By Betty Weiss
You finally got past the
denial and took your loved one for a diagnosis. Was it 'dementia,'
'possible Alzheimer's,' 'dementia of the Alzheimer's type,' or just
'Alzheimer's'? The possibilities are endless.
Dementia is the key word here. Dementia is
neither a disease nor an illness. It is a term describing symptoms that
may include repeating things, language problems, getting lost in familiar
places, inability to follow directions, disorientation about time, people and
place; neglecting personal safety, hygiene, and nutrition; unable to solve
simple tasks, trouble making change, mood swings, agitation, etc. It was
these odd behaviors--dementia--that ultimately sent you to the doctor.
You may have thought it was Alzheimer's, and you could be right.
Alzheimer's is the major cause of dementia, but it might be something
else. Dementia can be caused by Parkinson's, Huntington's, kidney, liver,
heart or lung disease; strokes, tumors, reactions to meds, infections, diminished
oxygen, excessive alcohol or drug use, head injury, nutritional deficiencies,
fluid in the brain, etc. Because some dementias are reversible, it is
critical to find the cause. Dementia is not part of normal aging.
Alzheimer's, however, is definitely a disease.
Besides tangles and plaques, the Alzheimer's markers found in the brain
at autopsy, there are other brain changes. Nerve cells vital to mental
abilities die. Connections between cells fail. Lower levels of some
brain chemistry may impair language, thought, and memory. Our brains also
control numerous body functions we are unaware of--circulation, breathing,
blinking, swallowing saliva, digestion, heartbeats, etc. Eventually,
those things are also affected. Alzheimer's is a terminal disease.
When my husband's brain could no longer control his automatic breathing, he was
given oxygen to insure a peaceful passing. Scientists do not know what
causes Alzheimer's. A few meds may delay its progress in some people,
sometimes, but there is no cure and no way to halt its ordained
destruction. It is not a part of normal aging.
A diagnosis of
Alzheimer's is sad and frightening. Usually it is very slow moving. Lucid
moments come and go all along the way; so many years of normal, happy living
often lie ahead. On average, patients live about seven years after
diagnosis, but it is not uncommon to live another twenty. My husband
lived for ten, but I know he had it many years before going to the
doctor.
Something important to
understand and remember.
Because people with dementia and Alzheimer's may have many lucid moments,
because they look the same and often act normally, those around them tend to
think there is nothing wrong, they can understand and remember when they want
to. They're putting on an act, looking for attention. If Dad
was able to lock the gate yesterday, he can certainly do it today! But
think of memory as a sand castle at the ocean's edge, perfectly fine until the
tide changes. A little lap of water nibbles away at the outside edge, no
one notices. Later, water comes up at another place, takes a bit more but
leaves most of the castle still intact. Parts gone with the receding tide
are lost forever and you don't know exactly which ones they are. As the
castle slowly disappears, so does the ability to understand. So, yelling
at those with dementia, insisting they remember, explaining this and explaining
that, only bewilders them and frustrates you. As cells die, their reality
changes; it is no longer the same as yours. It takes some doing, but
learn to deal with whatever outrageous things they say; they truly believe what
they believe. You cannot restore functions that no longer exist, but you
can keep your home as calm as possible, move into their reality, understand
what it's like for them, give lots of love, and make things easier. No
small challenge.
If you feel
uncomfortable with your doctor, don't hesitate to find another. Most
doctors are never taught much about dementia. A neurologist or
geriatrician is a good place to start. You have a long road ahead and
you'll need all the experience, expertise and support that a knowledgeable
physician can provide. If there is a large university or training
hospital nearby, find out if they have an Alzheimer's or Memory Clinic.
Betty Weiss is the
author of the best selling Alzheimer's Surgery: An Intimate Portrait,
and When The Doctor Says, "Alzheimer's:" Your Caregiver's Guide to
Alzheimer's & Dementia. She does not give medical advice. www.geocities.com/caregiving4alz
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