When It Comes to Caring for Your Parent with Dementia, You are Alone.

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Before I do anything, I want to thank Public Catholic’s readers for their caring and kind suggestions and ideas about my problems with my mother’s dementia. I am in the process of following up on several of them.

You folks are the best.

Next, I want to apologize for going dead silent on you the past couple of days. My personal situation drug me down too far to write. But I’ll be back. I just needed time to deal with my own emotions.

I had a big tubful of hope when I put Mama in the hospital for an in-patient diagnostic. I thought that they would see the problem and come up with something to help my mother — and me — sleep through the night. The quickie convo with the doc Monday dashed those hopes to the ground. Help ain’t coming.

I’ve spent the past few days living in dry-as-dust land. My heart, my head, were full of dust. Maybe the reason I was so dusty is that I cried so much; tears of anger, tears of despair, tears of grief. I prayed and prayed. Then, I went through the angry phase, and again, I prayed and prayed.

Now, to use a phrase from my horsey days, I’m at the point where I can sit down in the saddle and ride. Sometimes, to paraphrase Robert Frost, the only way out is through.

Here’s a quick take on my feelings right now about what people face when they are trying to care for their parents.

First, we do not get any information from our docs. By that I mean that the only things I’ve learned about Mama’s medical situation have come from reading on the internet and attempting to diagnose her myself. Here’s a list of the information I’ve gotten about dementia, what to expect and how to handle it from our medical practitioners:



Did you hear the crickets chirping????

Now, here’s a list of the medical help and advice I’ve gotten about dealing with Mama’s many symptoms, including hallucinations, night terrors, etc:



Again, did you hear the crickets????

We once had a family doc who took a history, listened, and explained. This enabled her to treat Mama appropriately, and allowed us to take care of her at home. I had no idea at the time that this level of care was totally unique. When she retired, I began going from one doctor to another, trying to find someone who would replicate this level of care.

I’ve read a lot literature about dementia that comes out with this statement: You are not alone.

This is untrue. People who are trying to care for their parents with dementia are completely, absolutely alone. Unless they have a lot of money — and I mean a lot of money — the solutions that are offered to them are to (1) Warehouse their elderly parents in a medicaid nursing home where they will be left in bed all day and ignored, or, (2) Euthanize them.

This last is a real annoyance to me. Every time I write about my mother, some dirt bag tries to leave a comment advocating euthanasia. Every. Single. Time. The effect this has on me is to harden me toward people who advocate euthanasia. It also illustrates just how low we’ve fallen as a society.

The solution to this problem is not to warehouse people with dementia in sub-standard nursing homes with inadequate staff and a don’t-care attitude. I will also add, because it appears that I have to, that murdering them is also not a solution.

Euthanasia, death with dignity and all the rest of that rot are just nice names for murder.

If we spent a fraction of the effort advocating for help for people who are caring for their elderly parents with dementia that we spend on trying to pass laws to kill our elderly, we could solve the problem. Much, in fact most, of the problem lies with the medical profession.

I’m not sure when it happened since I’m healthy enough not to need much medical care, but we’ve arrived at the era of match-the-database-to-the-lab-results medicine. It seems that docs today don’t diagnose, they collate. The patient is totally secondary in their considerations.

Here’s an example from my past dealings with medical professionals. My husband and I took a weekend trip to Dallas a couple of years ago. I left Mama with the kids. She got sick and the kids took her to the er. The er doc ran a lot of expensive tests, including a cat-scan, said there was nothing wrong with her and sent her home.

I got a call in Dallas from that good ‘ole family doc — the one who took histories and listened to her patients — telling me that Mama had left a confused message with her answering service. I headed home to find Mama in desperate straits.

I took one look at her and knew what was wrong: She was dehydrated.

Me, with my master’s in business, did a better job of diagnosing than the doc in the er with his medical degree and all his tests. Why? I did something he evidently never considered. I looked at her.

This particular episode was the beginning of Mama’s won’t-drink-water spell. It was a little slice of hell, getting water into her.  We had to work with her and work with her to get her to drink. Then, for reasons unknown, she started drinking again and we haven’t had that problem since.

She went through a similar period where she wouldn’t eat. We got her though that one, too.

Now, it’s night terrors, hallucinations and what I gather from reading on the internet is called “sundowning.”

I called a lot of docs this week, including several neurologists. It turns out that neurologists won’t see you unless you’re referred by another doc. One neurologist’s appointment maker told me that princess doctor wants all her patients to have an MRI and about a gazillion other expensive tests already done and in the chart when she meets them.

Think about that. This is many thousands of dollars worth of tests that she’s demanding without so much as knowing the patient’s name, sex, age, symptoms or anything about them. If that isn’t trying to diagnose by test, I don’t know what you’d call it.

What these folks don’t see is that medicine is more than collating test results with a database of illnesses. A computer can do that. In fact, can do that. I have no medical training, but I’m plenty smart enough to collate databases. Medicine involves a serious interaction between doctor and patient that these docs have evidently been trained to avoid.

Without a full history and an exam that includes listening, not just to what the patient says but how they say it, without an application of actual clinical knowledge and skills that come from observing, listening to and treating real live people, medicine just doesn’t work.

If docs won’t believe what their patients tell them, then treatment is reduced to what can be replicated in lab tests or in front of the doc. If you have gastroenteritis, do you have to throw up in front of the doc to get something for nausea and vomiting? That’s where we’re heading. In fact, dementia patients and their caregivers are already there.

The danger of relying on tests alone is multifarious. First, as in the case of my mother’s dehydration, the doc may not order the right test. Second, without a history and an exam, the doc may not know how to interpret the test even if he or she accidentally orders the right one. Third, not everything shows up on a lab test. Fourth, even if the doc gets the right result — which is somewhat akin to throwing darts at a wall and hitting a bull’s eye, the patient is out of the loop. With long-term illnesses, the patient must be in the loop to get a good result.

Database collation medicine, or paint by numbers medicine, works very well most of the time. There are reasons for this. First, with most ailments people eventually get well on their own, even if the doc misses the diagnosis entirely. Second, the majority of aliments that people show up at their doc’s office with can be treated with a broad spectrum antibiotic and maybe something for discomfort.

In other words, most of the time, the doc doesn’t have to know what’s wrong with the patient. They can claim a victory just by prescribing a broad spectrum antibiotic and relying on the inherent resilience of well-fed, comfortably-housed Americans.

If things go past that 1, 2, 3 doh-ray-me level of medicine, they refer to specialists who provide a second layer of paint-by-numbers medicine.

The trouble in all this lies in the fact that when a patient gets really sick with something that requires a bit of actual medical practice, today’s docs appear to be utterly lost. They have a few buttons they push, labs they order and standard things they do. When it gets past that, they’re not much more use, and not more personal, than the internet.

What I’m trying to say is that if you get something really weird, you’re going to have to diagnose yourself. If you get something that’s not at all weird, that’s expected even, but that is complex, like, say, dementia, you’re going to have to treat yourself.

I’ve spent this week being down in the dumps for one simple reason: I was coming to the realization that my family and I are on our own with my Mama. We’re going to have to figure this out and provide the care that gets her through this, and we are going to have to do it ourselves.

Because the sloganeering claptrap out there is a lie. When it comes to taking care of your parent with dementia you really are alone.

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I Need a Doctor Who Will Listen to Me

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Is there a doctor anywhere on this planet who will listen to dementia patient’s families?

My long-time family doc retired a couple of years ago, and that appears to have been the end of having a doctor who would listen to what I’m telling him or her, believe what I’m saying and diagnose and treat based on that. What I’m experiencing is docs who complete the chart and ignore the patient. Worse for me and my dementia-bound mother, they totally ignore the patient’s family.

I have power of attorney, so it’s not a legal issue. They. Just. Won’t. Listen.

Many times, I can’t even get them to look at me. Other times, I can’t get face time or even phone time at all. I’ve been begging docs for help, and I mean begging docs for help with a single problem of Mama’s dementia that is killing me and the whole family and will ultimately force us to put her in a nursing home, and I can not get them to listen to me or believe what I’m telling them. As for as getting actual help, forget that. Mama and I are the invisible people, overshadowed and totally negated by the almighty Chart.

Here’s the problem: Mama will not sleep. She goes down for about 3 hours of zzzzzzs, and then she’s up, rocking and rolling all night long. She roams the house, raids the fridge and tries repeatedly to make jail breaks by leaving the house to go wander the streets. She gets confused and does not know who I am or who she is or where she is.

She gets dressed at midnight, 2 am, 3 am, 4 am, etc, and tries to go to her “job” (Adult Day Care.) She’s taken to stripping off all her clothes and trying to leave the house naked. A couple of weeks ago, she started hallucinating that we were trying to kill her. She also hallucinates that someone has told her things, including that someone is going to kill her, that someone is stealing her things, etc, etc.

What this means is that I have to be up with her all night long. Let me repeat this: I have to be up with her all night long. The exhaustion is eating through me like acid.

And I can not get a doc who will prescribe a sleeping pill for Mama. I mean, I Can. Not. Do. It.

I put her in an in-patient diagnostic center for dementia patients. The doc there was supposed to be the best. Yesterday, the doc called me on the phone (first time I’d heard from her, we’ve never met, exactly zero face time) and jumped on me, asking why I had put Mama in the hospital. You know, why I’m such a mean bad totally unloving daughter.

It seems that Mama has supposedly been sleeping through the night in their lock-up ward.

The doc’s main purpose in the call was to announce that she was sending Mama home in exactly the same condition as I admitted her; no help whatsoever. I felt like asking her to come stay with us for a few nights and see what she thinks. What I did instead, was try to explain what was happening in this first-ever discussion with the almighty doc.

I couldn’t get a word in edgewise. This doc doesn’t listen, big time. In fact, she’s not so big on letting anybody else talk at all. Finally, she relented and said they’d keep Mama a few more days. I hung up, realizing that I may not have a choice. I may be forced by these docs who won’t listen, who fill out the chart, read the test results and never look at or listen to the patient, to put her in a nursing home.

I can not go on staying up 24/7 around the clock, just to keep her from burning the house down and dealing with her night terrors. The irony here is that I know that if I am forced to put her in a nursing home, these same docs will happily prescribe sleeping pills for the nursing home. In fact, they’ll turn her into a zombie at the behest of the nursing home.

The operative medical thinking here seems to be that if a patient or, in the case of dementia, a patient’s family, is stupid enough to go to them for medical care, then they must be total idiots, and, of course, nobody listens to total idiots.

This isn’t my usual kind of post. It is a full-on rant. I’ve spent much of the last 24 hours crying about all this because crying seems to be the only thing left that I can do.

This post is a rant. I can’t call it a way of relieving my feelings because nothing seems to relieve my feelings about this. I am going to pull myself together here in a minute and call the people at the Oklahoma State Medical Association and see if they know of doctors who practice medicine instead of just filling out the chart and gatekeep.

If that doesn’t get me help, I’m going through the phone book, looking for a doc who treats patients.

I don’t need a genius doc. I just need a doc who will stop completing the chart, get their nose out of the test results and listen, then treat.

I begin to despair. Maybe such critters are extinct.

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Copyright: Rebecca Hamilton. All Rights Reserved.

Copyright: Rebecca Hamilton. All Rights Reserved.

We had a family discussion last night. The upshot was that the time has come to consider putting Mama in a nursing home.

That’s what the family members I love told me. Their verdict was simple: You will kill yourself, taking care of her.

I, being Ms Reasonable, let them talk me down. I insisted on a delay, but agreed that, by the end of summer, I would find a place for her.

Then, last night, I sat up and googled nursing homes. I read the laws that I helped write, perused the regs that came from them. I plowed through the patient responses and the details of the inspections of these places.

There is a good place just around the corner from my house. It specializes in caring for people with dementia. It has a great patient-staff ratio. There are only four patients in each unit and a staff of 8 to care for them. The people there are happy.

And I could go get her and take her out every day. We could bring her home for dinner and keep her as part of the family.

I would put her there in a heartbeat. She would be happy there, and that’s what matters.

But it costs over $80,000 a year, out of pocket. My pocket.

Mama’s grandfather lived to be 101. Her family is full of people who lived into their high nineties. I may have her for a long while yet. I don’t have the money to put her in this good place where she would be happy. I just can’t do it.

The Church runs a nursing home that everyone, including the residents, says is a good place. But it is, pardon my language, to hell and gone from where I live. I couldn’t go get her and take her out every day. Or, if I did — which I would — it would involve driving almost 40 miles each way, right across the heart of the most densely populated area in the state. A daily visit would take half a day. Every day.

There is no other place that I can afford that I would consider for my mama.

So, I decided I would call and get her a place in the Catholic nursing home and spend the rest of her life — which I hope is long — driving for half a day, every day.

Then, even as I made this decision, I undecided it. I thought of her fearful reaction, her heartbreak at being put in a strange environment. I thought of how far away from me this place is. I thought of her, of who she is.

And I undecided to make that call.

“If it kills me, taking care of her, then I guess it will kill me,” I said aloud to the empty room. Then I prayed and handed the whole thing over to God and went to bed.

My husband went to early mass Sunday. I stayed home with Mama. He came back with a big bag of donuts. She loves donuts.

She was eating what I think was her third of fourth donut while I sat at the table with her, listening to her prattle.

“Are you any relation to me?” she asked, and took another bite.

“I’m your daughter,” I said.

“Oh,” she said, and reached for another donut.

Her daughter. That’s what I am.

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America and Its Half Million Homeless Ghosts

Photo Source: Flickr Creative Commons by David Poe https://www.flickr.com/photos/mockstar/

Photo Source: Flickr Creative Commons by David Poe https://www.flickr.com/photos/mockstar/

Foxes have dens, birds of the air have nests, but the Son of Man has no place to lay His head. Jesus Christ

Sprinklergate, the story that the Cathedral of St Mary in San Francisco was using its sprinkler system to clear the cathedral steps of homeless people, is a symptom of a big-time problem.

That problem is that American cities are haunted by over a half million ghosts. These ghosts sleep on park benches, sidewalks and in shelters. They panhandle and go through dumpsters, searching for clothing, food, money, drugs.

These are not silent ghosts. They accost us as we walk to work, they wave signs begging for cash as we drive down the road. They take over the public libraries and, as St Mary’s has discovered, can block entrances to buildings with their vacant-eyed vigils.

The ghosts haunting American cities are the homeless. They are not in any way homogenous. Some of them are temporary down and outs. Others are mentally ill. Many are drug addicts and alcoholics. Others are panhandlers posing as homeless while they ply their trade.

Photo Source: Flickr Creative Commons by davejdoe https://www.flickr.com/photos/92414546@N04/

Photo Source: Flickr Creative Commons by davejdoe https://www.flickr.com/photos/92414546@N04/

Homelessness is the opposite of the American dream. It is the opposite of what, until a few decades ago, was the American self-image. I am old enough to remember a time when America did not have homeless people lying on its park benches, snoring in its libraries and blocking the entrances to its churches.

I was born in that era between the Great Depression with its hobos and today with our ubiquitous and ignored homeless.

America’s basic response to homelessness among so many of its citizens, including many children, has been to ignore them. The United States Department of Housing and Urban Development issues a glossy report on the homeless every year. This report differentiates between types of homelessness. There are the homeless who stay with relatives, and are not, to my way of thinking, truly homeless at all.

Then there are those who sleep in shelters or whatnot. Finally, we get to the homeless that inspire us to such conflicting feelings of pity, indifference and annoyance, those who do not have shelter at all.

In the meantime, while we ignore the homeless, and refuse to even take a look at the government policies and social changes that made them homeless, we shift the burden for dealing with them onto whoever the homeless themselves chose to impose themselves upon.

Photo Source: Flickr Creative Commons by Alex Barth https://www.flickr.com/photos/a-barth/

Photo Source: Flickr Creative Commons by Alex Barth https://www.flickr.com/photos/a-barth/

Businesses, public buildings of all sorts, churches and other facilities can easily find themselves unable to perform their intended functions because of the homeless sleeping on the sidewalks at their entrance or sitting inside their buildings. Mothers won’t bring the kiddos to the library if the homeless take it over. Guests won’t check into hotels whose entrances are blocked or whose lobbies are filled with homeless people. Churches can’t hold services if the worshippers stay away rather than step over the homeless, sitting on the steps.

We ignore the homeless because we feel helpless to do anything decisive for them. We ignore them because we don’t truly understand what policies and practices of political and social corruption made them homeless in the first place. We ignore the homeless because they overwhelm us and baffle us and scare us.

Photo Source: Flickr Creative Commons by David Hood https://www.flickr.com/photos/131405116@N07/

Photo Source: Flickr Creative Commons by David Hood https://www.flickr.com/photos/131405116@N07/

Worse, we ignore them because if we acknowledged that many of our political and social ideas on both sides of the political spectrum have created this problem and allowed it to grow, it would require us to re-evaluate many of our simplistic viewpoints. We ignore the homeless because not ignoring the homeless would require us to change.

So, we dump them.

We dump them on the businesses and operators of public buildings. We dump the problem on the administrators of these businesses, public buildings and churches. Then, when they take any action to dislodge the homeless from camping out on their property and blocking access and use by those for whom it was intended, we excoriate these administrators for their heartlessness.

This public venting of moral outrage has nothing to do with compassion. It is just us, being our hypocritical selves about a problem we will not do anything to solve. We will not take a homeless person home and house them in our spare bedroom. We will not let them sleep on our porch. We will not change our politics to fit the realities of real life.

We will ignore them and what brung them.

They are not people to us. They are ghosts of what once was people like us. Somebody birthed them, taught them to write those signs they hoist and how to read the hours of operation on the signs in front of public buildings.

They were once part of the larger society.

But now they are ghosts.

And we ignore them.

And we denounce those on whom we dump them for being overwhelmed by them.

And we will not change.

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Pope Francis: Discarding the Elderly is Ugly and It is a Sin

Photo Source: Flickr Creative Commons by thierry ehrmann https://www.flickr.com/photos/home_of_chaos/

Photo Source: Flickr Creative Commons by thierry ehrmann https://www.flickr.com/photos/home_of_chaos/

This is a powerful message for our Pope on the care of the elderly.

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Watching Football with My Four-Year-Old

Photo Source: Flickr Creative Commons by Craig Sunter http://youtu.be/PnGIakNY7lk

Photo Source: Flickr Creative Commons by Craig Sunter http://youtu.be/PnGIakNY7lk

There was a time when I let my babies “style” my hair while I read or watched tv.

Now, I just give them money. :-)

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What New Dads Do

Real men love their kids. My life has been blessed by two wonderful real men: My father, and my husband.

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The ‘Fifty Shades’ Controversy: Sicko Sex and Failed Feminism

Photo Source: Flickr Commons by Ira Gelb https://www.flickr.com/photos/iragelb/

Photo Source: Flickr Commons by Ira Gelb https://www.flickr.com/photos/iragelb/

What is it with women who read Fifty Shades of Gay and who will go to the movie? You got me.

Fifty Shades sounds like the classic masochistic nonsense: Woman redeeming the bad man by allowing him to abuse her. This sort of claptrap has been used to keep women in abusive relationships for millennia. It’s right up there with the “she asked for it” defense of rape.

It is interesting that it’s Christians who are speaking out most strongly against this misogyny. The feminist response, such as it is, has been much weaker and more muted. For instance, this is the only response I found on NOW’s website. There was no comment about Fifty Shades on the National Women’s Political Caucus website.

This is the same old sick stuff that feminists once rightfully condemned with all their force. In my opinion, the popularity of Fifty Shades after decades of feminist work is a sign and a symbol of a failed movement.

One of the commenters in the video below says that linking sex and violence is evil. I absolutely agree. That fact that this sicko movie is the  big box Valentine’s Day release says a lot, and none of it good, about our culture.

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Staying Married: Listen to Your Wife; Talk to Your Husband

Note: This post was first published a couple of years ago.

Photo Source: Flickr Creative Commons by Dennis Skley https://www.flickr.com/photos/dskley/

Photo Source: Flickr Creative Commons by Dennis Skley https://www.flickr.com/photos/dskley/

My husband forgot about the first Valentine’s Day after our marriage.

I didn’t get so much as a card.

That was what you might call a mistake on his part; one he has learned not to repeat.

The reason he’s learned this is because I told him. I didn’t go home from work that day (I was in the legislature at the time) and hit him with my purse. But I did tell him. And the next Valentine’s Day, I told him in advance.

Which leads me to half my point.

Women, if you want a happy marriage, do not assume that your husband understands what you want. Based on decades of happy marriage to the one and only love of my life, I can tell you that he does not.

He. Doesn’t. Have. A. Clue.

I grew up with an involved father-in-residence and then married another y chromosome type person and have lived out the rest of my life since then with him. This experience has led me to form a theory about the male brain.

It doesn’t think like ours.

From what I can tell, the male of the human species thinks that if he makes sure you go to sleep in a warm bed under a roof that doesn’t leak after eating three square meals and that every man around knows that insulting you will get him in a fight, well then, that’s love. And you should know it.

If he comes home at night and doesn’t dally with other women, if he would rather cut his arm off than raise a hand to you, if he provides for, protects and cossets you, he thinks he’s done everything any woman with half a brain could possibly want. He’s finished. Done. Through. In his mind, he’s got that good husband stuff handled and now it’s time to get a brewski and plop down in front of the television for some football.

You, on the other hand, need to be told that he loves you. You think that all this protecting, providing, cosseting stuff is just a sort of baseline that any decent person would do. You don’t want a bag of groceries … or … well … you do want a bag of groceries, but you want something that feeds your heart as well as your stomach. You want affection. And you want a few complimentary words thrown in with the affection.

The trouble is, he’ll never know this if you don’t tell him. In fact, if your way of telling him is to go off and throw a hissy fit and cry and slam doors and answer “Nothing!” when he asks you what’s wrong, he’ll never figure it out. Nothing comes of that kind of behavior except a husband who is convinced he’s married someone who has mental problems, and a wife who honestly thinks her husband does not love her and that she’s probably unattractive to him to boot.

So, the first half of the point I’m making is, wives, talk to your husbands. Tell him what you want. I don’t mean yell at him and demand what you want. Just … tell him. Be specific. If you want him to take you out to dinner, say so. If you want a box of chocolates, say that. Do not make him try to figure it out. He won’t. Because he can’t. His brain doesn’t think like yours.

After you’ve told him, let it go until the next Valentine’s Day or whatever it is you were telling him about rolls around again. Then, gently, gently remind him. As the big day comes into view (be it your birthday, your anniversary, Valentine’s Day or whatever) start reminding him a few weeks out. You don’t have to make an issue of it. In fact, you shouldn’t make an issue of it. Just use your knowledge of him and your relationship to go about the business of reminding him in the gentlest way possible. If you don’t remind him, he won’t remember. Not, mind you, because he doesn’t love you, but because he’s a man, and their brains don’t think the same way ours do.

Which leads to the second half of my point.

Men, if you want a happy marriage, listen to your wife. When your wife tells you and reminds you, that means she’s handed you the ball and you need to run with it.

Do not quibble about this. Listen to your wife. Go forth and buy chocolates, or make dinner reservations or whatever. It does not matter that you just rotated the tires on her car and filled it up with gas. If she wants dinner and a movie, give her dinner and a movie. And for pete’s sake, tell her she’s pretty. Stand in front of your bathroom mirror with the door locked and practice if you have to, but say it.

Wives, talk to your husbands. Husbands, listen to your wives.

And while you’re at it, forgive one another for the subtle differences between the sexes that make this post necessary. There’s a reason God made us like this. When husbands and wives cooperate with one another this way, love between them grows. Our differences, which can drive us apart if we are stupid about them, can also meld us together for life.

Now, husbands and wives, start talking and listening. Your lives and your family will be the better for it.

Happy Valentine’s Day!

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Pope Francis to Lithuanian Bishops: Defend the Family

Photo Source: Flickr Creative Commons by thierry ehrmann https://www.flickr.com/photos/home_of_chaos/

Photo Source: Flickr Creative Commons by thierry ehrmann https://www.flickr.com/photos/home_of_chaos/

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