From Dr. Jane's Notebook
Going home: Living with a loved one's dementia
Memories and the ability to remember have been
described as both a blessing and a curse. While it is nothing short of a
miracle to look back and remember things that occurred decades ago, it is a
miracle that we have come to expect. And while slight forgetfulness has long
been the subject of jokes, memory loss or memory impairment may be an early
symptom of dementia, which is no laughing matter. For several years now, my
Mother has been waging the battle against the progressive cognitive decline
associated with dementia, and those of us who love and care for her have become
the foot soldiers in this battle. Here are a few things we have learned along
Lots of things happen to us as we age. We are fortunate whenever medical
problems can be solved but sometimes they canít be solved. As our bodies begin
to age, we must adapt and take care of ourselves in every way possible. Thatís
good advice for folks who have their cognitive and mental faculties, but
dementia steals our ability to remember, to learn new things, to think clearly
and to take care of ourselves. Over time, friends and loved ones with dementia
progressively lose their ability to express themselves and perform tasks that
were easy in the past. Here is where life becomes complex!
Dementia causes time to move backwards.
While the physical body continues to age in a forward direction, the emotional
development of individuals with dementia grows younger or backwards over time.
Healthy adults generally have a healthy memory and are only occasionally
forgetful, but dementia creates more consistent forgetfulness. Eventually, the
loss of memory begins to interfere with everyday activities, it is difficult
to learn new things, and easiest to access memories from younger years.
Understanding this change in direction helps family members keep their
expectations low and their patience high. Expecting your loved one to function
as before would be like asking a child to drive a car. Itís probably not going
to end well.
Sensitivity increases as abilities decrease.
Individuals with dementia are frustrated by their loss of ground and so, they
become embarrassed easily. Mild dementia is especially painful when its
sufferer sees disappointment or pity in the eyes of others. Well-intentioned
caregivers often correct and criticize their loved ones in the effort to
maintain a pretense of normality. But feelings of shame will more likely lead
to withdrawal, increased silence and fear of rejection. Like small children,
people with growing dementia are extremely sensitive to correction, raised
voices, and mockery. Caregivers must guard against becoming emotionally
abusive. Beyond bruises, it is wise to notice symptoms of depression, despair,
flinching or avoidance if your loved one is being cared for by others.
In sickness and in health, marriage matters.
The decision to care for your
loved one at home is most easily accomplished when their spouse is healthy
enough to step up to the plate and take care of their mate as they do
themselves. When my Mother was no longer able to cook or even set the table,
my Father learned to cook and now prepares three meals a day. Morning, noon
and night, they convene at the kitchen table and enjoy a meal together. The
table is always set, there is music in the background, and if they run out of
things to talk about, there is usually a book nearby with short stories which
my Dad reads aloud to my Mother. As suggested by the bumper-sticker from the
1960s, they have learned to save water by showering with a friend, and
find that it is easier to keep up with personal care if they take showers, get
dressed, brush their teeth and even go for haircuts at the same time.
Bring professional help on board.
Just as we have studied and prepared for other changing phases of our lives,
the final quarter of life offers its own unique challenges. Even the most
loving of spouses cannot do it all. For sanityís sake, it is essential to hire
a professional caregiver who can help with all types of family and household
care. Healthy spouses need time to take care of themselves, which includes
work, exercise, and recreation. Your professional assistant should help
maintain your regular schedule for meals, rest, and personal care so that the
individual with dementia remains oriented to time and expected activities. The
right helper will be respectful of your family routine, kind, courteous, calm
and consistent. The right helper will also be devoted to the care of all
family members, including the family pets.
During my monthly visits home, not only do I get
to spend precious time with my parents, but I also learn a great deal about how
they handle problems and how they maintain intimacy in their changing
relationship. One night during a recent visit, I excused myself from the dinner
table to retrieve something from the next room. Just out of their sight, I
overheard my parents talking. Just as he has always done, my Father was telling
my Mother how beautiful she looked this evening. Caring for loved ones at home
is both a skill and an art.
©Copyright, 2007, Jane R. Rosen-Grandon. All rights reserved.
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