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Hard Truth

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

Last week I began to realize how crazy life was getting. I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the first one last week and had a pretty good reception, so let’s try another one.

As with last week, the procedure was for Jean to go through the posts and identify one that she felt was an “evergreen” topic. It originally bore a title that indicated it was about loneliness – but it really wasn’t. Hopefully this title is better. It originally ran February 9th of 2020.

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Something that I have been trying to track down for a while now is the source of the intense loneliness that I am experiencing. Over this week and next, I want to look at some of the sources and resources that I have identified. Note that some of these sources will be common to all caregivers, while others may only apply to men. I don’t know – we’ll see.

My first thought was that the sense of being alone was related to Janet’s inability (or at times unwillingness) to say, “I love you.” This is certainly a common enough complaint. I have read many dozens of heartbreaking posts on Facebook with the same refrain: If only I could hear my husband/wife/child/mother/father tell me that they love me just one more time, but now they are apathetic and distant – or conversely they are angry and abusive.

Unfortunately there is a lot of bad advice being handed out in response to these posts – often by people who, though presumably well-intentioned, are in fact far more interested in maintaining the façade of normality than they are in solving any problems. Typical of this sort of response was one I read the other day that asserted, “HD or no HD, no one has the right to treat you that way!” This statement has so much wrong with it that it’s hard for one to decide where to start. The main issue for me, is that the speaker clearly has no idea how devastating a disease HD is for the patient. Instead, they seem almost totally fixated on their pain, their problems, and their rights.

If that is your view, let me clue you in, Buttercup, HD isn’t a head cold that you can get through by “toughing it out.” It is also not a choice like drinking or abuse. And your loved one is certainly not faking it or trying to selfishly manipulate you. Rather, you and the afflicted are living in a nightmare reality where any sense of “normal” is at best wishful thinking, and at worst a cruel hoax. If you haven’t grasped this fundamental truth, you need to do so now because there are no easy ways out. There are, in the end, only two options: you can choose to stay and be called a saint, or choose to leave and be called a selfish jerk – or something worse. In either case, the label will be correct. There are no other alternatives.

Then there are those who will say, “Oh, but what about the children? You have to protect the children!” That is undoubtedly true, but there is a hard truth to be recognized here as well. Children learn from what they observe. If they see Mommy or Daddy knowingly and mindfully sacrificing themselves out of love for a spouse or another loved one, the children will learn the depth of commitment and the holiness of sacrifice.

If, however, they witness Mommy or Daddy abandoning a loved one when the stuff starts to seriously hit the fan, they will learn that there are limits to the love of Mommy or Daddy. And let’s not forget that we are talking about an inherited disease. They will also learn that if I develop this disease, Mommy or Daddy will have no qualms about abandoning me too.

But even if they don’t inherit the gene, the problem of “limited love” still exists. The children can and do start obsessing about what else could cause them to be abandoned. What if I’m gay, or start drinking, or use drugs, or marry someone they don’t like, or fail at school, or start practicing a different religion, or wear too much makeup, or … ?

For her amazing first album “Jagged Little Pill,” Alanis Morissette wrote an autobiographical song named Perfect. This song is pertinent to our current conversation, because the last line has the parent affirming:

We’ll love you just the way you are,
If you’re perfect.

Yes, by all means, let’s “protect” the children – but from what? There is no demonstrable benefit to shielding even small children from harsh realities and hard truth. In fact, children are amazingly resilient when it comes to dealing with adversity as long as they know that they are safe. To see what I mean, think about the kids who are suffering from juvenile HD – like an amazing 13-year-old girl I knew about in Michigan who didn’t live to see 16. Her strength and courage was truly humbling. And then there are the siblings who, like that girl’s two big sisters and little brother, take it upon themselves to be best friends, advocates, playmates, and defenders for their sick sister, even though they know full well the inevitable outcome.

Finally, what is all this talk about rights anyway? If someone was injured in a car wreck, would you go running up to them and demand to know who gave them the right to bleed all over the street? Well, maybe if you are in a Monty Python skit, but no rational person would behave in that way. When you are cut, bleeding is not a voluntary act. However, expectations change when someone’s brain is dying. Suddenly the sufferer becomes responsible for all of their symptoms, and they are held accountable in ways that no other injured person is ever expected to be.

So if that comment is typical of the bad advice out there, what constitutes good advice? Well, first and above all, learn as much as you can about the disease that you are fighting so you can always maintain a realistic view of what is happening and what is possible.

But the most important thing we can do to handle apparent rejection and/or anger from a loved one is to remember that regardless of how bad or random things feel, there is someone in control: God. Of course people will put forward objections to what is for them a very hard truth. For example, there are the people who claim to be atheists because they couldn’t worship any God who would create HD. As much as I would love to address this view, there are so many fundamental errors in that one statement that addressing them in even a cursory way would take us far beyond the scope of this post. Still if you want to discuss it, send me a comment and we can talk. Alternately, C.S. Lewis wrote an exceptional book on this general topic called The Problem of Pain. As it so happens, I have 10 copies of this book on hand and I will ship a copy free of charge to the first 10 mailing addresses that are left in a comment to me.

A far more manageable point is illustrated in this hypothetical conversation:

“If God truly loves my husband/wife/etc./etc./etc., why isn’t He doing more to help them?”

“Well actually He is, and when you think about it, it’s really miraculous what He is getting done.”

“Oh yeah? What is God doing for them that is so miraculous?”

“You. He is doing you.”

Do you think your relationship with your loved one is an accident or random chance? It is not. As caregivers we need to learn to recognize the ongoing miracle that is our life and relationship with the one for whom we are caring. As an example of what I’m talking about, consider my case with Janet. When Janet first started experiencing physical symptoms, we were living in Knox County, Ohio. Despite going to multiple doctors, she was getting a variety of different diagnoses as to the cause of her troubles.

Then “coincidentally” I lost my job and the only one I could find was in western Pennsylvania. But when the doctor there looked at Janet, he realized that there was something neurological going on and gave us a referral to a neurologist.

The neurologist who “coincidentally” we were referred to was basically a bulldog in a white lab coat. I have no idea how many things Dr Brian Cotugno of Washington, PA (bless him) tested Janet for, but his gut told him there was something wrong and he was determined that he was not going to quit until he found out what it was. And he did. But, a new problem arose: at the time Janet got her diagnosis, the Huntington’s Disease Society of America (HDSA) did not have a Center of Excellence (COE) in western Pennsylvania. In fact, the nearest one was 4 hours away at the OSU Medical Center in the state we had just moved from!

Then “coincidentally,” less than a week later, the company I worked for got a contract at Wright-Patterson AFB and decided to move me to Dayton, Ohio to service it – 45 minutes from OSU. While going to OSU, Janet was under the care of Dr Sandra Kostyk, a wonderful doctor who taught me my first fancy medical term: Perseveration.

Then when Ohio winters started getting too bad for Janet and we started contemplating a move south, I was able to find a job in Houston, Texas, which “coincidentally” has a COE at the UT Medical Center (where we are now seeing Dr Erin Furr-Stimming). And the management company that owned the apartment complex we lived in also “coincidentally” owned a complex in Pearland (just south of Houston) which significantly lowered the cost of the move by allowing all our deposits to be transferred. Not only that, but now I am working for a company whose CEO “coincidentally” had a brother who died of HD and so understands at a very personal level what I am going through.

And these are only the major “coincidences” in our lives. Now I suppose that all those things could have just lined up in the right way by accident, but at some point it requires less faith to simply believe that God is in control.

In Christ, Amen ☩

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A prayer for when you have lost so much that you feel no good options are left…

“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 always being present in our lives. But today I want to bless You especially for the ways that You support and reassure me when I feel like I have lost so much – or perhaps everything. The problem is that I can’t see things from Your perspective. Teach me to believe without seeing and show me how to guide others along this same path. Amen.”

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Rubicons, as Far as the Eye Can See

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

Last Sunday, I shared that Frannie and I were getting packed up for a move up to Mineral Wells, Texas. This Sunday, we feel really blessed because the move went without a hitch – aside from the one I had to get mounted on our car. The movers arrived right on time and packed us up carefully and efficiently. They finished up around 3PM, so after Frannie and I packed a few things that we didn’t want to send with the movers (important papers, contents of the refrigerator, etc.), we got on the road ourselves about 6PM, towing a little 4×8 U-Haul trailer.

The drive was about six hours, so we arrived in our new home slightly after midnight. We were tired, but otherwise safe and sound. The next morning, we unloaded the trailer and while I went to return it, the movers arrived and started off-loading the truck. At one point I was concerned that we would run out of space in our new house before we ran out of boxes in the truck! But in the end everything worked out well and even the finances offered a nice surprise, as the cost of the move ended up being considerably under the company’s original estimate. In addition, U-Haul didn’t charge me extra, even though I kept the trailer an extra day.

In addition to unpacking, to be fully at home we need to come up with three appliances (washer, dryer, and refrigerator) and a couple pieces of living room furniture to replace items that we had to get rid of about a year ago to make room for Janet’s hospital bed.

In any case, the utilities are now in my name, and the cable is hooked up – though all we have is internet. I got a Roku unit about a year ago and really like it. If all I want to do is sit and watch documentaries about Blue Whales, they have a channel where I can do that. If I want to listen to music, I can do that too. It’s a neat service that doesn’t require me to buy cable TV with a bunch of channels that I don’t want – or find offensive.

Something else I have noticed since leaving our old apartment, is that rather than growing dimmer, my memories of Janet are, for now at least, growing stronger and more vivid. I well remember the rough texture of the gray wool coat that she wore the first time we met. The sound of certainty in her voice the morning after we first had “unprotected” sex: “That did it! I’m pregnant!” And she was! Her courage, sitting in front of a room full of 2nd year medical students and letting them watch her undergo a neurological examination. So many good memories!

So we are getting settled. And yes, God is definitely taking care of us…

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The title is a reference to the phrase “Crossing the Rubicon,” as it is used to describe a decision that implies a point of no return. The phrase itself was derived from the historical event where the Thirteenth Roman Legion under the command of Julius Caesar, in direct defiance of orders, crossed the Rubicon River which formed a portion of the northern border of Italy. As a result of this action, Julius Caesar became, well, Julius Caesar.

The interesting thing for me was that this crossing took place on January 10th, 49 BC, or to put it another way, exactly 2070 years to the day before Janet made her own “river crossing” (of the River Jordan). As I looked into this bit of historical synchronicity, I found some interesting sidelights that apply directly to being either a caregiver or someone who is being cared for.

To begin, you would think that the Rubicon would be one of Europe’s mightiest rivers – after all, an event this important should take place on a powerful, majestic river. But not so. Except for a short portion right at its mouth where it empties into the Adriatic Sea, the Rubicon is little more than a creek that Julius’ men could have crossed without getting much more than their caligae wet.

And so it is in our lives. We tend to think that big, momentous turning points should have big, momentous signs and markers. But the opposite is more often true. I know that in my own life, most of the major turning points are only clearly discernible in the rear view mirror – like a random thought drifting through my head that perhaps running an ad in a singles paper (sort of like Tinder, but hardcopy) might be a way to meet a nice lady to date. Or a snap decision in high school to take a creative writing class because it was supposed to be an “easy A” only to have it ignite a love of writing that has lasted 50+ years. Or sending in a postcard from an engineering magazine, to learn about a new programming language that would become my profession.

The lesson is that you never know how a small, even insignificant, change is going to impact your life. I certainly had no notion at the time of anything big afoot. And if you think about it, that means that we can (and often are) passing dozens of life’s turning points everyday without even realizing it. Which is sort of what I meant in the title. Every step we take is in essence wading through another personal Rubicon – and as with the real one that Julius tramped through, there is no getting halfway across and turning around.

The significance of water…

Passing through and over water is a very powerful image that has been used since time immemorial to symbolize rebirth and new beginnings. Which is really the point of baptism, whether Christian or the ancient Jewish rite that came before it. But wait, there’s more.

There were other images about water: Moses and the children of Israel passing through the Red Sea, Jonah passing through the sea in the belly of a “great fish”, Noah riding out a flood in a massive boat that he built. And these are just a few of the references in the Judeo-Christian tradition.

When you add to those examples, the use of similar rites by everyone from the ancient Sumarians to indigenous tribal groups in North and South America, and you begin to get the feeling that there is something “hardwired” in us as human beings that needs these sorts of observances.

The other thing to notice about crossing the Rubicon is that it wasn’t actually very hard to do. Perhaps that’s another important lesson. In addition to expecting big landmarks, and big portents of the future, we also expect big struggles. While there are numerous obvious exceptions, many times in the actual doing, they aren’t very difficult. To be sure, I have struggled about whether to take a step or not, but that is different from taking the step itself. In those cases, the big struggle wasn’t always against fear, but rather apathy. It is so easy to fall into justifications like, “What’s the point? Nothing will ever change.” Or the ever-popular, “What can just one person do?”

But I think that one of the big defining factors of Rubicon moments is the rules: either the rules we keep in those moments – or those we break. Here I’m considering the word “rules” to stretch far beyond formal laws and social mores to include things like personal commitments. It is the rules that put the teeth into decisions because regardless of whether you choose to keep or disregard a given rule, there will be repercussions. For example, while Julius Caesar’s decision to cross the Rubicon led to his becoming the absolute ruler of Rome, it also led to his death just five years later on the 15th of March, 44 BC.

In the same way, if I had done something different at any of my big Rubicon moments, my life would have been very different. But that fact highlights a problem: if looking back I see that I made the wrong choice, am I just stuck with the consequences? Thankfully, we are not, due to what I like to call anti-Rubicon opportunities – also called redemption. For instance, I have mentioned before that Janet was my third wife. I made two very bad decisions and crossed two “rivers” that I should not have. The damage done by divorce can be redeemed, but it is not something I could do on my own – it needed divine intervention. Although, there are still visible cracks, like Japanese Kintsugi, God can make my life’s cracks and broken spots beautiful, such as when you consider that my five (surviving) kids are all just brothers and sisters. The prefix “half” doesn’t exist in their vocabularies.

So if you have crossed some rivers that you should not have, take heart. The damage is redeemable.

In Christ, Amen ☩

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A prayer for when you made a really bad choice…

“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 perfection of Your plans and creation. But today I want to bless You especially for Your unlimited ability to redeem that which is indentured, repair that which is broken and find that which is lost. I feel so often like my life is an unmitigated mess, but bit by bit, piece by piece, You manage to miraculously reassemble the shards of my life into something beautiful. Thank you! Amen.”

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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.”