make the cut”? Certainly, the incurably ill and those past their wage earning years. While this attitude isn’t exactly the same as the one that drove the creation of gas chambers and mass crematoriums, it is without a doubt close.

So we must ask ourselves, what if the person whose value is being questioned is my spouse, or parent – or in a few years, even me? Suddenly this question is not at all abstract or academic. We have gone beyond actuarial tables and statistics to talk about real flesh-and-blood people – you know, the ones that the politicians like to forget.

What is disheartening for me is that I can remember a time when this question wasn’t even asked because the universal assumption was that human life is of value, all the time – not just when it is useful or convenient or wanted. Now even infanticide is on the table.

The root problem, as I discussed last week, is that only people of faith have the vision needed to see the interconnectedness that demonstrates the value of all human life. Without a perspective larger than ourselves, there is no basis for assigning worth or value to human life, and the resulting philosophy will be based largely on personal greed or authoritarianism.

Next, before closing, the passing of Justice Ginsburg has resulted in a flurry of breathless posts trying to shame people for saying things such as “Rest in Peace” or “She’s in a better place now.” Their point is that since she was Jewish, we shouldn’t be “polluting” her memory with such Christian concepts. The problem is that neither of these ideas are exclusively – or even originally – Christian. While it is true that Christians believe in (and in fact, are counting on) both of these ideas, they were also exceedingly common among the early founders of the faith who were predominantly Jewish, as well as modern day Judaism.

Finally, I know that post is relatively short, but this is a strange time in our household. I have spent many hours in tears and caring for Janet and Frannie.

In Christ, Amen ☩

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A prayer for when you are exhausted and hurting…

“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 everyday strength that you give. But today I want to bless You especially for the special strength and reassurance you provide to care for us in times of extraordinary trials. Thank you for the knowledge that darkness is always the precursor to light. Amen.”

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.”

Respite – The Pause that Refreshes

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, Janet weighed in at 87 lbs – and that may be her last “official” weight because she is too weak to even stand up for a moment on the scale.

As the week went on, she became more and more disoriented and confused – symptoms that we have been treating with the occasional 1 mg Lorazepam sublingual tablet and many, many hugs and kisses.

She is still eating a bit, but it is mainly for the flavor – not the nutrition – and we have to feed her as she can’t find her mouth on her own. She seems to be particularly enjoying anything cooked by Frannie. The last two nights she fixed macaroni and cheese, and spaghetti with a veggie sauce. Janet enjoyed them both immensely and, thankfully, there has been no choking.

Saturday, Janet was mumbling about insurance, wills, organ donations, and a whole laundry list of other things that kept running through her head as things she needed to handle. She was worried about Frannie and me, and even whether Rocky and Lawtay (our two dogs) would be okay. Finally, I told her:

“Janet, you don’t need to worry. You have done everything that needed to be done, and handled everything that needed to be handled. You have worked so hard, for so long, and now it is time for you to rest. I am proud of you, and you have earned this rest. So sleep.”

I don’t know if she heard me, or understood what I said, but she seemed less agitated afterwards. Then, a few minutes later, she asked me to hold her hand for five minutes – which I did.

I have called our son and told him he needs to be thinking about heading back to Texas – and the sooner the better.

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The title of this post encapsulates the common meaning of “respite” as it is understood today. And if you can remember when the last part of the title was used as a marketing slogan for a popular soft drink, I hate to break it to you, but you are really old…

However, the word didn’t have that always meaning. In the 13th Century the word is derived from the Latin root respectus which meant “to turn around to look at” or “to regard” something. That is the sense I want to talk about now.

Oh, I had originally planned to discuss respite as a process for getting a break from the load of having to care for a loved one, but that didn’t work out. The nursing homes in the area that would normally provide in-patient hospice services have apparently confused a virus with a 99%+ survival rate with the bubonic plague, and are not taking any admissions. They have said that they are either afraid of giving Janet Covid-19 or are afraid of Janet bringing Covid-19 into their facility. Given that neither excuse stands up to any sort of logical scrutiny, I am at a loss for identifying the real reason, but it smells like lawyers.

So back to the original meaning…

I have written many times about the dangers of living life in the “rear-view mirror” and those warnings are still valid, but as is so often the case with coins, there is another side. Respite, in the old sense of the word, can also be a way to step back from your present troubles and objectively remember the past, for both the good and the bad that it contained.

For the good memories, these moments of “respite” can be an opportunity to relive the happy times without needing to invalidate them by saying, “Yeah that was good, but look what was coming.” Likewise, for the bad memories, your new perspective can lead you to the conclusion that some of the bad times weren’t really that bad after all, for they led to some good outcomes that, at the time, you couldn’t see. Moreover, if you see the opportunity to learn as a positive, you may find yourself in the position of watching all your “bad times” evaporate or slide to the other side of the ledger.

Recently, I read about a university in the US that performed a study demonstrating a relationship between a subject’s ability to perceive interconnections between different occurrences or events, and their ability to believe in a “supreme being.” Interestingly, an identical study was performed at a university in the Middle East with identical results.

That is what the data shows.

The researchers’ conclusion was (predictably) that people with this ability were “making up” God to explain the connections that they saw, but which didn’t really exist. Although a comparison to the mathematician John Nash in the movie A Beautiful Mind was never explicitly made, the implication was there – or perhaps that’s just my “beautiful mind” connecting more dots that aren’t really there.

But starting with a different set of presumptions, a different, equally valid conclusion is also possible. Perhaps the “dots” and the connections linking them really do exist, and people of faith (through the eyes of faith) are able to see those connections.

In the context of our current discussion, people of faith can see connections between events – even painful events – which lead to hope. On other hand, people without the ability to connect the dots see only random events – which leads to the kind of despair that we see around us everyday.

But what if the universe is just random? Well, that is a possibility, but then we would have to ask ourselves why the universe doesn’t act randomly. In fact there is a whole area of mathematics (called chaos theory) that is dedicated to the study of things that at first appeared to be random – but aren’t really. For example, I work with computers and something that you might think should be rather easy is actually very difficult: How do you calculate a sequence of numbers that are truly random (i.e. there are no patterns in the sequence of numbers)?

Note that this usage of the word “chaos” is actually a redefinition of the word. Prior to the 1970s, random and chaotic meant the same thing – and in some areas still do.

Spoiler: You can’t – this is why the biggest lottery in the U.S., PowerBall, uses physical balls in a television studio in Florida. It’s still not random, but its chaotic behavior means that it’s also not predictable, which is good enough for a lottery.

So if the universe really isn’t random – how are we to explain the order that we see everywhere we look? Well, perhaps the answer lies in what people of faith have known for untold millennia: everything has a cause, and The Cause is someone who is knowable.

In Christ, Amen ☩

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A prayer for when you don’t understand what is happening…

“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 order with which You created the cosmos. But today I want to bless you especially for bringing order to my life, even when I don’t see the patterns. Give me the grace to experience true respite. Amen.”

Music to Soothe the Savage…

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…

More changes this week. Janet is only awake four or five hours a day. It has also become very difficult for her to walk because she can’t really support her own (steadily decreasing) weight. I may have to stop taking her to the bathroom. No walker, no wheelchair, just the bed.

At one time, her world was the world. She traveled to Europe, toured the US, and we honeymooned in Tahiti. Then due to this disease, her world shrank first to a single town, then to an apartment, then a room and now to an 80″ x 34″ hospital bed.

Once a teacher capable of explaining the intricacies of mathematics with precise, clearly formulated explanations, her words and thoughts are now both garbled. She is sundowning badly and spends much of her awake time confused and hallucinating. Consequently, I find myself reassuring her more and more by saying, “Don’t worry Janet, I’ve taken care of everything…” Which makes me feel like a fraud because it doesn’t feel like I have taken care of anything.

A brochure that we got from hospice presented such a comforting, peaceful view of an “end of life” process in which Janet would just quietly and effortlessly drift off into eternity. I find myself wondering where one signs up for that program. Despite everything that I’ve seen and written, I still catch myself thinking, it can’t get worse than this – and then it does…

I was talking to the hospice nurse this week, and they have a respite program where they will pick Janet up in an ambulance, check her into an in-patient hospice facility for five days, and then bring her home at the end of the stay. Hopefully, this time will give Frannie and me a chance to get some badly-needed rest and recharge a bit before the last big push. When I told Janet about it, the first thing she said was:

“What did I do wrong?”

She thought that this was some kind of punishment or “time out.” Frannie and I both reassured her that it was just a time of rest for all three of us – her included.

“Just think,” I told her, “five whole days of getting taken care of by people who really know what they are doing – and not a couple of amateurs like us.”

This end time is also a season for learning new skills. Most recently I learned how to cry silently so as to not disturb Janet.

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While the phrase “Music Therapy” may, at first hearing sound, very New Age, nothing could be further from the truth. The concept was expressed eloquently in the opening lines of the tragic play The Mourning Bride written in 1697 by the British poet William Congreve:

Musick has Charms to soothe a savage Breast,
To soften Rocks, or bend a knotted Oak.
I’ve read, that things inanimate have mov’d,
And, as with living Souls, have been inform’d,
By Magick Numbers and persuasive Sound.
What then am I? Am I more senseless grown
Than Trees, or Flint? O force of constant Woe!
‘Tis not in Harmony to calm my Griefs.
Anselmo sleeps, and is at Peace; last Night
The silent Tomb receiv’d the good Old King;
He and his Sorrows now are safely lodg’d
Within its cold, but hospitable Bosom.
Why am not I at Peace?

Although this verse documents a failed attempt at “soothing,” the concept predated the poem considerably. For example, Congreve’s line was probably a reference to a poem from the Roman poet Lucan, and Old Testament references to similar ideas (e.g. 1 Sam 16:15-16) show that the idea of music as a therapeutic agent was recognized far back into antiquity.

My first exposure to the idea came through a 1940’s cartoon in which Bugs Bunny quoted the line in his mixed Brooklyn/Bronx accent as:

Music hath charms to calm the savage beast

– which in the cartoon was a rather dopy lion. Also note the change of the last word. In the 1940s you couldn’t mention “breasts” in films – even metaphorical ones. Whether it’s Bugs Bunny’s fault or not, this is still the most common misquotation of the line.

However, the modern practice of music therapy is based on far more than folklore and literary tradition. In recent years, medical researchers have scientifically documented the effects that music can have on people’s mental and emotional states by using brain scans to track the neural signals that tell the pituitary gland to release endorphins, the so-called “feel good” hormones.

Studies have also documented music’s ability to relieve stress, decrease symptoms of depression, reduce negative thoughts, and generally improve the listener’s state of mind. One interesting discovery that is of particular significance to caregivers is that there is no single kind of music that is universally therapeutic. Depending upon the person, and their mood at the moment, nearly any genre of music can be of benefit.

Music can also aid people in self-expression, or bring to mind past experiences. But remember, not all feelings that a person can express are positive, and not all past experiences are pleasant. For example, one person I spoke with for this article shared how she was singing the John Denver song Sunshine On My Shoulders in a group setting and one of the clients started crying uncontrollably. Interestingly, this client had previously been completely shut down emotionally and unable to participate – so while whatever memory the song brought up may not have been pleasant, perhaps those emotions were what was needed to start him on the path to healing.

Note that MT can be applicable even for people who are either totally or partially deaf, in that they can still feel the vibrations or other physical sensations associated with the music (called haptics). In fact there are several websites dedicated to the use of music therapy with people having hearing deficits.

Formally, Music Therapy (MT) comes in two forms:

Active MT – This form involves the actions of a therapist playing music for and with the patient, encouraging them to play or sing along. This sort of work often, though not always, occurs in a group environment – such as a group in a nursing home where the clients are in various stages of dementia. It can be really helpful to sing songs that the people remember from earlier in life because memories of music are apparently stored in a different part of the brain than normal everyday memories and will therefore last a lot longer. Singing old songs by themselves, or in combination with the playing of instruments or hand clapping, can get a person moving and interacting with other people, which in turn helps to improve mood and health.

Note that in many jurisdictions, music therapists have certification requirements similar to the requirements for other forms of therapy, but that doesn’t mean you can’t work with your loved one on your own.

For example, a spouse knows the songs that were meaningful to their loved one and can use that knowledge to help keep them present and involved. Certainly, the same thing would be true for a parent dealing with a child suffering from a degenerative condition. Remembering children’s songs can give comfort and support by reminding them of happier times before they got sick.

Passive MT – In this form of therapy, the patient listens to music without any sort of required participation. Again, a caregiver’s knowledge of their loved one can serve as a guide in selecting the appropriate music. For example, just because a magazine or website may say that Mozart is “soothing” not everyone will find it to be so. For example, a given person may prefer Charlie Pride, The Oakridge Boys, The Beatles, Aaron Nevill or even The Brighouse and Rastrick Band – and that’s OK. It is all about what is soothing to them.

And don’t forget about religious music. Even if the person doesn’t normally listen to “church music” every day, hearing a favorite hymn or music from their church’s liturgy can be a comforting reminder of God’s love and care. Some of my most wonderful memories from growing up were from family trips, where my mother would sing to my father to help him stay awake on long drives. Hearing those hymns now never fails to bring a tear to my eye, but they also make me feel warm and loved.

For more information on any of this you can refer to the American Music Therapy Association. Their website provides links for obtaining more information, as well as a function for locating a licensed music therapist here in the US. The main thing to remember is that as a caregiver you have insights that a stranger – no matter how professional they may be – does not have.

And finally, don’t forget that music therapy works for you too.

In Christ, Amen ☩

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A prayer for when you are feeling savage…

“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 who You are. But today I want to bless You especially for a particular aspect of who my loved ones and I are. You have created us to be able to enjoy the music of others and the ability to create music of our own. Thank you for putting in our hearts the desire to make a ‘joyful noise’ in Your presence. Amen.”