THE DEVELOPMENT OF DEMENTIA OVER 17 YEARS, PART 1
THE DEVELOPMENT OF DEMENTIA OVER 17 YEARS, PART 1
No one would predict that Beverly would develop Alzheimer’s. All those who were friends and those who worked with and for her would be surprised. She was always outgoing and charming, amazingly in touch with whatever was happening around her. She was always so “tuned in” to others; and she was a genius at multi-tasking and keeping track of very much happening for her. This “development” is divided into 3 separate entries.
EARLY (2005 – 2014)
The earliest period extends for around 9 years. There were some early clues to the beginning of Alzheimer’s, coming from family and friends and from work. Beverly started to lose track in various ways. Of course, there was losing keys and other objects, a longstanding issue for her and many of us, but this became much more common. At home, she slowly left cooking behind; and no more house cleaning. This was acceptable to many of us, but a change for her. Most striking was a different way of dealing with money; she would cash her check from work, way too much cash to keep around, bring the envelope home and hide it, then not know where it was. I spent many hours looking through bed sheets, couch cushions, etc. to find the money. And the teeth; she had artificial teeth and sometimes took them out and hid them, only to not know where they were hidden. There were many hours spent searching for them, as much as 8 – 10 hours in one incident. The last time it was more than that; they were never found for many months, only to be found by accident.
There were other clues in social situations. She would ask me when our daughter was coming to visit; I told her. Then a minute or so later ask again. Answered again. Asked again. Our daughter remembers a notable event in this time period; we were having a family singalong and had just finished “Grandma’s Feather Bed.” Lori asked what we should sing next. Beverly said, “Grandma’s Feather Bed.” So we sang it again without saying anything about the memory slip. Such slips became more significant at work, where meetings and discussion were completely lost from her memory.
And there was also increasing inability to plan and organize. This was notable since she had always had excellent skills at divided attention, managing to deal with multiple tasks in the same time frame. This is certainly somewhat a result of loss of short-term memory. It was more complex than that, requiring thinking ahead and integrating complex information. People at her work became skillful at managing her appointments and other aspects of her administrative work for her.
This all led to a discussion between me, our children, and her close friends to get a dementia evaluation. Beverly knew a Gerontologist who specialized in dementia. (Indeed she had diagnosed Beverly’s Mother as having “probable Alzheimer’s” some years before.). In 2008, Beverly & I went together and met with the Gerontologist, who then ordered some blood tests and arranged for the standard cognitive test widely used, the Mini-Mental State Examination (MMSE). The conclusion from testing was “early Alzheimer’s. And the medical tests ruled out other possible causes. We were both shocked, but not completely surprised.
In Summer, 2008, I retired, so it became natural to discuss her retirement. She loved her work as an administrator in a large Home Health company and had great satisfaction from many important accomplishments there, such as being very involved in setting up a company Hospice program. Retirement planning for Beverly resulted in a huge retirement event in Spring, 2009. Many of her professional friends and employees attended a party at her boss’s home; and our children and families were there. There were wonderful testimonials to her remarkable contributions to home health nursing in Utah and to the company; and to her special talents at dealing with patients, staff, physicians needing home health support, and many others. Retirement was happy and it was easier, for now, to travel.
Then the issue of her artificial hip arose; some years earlier she had her right hip replaced after an accident, but the leg was about one half inch shorter than the natural left. That disrupted walking a bit. When the physician finally conceded that it was wrong and suggested how to fix it “without charge,” that seemed best. We were not aware of the impact of anesthesia on someone with dementia, even early dementia. The surgery went very well. But her two-night stay in a recovery center was troublesome. She could not remember, and did not want to follow, the minimal rules, such as to have assistance with you when you walk around, such as to go to the bathroom. The first evening it became clear to me that she would get up in the night and fall. So I found the Nurse and discussed the problem. The plan then was to have someone babysit her for the night so I could go home and sleep. Somehow when the Aide arrived in her room, Beverly knew (despite the Alzheimer’s and the anesthesia disruption to her mental functioning) that I had “reported” her. She became very angry with me and had a very unpleasant outburst, which led me to leave and shed a few tears.
In 2011 we began a relationship with the University of Utah Alzheimer’s Center, presuming that this would be the best chance of slowing or reversing the dementia. The initial meeting with the physician was very positive as he maintained a supportive attitude in relation to the dementia. Testing was successfully completed and indicated that there were some cognitive deficits, but the diagnosis was Mild Cognitive Impairment (MCI), a diagnosis typically used if the cognitive impairment is not widespread, so that the main problem is immediate memory. Further discussions with support staff involved various issues, such as driving and other daily activities and to possibilities of wandering, confusion, and reactions such as anger. The happiness of this reversal from Alzheimer’s to MCI was only to last 6 months as the next testing reverted to “Early Alzheimer’s.” Change was slow but always in the direction of less functionality.
The brain MRI, performed somewhere in this time frame, was not very informative, concluding only that there were “age-related small vessel ischemic change,” also known as “multiple mini-strokes” typical of most people her age. All other health indications were positive in all of the evaluations along the way; no B-12 deficiency, effective management of low thyroid for many prior years, etc. The only oddity was low blood pressure (typically 100/65), which at the time was not a concern. More recently, there is some evidence that low blood pressure may contribute to early dementia, presumably because the uphill route from heart to brain may be less than effective when blood pressure is too low.
By 2014, testing at the Center had become aversive to her. She had always known when she was failing a part of the test; failing aroused her anxiety and blended it with shame. The last time she was tested, she came out of the room where she was being tested in a very angry state. She told me that he showed her a wooden block and asked her to describe it; that was so easy and so demeaning that she refused to do this task. I could only think that this reaction reflected earlier failures in the testing.
It also became clear that the Center had no intervention that would help her function better or slow down the Alzheimer’s process. And I came to understand that the Center had a strong, if not primary, interest in enrolling her in research studies. She was so averse to the psychological testing that she refused to be in any research study. Then the last research study offered was about a procedure that involved drilling two holes in the top of the skull to insert a biological agent that was self-replicating into the parts of the brain affected by the disease. As far as I could determine, this procedure had not been tested on humans before. Our children and I agreed we would not even ask her if she would listen to the Center staff propose this to her; she would not have done it anyway. This soured me on the Center as this study did not seem to fit within my ethical bounds for her or anyone else, given the state of the research. We never went back to the Center.
Wandering was an occasional issue; once she escaped without my knowing it, with my resultant fear for her life. It was a cold Winter evening sometime in 2014-15. There was snow everywhere and by the time I knew she was gone it was dark and cold. For more than an hour, I drove many blocks around the house without success at finding her. Then my phone rang with a call from her phone. The woman who had found her used Beverly’s phone to call and told me where they were, at least a mile’s walk, largely up the fairly steep roads east of my house. She was safe, and I drove there immediately and brought her home.
One time I drove to a previously unknown shopping strip mall to pick up equipment for Erik’s work. It had become increasingly risky to leave her at home alone, so I took her. Then she refused to get out of the car to go into the store with me; I figured I knew exactly what I was getting at the store, having called in advance and could be back in 5 minutes, which I did. When I got out of the store, she was no longer in the car; I went in every shop in that strip but no one had seen her. I began driving around and found her behind the mall, walking with a woman who seemed to know that something was wrong.
And there was the time she drove and dropped me off for a haircut with a stated plan to get a coke right next door. After the haircut, I could not find her and called her phone repeatedly. After an hour and a half of calling and standing on the street (happily in good weather), a woman answered. Beverly was more than 5 miles away and had gone in a building to figure out what to do. This woman got in her own car and led Beverly to where I was.
There were occasional bouts of anger, sometimes over my failing to know how to deal with her. Not disagreeing or criticizing, etc. And sometimes the outbursts were a surprise. Once at the parking lot at the nearby shopping center, I said something very innocent that she interpreted as criticizing, so she became angry and left the car. I followed her in the car, but she continued to be upset. I parked the car and walked with her until my apologies finally settled her enough to resume normal activity.
One Summer we were driving to Nordstrom’s as I wanted to buy her a nice watch as a birthday present. I was wearing shorts; she decided, after we started driving, that I should not go in Nordstrom’s dressed in shorts. I disagreed more than once. She became angry and grabbed the steering wheel pulling hard to the right. Fortunately I had a strong grip on the wheel preventing us from hitting a large concrete wall that was part of the access ramp to the Interstate. I had not yet learned not to disagree.
We were both in a group that sang 4-part arrangements of popular songs. She always had a wonderful voice and learned parts easily despite not reading music. Members of the group enjoyed having her warm, happy spirit around. We had a few Christmas performances and performed the general repertoire other times (such as “Someone to Watch Over Me” and “My Romance).” Around late 2014, this ended for her as she could not quite learn the music.
Yet it must be stated that these problem incidents were a small part of day to day activity. She remained happy and cooperative, especially fulfilled by being with other people. And people loved having her around. The strange part was that she demanded that we eat out at least once a day. She needed to be around people, even those she did not know. And she could always manage a conversation or two or several, with servers and/or other patrons. Often a server was invited to come to our house and our address given to them. This was especially striking when we were out of town and a server loved skiing. They were invited to come and stay with us. Such happy interactions brought me happiness, too.