My father is suffering from dementia, a disease that robs the
memory by destroying brain cells. From what I can tell, Alzheimer's is one form of dementia but there are also other causes. It is generally agreed that Alzheimer’s
advances much faster than other forms.
Alzheimer's is a progressive brain
disorder that damages and eventually destroys
brain cells, leading to memory loss and changes in thinking and other brain functions. Alzheimer's is fatal, and currently, there is
no cure. Other forms of dementia, on the
other hand, may be treatable but are also irreversible. Treatment of dementia depends on its cause, but in the case of most progressive
dementia, there is no cure and no treatment that slows or
stops its progression. However, it is
claimed that some drugs have been developed that may temporarily improve the
symptoms. Alzheimer's disease results from the buildup of
abnormal proteins in the brain, which leads to the cell death that results in
cognitive decline. Alzheimer's
disease Symptoms include:
a)
Memory loss
b)
Disorientation to time and place
c)
Misplacing things
d)
Difficulty performing familiar tasks
e)
Changes in gait or walking
f)
Poor or decreased judgment
g)
Changes in mood or behavior
h)
Changes in personality
i)
Loss of initiative
j)
Problems with language
k)
Problems with abstract thinking
In my father’s case, his main symptom is
memory loss. In symptoms b) through e),
if he has any at all, it is because of limited mobility and does not seem to be
due to dementia. Symptoms f) through k)
do not apply to him; his mood, behavior and personality have not
changed, he has lots of initiative, no problems with language – he is fluent in
Spanish, his native tongue, and can still communicate in English, but not as
fluent in English since he has been speaking only Spanish for many years. His principle symptom is memory loss.
Although my father is in good health for a 91 year-old, his
dementia has been advancing steadily for at least the four years that I have
been monitoring him. He is still able to
manage his many of daily activities, going to bed, getting up, going to the
bathroom and walking around the house with the help of his cane or walker. He can no longer prepare meals and managing
steps is a challenge. Although he could
probably bath himself, several of us provide assistance with bathing, shaving
and dressing. Physically, he is able to
handle himself well for his age. His
memory, however, has declined steadily in the four years that I have been
monitoring him closely. I am certain that
his memory began to be affected earlier than four years ago, but in the last four
years he has gone from complete memory recall of all his life – a rich
historical memory of 87 years to a point now where his history of his life is
only about 10 minutes long. He can still
remember some aspects of his past if you remind him of key events and if he is
provided with names of people or clues of events, but he cannot initiate a
conversation on any period of his life by himself.
He still remembers who the immediate family is and remembers
we he is speaking to or about in a given conversation, within a ten-minute time-frame. He remembers his brother,
sister-in-law, some nieces and some nephews, if you remind him who they are. But he has a hard time remembering some of
his cousins and other friends. He can
still carry out a conversation, as long as the topics took place in the last
ten minutes and only if he is asked direct questions. Other than “how are you” or comments on
immediate observation of the weather or events happening at the moment, he will
not initiate a conversation. He no
longer seems to care for the content of a TV program and is perfectly happy
looking at the motion of the TV screen without any sound. Much of the time, when I go to visit him, I
find him staring out the window with no expression on his face. However, my father does not seem to exhibit
some of the classical symptoms of dementia I have read or been told about, such
as anger, frustration, anxiety or depression that is sometimes reported in
dementia patients. He knows that is
unable to remember things, but I don’t think he realizes the extent of his
memory loss. He does express regret for
his forgetfulness and may even have some embarrassment.
Dementia is a terrible disease. It is probably the worst disease any person
can get. It robs the life; the history, the memories and one’s awareness of family. It slowly dissolves your life. It is very depressing watching this ailment
take his life away very slowly and feeling very frustrated not being able to do
anything about it. The best we can do is
keep him company, share stories and events, help him maintain communications
with extended family and friends for as long as he is able and help him get
around. In general, keep his mind active. I fear that the death of brain cells will eventually result in the
lack of control in his motor functions as well as continue cognitive decline.
I have made it a point to have conversations
with my father on a regular basis, three to four times per week for the past
five to six years. The first couple of
years it was both by telephone and in person because he spent much of the
winter in Southern Texas. When he was in
Michigan during the summer, I would make it a point to have breakfast with him
early in the morning since both he and I are (were) early morning people. Breakfast was before 7:00 a.m. I liked the early breakfast schedule because
we were almost certain of not being interrupted. We are a family of 10 siblings and it was
difficult to have a serious conversation with him when all of us (or most of
us) were gathered.
At first, our conversations consisted of an
exchange of the news, or I would present him with ideas on science, nature, and
politics. When he was in Texas, I would
mail him articles and/or magazines in Spanish and then we would have a
telephone conversation about them. For
example, during our breakfasts we would discuss such things as tectonic plate
theory, the difference in the structure of the Mexican and U.S. federal
governments, pollution by industry, education programs, etc. We stayed away from religious topics because our
views differ slightly, I am more liberal and he more conservative in religious
matters. He was fascinated to learn new
things, especially tectonic plate theory and the reason why volcanoes and
earthquakes happen. In every topic he
would always make the comment that “God does everything for a reason.”
Sometimes in these conversations, he would
begin to speak about his life and I began to record him on my smart phone or
take notes of his stories that he would recount in great detail. About four years ago, about 100% of our
conversations began to revolve around his family history and we would spend at
least a couple of hours on Saturday mornings, in the quiet of the morning,
going over and documenting these stories.
His family had such a tragic life and his adventures as a kid were so
interesting that I wanted to document them so that my son could read about
them. Eventually, the idea began to
evolve that I should document these into a biography so that there will be a
written history of his life and leave this information for our kids, nephews,
nieces, and grand kids. It was clear that
if I did not document these, the stories would be lost.
At first, I thought of writing his biography,
but I very quickly ran into problems:
First, I had never written a biography before and second, there were
huge gaps in the memory of his life. Moreover,
much of the information he gave me could not be verified. It is not that I did not believe him, but I
needed to confirm certain aspects of his stories, correlate them with dates of
historical events to verify the chronology of events. Unfortunately all his relatives his age;
cousins, siblings, uncles had died.
There were still a few around and I needed to go and talk to them.
I spend time looking up historical records to
collaborate at some of his stories with events I could find in newspaper
records. I also found information about
family in church records as well as talking to family to try to correlate their
versions of what actually happen and what life was all about in the early 1930s
and 1940s. It became apparent that all
his stories matched with general historical records; the movement of people
back and forth across the border during the depression; floods on the Rio Grande
corresponding with storms and hurricanes, agricultural growth in Texas and farm
workers moving in from Mexico in the late 1930s and 1940s, every story he told
correlated with a historical record. I
even found records of people crossing the border and verified that he did cross
when he said he did. However, the stories
that he gave were not a complete record of his life, and when I asked him for
more information, he did not remember.
It was very frustrating.
I began to look into how we remember things
and it turns out that we only seem to remember significant events in our
lives. We don’t remember
everything. We only remember significant
things like the first kiss and possibly the events around it; a big sporting
event, our first fancy dress or suit, our first fight in school, a teacher that
made an impact on our life. The memory
of our life is just a string of events with a lot of empty “space” that our
brain thought it was not important enough to save. Things
that
happen in between these key events are soon forgotten or they fade and become
foggy in our minds. Without a diary,
most people only remember a small fraction of their lives. This memory of life can be illustrated with
the following chart:
Illustrative Map of Dad's Original Memory – about four years ago
In this idealized graph, our memories of our
life can be represented bubbles representing key events. If our whole life is represented by a
horizontal line, the memories of key events in our life can be represented by
these memory “bubbles.” The size of the “bubble”
can represent the strength of the memory or the amount of information we
remember about it. Some memories can be stronger
than others and many, many events in our lives are simply not remembered. If we apply this hypothetical chart to my
father, it would represent his memories four years ago as I began to record and
document the stories of his life. I
recorded many of his stories with my smart phone or took detailed notes as he
was recounting his adventures to me with names of people and places.
Every Saturday I would spend a couple of
hours with him and he either retold some of the stories or remembered new
ones. A little over two years ago I
began to notice that he did not remember some of the details of some of the
stories he had told me and some he did not remember at all. When I questioned him on these and read back
some of the things he had told me, he either remembered some of them with much
less detail and some he just simply did not remember. The period he had trouble remembering seem to
be stories of the period in the mid years of his life, approximately when he
was about 30 years of age to about when he was 60 years old. That would put the period from about 1955 to
1985. If we represent this in a similar
chart, the following would illustrate this loss by these reduced yellow “bubbles”:
First stage of Reduced Memory – about 2.5 years ago
I spent several Saturdays trying to get him
to recount the stories from that period in his life, but they were either never
the same as the original versions; most
of them did not have near the detail and many of them he did not remember
names, places or events, and some of them he could not recall. For example, one of the stories related how I
had to go to the bathroom during a time he took my aunt to her job (about 1958)
and he had to stop on the side of the road so that I could go, and how I would
made pictures in the snow with my pee. He
could never remember that event again.
This is one that I can personally corroborate because I remember the
event. Another example was how my Uncle
migrated to Michigan and ended up in Pontiac.
In that particular story, I actually noticed and documented how that
memory disappeared over a period of a few of months.
What would cause such a loss? Maybe that period of time might have been
very stressful for him and maybe other factors contributing to losing these
memories first. It was a period after we
had migrated to the U.S. from Mexico, my mother was pressuring him to go back
to Mexico because she did not like it here, he was working two jobs had eight
kids and we were all school age. Maybe
other factors dominated his life and the memories of that period might not have
been as significant. Or, maybe the disease
began to attack that part of the brain first where those memories resided and
were some of the first ones to be erased.
It was clear that those memories were disappearing and they never came
back.
By about a year ago (approximately one and
one half years ago), the memory loss had affected all the memories from his
whole life. He could recall some events
but the amount that he could recall was much diminished. In our chart it would be represented by the
yellow “bubbles” as follows:
Second stage of Reduced Memory – about 1.5 years ago
His memories were much diminished now. He could still remember some aspects of the
events but at a much reduced detail and many of them he could not remember at
all. Some of the key events in his more recent
life, like the studies and the events leading to his ordination as a Deacon of
the Catholic Church. When I asked him
specific questions about names of people and events, he would remember some of
them with great difficulty, but many of the names of people and events
disappeared from his memory. In the
chart I introduce a memory “bubble” at the end that I color in red. This represents his current memory. A year ago, this memory period could be
measured in days. However, it has been
reduced little by little to a point where it is now more like about 10
minutes. If you ask him something that
happened more than 10 minutes ago, he will not remember.
About six to eight months ago, I noticed a
further reduction in his capacity to remember.
Not only he could not initiate a story when asked, I had to reinforce an
event, a name or information several times before he could recall the event,
but he could not tell any information about it.
Sometimes I wondered if he just agreed with me that he remembered the
event just to please me. Hard to say, because
It was hard for me to be unbiased about it because I wanted him to remember. If I had to illustrate his capacity to
remember it would have to be as follows where the events have now been reduced
to a single points with no robust memory about them:
Third stage of Reduced Memory – about 8 months ago
At this stage, his memories have been reduced
to a single word or a single sentence about the event, when he is able to
remember the event at all. His present
memory, represented by the small red “bubble” at the end was reduced to about
ten minutes. He is no longer able to
carry a conversation about any topic from his past. He can answer questions when asked directly
and express a greeting like “how are you,” but he does not initiate a
conversation. He is no longer able to
enjoy a movie or TV program, because the plot takes place in a space of time
longer than 10 minutes. He will enjoy a
joke when it is short, and he enjoys short You-Tube videos about people and
events. He is able to have and enjoy telephone
conversations with his brother - who is 88 years of age and following the same
pattern of memory loss as my father; with his cousins, who are younger than he but
also going through similar memory loss; and some nieces and nephews. In
mornings when I have breakfast with him, I make at least one or two phone calls
to Mexico and talk to one of his relatives.
We also watch short You-Tube and Facebook videos, and he enjoys and can
talk about them as long as it is done during his 10 minute memory period.
Recently, however, in the last several
months, he is able to enjoy the conversation but he seems like not to know what
to say. I have noticed that he only does
three things in these telephone conversations now: 1) He
will respond to direct questions, if they are not too complicated; 2) He will ask about their health and 3) He will give a blessing to whoever he is
talking to.
More recently, as I sit with him to have
breakfast three or four times per week, it has been getting harder to even
carry out a conversation where he only has to answer questions. The questions have to be limited to very
conventional things like the weather at that time, the birds and squirrels
outside, how difficult it was to sleep last night, when and what he is going to
eat. He knows that he is forgetting things
but he does not know the extent of what he has forgotten and how long it has
been happening. He will, however, listen
very attentively to information on any topic and understands the concept well
and asks questions. For example, today I
spoke to him about Global Warming, how it is caused, what are the consequences,
how people will be affected. He would
ask very lucid questions of what we could do about it, what is the “government doing
about it and what will happen to all those people who will be displaced in the
seashore flooding from the polar ice melt.
Based on several test questions I made to him on Saturday, I estimate
his memory profile, in relation to our chart is as follows:
Fourth Stage of Reduced Memory – today
He still remembers a few things about his
life, and might even be able to describe, with a sentence or two, some aspect
of that event. But in order to do that
he has to be reminded with a lot of facts about that event.
It is always enjoyable to have breakfast with
dad several times a week, but it is getting very hard for
me. As I mentioned, for a 91-year old, he is a good health. But his dementia has been advancing steadily
for four years and he has gone from complete memory recall of all his life – a
rich historical memory of 87 years four years ago, to a point now where his
history of his life is now only about 10 minutes long. He can still remember some aspects of his past
if you remind him of key events. Also he
can still carry out a conversation, as long as you ask him direct questions and
the topics discussed took place in the last ten minutes. It is very sad to see
this condition in someone who was always very active, very curious, very
adventurous, and not afraid to initiate new things.
Dementia is probably the worse disease that anybody can
get. Physical ailments can either be
cured or you die. Dementia, however, can
never be cured, and you still die while you are alive. You die because it robs your life; it robs your history; it
robs your memories; it robs your knowledge of family, it leaves you with a
shell of yourself. It leaves you lonely,
but you don’t know that you are lonely because you don’t have a long enough
memory to feel lonely, you don’t have enough memories to feel sad and you grow to be totally dependent on others for everything.
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