We are a people of Dementia

The beauty of a church that draws eyes to heaven. A visual depiction of the goodness of God

But take care and watch yourselves closely, so as neither to forget the things that your eyes have seen nor to let them slip from your mind all the days of your life; make them known to your children and your children’s children. Deuteronomy 4:9

Mom’s diagnosis with dementia came to us after she had her first stroke. We had noticed her memory lapses prior, but she had covered it all up well. After the second stroke there was no hiding anything. Her memory was gone and her world and ours changed drastically.

There is something that the medical world calls “confabulation” that dementia patients do. Confabulation is a type of memory error in which gaps in a person’s memory are unconsciously filled with fabricated, misinterpreted, or distorted information. When this happens it is very difficult. Sometimes the error contains bits of reality, but it is so distorted that it is unrecognizable as true. So for example, my mother did actually live at the beach, but she is convinced we are there now. The stories are often so outlandish that it is key to to keep a sense of humor about things. It is sometimes the only way to get through the pain.

When mom and dad first moved in and mom began telling these stories, it was very difficult. First, I didn’t always know if what she was saying was true. For example, one day mom started talking about meeting the Princess of Wales. I thought it was a lie until I remembered and dad verified that mom did actually meet Princess Diana when she worked closely with the Reagan White House.

Mom and Dad getting ready to go meet Princess Diana

But other stories I know not to be true like when she told me she was a cupcake maker just after watching a Hallmark movie about a cupcake maker. Mom is also, at least in the evening, very convinced she has small babies and she gets anxious looking for them.

When all of this started happening, my first response was to correct her, to tell her the truth. I would say, “no mom, you aren’t a cupcake maker, you are retired and live with me. I am your daughter.” She would become so angry and agitated, like I have never seen before. She would call me a liar and dig her heels in. She would accuse me of conspiring against her. After watching some videos a doctor made on dementia patients we learned the term “confabulation” and that in her mind she is not lying. That because of the damage to her brain from the disease, her brain has found a different reality to help her cope and that reality can change from day to day. Any mention of the truth can throw her into a state of extreme agitation and anger. The advice the doctor gave was to either go along with it or to try to distract her. These are the things that keep the peace. I even went to a Priest to ask whether doing these things put me in a situation of lying or if it was okay to “go along with” the distortion. After pulling out the catechism and reading Saint Augustine about lying, he assured me it was okay to go along with it to keep the peace in my household.

We bought mom a baby doll that she carries with her. It alleviates her anxiety about her “missing babies”

One of the worst parts about confabulation is when your mother accuses you of things that are so very not true. Often in my mom’s eyes, I am keeping her trapped, in prison. If I have to change her or shower her or try to help her she yells at me that she can do it herself and I have no right to do these things. Never mind that she cannot walk or dress herself. In her head she often thinks I am imprisoning her even as I try something as simple as keeping her clean. She has called me a liar more than once and she accuses me of taking her freedom away.

After months of now dealing with this, I began to see that this is how God must feel about us. From my perspective I am caring for and loving her. I give all that I have to her. My home, my physical work of my hands, my things, whatever she needs, what ever I have is hers. But because of the damage to her brain her reality is distorted and she blames me for her problems and rails at me (at least some of the time, not everyday is this way). The more I would try to tell truth, the more she refuses to believe it, so I let her be. I try my best to always respond in love to her no matter what it is she may be saying to me. Some days are harder than others, but thus far I have handled it well with the help of my wonderful husband.

In mom’s case she can’t help it. A disease has ravaged her brain. But when I look at the world I see something that reminds me of dementia. People have had their thoughts so distorted by the enemy that they believe lies. God gives and gives and gives, and people rail at Him, accuse Him of their suffering, accuse Him of taking their freedom, all the while their brains have been shaped by the enemy who is actually the liar. In mom’s case she cannot help it. In our society we have chosen to believe lies and we run away from the very one who can heal us, or even worse we actually stand in pride in front of the healer and tell Him His ways are wrong, stuck in our own pride. Just a sampling of the lies we have chosen as a society to believe and we can see it is no wonder we are in the state we are in;

Politicians believe that they are actually helping women by paving a way for them to easily kill their children.

Parents and educators believe they are helping their child by allowing the purpose of sexuality to be twisted or even worse transitioning them into a sex that they are not.

Scientists and doctors believe they are helping mankind by stopping our fertility with contraception and by making vaccines on the backs of aborted children.

The distortion is displayed out in the open now.

People display Vaccine saves on Christ the Redeemer Statue making a mockery of the actual Savior

And anyone who tries to tell them the truth gets railed at and canceled. They rage at the God they do not know who is only trying to make them clean. God says let me love you. I want to give and give and give blessing to you and to care for you. And society screams “no” making their decisions based on fabrications and distorted information. They see God as the jailer all the while they have handed themselves over to the jailer who comes from the pit of hell.

And so it is here dear brothers and sisters, that those who see the truth must ask ourselves a question. Can we love the individual in front of us anyway?

With my mother it is easy to keep loving her. She is my mom after all, and I see what has happened. I know it is a disease and it is not her fault. I know how well she loved me even when I was a bratty toddler, teenager, and sometimes adult. Mom sacrificed for me, so the sacrifice for her becomes easy.

But with the person you don’t know who is wrapped in lies can you still love?

“If you love those who love you, what credit is that to you? For even sinners love those who love them. If you do good to those who do good to you, what credit is that to you? For even sinners do the same. If you lend to those from whom you hope to receive, what credit is that to you? Even sinners lend to sinners, to receive as much again. But love your enemies, do good, and lend, expecting nothing in return. Your reward will be great, and you will be children of the Most High; for he is kind to the ungrateful and the wicked. Be merciful, just as your Father is merciful. Luke 6:32-36

Mercy and love are the answer. This doesn’t mean “going along with” the lies as you might go along with a dementia patients confabulation. We must stand in the way as Jesus did. But we must also understand the persecution that comes with that. This is because they don’t want just your love, they want the acceptance of their sin. They want you to tell them their sin is good. But we can’t. God alone is good and the sin is destroying them. So we must be ready for what comes when you stand against sin.

“If the world hates you, keep in mind that it hated me first.” John 15:18

In time I suspect that mom will totally forget who I am. It seems our society has totally forgotten who God is, how good God is. Let those of us who know him not forget and shine light in the darkness for others to see.

Psalm 103, a Psalm of David

Bless the Lord, O my soul,
    and all that is within me,
    bless his holy name.
Bless the Lord, O my soul,
    and do not forget all his benefits—
who forgives all your iniquity,
    who heals all your diseases,
who redeems your life from the Pit,
    who crowns you with steadfast love and mercy,
who satisfies you with good as long as you live[a]
    so that your youth is renewed like the eagle’s.

The Lord works vindication
    and justice for all who are oppressed.
He made known his ways to Moses,
    his acts to the people of Israel.
The Lord is merciful and gracious,
    slow to anger and abounding in steadfast love.
He will not always accuse,
    nor will he keep his anger forever.
10 He does not deal with us according to our sins,
    nor repay us according to our iniquities.
11 For as the heavens are high above the earth,
    so great is his steadfast love toward those who fear him;
12 as far as the east is from the west,
    so far he removes our transgressions from us.
13 As a father has compassion for his children,
    so the Lord has compassion for those who fear him.
14 For he knows how we were made;
    he remembers that we are dust.

15 As for mortals, their days are like grass;
    they flourish like a flower of the field;
16 for the wind passes over it, and it is gone,
    and its place knows it no more.
17 But the steadfast love of the Lord is from everlasting to everlasting
    on those who fear him,
    and his righteousness to children’s children,
18 to those who keep his covenant
    and remember to do his commandments.

19 The Lord has established his throne in the heavens,
    and his kingdom rules over all.
20 Bless the Lord, O you his angels,
    you mighty ones who do his bidding,
    obedient to his spoken word.
21 Bless the Lord, all his hosts,
    his ministers that do his will.
22 Bless the Lord, all his works,
    in all places of his dominion.
Bless the Lord, O my soul.

About veilofveronica

I am a mother and wife as well as an RCIA and Adult Faith Formation catechist at a parish in the south. I have 3 children and a great husband.
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25 Responses to We are a people of Dementia

  1. JeanT says:

    Beautiful! Just beautiful.

  2. tunaonfriday says:

    Thank you for this. This is exactly what we need to hear right now. We tend to fall into the trap of verbally vilifying enemies of the Faith & match their tone (or even better one-up them) of anger and insult. This delights Satan because he’s succeeding on both sides of the street.

  3. Thank you so much for sharing both your challenges and successes with your mom‘s dementia and thoughts on our many ways of denial to God when we shake our fists at Him

    My mom has been with us a month… the cognitive decline has definitely started, the strange stories, inability to recall the conversations we had moments before, general stubbornness etc.
    I’m fighting each hour my constant struggle to refute, correct or agree to keep peace. I compromised trying to explain why I was correcting.,. but that really isn’t feeling very loving or charitable in retrospect, at least how I’m handling it. I feel terrible when I lose my patience which is quite often…

    Grateful for your insight, it’s going to help me mold my next day, next week , and beyond to change it as I need to.
    I’m thankful I can sit with the Lords Real Presence in the tabernacle every morning , for now. It’s a lifesaver . And I think my husband is a saint
    Susan, thank you !

    • Thank you! I actually got cupcakes for my cupcake making mom. I don’t fight it anymore because I realize she lost the ability to reason and it’s too hard for her to admit all her confusion. And I think my husband is a Saint too. God Bless you!

  4. sally says:

    Grace is truly flowing from your experiences Susan! Touching so many people in the areas that need healing. Praise God in His Wisdom! Your sharing today reminded me of words I received way back in 2010. Its up to you if you want to post them.
    2010-03-07Come and Walk With Me

    Children, what have I done that causes you to fear me so? Why is it so difficult to embrace me, He who is true love? Your minds and hearts have been poisoned against me by the spirit of this world.You know who the prince of this world is, do you not? It is satan himself. He who was thrown from heaven like a bolt of lightning…hurled to earth in shame and humiliation for opposing the love of the Father. Why do you serve him? What does he provide for you that I do not? I hear very often that it is difficult to believe in me because you cannot see me. You cannot see him either, yet find it preferable to serve him. I hear very often that I am to blame for your suffering…I who am all Love am to blame for your suffering? Sin is to blame for suffering. I came to take away sin…the Lamb of God, who takes away the sin of the world! Why do you not harbor anger towards satan, who is the author of sin? Children, you are being deceived. It is time to wake up. It is time to cast off the shroud of darkness that keeps you from trusting and loving Me. I cannot violate your free will…if you choose to remain in darkness, I will honor that . Keep in mind that it is not I that am very far from you, but you, who in your obstinate free will keep yourselves from Me. Your misery will only increase in proportion to your rejection of Me. The farther you travel from Me, the more lonely and desolate your life will become. You will not be able to find your way in the darkness that you choose without light. Drop your foolish pride now, take my yoke, which is light and sweet….walk with Me. I love you, I forgive you. Come and walk with me in light!

    2010-04-18 Children, you are still not listening. The voice of your Savior cries out, and yet you still do not listen. Is it that you do not know my voice? Has the weight of your worldliness caused deafness? Are you afraid of My voice? The voice of Love? I have given you every means to come to Me. What is keeping you from embracing the gifts being offered? Ponder this children, and quickly. Nothing is more important than this. You will never regret time spent pondering My Love. You will, however, regret time wasted in rejecting Me. I love you children-you-are-still-not-listening.

  5. James Aloysius Ignatius McAuley IV says:

    I have been blessed to work with the elderly for over 20 years.

    There is nothing more dangerous than someone who will not admit they have dementia who gets a wicked lawyer or third party to help them against their own family. In the end, it is my experience that they are often fighting against their own mortality.

    Others will accuse you and have temper tantrum flares and insist something is wrong with you, or you are lying, or stealing, etc. Some very hurtful and untrue things are often said when the disease is speaking. Sometimes buried and forgotten secrets that are best left unsaid.

    Reading the Lord of the Rings as a boy in the 1970s, I was struck by the line “[n]ine for mortal men doomed to die.” Too often the reality of death, the “memento mori” is ignored or forgotten. All too many people deliberately stick their head in the sand over this. Many of us, too, want a ring to stretch out our lives to avoid the reality of death.

    When we are young, especially in our 20s, we often feel invincible. I did. Not anymore.

    Tokien used another phrase, “and their glory passed away into green mounds of grass.” When I first read Psalm 102 (103) as part of the St. John’s Abbey 1941 Short Breviary, I remember thinking that Tolkien would have known this section of the psalm that you cited:
    As for mortals, their days are like grass;
    they flourish like a flower of the field;
    16 for the wind passes over it, and it is gone,
    and its place knows it no more.

    “Dementia” covers varying degrees of organic mental disorder.

    All of life, is just a preparation for that day when we shall meet our God, our maker.

    Many elderly, even those with dementia, will start seeing the dead before they go home and start talking to them. The book “An Army in Heaven” covers this topic very well. I have personally witnessed it.

    As my mother says, in regard to dealing with the elderly, “[i]t builds your character.”

    • Yes James what you say is true. Mom talks about her own mom all the time. She often says she wants to go home to mom. She told me her mom makes her feel safe and “goozaly”. I think goozaly is moms word for warm. My mom has lucid moments still. She knows my dad is on hospice. She is sad about that and wants to help him.
      She still has a great sense of humor. We are still laughing a lot. The ones who taught me to prepare for death were my mom and dad. They certainly don’t want to die, but they do know the other side is better if you accept the mercy of God.

  6. lucy says:

    Thank you Susan for this post. You are so right in drawing the parallel of dementia out into the broad daylight of society at large !
    RE-DIRECTING. Definition: The act of re-orientating the focus of attention in the conversation when it heads towards what is considered the “wrong”direction . Wrong direction can be pretty subjective. Isnt that exactly what is happening today : One ginormous re-direction of information ! (aka social engineering? ) CONFABULATION. The act of intermingling (con=with) of fabulous fables into the communication of facts. In the case of our precious, demented parents, the process is essentially harmless. In the case of information professionals or those who lead and govern us, it becomes positively horrendous….and when I was in college studying history, it was called propaganda.
    With my mom, I actually think I received a grace of what you might called Creative Dialoguing . (as opposed to Creative Writing) I took the cue on how to do it from the dementia care pros in the home where she lived the last couple of years of her life, when I couldnt care for her anymore myself in her own home.
    The key concept care-givers seemed to use was the “re-direct” skill. Dementia minds are kind of like a pit-bull and they cannot move away from their thought if or when we negate or deny it. Resistance is not a good thing for the demented mind. They will just cling harder. So…..once I learned that was the rule, then I always would start out with a big: “O Yes Ma’am. I know just what you mean. You are spot on there ” . Most of the time, I actually would encourage her in the conversation thread she was already on. Then I would just pick a thread I liked, and expand on it. I would get her “distracted” by or focused on something concrete in her own delirious insanity.
    Example: “Oh that is splendid Mom ! You are goig to see Lady Diana. What do you think she will be wearing today ? Something blue? Red? Green? Pants or a dress ? She looks so lovely in hats. (see where that leads…because every conversation thread you pull out of the conversation just might have its own pathway ! Take the threads that you want to pursue at that moment with mom) What jewelry does Lady Di like to wear with that outfit, do you suppose?” (Then shift the focus onto her own taste and memory) ” Mom, What were your favorite shoes when you used to get dressed up? Did you have a favorite dress? Can you describe it ? Oh tell me about your first date with Dad? What were you wearing ? So you get the picture : I would take her on a lovely memory trip, maybe some of her answers were true. Who knows. Who cares. We both had a great time …. And often, I would spend close to 3 or 4 hours with her. It was a gentle conversation. Never rushed. Nothing overwhelming because you do not ever want to over-stimulate them . Take silent pauses here and there, as if I were actually thinking about her answers. Sometimes I was ! It was fun. Easy going. Like jumping from one lily pad to another if you were a frog in a pond ! We often would go “visiting” her youth and the prime of her life. She had clear memories from those days. I even learned a certain amount about her, and actually began to love her in a different way. Not so much as my mother, but as friend or sister. Does that make sense? There was a powerful tenderness that developed between us through her story-telling. I would just give her strong visual memory clues like colors. Smells. Tastes. We would travel back into the kitchen and cooking. Or the yard and gardening. Or a dance. Or a trip , real or imaginary , into some adventure… My role was just to guide the word pictures.
    Other times… she would declare a fact like : ” I am going scuba -diving this afternoon”, says mom (demented, 84 years old) . Lucy : “Oh really ? Wow. That is fantastic. You are so blessed to go scuba diving. What do you see down there ? Starfish? Turtles? Tell me all about it ? What is the water like? Is it warm? How did you learn to scuba dive? ”
    From that “fun” thread in her words, I would go for the home-run ! Indeed, sometimes we would have an hour-long visit on the most imaginative subjects under the sun, mostly to do with nature, adventure, discovery, etc… We would end our visit with a clear cut suggestion (re-direction) to get something to drink like lemonade. I would hand her a glass of water. She did not know the difference ….but she sure enjoyed it because it was cool and refreshing !
    Thank you for letting me share these memories of my own demented mom. May her soul rest in peace by the Mercy and Grace of God !

    • Thanks Lucy. Wise words. God Bless you!

      • PHILLIP FRANK says:

        Loving the “sinner” is easy if you find the fun.
        God has placed many a sinner in my friend group. Seems He has designed me as a prayer warrior for them to help them get to heaven because, though lost, they still want to go there dispite themselves and, of course, God wants them to go there too!
        Most of the time I just try to be that good example for them. The “dementia” of the world comes at us even in the supposedly more reasonable areas such as science and medicine.
        I’ve been good friends with people in these areas who because they are “learned” have lost their faith. It is such a distraction from real Truth in so many ways, much of it really based on pride and a fear of rejection if you profess anything else but the “follow the science” mantra. So I am an enigma to them. An outlier. An amusing guest. But they are drawn to me because of He who is in me. I know this because nothing is an accident in this life and God’s ways are far above our ways and uses even the sinner for His own purposes.
        So, I love my wayward, wordly friends knowing God loves them too…dementia and all! And like you wrote above, He helps me to see why He loves them despite their sins and places His angels and prayer warriors among them to help in His cause of salvation. If they will not pray, I will pray in their stead and God, through His Divine Mercy, will lead them home.
        So, Jesus, I Trust In You.

      • Jesus I trust in you. I “follow the Way, the truth and the light” because He says, “come follow me.”

  7. Anne Johns says:

    All true Susan,Lucy and James. My mum had it for 9 years. I smiled at the picture of you’re mum with the doll. That was exactly my mum’s situation. In the home several dolls were bought….as some of them fought over them. Just gently go with the flow and love her.

  8. Susan Dee says:

    My Grandma had dementia but was physically fine and my Grandfather had a stroke and was confined to a wheel chair. They moved in with my parents. Grandpa knew what has happening but Grandma was completely disoriented. She thought she had little kids back home and ‘that old lady’ (my mom – her daughter) was keeping her away from her babies. Grandma began running away and would climb out the bedroom window to ‘go home’. Mom and Dad had to put locks on the inside of the doors to keep her in. Her personality changed and the lady who never said a bad word began using language that would make a sailor blush.

    I know what you are going through because I saw these changes in my grandma. You will remain in my prayers. I know it is hard. The baby doll is a great idea.

    • Thank you. Yes mom asks to go home every night but she can’t walk as her two strokes and broken hip have made that nearly impossible so she hasn’t been able to leave. Thank you for the prayers, they’re greatly appreciated.

  9. steveorlosky says:

    I just absolutely love this post. It’s so real and right on. Thank you for having the courage to talk about the vaccine’s connection to abortion. I can’t bring myself to take the vaccine for this reason. I just can’t picture the Our Blessed Mother taking this vaccine, if she knew how it was made.

    • The Vatican actually held a press conference on the vax. During the Press Conference one of the participants, Frank Ulrich Montgomery, made the statement “vaccination is life”. https://press.vatican.va/content/salastampa/en/bollettino/pubblico/2021/07/02/210702c.html
      A statement like this coming from a Vatican event is a spiritual tsunami.
      There was absolutely no mention of Jesus.
      O that the Vatican would talk about the Eucharist- which is their purview – our spiritual well-being – the way that they talk about the vaccine – which isn’t their purview.
      Vaccination is not life, Jesus is. I have a feeling things in the world will get worse. Calling something “life” that was made on the backs of aborted children…heaven won’t have it.
      But God is our hope and our victory. Beware of those who make science their god. If science isn’t directed towards and for God it will actually be his wrath we experience.

      • steveorlosky says:

        Thank you so much for referencing that article. I read it, and it seems to echo what we’ve been hearing in the media. It’s frustrating, and it’s upsetting. May God give us strength and wisdom during this time. Let’s keep our Mother Mary in mind, and consider what she would do in a time like this.

  10. Hope D. Aspengren says:

    Wow, you have no idea how much I appreciated your sharing on the disease of dementia. I took care of my Mother-n-law after a stroke s,he had to move in with us and oh how hard it was caring for her until Our Lord called her home peacefully. and now my dear husband is suffering with it and I am finding it so much harder, please God let me have the grace to endure and love him until God calls him home.

  11. Pingback: Rejoice in Suffering | Veil of Veronica

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