Thoughts on Thanksgiving

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, in the U.S. at least, a holiday was celebrated (Thanksgiving) that had its foundation in the earliest years of our country’s formation, and was celebrated sporadically until it was formally defined by a Presidential proclamation in 1863. Although this event occurred during an exceedingly dark time in our nation’s history – our Civil War – President Abraham Lincoln declared the last Thursday in November to be a day of “Thanksgiving and Praise to our beneficent Father who dwelleth in the Heavens.” That much is history.

This year, Thanksgiving in the Porter household was a bit different. To begin with, Frannie and I can’t be out of the house at the same time now, so rather than going out to dinner, we decided to do Thanksgiving dinner here at home. I got a 12.68 lb turkey and fixed it with stuffing, mashed potatoes and gravy. Although the recipe specified 15 minutes per pound, the actual cooking time according to the all-knowing pop-up timer was slightly less that the 3 hours, 10 minutes and 12 seconds that the formula predicted.

In addition, Frannie and I ate on TV trays in the living room so we could be near to Janet – not exactly Norman Rockwell, but it got the job done.

Frannie in her Huntington’s T-shirt

As usual we did the “Five Kernels Of Corn” ritual, and while our mouths were still filled with the requisite thanksgiving and praise to God, this year some of the things for which we are giving thanks would probably seem a bit odd for those on the outside of our “community” who, looking in, might wonder what there is to be thankful for.

For instance, this year my first kernel of corn was, “I am thankful that Janet has started having bowel movements again, and is continuing to pass urine.” Strange, right? Not if you have ever cared for someone in the end stages of a terminal disease.

My second kernel of corn thanks God that things have worked out such that Janet can be in hospice here at home, protected from fearmongers that would isolate her from what little humanity she has left in order to “keep her safe.” Here at home, she has her husband and daughter to care for her, and while we might not be the most professional at times, we love her and care about her as a human being. Moreover, we recognize that the ultimate outcome is not in our hands. Although we might try to ignore the fact, this point is also true for all of us. Worry cannot add a single second to your life: all it does is steal your ability to live the life you have. There are no guarantees, and (with the possible exception of one or two) everyone ever born has died.

The third kernel of corn reminds me to be thankful that Janet is not surrounded by medical instruments and monitors to catalog every beat of her heart and measure every breath she takes. I did that once with my son Larry, who died when he was three days old. Those three days were beyond indescribable because, among other things, it turned his tormented little blue body into a machine that they had to keep going for one more hour, one more minute, one more second.

Unfortunately, that attitude can exist even without the monitors. And seeing humans as but mere machines has other implications, like the recent ruling in Denmark that says it is now permissible for a doctor to sedate a person to keep them from interfering with those who are “assisting” them with their “suicide.” Can you say “Orwellian?”

Kernel number four is for my daughter Frannie. She has been, and is continuing to be, amazing. She is daily dealing with things that women her age should not have to be concerned with. Together we have learned how to tag-team Janet’s care and how to work together to do such things as change the linens on a bed while it is still occupied.

The fifth, and last, kernel is for me a thankful reminder – and reassurance – that the words put down by the founders of our nation are most certainly true, that we, “ … are endowed by our Creator with certain inalienable rights … ” – a truth, by the way, which they did not create. It was another truth that they discovered, not unlike the truth of gravity or the truth of a (roughly) spherical world.

However, this bold statement changed the world, because it made clear the fact that human rights are not given by governments and rulers, but that they come from God. Secondly, the document as a whole proclaimed that that wasn’t true just for the citizens of thirteen British colonies in North America, but rather, this truth is fundamental and applies to all people regardless of who they are or even when and where they live. This point, in turn, should give rulers pause when they try to either take credit for, or abridge the rights of a people. Though it rarely does. I wonder what was the last thing to go through the minds of Benito Mussolini or Nicolae Ceausescu – I mean besides the bullets.

Therefore, while there might be much to be aware of, there is also much to be thankful for even in the hardest of situations. Yes, it is true that Janet’s health is failing day by day. But it is also true that when her end comes (whenever and however it might occur) she will not simply meld into some impersonal cosmic consciousness, evaporate into nothingness, or be patted on the head and told to go back and try again.

When she leaves here she will be going on to another somewhere, where she will meet the Someone who created her. Then, free of the Huntington’s Disease, she will be reunited with those who have loved her and gone before, “ … back a thousand generations, to the beginning of the worlds.”

In Christ, Amen ☩

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A prayer for when you are feeling less than thankful…

“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 all the manifest gifts that You bestow upon the world that You created. But today I want to bless You especially for the gifts that we remember on Thanksgiving. Please give me a perspective that allows me to see the blessing in all that You bring into my life. Then show me how to share those blessings and truths so as to enlighten the hearts and souls of my fellow travelers. Amen.”

Caregiving Beyond “Fear and Loathing”

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…

It is clear that death is drawing nearer. It would be nice if other things were equally clear. Dying is apparently a longer, more difficult process than I imagined. To be brutally honest, my main experience in watching people die has been via the medium of old westerns on TV or at the movies, where the process takes a maximum of about 30 seconds. True, my mother died a few years ago, but after standing by for 48 hours at her bedside, she waited until I went out for five minutes to get a sandwich, so all I got was a call from hospice that she was gone.

Old memories and attitudes continue to replay this week, though some are far from being “old friends” that have come to visit one last time. For example, this week Janet started to refuse her sublingual anxiety med because she said it made her constipated – and it does no good to remind her that she hasn’t had a bowel movement worthy of the name in several months, long before she started taking the sublingual meds. Her reply is always, “Well, I know my body!” – another very old tape that has been replaying a lot this week. I have often wondered how things might have been different if she had listened to her doctors, rather than fight them every step of the way. No doctor is perfect, but no doctor is 100% wrong, either.

We had to get her Foley catheter replaced because her original one was leaking. She has also become obsessed with the time. I bought her an “Alzheimer’s Clock” a couple months ago with letters big enough for her to read, but I suspect that she can no longer see things clearly that are more than a couple feet away.

This week we also decided to do Thanksgiving at home for the first time in several years. Typically we have gone out to keep things simple, but with Janet so ill, Frannie and I can’t be gone at the same time so I got a small bird and we are going to do it on our own again. In addition, we thought that Frannie’s boyfriend Leroy was going to eat with us, but his presence is required at his own family’s table – though he will be able to come by in the evening for pie and coffee. The end result is that we are going to have more turkey than we need for two, so if you are in southeastern Texas and alone, PM me and you can have Thanksgiving with us. Our place isn’t large but I think that we can fit in one or two more friends.

PS: If you like white meat, that is a “plus.” Frannie and I don’t.

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Maybe it’s the time of year, or maybe I am just becoming more sensitive due to where Janet is in the process of dying, but I seem to be seeing more posts expressing, as the title suggests, considerable “fear and loathing.” For example, fear of the future or the judgement of others, or self loathing rising from an unreasonable belief that you should do more, and complain less. The many other sources of these feelings are well known, so I won’t attempt to list them all here – besides you probably already in mind your own private list of triggers: that thing (or parade of things) that popped into your head as soon as you read the title.

This week I was conversing with a friend who has been amazing, caring for various members of her family for 40 years, yet she described being angry with herself for not doing more, and not being able to simply “snap out of it” when her latest loved one died. But it doesn’t take death to bring on the “fear and loathing.” I have seen the same issues come up when considering various care options for a loved one who is still alive. While the ”big one” is always the issue of whether it is time to consider a nursing home, it can also arise over issues such as needing to go to work, hiring an outside aide, preparing meals, or even asking for help from other family members.

And then there are the loathsome familial guilt-trippers. Like for example, the sister-in-law who lives two doors down and is constantly telling you what you should be doing to take care of your mother but refuses to lend a hand because, “She isn’t my Mom.”

The thing to remember when considering these issues is that there is a fundamental paradox involved. The people who logically have the least reason to feel these negative emotions (and guilt too, we can’t forget guilt!) often feel them the most strongly, while the people who have the most reason to feel them, rarely ever do. Why is that?

There may be many reasons, but a pattern I have observed over and over again is that good caregivers are never satisfied with the level of care they are providing. Consequently, they are constantly critiquing their own job performance and constantly finding it lacking. Combine this type of self judgement with the obvious fact that many caregivers are isolated from other human contact and you have the perfect setup for fear and loathing, with a heaping side dish of steaming guilt.

By contrast, we have what we shall call the good-enough caregiver. These people concentrate not on what the loved one needs, but what is good enough to be able to check all the right boxes. Just as the previous scenario is a recipe for fear and loathing, so this one typically ends in self-proclaimed absolution. “After all,” they reason, “what I’m doing may not be perfect, but it is good enough.”

But are those the only two options? Frankly, neither one is particularly appealing. For a little added insight, I once had a friend who was in AA. It was about this time of year and we were talking about how he gets through the holiday season sober, and his answer was telling. He said the way to get through it in one piece was to not get “too.” When I asked him what I meant he said, “You know: too happy, too sad, too depressed, too carefree, just don’t be ‘too’ anything. To stay out of the ditches, steer for the center of the road.”

So what does steering for the center of the road look like in caregiving? Well, the first step is make sure that we are making the most important thing, the Most Important Thing. Which is to say, making your loved one’s care the central focus of the exercise.

Next, make room for growth. We need to recognize that while constantly looking for ways to improve the quality of care is a good thing, that improvement is itself a journey, not a destination. Whether you are caring for your spouse as I am, or building automobiles like Toyota, the proper goal is not quality, but continually improving quality. So rather than beating yourself up for not as being as good as you will be tomorrow, acknowledge yourself for being better than you were yesterday.

Finally, we need to recognize that we do not have unlimited resources. While there are many things that we as caregivers can and do learn to do ourselves, there will often come a time when our loved one’s needs will out-strip what we can do, or learn how to do. When those situations arise, it is time to call in the people or services that can provide the needed care. In that case, your job as caregiver is to help identify, and set up the services that will provide what your loved one truly needs – which might require a bit of creativity.

For example, there was a situation where a daughter was worried for her parents, Her mother (84) had dementia and her primary caregiver was her father (86). It was absolutely clear to everyone in the family that Mom needed to be in a skilled nursing facility, but Dad wouldn’t hear of it. In his noble mind, it was his job to take care of his beloved, not work for some stranger. The solution: the family found a care facility that they could go into together and share a room. This arrangement gave him the dignity of continuing to fulfill his duty to care for the love of his life, while giving him the support and care that he was increasingly needing too.

So take heart, if you are worried about how good a job you are doing, you are already over the first and largest hurdle: You care and are dedicated to the best of care for your loved one. Now just steer for the center of the road.

In Christ, Amen ☩

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A prayer for when you are feeling guilty and afraid…

“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 divine wisdom and care that gives the cosmos its form. But today I want to bless You especially for the reassurance and strength that You provide. Thank You for holding me up when I feel weak. Thank You for the gift of life that You have bestowed upon me, and that You allow me to share with { Name of your loved one }. Show me every day how to do the job better. Amen.”

Tempus Fugit

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…

I don’t know if I mentioned it in the past, but a big concern with Janet, or anyone at this stage, is the operation of their kidneys. Which is to say, you worry over whether they are producing enough urine. We had a scare earlier when she went about 36 hours without wetting a diaper. But then it “let go” all at once in a veritable flood. After this cycle repeated a second time, we made the decision to insert a Foley catheter to help her pass urine. This procedure has been a rousing success in a couple ways: First, she is much more comfortable. Second, she is drinking more – no doubt because she feels more at ease doing so without the constant sensation of an overly-full bladder.

Unfortunately, her confusion is getting worse daily. In particular, she keeps asking me to help her to lie down in bed – when she’s already in the bed. Sometimes she thinks she is standing up, while at other times she thinks she is lying on the sofa that she used to sleep on. Just this afternoon she surprised me by asking me how my ex-wife Susan was doing.

I also realized that I need to be very careful about what I say around her. Even when she seems to be asleep, she hears conversations and gets worried about things she doesn’t understand – which is a lot. Been feeling very isolated this week.

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This week’s post marks something of a milestone. I have been writing this blog now for 52 weeks, or one full year. To me this feels a bit unreal for a number of reasons: To begin with, it doesn’t seem like it could have possibly been a whole year, even though it has been a very full year. While it is true that I had started healing by the time I began writing the blog, I was still very much an emotional basket case in November of 2019 and I feel amazed and incredibly blessed to still be standing a year later.

A year ago, Janet was in the midst of her violent, angry phase where she would strike out physically at anyone or anything that angered her, and at that time I angered her a lot. So not knowing any better, I guess, I just wrote about what I was thinking, reading, and feeling – everything. Although I probably wouldn’t have said it in this way back then, the bottom line was that I was tired of hiding. I was tired of having to maintain a public face for the world around me. Looking back, it is no surprise that this openness began healing some of the wounds in my heart – and seems to have helped a few other folks as well.

Looking back at some of my early posts, I realize that many of them were written in a state of near panic as I was trying to figure things out and keep my head above water. Some of the places where this panic is most obvious is in the prayers with which I closed every post. While some might consider this fact to be ironic, to me it has always made perfect sense. Consider, for example, the Psalms. They aren’t all lyrically enraptured reveries on the wonder of God’s creation – though a lot of them are. Many are also simply David complaining to God about how much his life at that moment stinks, but which nevertheless end with affirmations that everything really is under control.

I have often wished that Christians felt as open to complaining to God as our Jewish brethren do. How different our spiritual lives would be.

Something else I have learned is that the human body is a truly amazing thing. A year ago, I was in a rush to finish the first seven posts, because the way things were going I didn’t think Janet would last till the spring, but here we are in November. A year ago, Janet weighed 185 lbs, and when her weight dropped to 100 lbs I was sure death was very soon. But now she weighs less than 80 lbs – and still she keeps going. And if the body in general is amazing, how much more so the human brain?

The other day Janet and I were talking and she asked me how Dr Furr-Stimming (her neurologist) was doing. Janet was worried that her death would make the doctor feel like she had failed – a statement, by the way, that is so Janet. But it got me thinking, when was the last time you gave your loved one’s doctor a hug. Whether we are talking about Huntington’s, Alzheimer’s, Parkingson’s, Lewy Body or any of the many other degenerative neurological conditions, these folk go into work everyday knowing that nobody ever “gets well.” They, and the entire medical team, come to work day in and day out understanding, better than most, that behind all the platitudes lies the same grim reality: every one of our patients is dying and often there is little that we can do to even slow it down. Yet, they keep coming, prepared to face down the abyss.

In truth, they deserve far more than a hug, but maybe we can start there.

I have also learned that who you are coming into this experience is both a boon and a challenge. My approaching things as an engineer, the “boon” side of the equation included a predisposition to learning and figuring things out. Several posts are the direct result of my researching a topic that I needed to understand in order to better care for Janet. The “challenge” came from the innate drive that engineers have to fix things. However, in situations that are not “fixable” this drive can lead to frustration and anger. The lesson here is that regardless of how you were prepared for your journey as a caregiver, there is no universally perfect preparation, only what is needed for your specific situation.

Note also how I phrased that last sentence. The wording, “how you were prepared” was deliberate. At times it will feel like you have just been thrown into the deep end of the pool without any swimming lessons, but such is not the case. The truth is, no matter your background, it contains a veritable treasure trove of gifts for your current challenge, you just need to find them. And remember that the word “gifts” implies the existence of a “Giver,” and the presence of the gifts is an assurance of the Giver’s concern and involvement. The Giver is not silent.

In Christ, Amen ☩

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A prayer for when you are on the way…

“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 our guide and provider. But today I want to bless You especially for all the ways you support me, the people who you bring into my life, and the knowledge and insights You bestow. But thank You especially for the opportunity to serve others. Amen.”

The Veil Grows Thin

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 has been a week for spiritual conversations – some of which I have been a party to and some that I have not. However, when talking to someone with dementia, you have to always be aware that words do not always mean what they seem to mean at first blush.

For example, this week, out of the clear blue sky, Janet asked me, “How do you get to Heaven?” I first tried to reassure her that she had accepted Jesus many years ago, so there was no reason to worry. But then she started asking followup questions that made me realize that, in this particular case, the answer to the question wasn’t “accept Jesus as your personal Lord and Savior.” For Janet, this question wasn’t about spirituality, but rather was a matter of logistics.

Remember, this is the woman that would not leave on a trip until she knew exactly what roads we would be taking, where we would stop for gas, and which hotels we would stay in along the way. She was asking about Heaven in the same sense that one might ask, “How do you get to The Grand Canyon?”

She is saved, she knows she will be in Heaven. She was wanting to know how she is going to get there? What does she need to wear? Who will come get her? And so on. Think: prepping for summer vacation.

The lesson I learned was that just because I understand the words, I shouldn’t assume that I understand the question. This problem exists in other languages, but in English there can be a certain ambiguity that used to be exploited masterfully by comedians such as the Marx Brothers or Abbott and Costello – and still is by politicians and lawyers.

Sometimes a loved one also needs to be reassured that everything will work out in the end. For example, every morning, I ask Janet how she is doing. One day this week when I asked her, she said, “Not good.” When I inquired as to why, she said, “I grew a conscience overnight.” So I asked her what that meant. She said she was sorry, and she asked me if she was a “bad person.”

I told her that she is sick with Huntington’s Disease and that is responsible for much of what has happened. And the things that she is responsible for have been forgiven, because Jesus died for us.

“So God and I are good?” she asked.

I assured her that she and God were indeed good. That’s when she got hungry, so I gave her some yogurt and she fell asleep.

Finally, this week, I was out in the garage doing a bit of cleaning up. Going through a dusty box laden with cobwebs, I came across an old journal of Janet’s. When Janet and I first met, I had bought her this journal, advising her to fill it with, “nothing but thoughts of love, peace and goodness.”

The thing is, I didn’t think that she had ever used it – but she did. On January 31st of 1985 she used it to make a list of good things in her life. This was part of that list:

January 31st, 1985

This entry is the first record of her expressing love for me. Is this precious to me? You can’t even begin to imagine.

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I thought of this topic for a few reasons. First, veils are a common religious and cultural symbol or metaphor. For example, veils are mentioned numerous times in Scripture. Such as in Exodus, where Moses wore a veil after seeing God.

Then there was the veil used in the temple to segregate the Holiest of Holiest (which represented the actual physical presence of God) from the rest of the temple. And, of course, there was the tearing of said veil from top to bottom when Jesus finished what he came to do.

Finally, there are great hymns like My Hope is Built on Nothing Less, the second stanza of which reads:

When darkness veils his lovely face,

I rest on his unchanging grace;

in ev’ry high and stormy gale,

my anchor holds within the veil.

By the way, if you don’t understand the imagery of the last line, do a little research – it will be worth the effort. Hint: As a Christian symbol, the cross didn’t become common until about 400AD. Before that the primary symbol – especially during the Roman persecutions – was the anchor.

And then there are all the ways that veils appear in popular culture, including wedding veils. Then in literature (and not a few questionable jokes) we see references to things such as The Dance of the Seven Veils where veils are used as a device to actually intensify the meaning or power of that which is being “hidden”. And we can’t forget all the places where it is used in the negative sense, such as the unveiling of statues, paintings and plans.

The other reason that it came to my mind is a common belief that when someone is near death, the veil between this world and the next can grow thin, and this week, we had an experience that was – well, I don’t know what to call it, except that Janet seemed to be seeing beyond the veil.

Janet was asleep, when suddenly she woke up and called me over to her bed. She then asked me what my son’s name is.

I said, “David?” (My son who lives in Virginia.)

“No.”

“Larry?” (My son who died shortly after birth.)

“Yes! I’m in Heaven!”

“Do you see Larry?”

“Yes.”

“What does he look like?”

“He’s a grown man with something around his neck.” (Larry was strangled by his umbilical cord at birth.)

Then she repeated, “I’m in Heaven!” several more times, and went back to sleep.

I guess the biggest question that I have had out of the whole experience is this: Why was she seeing a relative of mine? She didn’t see her Mom or Dad, her late brother John who also had HD, or even her favorite aunt (Em) who was also her godmother.

Perhaps it’s similar to a week or so ago when I related that she included my daughter Catherine (Larry’s younger sister) in a list of her daughters. It would seem that my family is now her family, which makes me glad because one of the promises that we made as part of our vows was for our home to be a “place of healing” – and it has been.

In Christ, Amen ☩

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A prayer for when you are surrounded by strangeness…

“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 magnificence of Your creation. But today I want to bless You especially for the glimpses that You provide of the cosmos from Your perspective. Even though many things about the future remain veiled from my eyes, I can be certain that I will have a place in it with You – and I can be certain that it will be better than anything that I could possibly imagine. Amen.”

Nursing Home? Now?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you need wisdom and insight…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your all-knowing presence. But today I want to bless you especially for the promise to give knowledge to those who earnestly seek it. I need your wisdom and discernment, please. Amen.”

Life Interrupted

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

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

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

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

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

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

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

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

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

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

“Oh?” she said, feigning surprise.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In Christ, Amen ☩

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A prayer for when you are facing the end…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your eternal presence. But today I want to bless you especially for offering us an invitation to enter into your joy. Thank you for redeeming not just my future, but my past as well. Amen”

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”

For the Men Folk

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 stopped eating. As I write this, Frannie and I have been able to get her to eat some soup from an Italian restaurant, but there were days when she didn’t eat at all. Her weight is below 100 lbs. How long can someone with such a low body weigh last with no – or at very little – food?

Janet and her Dad
This picture is of Janet on our wedding day with her father (from whom she inherited the gene). I have always loved this picture because it shows the little “derby” that went with her tulle veil – though to me it always looked more like a small white cowboy hat.

Janet has started taking naps in the middle of the day; in fact, she’s sleeping almost non-stop now. Friday morning we had a meeting with a hospice nurse, and she has been accepted back into home hospice, so we will be receiving visits from a home health aide three times a week. Later that day we took delivery on her hospital bed (which she loves) and some other miscellaneous equipment.

The only remaining question is how long will she be needing them?

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When I first started coming to the support forums, the first thing I noticed was that the demographic of the participants was overwhelmingly female. To me this fact was curious because I knew that HD affects men and women in equal numbers. Therefore, it seemed logical that there should be about equal numbers of male and female participants on the forums.

At Janet’s next HD appointment, I talked to the clinic’s social worker and related my observation. Her reaction was, “Oh yes, they have done studies and it’s a real thing. Male caregivers rarely reach out for support, and male patients with no woman (wife, daughter, etc) caring for them also don’t get the support they need.”

Ok, but is that observation accurate? Well, as they used to say back in the 60’s, “It’s a mixed bag.” On a gross level, my feeling about numbers was pretty close. An organization called the National Family Caregivers Association did a study a few years ago across all chronic conditions and determined that in the US there are about 54 million people who are serving as primary caregivers for a family member. Of that number 44% – or just shy of 24 million – are men.

But therein lies a problem. If the social worker is right that men just aren’t getting the support they need, guys should be dropping like flies, but statistically speaking, we just don’t see that happening. So it would seem that we men are getting the support we need, but it looks different. That realization, in turn, got me wondering: what other things do men do differently in a caregiving situation?

But before we go any further, I need to issue a couple warnings:

  1. Generalizations: There are a lot of them coming up. The point is not to try to force people into boxes with roles to fulfil. Rather, learning about generalized behavior can be a path to self discovery because, even if the fit isn’t perfect, it can nevertheless give you insight into how you behave and react.
  2. Exceptions: Yes, there are always exceptions. This point sort of goes with the previous one about generalizations. People are not stereotypes, so if you don’t fit the mold: Good for you! Celebrate the parts of you that don’t fit the pattern. Often I find that those “ill-fitting” bits are actually gifts that make me better suited for what I need to do.

So starting with the question of where do guys get support, we need to recognize that “support” can look very different for men.

To begin with, it is a well-recognized fact that men are not “joiners” – meaning that associations outside their inner circle of family and friends tend to be transient. In discussing this tendency, psychologists often like to think in “evolutionary terms” and so will wax philosophical about wandering bands of nomadic hunters meeting by chance on the vast Serengeti plain and agreeing to temporarily work together to bring down a mammoth, giant sloth or something.

For me, though, it matters little whether this trait was “evolved” into men, or as I feel is far more likely, consciously put there by our Creator. The point is that the support structures for men clearly tend to be less formal and more ad-hoc. Consequently, it is reasonable to have fewer men willing to “sign up” for a support group, and for fewer still to actively participate.

But, if support doesn’t occur in formal groups, where does it happen? Sometimes in a tree stand when there doesn’t appear to be a deer in 100 miles of you. Sometimes support occurs in a boat in the middle of a lake, when nothing is biting. And sometimes it happens during a lull in an oil change, or over a beer while you’re enjoying the pleasant coolness of dusk and watching the sun go down.

While, there will be those that will complain that the last paragraph was written from a rural North American (i.e. red-neck) perspective, the point is that support happens in unpredictable and unplanned ways. Support can also occur at work, in a pub or cafe, or riding on a commuter train.

Next, it should be noted that, paradoxically, many men will only argue with close friends. Why? First, it’s because the only opinions that most guys really care about are those of their friends. Why get into an argument with someone who’s opinions you don’t respect?

Please note that in making this statement I am drawing a distinction between having an argument (or making an argument), and just yelling at someone. It’s the difference between having a “meaningful dialogue” and “sending a message” – a thoroughly offensive cliché, by the way. For completeness sake, I should point out that there is also something called expository speech where someone is trying to convince someone of something. In this framework, expository speech falls somewhere between arguing and yelling at people – exactly where it falls, depends upon the topic and the speaker!

Secondly, men argue with friends because it is safe to do so. With a friend you can disagree and shout and yell, but you never have to worry about losing that which is really important: your friendship. This point is so important because the best conversations occur when personalities, identities and ego aren’t involved.

Therefore, among men, expressions of friendship can be more (How shall I say this?) “abrasive.” For example, once while I was in the Air Force we once flew into an Italian Air Force Base outside of Pisa. Two local civilians came out to service our plane and got into a disagreement with each other about something. Soon they were toe-to-toe screaming at each other and gesticulating wildly. Concerned, I asked another one of the other ground crew whether we should do something.

“No,” he said, “they’re brothers-in-law. They always yell at each other. They’ll be fine.”

And they were, I saw them a hour or so later laughing and joking over beers.

In a similar vein, it should be remembered that it was men who invented “snipe hunting” and many similar “bonding” exercises…

There are also differences in the way men approach challenges, in that we are problem solvers. We like to approach challenges logically and dispassionately because it is built into our DNA to react in that way. For us our #1 goal is to, “work the problem.” Hence, we try to shut out everything that isn’t part of the solution – including emotion.

So you see, it’s not that we don’t care, but rather it is precisely because we care very deeply that we appear to shut down emotionally. Perhaps this is the reason that men are so good at handling crises. Of course the other side of that coin is that we try to bring that same level of intensity to the management of chronic situations, so we tend to burn out (a lot) faster.

So where do I fit into this puzzle? Well remember what I said above about “generalizations” and “exceptions?” When I was a kid we would go to visit my Mom’s family in Iowa (a little town named Morse, near Iowa City). At these family gatherings, the men folk would, depending upon the season, congregate in either the living room or on the front porch. They would talk about cars, tractors and the price of hogs and corn – all important things to know about if you live in Iowa.

But the women – my Mom, grandmother, and always a couple aunts or great aunts – would gather in the kitchen and talk about things that sparked my imagination. They would have wonderfully loud, joyous conversations. In some ways, fixing dinner was like a religious ceremony because everything meant something.

For example, there were the holy relics:
“That’s your great-great-grandmother’s roasting pan.”

And rubrics:
“Always stir cake batter to the right and never reverse directions – it will spoil the cake.”

History lessons:
“Did you know, when I first started teaching, teachers weren’t allowed to be married?”

And applications for daily living:
“Don’t use all the buttermilk! Pappy will want some to sop his cornbread in after dinner.”

The bottom line is that dinner wasn’t just about food, it was about telling and retelling for the millionth time the story of who were. So I guess while I unabashedly exhibit many of the male traits mentioned above, thanks to the strong women that were around me as I grew, I have also come to wear my heart on my sleeve, at times rather more than what is comfortable.

Because I understand how remembered stories and traditions can hold us together when times are hard, I may someday share some of those stories. I may write about my grandmother who was a teacher in a one-room schoolhouse, and often said that the main thing you learned in a one-room school was how to be a good citizen. Or I might talk about her sister, my Aunty Butch (pronounced to rhyme with “hutch” or “crutch”) who gave up the chance of having children of her own to protect her best friend’s children from an abusive father.

We’ll see…

Finally, we need to understand that culturally, men are horribly ill-prepared for the role that they find themselves in when caring for a dying spouse. Think about it for a minute, little boys and little girls get dramatically different messages growing up. Little girls growing up see, modeled in the lives of perhaps their mother, but certainly their grandmothers, and ladies that they know socially, the truth that someday their husband will die and they will be alone again.

This fact is borne out by insurance actuarial tables, and even government statistics. The US Census Bureau has pegged life expectancy in the US at 77.1 years for men, and 81.9 years for women. While that knowledge certainly doesn’t make it any easier for women, when their spouse dies, they at least have role-models in whose footsteps they can follow.

But now think about little boys and the message that they get growing up. They witness the same world, and read the same statistics but have a very different reaction. I have to be honest, when Janet and I got married I didn’t hear the pastor say, “Till death do you part…”. What I heard the pastor say was, “You are going to be married to this beautiful woman for the rest of your life.” I mean, that’s the way the world works right? There’s a law about that or something … isn’t there?

For me, this point is getting to be very, very real. As I stated earlier, Janet is eating less and less, and sleeping more and more. What’s more, I know how this movie ends: one day I’ll go downstairs and she won’t wake up. Then what? The only widower that I knew personally was a great-uncle who started trying to act like a teenager again – it was embarrassing.

When our spouses die, men don’t usually have the benefit of reassuring role models to fall back on. Yet even in that dark time, we aren’t ever really alone. Even when the world seems upside-down and tilted off-center, even then we worship Emmanuel – God With Us.

In Christ, Amen ☩

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A prayer for when you are wrestling with what happens next…

“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 foreknowing wisdom. But today I want to bless You especially for the certainty that I can have that, even without role models, everything will work out as it should. Amen.”

Mirages

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…

Janet is continuing to eat less and less. This week on Facebook, a memory picture came up of Janet back when we could go out to eat. At the time of the picture, we had gone out to a Cajun restaurant here in Houston and she probably weighed 185 lbs., or thereabouts. Now she weighs 100 lbs., give or take a bit.

Lately I have been thinking about the past and our life together – a lot. For instance, I have been remembering when she was pregnant with our son (our first child) and we were trying to spruce up the house that we owned in Norwood, Massachusetts. It was during that effort that we learned the “joys” of such things as removing horsehair plaster and working with turn-of-the-century electrical systems.

It was also during that remodeling effort that Janet got it into her head that what the house really needed was a fresh coat of paint.

Now the thing to understand is that while the house itself was only two stories high, due to the way the land sloped and the way the basement was laid out, the second floor in front was actually nearly three stories off the ground.

So we bought the paint, a spray gun, a ladder and all the other miscellanea that one needs when one is going to paint a house. After we got all the stuff home, I discovered that Janet expected that SHE was going to paint the house. When I tried to point out (quite reasonably, I thought) that she was eight months pregnant and shouldn’t be climbing up and down ladders, she pointed out that I needed to mind my own business. After all, she had painted a house before – even if that house was a single-story bungalow.

In the end (I thought) we agreed that she was not to be climbing up and down ladders. Moreover we would get professional painters to handle the eaves of the second floor, which were a full three (scary) stories off the ground.

But 2 days later, I got home from work and there was my very pregnant wife painting the second story eaves. Never did figure out how she got the ladder up that far…

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A basic truism today is that much of society is consumed with the issue of identity. And like so many things, people today have paradoxically redefined the word. Rather than meaning who you are personally, it is seen as a way of indicating what group you belong to. Don’t get me started on that degenerative practice!

But even when the word is used properly, it’s crazy some of the ways in which people choose to identify themselves. For example, when growing up I had an aunt who took great pride in identifying herself as a [blank] of the Rockford Illinois, [blank]s. I guess we were supposed to be impressed.

Then in the 60s and 70s, identity became something for which you had to search – often in exotic locales. In fact, it became something of a cliché for someone to say they were taking a trip or undertaking some other kind of experience in order to “find themselves …” Over time, as the baby boomers grew older and became more settled, the story evolved into one of a successful, but unhappy, person abandoning their comfortable life and taking up a quest to figure out “…who they really are…”

A popular subgenre of this type of story concerns a successful professional person who thinks that they have life pretty much figured out, but for some contrived reason, moves from the city to the country (or vice versa) and there discovers “…who they really are…” – often in tandem with a new love interest. Here in the US, there is an entire TV network (called The Hallmark Channel) dedicated to broadcasting seasonally-inspired versions of this story 24/7.

While a key part of all such modern fairy tales is the idea of making a clean break and starting over, reality has an unpleasant way of intruding. Even if you aren’t a successful professional, you can find yourself being forcibly evicted from your warm, safe, comfortable rut. When my wife first got sick, she did some counseling where she was advised to remember that, “You aren’t your disease.” And for a while, I guess that was true. But as time and the disease progressed, it became increasingly difficult to maintain that facade.

Moreover, it wasn’t just Janet that was going through changes. I was desperately trying to figure out where our life was going. Consequently, there were two identities in a constant state of flux, but what are the odds of two erratic lives staying connected the way they had been before?

In my own experience, as well as those of others, it is not uncommon to hear someone invoke or describe an “Alice in Wonderland” feeling. For instance, at one point, as Alice wanders about trying to find her way, she encounters a hookah-smoking caterpillar.

Alice and the Caterpillar
Alice and the Caterpillar

“Who are you?” said the Caterpillar.

This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I – I hardly know, sir, just at present – at least I know who I was when I got up this morning, but I think I must have been changed several times since then.”

“What do you mean by that?” said the Caterpillar sternly. “Explain yourself!”

“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.

“I’m afraid I can’t put it more clearly,” Alice replied very politely, “for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.”

Whether you are a patient or a caregiver, that is the haunting question – “Who are you?” – even as society imperiously demands that we explain ourselves. Moreover, we seem surrounded by things offering hope for our sad condition, each bearing helpful little tags reading, “Eat Me!” or “Drink Me!” Little wonder the 60’s drug culture fell in love with the book.

One pill makes you bigger,

One pill makes you small,

And the ones that mother gives you,

Don’t do anything at all.

Go ask Alice, when she’s 10 feet tall…

Jefferson Airplane (White Rabbit 1967)

Like Alice (and perhaps Grace Slick), we sometimes feel so big that we are the unwelcomed center of attention, while at other times we feel small, insignificant and ignored. And yes, being so many different sizes in a day is very confusing.

The basic problem is that we always define our identity, who we are, relative to something or someone else. My aunt derived her identity relative to her ancestors and their perceived social standing. People who went out trying to find themselves were searching for an identity based on novel experiences that were bigger than the familiar world they grew up in. The folks in the Hallmark Channel movies are simply exchanging an identity based in one set of professional and personal relationships for one based in a different set of professional and personal relationships.

But those relationships are the identity’s vulnerable spot. If something happens to the relationship, the identity or identities deriving from that relationship crumble. And what is there that isn’t susceptible to loss and decay? Marriages end in divorce or death, siblings are lost, children grow and move away for lives of their own, careers end, pets die, and organizations come and go – or change beyond recognition.

As far as the eye can see, everything around you, animate or inanimate, has a life span, a service life, an expiration date, a timeout, a proper season, or a shelf life.

So I might say, “Ok, if that’s the game – I choose not to play it!” Unfortunately that strategy doesn’t work either. Even if I eschew all contact with the world and become a hermit, I am still defining myself in relation to the world – in this case a world in which I don’t wish to participate. But that identity is as vulnerable as any other. Remember the classic children’s story Heidi? All it took was for a little girl to wander in and demonstrate that the world is not so terribly horrible and the grandfather’s identity as a curmudgeon is blown sky high.

So to recap, nothing around us is permanent and we can’t even “opt out” of the predicament. So is there no hope? Are we doomed to an endless cycle of traumatic relationship collapses and identity rebuilding exercises? No, there is good news to be had. The simple (though far from easy) solution is to base our identity on a relationship that is unshakable and indestructible to the point that it can survive anything – even death.

“But,” you might object, “didn’t you just say that everything around us is impermanent?”

Actually, what I said was, “As far as the eye can see…” Maybe we need to try looking where the eye can’t see.

“Sounds like we are back in ‘Wonderland.’”

Hardly. If you think back, last week we talked about the different reasons that people might have for running a race. One person ran as an expression of who he was as a human being. However that statement means more than simply identifying with a particular skill, which can obviously fade over time. For this runner, it meant that he ran because the skill was a gift that God had given him. Hence, he focused on God and giving Him pleasure by using that gift to the fullest extent possible. So while one gift might fade over time and be replaced with another, the runner’s identity remained untroubled and at peace because it was based on the identity of the Giver, the One who is never ending, and Who is constant.

There is our way forward: An identity that is based on God and His intent in creating us. As I have said many times in the past, whether you are the patient or caregiver, what you are experiencing is not random. There is a point to it all, and that point is to transform you into the being you were created to be.

By the way, as Moses (משה רבנו) discovered at the burning bush, God has a really good answer to the question “Who are you?” He simply said, “I am. I am the One who is.”

In Christ, Amen ☩

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A prayer for when you aren’t sure who you are…

“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 also being the basis for the ultimate reality of who I am. Help me to discern the difference between who I am and the temporary labels that I get from the world. Amen.”

What is Success?

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 seems to be going through cycles where one moment she wants to be left alone, but the next, she wants to be involved in conversations and decisions. In fact, Frannie is experiencing increasing upset over Janet’s “eavesdropping” on conversations and then trying to participate in them – even when it’s clear that she didn’t really understand what she heard. I seem to be back in the mode of getting between the two of them to prevent verbal altercations.

Another thing I have talked about in the past, that bothers Frannie greatly, is Janet’s refusal to use her walker. I have come to realize that short of tying her down, there really is no way, as a practical matter, to stop her from getting up and toddling around the apartment. It strikes me that perhaps refusing to use the walker is her last act of rebellion.

Come to think of it, that word pretty well sums up Janet’s life: “rebellion.” Whether spiritually, politically, educationally or any other way you can name, Janet has always seemed to have her BS detector (on a scale of 1 to 10) hardwired on 11. She has left churches over misbehavior of clergy. Over two election cycles, she worked tirelessly for Perot. Even in her current diminished cognitive state, she still talks about his prescience in seeing where previous administrations were taking the country.

I have written before about how, when she was teaching in public schools, she tailored lessons for individual students. But she also cared about the small stuff. For example, Janet is from Massachusetts and for those of you who have never been there, yes, they do talk funny. But Janet was always careful to model correct pronunciation. In fact, one of the ways I could tell she was ill was if, in response to the question, “How are you feeling?” she would say “mediocah” (mediocre).

But Janet was always a rebel with a cause. She never believed in tearing things down simply for the pleasure of seeing others fail. For her, there was always a reason for her rebellion: to make the world a better place.

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The post last week talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success. However, in the context of caring for someone with a terminal illness where the patient always dies, what exactly does success mean?

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver for someone with a terminal illness? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. Consider: a foot race has a clearly defined beginning (the starting pistol goes off), a predetermined length, a precise end (when the runner breaks the tape at the finish line), and a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics
The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades. We talked about the lack of a definitive end last week.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations. A point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire. Focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams, you soon discover through the film that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality he lived, Abrahams had a very different reason for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But it called for a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race. An approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure isn’t judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

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A prayer for when you are feeling spent…

“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 gifts that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank you for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen”