THE DEVELOPMENT OF DEMENTIA OVER 17 YEARS, MIDDLE (2014-2017), PART 2

THE  DEVELOPMENT OF DEMENTIA OVER 17 YEARS, MIDDLE (2014-2017), PART 2

            The middle stage of Beverly’s Alzheimer’s disease was a difficult period, involving a number of crises.  Still most time every day was generally happy for us both.  We were fortunate to find a supportive Gerontologist who helped us with many issues.  This physician helped us with crises and supported our efforts to slow down or stop the Alzheimer’s process.

            And we met several times with a Clinical Psychologist, who provided some reassurance for us.  It mattered to Beverly that he was originally from the Missouri boot heel, an area much like her native Arkansas.  Talking with him brought some reduction in her anxiety and some comfort about the loss of control.  I remember distinctly his response to her complaint and anxiety about how her mind was progressively failing.  He told her that this was happening to all of us, though normally more slowly.

            Early in this period, we took a trip by car to Arizona and the Grand Canyon to meet some close friends.  This was a very positive time for us to be together.  Perhaps most memorable was a helicopter flight over the Grand Canyon area, one in which joy dominated her reaction and all seemed normal.  Two years later we met the same couple for a drive along the California-Oregon coast, with stunning views of the ocean and wonderful time in some of the remaining Giant Redwood forests.  The only notable Alzheimer’s leak was when she told our friend that she did not know how her Mother would feel about her being in a motel room with “this guy,” referring to me.  She was reassured that “this guy” was her husband that she was with.  But this was a peculiar momentary lapse as she seemed to always know who I was.

            Beverly seemed reasonably normal during nearly all of the time during a regular day.  However, once in a while there would be that unexpected behavior or expressed thought.  The most striking events were in this period, perhaps in part because she seemed to be normal most of the time.  The most serious of these was the Nordstrom theft incident (written about in a blog “Theft”).  In brief, we were at our daughter’s in Maryland and went to Nordstrom’s as we often did while there.  The first day we went seemed entirely normal, as did the very next day when we went to Nordstrom’s again, until…. As we were exiting the store, Security Guards came and took Beverly away for questioning.  One Guard stayed with me and indicated that there was theft involved.  More than a half hour later, she returned, disheveled and upset and we were told they would charge her with theft of jewelry, based on video the day before and on this day.  I had not seen any of this happen, but accepted that the store had the video to prove it.  She was charged with a Misdemeanor, though a modest increase in the total value of the jewelry taken would have made this a Felony.  With good fortune, I found an effective attorney who managed the case extremely well.  I wrote a long letter about her Alzheimer’s and the case was settled for a modest fine and attorney’s fee.  In addition, there was a prohibition from Nordstrom’s that she could not enter any of their stores for 2 years.  What a shock this was that she would repeatedly take jewelry off a rack and drop it into her purse.  And, all the time, I saw none of this; she appeared to act at the moment I was looking away.  She was smart in this regard, but Alzheimer’s had changed her in a major way.  Nothing similar had ever happened before.  And nothing like this ever happened again, though I was always on the alert after this.

            Other remarkable events of this period were precipitated by our continued effort to slow or stop Alzheimer’s.  There was a report from a researcher of multiple cases (11 as I recall) of dementia where the researcher’s intervention with diet, supplements, and hormones restored nearly all of these individuals from dementia to near normality. Of course, there were flaws with the study:  a) No control comparison, b) Perhaps selecting the successful cases, c) No definitive diagnostic process.  Still the results were quite striking.  We wanted to try the same procedures.  Beverly’s Gerontologist was supportive of most of the interventions, but ethically would not prescribe the hormones used in the study, primarily that the sexual hormones were to be restored to pre-menopause  levels.  We were insistent, so the Gerontologist finally suggested a “Naturalistic” MD practicing in Salt Lake.  We started with him and, for around a year, we followed this regimen that involved taking estrogen and testosterone.  And there were frequent lab tests to monitor the blood levels.  (Testosterone once was  much too high; that had interesting effects.). And then in the Summer of 2016, the lab results showed that DHEA was somewhat low.  This is a hormone produced by the adrenal glands, another hormone that declines with age.  The Naturalistic MD prescribed a supplement to enhance the production of DHEA.  Beverly began taking the prescribed amount.  On the morning of the 6th day of taking it, she had an extreme reaction, one which produced great anxiety and paranoia.  She demanded that I take her to the ER.  There, after much testing and evaluation, there was nothing the ER folks could find.

            We returned home, not knowing what to think.  The Naturalistic MD had just undergone surgery and was unavailable for many days.  There was no backup physician nor anyone available to suggest what to do. After he returned, there was still no answer about what had happened or what action should be taken.  We never went to him again and discontinued all of his hormonal interventions.  We hoped that this was a very temporary blip.  That hope was off the mark as all got worse.  We went on a planned trip to visit our daughter in the Washington, D. C. area.  There Beverly continued to have high anxiety and some major outbreaks of paranoia.  During the worst of these spells she was extremely afraid of me without any reason to be so, though the fear was short lived.  She seemed much worse with the symptoms of Alzheimer’s:  memory disturbance, attentional difficulties, confusion.  This was a dramatic change in her functioning in the wrong direction.

            The strangest symptom to develop was hypoglycemia (weakness as if blood sugar was low and potentially an indication of diabetes) around 2 hours after eating.  This continued for many weeks, so our Gerontologist recommended an evaluation by an Endocrinologist.  Of course, I hoped an Endocrinologist could tell us what happened with the hormonal system, but the Endocrinologist was only involved in dealing with the “blood sugar” issue.  I was given a kit and directions on how to prick her finger for a little blood and use a test strip to detect low blood sugar.  This went on for weeks, but there was never a low blood sugar result, though the episodes of weakness continued.  And Endocrinology had no answer about what had happened to cause this.

            In a search of the Internet about DHEA and this supplement, it became clear that the supplement business is less than trustworthy.  For this supplement, there was no definitive scientific study about appropriate conditions for use or about side effects.  There were many unsubstantiated claims for effectiveness and isolated reports of side effects.  To this day (reviewing information on the Internet now), there is poor information.  There positive claims from some legitimate sites (such as WebMD) and  claims (but apparently no science) ranging from high safety of the supplement to a variety of side effects.  It appeared that this supplement did add to her high Testosterone level.  And, since DHEA is considered a steroid (officially banned in international athletic events), it made sense that it was termed on some sites as a “brain steroid.”  Without a clear answer to attempt a treatment, we were simply stuck with continuing symptoms, especially the dramatic deterioration related to Alzheimer’s.  Our Gerontologist suggested that the Alzheimer’s left Beverly vulnerable to a powerful effect of some other type of neurological insult.  After many months (perhaps a year), the diabetes symptom went away.  And the worst of the paranoia and anxiety diminished, perhaps because of subsequent medical intervention, as discussed next.

            A friend found us a Psychiatrist who specialized in Gerontology.  The Psychiatrist was a dedicated, thoughtful, and caring professional.  Every two weeks or so, we met with him for an extended interview, preserved in notes by his assistant.  He started a few medications, designed specifically for side effects of dementia, particular for depression, anxiety, and paranoia:  Lithium in relation to depression, Lorazepam for the anxiety, and Aricept in the hopes of keeping the Alzheimer’s itself under some control.  These were generally effective, except for the Aricept which seemed to not have any effect. Meeting with him kept me tuned in to what was happening with Beverly.  But I did come to realize that meeting with us both at the same time was not ideal.  It was too hard to be publicly honest in front of her about some aspects of her functioning, such as anger.  Recent reading in this area (e.g., Gayatri Devi.  The Spectrum of Hope ) supported this understanding that Neurologists (and other medical specialists) should have independent meetings with a dementia patient and their spouse/significant family member. 

            Anger continued to be occasional, but striking, especially as it was uncharacteristic of her in the years before Alzheimer’s.  One evening she was angry with me and left the house well after it was dark (probably around 11:00 PM).  I left and followed her around the neighborhood, keeping at a distance, concerned that she might wander off too far, as she had in the past.  She went to a neighbor’s pickup truck and tested the door, which concerned me as I knew he always carried a small pistol in his pocket.  Finally she found a woman neighbor and complained to her about me.  The neighbor, who was a health care professional, said to her very calmly:  “Beverly, you are a nurse.  Don’t you know about Sundowning? That is what you are experiencing.”  This calmed her and we returned home to a more normal situation.

            Another strange outburst happened when her sister came to visit.  We had gone out to dinner one evening and she wanted to drive around for a while after eating.  So I drove around aimlessly for an hour or more with her and her sister in the back seat talking.  When I announced that we were heading for home, she became very angry about that, swearing and loudly calling me a “bastard.”  Her sister was very shocked by that, but neither of us commented.

            I was aware of the “caregiver burden,” particularly as I had no life outside of caring for Beverly. There was no time for independent hiking or running, for fishing, for socializing.  We were always together.  Once or twice a year, our daughter or a sister of Beverly’s came and relieved me so I could go on a fishing or camping trip, which was good for us both.  I also contracted with an agency that sent a woman to “babysit” her for a couple of hours on some days, time for me to shop or hike.  These occasions were good, but never quite happy for her.  She said several times that they didn’t really “care about me.”  They seemed to be trained to ask the right kinds of questions:  “Tell me about your children.”  “What kind of music do you like?”  But she felt their lack of real engagement and involvement.  Her high EQ clearly continued, showing up as her social sensitivity to other people’s nearly hidden feelings.

            In July, 2017, we went to visit relatives of hers in Arkansas, which went smoothly.  Changing planes was more complicated, as it became clear that dealing with bathrooms was difficult.  I could not follow her into the lady’s restroom, though I was nervous about what might happen due to her confusion and disorientation.  And it was problematic to deal with the family restrooms, as ­they were always occupied.  I figured this was the last time to travel by air.  Restaurants were usually pleasant as she always had conversation with servers, including the previously mentioned invitation to come stay with us.  After one night in a hotel room, we exited the room and she announced loudly, “I’ve been raped.”  That was not true, though “it” had happened.  Fortunately there was no one in the hallway within hearing.

            When we returned, we soon entered the “week from Hell.”  She was angry every evening, usually related to something I had done or said.  I remember the cause on one of those evenings.  She had started going out on the back deck to urinate, in part because she could no longer find he bathroom in the house where she had lived for nearly 50 years.  So I said calmly that I wished she would go in the grass so I didn’t have to clean off the deck.  She exploded!  One of those evenings, she was mad at me and lay down on the front room couch; I went upstairs to our bedroom.  Nearly asleep around midnight, I thought that I should check on her.  She was gone and I searched for an hour and a half, on foot and then by car, with no success. I called the sheriff’s office.  They came immediately in three cars with flashing lights; they found her quickly, only a few hundred yards from our house.  Then two nights later (just after midnight, July 4th 2017), she was angry with me and went to bed in the guest bedroom, so I lay down on our bed.  In my early sleep, I heard a tremendous crash. Thinking she had thrown a chair or something down the 5 stairs, I went out and found her on the kitchen tile floor, bleeding from her face and in serious pain.  She had fallen the 5 steps head first.  I called 911 and, while on the phone, she said somewhat loudly, “Don’t touch me.”  Of course, the police arrived first and wanted to know what happened.  Naturally they had doubts about my story and told me: “Put your dog in a room; we want to talk to you.”  They finally said that they believed that this was an accident.  The ambulance came; I drove to the ER and was there most of the rest of the night.  After that, everything changed, as will be discussed.!

            Nonetheless it is important to note that our lives together were good more than 90% of the time.  The incidents discussed were the most striking and there were many other less serious troubles related to the dementia.  Still there were many happy times throughout most days.  We celebrated our 50th anniversary with a train trip across the Canadian Rocky Mountains and a trip to the East coast to be with our daughter & family, her brother & family, and other important friends.  We continued to eat at a restaurant at least once a day, in part as she wanted to be around people.  We had great times with friends and with family members, in town and visiting.  It is honest to say that these were mostly happy times.