Dementia Journal, June 22, 2017 in Daydreaming on the Porch

Dementia Storm and Transformation, June 18, 2017

The past couple of months Mom has been in what I might describe as a state of equilibrium, even, dare I say it, improvement, although that’s not supposed to be possible with dementia. It’s progressive.. Its relentless. I’m familiar with the trajectory. There have been almost no big personality and mood changes and outbursts that were so shocking when she first manifested them about eight months ago. She’s been incredibly sweet, grateful and so appreciative of her surroundings. She’ll look out the window and say, “Isn’t it a beautiful day?” “Aren’t the flowers beautiful?” “Where did they come from?” “Look at those trees. They’re so beautiful. Who planted them?” (They’re the crepe myrtles which she and my brother planted 22 years ago when she moved into this house). She has been relatively content. Physically, she’s holding on. She’s remarkably strong for 93. She’s continuing to get to the bathroom with her walker and our assistance. Eating well. Sleeping well, except for calling me at least once or twice in the middle of the night to help her use the portable commode by the bed.

But the other night, she had what I think could be described as a “dementia storm.” Starting about 7 pm ( and this could have been the classic sundowner syndrome manifesting itself), she entered a state of high anxiety, questioning, fear, supplication to God, epiphany and transformation, all in a period of about 45 minutes. I was swept up in the intense emotional current and could only hang on and respond the best way I could. There was no escaping it, so I tried to resign myself to it and steel myself for what was to come. It was so strangely bizarre and yet fascinating at the same time.

The other night she asked me if she was in Heaven. That evening, despite her dementia and diminished mental capacity, she was clearly trying to put things in order and prepare for what she knows will be the end. But time and memory don’t exist normally for her. She’s constantly asking me where her sisters are and her parents, and what happened to them. “They’ve been gone a long time. Gone to Heaven,” I will reply, and she understands. But then she will ask the same question again moments later. So she lives in the present totally and has to be reassured in the present continually.

I could not help but get my paper journal and a pen and quickly and as accurately as possible, write down most of what she said that night and some of my responses. I’m going to post a rough transcript here, based on my ability to decipher what I scribbled down so fast in the journal book. There is so little short-term memory and so little ability to form any memories at all, that there’s an incredible about of repetition, Yet, ironically, this very same repetition enables someone on the outside of this “storm” to clearly see the state of her mind and what is pre-occupying her.

I had a lot of experience with taking notes for newspaper stories many years ago, and that prepared me for this first ever attempt here to record one of her many “dementia storms.” But this one was more telling, more transfiguring and revelatory to me than anything prior to it. That’s why I wanted to set it down for the record.

June 18, 2017, 7:15 pm

Mom: “I’m very unhappy. I wish God would take me.

        “Where are B___ and R___? (her sisters)  Are they gone?  I think I’d rather be gone than here.”

        “ Do I have a family?”

         “I’m asking for happiness.”

         “God, please come tell me what to do?”

         “Where is my home?   I want to be home.”

         “God, please tell me what to do?  I’m going to die.”

          “F____ ( me),  Tell me, do I have any children?”

Me: “You have me, Mom. I’m F__”

Mom: “Thank you, F___, for all you do for me.”

Mom gets breathless. Says she starting to cry. But there are no tears. She wants to cry but can’t. She begins reading Bible verses from a booklet by Norman Vincent Peale, “Thought Conditioners” that she has with her all the time and which she re-reads constantly, every day. She has relied on this particular small booklet for decades.

Mom: “God, please take care of me.”

          “God, would you please help me?”   I want to live a happy life.

         " F___, “Thank you for all you’ve done for me.”

          “Why aren’t I happy?  God, please come tell me what to do.  I need God’s help.”

Me: “God will answer your prayers, Mom, and help you.

Mom: Reads a verse: “Be ye transformed by the renewal of your mind.” How do I renew my mind?”

         “I need to get my mind straight.  Should I go to a psychiatrist?

         “I’m praying to God and thanking Him for my beautiful porcelains.” (Mom collected Chinese export porcelains for many years when she lived in New Orleans.)

         “God, if you tell me what to do, I will do it.”  “Be strong and of good courage.” (Bible verse)

         “F___, I don’t have any other children, do I?”

Me: “Mom, you have N, J and me.”

Mom: “I’ve got tears coming down my face.” (She doesn’t actually, but I really think she believe she is crying)

         “F___, What relation are you to me?”

         “Did I plant those trees?  (the tall crepe myrtles she is looking at out the window).  I love them.”

         “Do I have any children?  Don’t they ever come to see me?”  (She constantly forgets that my sister lives in Seattle and my brother at Folly Beach, about ten miles from where we live in downtown Charleston.)

          “F___, Please ask God to take me somewhere.   Where do I live?  Is this my house?”   I’m asking God to take me somewhere where I’ll be happy.   God is punishing me because I’m not happy.  What can I do to be happy?   I trust God, don’t I?"

Reads Bible verse: “This one thing I do, forgetting those things which are behind and reaching forth unto those things which are before. I press toward the mark for the prize of the high calling of God which is Christ Jesus.” (Philippeans 3: 13, 14.)

      “God, please help me.  I need your help so bad.   I guess I should take my money and lock myself up somewhere.

      “F___, thank you for all you do.”   I want you to pray for me.  I’m praying to God to get me out of this depression.”

(At this point, since she is clearly getting more and more agitated and anxious, I gave her a sedative.)

     “F___, I love this little house.  Pray for me to help me decide what’s best, that I won’t be trouble to people.   God, tell me what to do.  I’m miserable and I’m making other people miserable.   I’m making you miserable.”

Me: “No, you’re not, Mom. I love you.”

Mom: “You know what? I’m going to change right now and be happy. Jesus Christ, please help me be happy. Please make me happy.”

    “F___, I wouldn’t blame you if you chucked me out.   What would make me happy?  I love my house and you’re here with me and that makes me happy.   From this moment on I’m going to be a changed person.    Thank you, God. I’m a different person.”

   "F___, You’re my son?  Thank you.  I love you.  You make life worth living.   I’m so happy in this beautiful house with you where with me."

Me: “I’m glad you’re feeling so much better, Mom.”

Mom: “Now I want to live a healthy life from now on. No more complaining. Just thanks.

       “I think you’re a wonderful son.  You are my son, aren’t you? I feel better already.”

Reads Bible verse: For I am persuaded that neither death nor life, nor angels nor principalities, nor powers, nor things present nor things to come, nor heights or depths, nor any creature shall be able to separate us from the love of God, which is in Christ Jesus our Lord.” (Romans 8:38,39).

      “F___, you hear that.  That prayer helped me.  I’m changed this moment.  I am going to be happy.  What do you want me to cook for you tomorrow?”

Postscript: I sigh in relief. This “dementia storm” is over. What a contrast to other times in recent months when there is not as much clarity, where her personality is totally different and she says mean and even cruel things to me. “How could I have a son like you who’d let me live in a hovel like this?” “Who are you?” or “Someone’s trying to hurt me.”

That is what I’m just as likely to hear as opposed to what transpired the other night. The contrast is breathtaking. I know she doesn’t mean what she’s saying when she is in an angry, paranoid state, but on some level in her fear, anger and confusion about who she is, and who she is becoming (and she realizes a lot more than I know), she means it.

The next morning the negative diatribes are forgotten totally just as on the recent morning after her prayers, supplications and transformative experience, she has also totally forgotten all that she said. I didn’t want this very revealing night to be lost forever. I could easily take my phone out and record some of her rants and diatribes, but I remember them in general, they’re very upsetting, and I don’t want to be reminded of the details at some future time when Mom is gone. But I do want to hold on to this night of answered prayer, gratitude and epiphany.

I record all this here also in hopes it will shed light on this mostly terrible, but at times, transfigurative condition and disease called dementia. I hope it might help others facing a similar situation or who might one day in the future with a loved one. And, God help us ourselves if we get this.

Last updated June 23, 2017