My Dementias (plural) – and how one doctor helped me regain my brain.

C2244996-94B8-47C0-9A28-26BDEBF03B6D

I didn’t have the expected memory loss, confusion, and communication difficulties usually associated with dementia until several months before I died.  Both my long and short-term memory remained mostly intact.  My thinking remained fairly sharp, and I had no trouble expressing myself.  

Now, my husband was a different story.  He developed dementia before I did, and his involved memory loss, confusion, and difficulty speaking and writing – all the classic signs.  But I did not.  Honestly I didn’t realize I even had dementia; and if I had, it probably would’ve terrified me.  No one pointed it out to me, thankfully.  

I was aware that I seemed to have less physical, mental, and emotional energy for complicated or stressful tasks.  But I relied on Janet to help me with things.  

I broke my leg, was drugged with Serequel, and lost my husband.  Life was no longer “as usual.”

I came home after two months in three different rehabs and a trip to the ER because the last rehab had given me an antipsychotic drug (Serequel) which literally made me crazy.

Richard died in a different hospital across town while I was still in the ER.

I didn’t learn of his death for three days.  It took that long for the effects of the Serequel to wear off enough that I could process things.

When they finally told me about Richard, I was barely able to handle it. Along with the lingering effects of the Serequel, I was also infected with a urinary tract infection (UTI). The ER discovered it, and started me on IV antibiotic, but released me the same day with a prescription for useless antibiotic pills.

The last rehab I was in gave me Serequel because I was having delirium related to the UTI – which they neglected to test me for.  Janet kept asking them to test me for a UTI, but they never did.  They drugged me, instead.

The UTI delirium lingered on.

My behavior and mental status were concerning.  Even after the “crazy” effects of Serequel wore off, the delirium lingered on.  I was lashing out at everyone, at first.  Janet called Dr. Stella, and she called in a prescription for Macrobid, which finally cured the UTI, yet landed me in the hospital, again, with a severe lung infection that nearly killed me.  But I survived that one.  It was the one I got a year later that caused my death.

An antibiotic called Macrobid caused my death.

I was catheterized during that hospital stay, and got yet another UTI that manifested after I came home from the hospital.  Dr. Stella prescribed a different antibiotic, which significantly reduced my symptoms for awhile, but the UTI returned again and again.  She repeatedly treated me with oral antibiotic, which always helped, initiate, but never fully cured the infection.

UTI delirium often masquerades as dementia.

My behavior frequently looked like dementia – yet not the typical kind.  I was angry, paranoid, delusional, spiteful, aggressive, and sometimes violent.  My judgment and reasoning were lacking.  Some days I was a little confused.  Yet other days I was very sharp.  I occasionally thought I saw people in the hall who were not really there.  And I barely slept, except for frequent short naps.  I  awakened from bad dreams that I thought were still happening even after I woke up.  

These symptoms, which were very much like Lewy Body Dementia, were present only when I had a confirmed UTI.  As the UTIs started to clear, so did my dementia symptoms.  

Between UTIs, I was pretty normal, and was able to make responsible decisions. 

I decided to hire caregivers after returning home from rehab because I was no longer able to walk, unassisted. Janet and Douglas eventually had to return to work, and I was unable to fully function alone.

My caregivers got fairly good at being able to tell when my chronic UTI was flaring up by my temperament.  When I started to get grouchy, they’d alert Janet, and she’d take me to the doctor for another urine test.  

If I was unfortunate enough to land in a rehab during one of these episodes, I was usually drugged because facilities have little time or patience to deal with what they refer to as “behaviors.”

This was my brain on drugs.

Below are a few photos of what I looked like in rehabs that drugged me with sedation and antipsychotics when I was suffering from a UTI.  It was horrifying. Just so you know – Janet put a camera in every rehab I stayed in, and removed me immediately if she saw me in distress as in the photos below.

3121CEF7-3688-4070-8F20-FA2A26031C24

74259D90-7577-49F8-8753-AF12A85F5975.jpeg

At some point, down the road – real dementia did set in.

Even when I wasn’t angry and aggressive from the UTI pseudo-dementia, I was more frequently confused and childlike, and my short-term memory started to fail.  When it started, I thought my toy cat was real, and sometimes thought Janet was my mother.  My real dementia was typically sweet.  I just wanted someone near to hold my hand or rub my back.  I wanted to be cared for.  I was afraid to be alone.  I was needy for human contact.

Like a box of chocolates, though, you never knew what to expect from me.

Periods of being my old self again between UTIs stopped.  I was no longer my old self, but rather evolving into someone new.  My real and constant dementia started several months before I died, and I flipped back and forth between being angry and aggressive, during a UTI flareups, to being sweet and childlike.  I was kind of like a box of chocolates at that point.  You never knew what to expect from me.  I didn’t know, either.  One minute I was loving and kind.  The next minute I wanted to hurt you.

Near-death experience one month before I died

One month before I died, I was transported to the ER because my feelings of anger and aggressiveness were out of control.  I had a bad UTI episode, which I described in my previous post. 

Urinary Tract Infection Delirium Vs. Dementia

During this hospital stay, a few interesting things happened.

I was accidentally overdosed on drugs by the hospital.

The day after the IV antibiotic was started for the UTI, the doctor ordered too much sedation, I was overdosed, and nearly died.  It took them about an hour to “bring me back to the land of the living.”  I had a near death experience.  A dream.  Three angels visited me in the dream, and explained everything to me – my life, my condition, and my upcoming death.  It was a life-changing event that seemed to strip away every ounce of aggression and anger from me for the rest of my life.   I attempted to describe the dream the next day in this video (also shown in my previous post).

Zyprexa may have also helped create a new, improved composite “me”.

The doctor decided to try a medication called Zyprexa (after having overdosed me the day before with other drugs).  Janet created the video above several hours later.

He started me on the lowest possible dose.   Let me point out that prior to my near death dream and taking the Zyprexa, I was barely communicating, usually speaking only a few words to people.  I could not focus on television programs, was fearful, irritable, and depressed.  Both my short or long term memory were shot. I was a sad case.

I surprised Janet.

That afternoon, when Janet arrived, she was shocked out of her socks with what she saw when she walked into my room.  

“Well, hello there, Janet! I’m so glad you’re here!”

I hadn’t spoken that much in over a month.

I was watching the news, and said, “We’ve got ourselves a new president. “

“Oh, really,” Janet said, “who won?”

“Donald Trump won,” I said.

“Do you know who that is?” she said.

“Well, yeah.  Trump Towers,” I said.

“Are you glad he won?” Janet asked.

“Well I’m glad Hillary lost,” I said, “and maybe he’ll be good since he’s so good with business.”

Janet’s jaw was on the floor – not because of what I said – but for how much I said, and how sharp my thinking and speaking had suddenly become.

I then went on to tell her about the angels dream I had the day before.  My sudden ability to communicate so freely impressed her.

She asked if I wanted her to record a video message to my other daughter, Cathy, and grandson, Douglas.  I did (see video above).

The doctor’s hunch paid off.

The doctor later told Janet that he had given me a dose of Zyprexa earlier in the day.  Janet asked him if that was an antipsychotic drug.  

“Yes,” he said.

“Oh, I don’t want her to take antipsychotics.  They make her crazy,” Janet said.

“Do you think she’s acting crazy right now?” the doctor said.

“Well, actually no,” Janet said, “She’s sharper and more talkative than I’ve seen in a while. And her mood is really good.”

Let’s try it, and see what happens.

Janet agreed to let them continue to try a low dose of the Zyprexa, and wait and see if it continued to help me.   Whether or not it was the Zyprexa or the near death experience that helped me, I stayed on Zyprexa for the rest of my life, and never had another aggressive or angry day.  I was sweet like I was before I got dementia.  More mentally sharp than I’d been in several months.  And I very much enjoyed that last month of my life at the memory care facility.

I was happy again – for the first time in a very long time.

My mind was growing sharper each day.  I was happy for the first time in a very long time.  Maybe if I had not been given Macrobid by the memory care facility doctor, I may have lived longer, and shown even more improvement.  My personality was kinder and gentler, and I actually started making friends at the facility.  I started playing Bingo, and was managing two cards while everyone else could manage only one.  I started to enjoy my life, and was developing interests in activities.  My dementia was beginning to reverse itself, instead of the usual course of getting worse.  

The photos below illustrate what my dementia truly looked like in the absence of sedation.

Talking to Kitty Cat:

B8FD2C9B-4D2C-4893-9BC4-3890489AFC5C.jpeg

In stitches with laughter while enjoying a fun conversation with a care staff person:

AC790298-7981-4AE0-8D82-18DB9132FD1B.jpeg

My 90th birthday celebration:

6FDA946B-2978-409D-9FAC-7573FFE6B23C.jpeg

I am a firm believer that most cases of dementia can be prevented, stopped, reversed, and maybe even cured – but at the very least, helped.

My own experience illustrates that.  Janet agrees, since she saw what seemed like a miracle in me.

There are those who might consider my experience as a “last hurrah” phenomenon, where I mysteriously improved for a month before I died.  But Janet and I are not the only ones who think dementia can improve.  There are at least one thousand doctors across the U.S. with research results who agree.

Please share your thoughts and experiences below in the comments section. I would love to hear from you. ❤️


Leave a Reply

Your email address will not be published.