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.”

Dealing with Aggression:
Triggers and Responses

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

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

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

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

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

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

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

So moving on …

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

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

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

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

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


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

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

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

So here we go, in no particular order:

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

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

Dealing with Aggression:
How Big is the Problem?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are stumbling along…

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

What is the Point, Really?

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 Janet fell again – twice. According to her, she is totally wheelchair bound because she can no longer use her walker. Okay, fine. Except her solution is to not stay in the wheelchair and call Frannie or I when she needs help. Oh no, her solution is to try and walk where she wants to go without the walker! In her mind, the walker no longer works for her, so she just stops trying to use it. In fact, according to her, the walker is why she fell the last time. She said that she tripped over it. Unfortunately, she fell in the hallway and the walker was in the living room, two rooms away!

This whole situation really worries Frannie because she has a friend whose mom fell, broke her hip, and died in the hospital. Consequently, Frannie is scared – and not without reason. With the current panic about this virus, if Janet does fall and has to be taken to the hospital by an ambulance, Frannie might not get the chance to ever see Mom again, dead or alive.

So for now, Frannie and I will watch Janet more closely and try to keep her in her chair.

This week I have also been revisiting the topic of retirement – and unfortunately my own words have been coming back to haunt me. Many years ago, when our son was in Boy Scouts, I taught a financial planning merit badge class. During that class, we discussed looking for their life’s work. A point that I made was to always start the search from what you enjoy doing. My reasoning was (and is) that we are all here to fill a particular niche in the world, and because God loves us, He will put into our hearts a love for doing whatever it is we are here to do.

One of the boys asked, “But Mr. Porter, what if you can’t earn a living doing what you love doing?” In response I said, “Look, if a bunch of good ‘ol boys from down south that loved to fish can figure out a way to spend all their time fishing – and get paid to do it – you’ll figure something out!”

Those words were so easy to say, but how to put them into action? Now I am the one trying to figure out my future. To wit, how do I maximize my time at home taking care of Janet, while doing what I love (writing)?

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I feel I should start off by apologizing ahead of time in case the following conversation devolves into an emotional rant. This week it seems like I have been inundated with absurdist comments – or at least comments that from the Christian perspective, are rather absurdist. What makes matters worse is that some of the comments are coming from ostensibly Christian organizations. Consequently, I feel particularly uncomfortable with the direction in which things seem to be going.

Before the pan(icked)demic took hold, caregivers were under-appreciated and overwhelmed – but at least there was no hostility towards us. Over the past few months it feels like things have changed. It’s like people have turned off their brains and are all reading off the same script. I’ve been asked, “Don’t you care? You could bring the virus home and your wife could die.”

Sometimes, I feel like tapping them in the middle of the forehead with my forefinger (really hard) and yelling, “Hello? Anybody home? She has HD, she IS dying.” Sometimes, I feel judged by people who have no idea what is going on with Janet and seem unwilling or unable to grasp the implications of her disease. Looking back, I realize that there is only one thing that has remained constant in the time since Christmas: Janet is tired and wants to go home to be with God. Every day is painful for her, every day is torture as she feels herself melting away, and like an injured animal she just wants to curl up and hide. Who knows? Maybe those feelings are the root cause behind some of the behaviors that seems so willfully self-destructive.

Of course in the grand scheme of things, HD, with its 30,000 diagnosed cases, is not really very significant. But there are many other terminal diseases. At least people dying from cancer (like Lewis’ wife, Joy) can know and understand what is happening. However, do you have any idea how many different diseases can cause dementia? Those poor souls don’t know and can’t understand what is happening, so they die alone, deserted and isolated from everything that is familiar. Who of us can relate to that level of despondency?

However none of those facts matter in the slightest to the people with the scripts. They just read from the carefully typed-out and focus-group-tested talking points and no deviation is to be tolerated! Conform or be publicly shamed.

And then there are those who try to make it sound like they are concerned for you and your welfare. Admittedly I am old, but I can remember when the predominant feeling was that you deal with what life hands you, and just keep moving forward as best you can with God’s help. Now it seems like everywhere I turn there is someone telling me to just, “…say a quick prayer, and move on…”. The point of that particular post from a “Christian” organization, was that if you dwell on someone else’s problems it will drain you emotionally. I’m not saying that helping others doesn’t drain you emotionally, because we all know that it does, but their post was saying that we should use that effect as an excuse to not be involved in the lives of others – which is clearly wrong.

I once saw a cartoon where a lawyer was reading the will of a wealthy man to the “grieving” relatives who were presumably waiting to get their cut of the inheritance. The will started: “I John Smith, being of sound mind, spent it all before I died…” A real-world example of a similar attitude was Andrew Carnegie. While he accumulated unimaginable wealth as a young man, in later life, he started systematically giving away his vast fortune, to the extent that by the time he died he had little money left. And what did he use his money to build? Colleges, universities, but mostly libraries! I don’t know about you, but I grew up going to a Carnegie Library. Later, I was surprised to learn that there were actually libraries in the United States that he didn’t build. You see, in small town America, the words “Carnegie” and “Library” just went together.

That is sort of how I see things spiritually. I have been blessed with certain resources and, as in the parable of the talents, those resources are to be used. When those resources are used well, there is gain. But remember the words to the servant that just sat on his gift and hoarded it – he was called “wicked” and “lazy.” In sports, they use slightly different imagery. They say that if you have anything left when you get back to the locker room, you didn’t play hard enough. At the end of the day, that is what I want for myself: I want to be able to say that I “left it all on the field” – and if that makes me look irrational in the eyes of some, so be it.

In Christ, Amen ☩

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A prayer for when you are feeling tired and irritated…

“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 consolation you provide. But today I want to bless you especially for the gifts and resources that You furnish to Your children. You always send me out into the battle well-prepared. Thank you for always giving me what I need, even when I don’t realize I need it. Amen”

Ambiguous Loss

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.

So what can I say about this week? Should I go into the details of what it is like to be quarantined with a woman that says the words, “I love you” but in actions says the exact opposite? No, there is no point in plowing that field again, so let’s talk about something else. The weather? No, that is too local. Politics? No, that is too divisive.

I have it: Risk. That is a good topic, but it is a dangerous one. To risk is to put something, perhaps everything, on the line. Risk means to put up or shut up, to commit yourself regardless of the cost. Risk is a timely topic right now too, as every newscast seems to be about it.

I haven’t mentioned it before publicly, but I have started learning Italian. Why? Partially because it is a risk, though an admittedly small one. But love, marriage and life – those are big ones. When Janet and I were going on our honeymoon, we decided to go to Tahiti because Janet had a job where she flew a lot, to the point that the airlines were almost paying us to go there. While there we met an Italian gentleman Signore Mantovani. As I recall he was some sort of official with the EU. He was alone because he had just lost his wife after a long illness and was traveling, revisiting all the places they had gone together as a couple. When he heard Jan and I were newlyweds he immediately “adopted us” taking us on obscure tours that he knew about and one night took us to dinner.

For those of you who have never had a real Italian dinner, it is not a quick sit-down to a plate of spaghetti at Olive Garden. A real Italian dinner is an all-night affair. So we had been “dining” for a couple hours and had just finished our appetizers and a bottle of very good wine, when Signore Mantovani looked at me and said, “You know what the problem is with Americans?” I had to admit that I did not know. He said, “You eat too fast! In Italy, we talk a little, we eat a little, we have some wine – and then we talk some more. In Italy, dinner holds us all together! Dinner isn’t about feeding the body. It’s about feeding the soul.” What he meant, of course, was that in Italy eating is always about more than food. Meals are about famiglia, family – and that understood in the broadest possible way. The dinner table is where traditions, lessons, love and recipes are passed on from one generation to the next.

Questo è per te Signore Mantovani!


Last week, I mentioned a term, more or less in passing. I had heard it from a friend online but have since found out that it is a real thing. The term is ambiguous loss, and it provides the title for this post. To my surprise, a psychologist, Dr. Pauline Boss, has been writing on this topic for nearly 20 years. One of the points that she makes in her work is that while “ambiguous loss” certainly applies to situations such as people suffering from dementia, there are also many other sources. For example, for someone who is divorcing, there is an ambiguity about the loss in terms of what exactly is going to be the relationship going forward. Likewise, she has worked with wives of MIAs about the ambiguity of their own marital status. Are they still married, or are they, in fact, widows. Even a child leaving home for college can produce a sense of ambiguity. Do we set a place for them at Thanksgiving, or should they be included when you say “we” (meaning the family) are going to do something? In the end, we see that ambiguous loss is actually much more prevalent than the “normal” kind where we can, for instance, see a body lying in a coffin.

For this reason, I have been looking into the matter further and the result is (at least) this post. While I haven’t done a book report since high school, that is what you are getting this week. Specifically, I’m going to be talking about Dr Boss’s first book on ambiguous loss called, appropriately enough Ambiguous Loss, Learning to Live with Unresolved Grief. This book is available on Amazon in hard copy or as a Kindle download, which is how I read it.

The first thing I want to point out about this book is that, while its primary audience is the psychological “clinician,” Dr Boss has a writing style that is nevertheless accessible and very easy to read. For example, the “case histories” that she presents are as likely to come from her own or her family’s experiences as from those of a client. Which is another good point, she never refers to the people or families that she sees as patients. Likewise, she doesn’t refer to her sessions as therapy because, in her view, words have meanings and to use the word “therapy” would imply that there is something wrong with the person or the family that needs to be fixed. In truth, she points out, the problem is not dysfunctional people but a dysfunctional situation. It is the situation that needs to be addressed. Consequently, rather than being the problem, the people are always part and parcel of the solution.

Dr Boss, likewise, doesn’t try to rephrase discussion of psychological matters in “layman’s terms.” She says, and I agree wholeheartedly, that talking down in that way is condescending to the people with whom she is working.

In addition to the psych-jargon and condescending attitude, also missing from this book are long drawn out discussions of the brilliant solutions that she developed for a family’s problems. Instead she presents solutions that people developed on their own to address their own needs. For example, she cited the case of a woman whose husband had an advanced case of Alzheimer’s Disease and who, despite not remembering who she was, was continually making sexual advances to her. In the end, the accommodation that the woman developed on her own, was to remove her wedding ring and put it in her jewelry box. She had realized that the thing that was causing her so much grief was the ambiguity between the conflicting roles of “wife” and “caregiver.” This simple act of removing the ring gave herself permission to temporarily set aside the wife role so she could concentrate on being the caregiver that her husband needed. Eventually, when her husband died, she retrieved her ring and took up her new role as “widow.”

Now obviously this solution will not work for everyone, but that very fact demonstrates an important point. Just as the loss is ambiguous, so are the rules that govern dealing with the loss. Therefore, the person or persons grieving will often have to cast a wide net to obtain the information that allows them to (prayerfully) synthesize for themselves a way forward. Such input can come from psychological professionals, family/cultural traditions, and their faith community.

In another case history, Dr Boss points out a fact that in hindsight is rather obvious: ambiguous losses are cumulative. In other words, most of us will go through multiple losses that would fall into this category and ones that are not resolved adequately add to the mental load imposed by the later ones. This stacking of loss upon loss can mean that dealing with a current loss can easily turn into an archeological expedition digging up and healing old unresolved grief that is being triggered.

So what is my final evaluation? I would say that this book would be money well spent for anyone who is being troubled by uncertainty – and who isn’t these days? You won’t find in it pat answers or how-to “recipes.” What you will find is information that will help you understand, and come to grips with, what is going on in your life.

As I was finishing up this post, it occurred to be that right now the whole world is in the midst of dealing with a massive ambiguous loss – so ambiguous that we can’t even be sure what it is that we might have lost. I am speaking, of course, of the pandemic that may (or may not) be raging across the globe. Is this the greatest threat to civilization since the bubonic plague, a hoax thought up by a shadowy global elite to enslave mankind, or a biological warfare experiment that went horribly wrong? Whom do we trust for information? Friends, family, media that can be owned by the government that it is reporting on, or the proverbial “guy in a bar”? Due to the ambiguity inherent in this situation, these ideas, whether we believe them or not, can and do create question marks in our minds that we have to deal with.

And then there is the question of what we may (or may not) be losing, or be in danger of losing: our life or the life of a loved one, freedom, country, religion or perhaps something larger like our sense of community and trust? Clearly we all have a lot of work to do.

In Christ, Amen ☩


A prayer for when you are feeling uncertain…

“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 certitude that You provide. But today I want to bless you especially for ambiguity. You are at once the central exclamation point of my life and the biggest question mark. There are so many things of which I can be absolutely certain, but at the same time so many things about You that are (to use the theological term) mysteries. Lord, help me to learn to be comfortable resting in the mysteries of who You are, and give me Your words to reach out to others. Amen”

…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”

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”

Reaching Further Out, #2

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.

I had not originally planned to have a follow-up for last Sunday’s regular post, but earlier this week I read something online that changed my plans. What I saw was a Facebook post from Corrie Harris on an HD support forum. It was so good and to-the-point that I knew I had to give her words broader exposure. So here they are. I have touched up the formatting a bit, and fixed a couple misspelled words, but the heart, love and message are all Corrie’s:

In Christ, Amen ☩


01/04/2020 00:40

So, I have been contemplating whether or not to type this out and hit the send button — or just not post and continue to suck it up.

There is a scripture that says, “…Rejoice with those who rejoice and weep with those who weep…” I don’t know how many years I’ve been on the Huntington’s support group pages and have known each of you, but I have known a few of you for over 5 years, all online. We get close because we are all going through similar things. You were and still are my ONLY support. My only cheerleaders. The only place I go when I want to vent or rejoice. Until about 18 months ago, most of my time online was spent either in questions, research, agony, complaining, or being stressed out of my mind by my husband Richard’s HD symptoms and new-found personality.

Many of you have been there for me and I will always appreciate each one of you for that. Your presence reassured me that I was not alone in my pain. But now, with thanks to God, a better HD team, better meds for Richard, and an absolute change in my own attitude and heart, that season has melded into a new one. I see my husband, and the marriage covenant in general, differently. Things are now in the “happy” and “going good” zone, but I still feel a little alone here in my JOY.

I think it has bothered me for a while, but I couldn’t put the exact words to the emotions I was feeling — now I think I understand. I realize that reading a post saying, “I’m having a good day.” can be hard to read when things are falling apart in your own life. I know how hard that can be because I have been on the other end of that relationship!

But, I now realize that the JOY and the good times, days and moments are equally as important to share, so we can rejoice with and encourage each other. Frankly, too many caregivers suffer alone and die early deaths because in the end they are undone by the disease they are fighting. Without encouragement, the tragedy, heartache, anger and pain of this disease sucks the life out of us.

A spirit of complaining and drudgery does NOT help any of us. In fact, it kills us, and it kills our families. It makes it such that our children never want to come home for the holidays or even to visit. I have not handled all of these things well in the past, so I guess more than anything I am just wanting to say that we need to celebrate each other as much as possible, and to not forget that laughter and joy is excellent medicine. Love is a healer and hope gives LIFE.

I have avoided this group for a bit because (as I said before) I was feeling isolated due to how well things were going. But now I’m back and I’m putting out these honest thoughts in hopes that I can help to build an authentic community that is healthy and helps to produce life-giving and long-lasting friendships. This disease is brutal and we all need friends, especially friends that understand.

By the way, I celebrated our 32nd wedding anniversary today by posting the news on Facebook. Richard saw the post and liked it, but there was no other response. I haven’t had a gift, a card or even a real hug in nearly 5 years. Richard can no longer provide those things, and that breaks my heart. For many years I was selfish and angry and could not see the difference between the HD and him, but now I do. Lord, have mercy on me for when I didn’t! Richard would love me back if he could. I know it.

Corina


A prayer for when you are having a moment of clarity…

“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 clarity that you bring to my life. But today, I want to especially bless you for the clarity of understanding that I now have, as fleeting as it may be. In scripture, you told Abraham and his descendants to set up monuments or institute holy days so they will remember Your goodness and blessings. Lord, please be a living monument in my heart. Never let me forget the lessons that I have learned, or the perspective on life that you have brought me. Amen”