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This holiday season, sing, and give a caregiver
rest |
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December 3, 2017 |
By Lana M. Galbraith, AD, MS
Life endlessly loops upon itself, and when we
are born our parents nurture us, clothe and feed
us, change our diapers and protect us at our
most vulnerable. With the passage of time our
roles reverse, and we become the caretakers of
our parents, offering loving support as they
decline in their golden years, bestowing decades
of love, relational wonders and memories into
taking care of parents who often become as
fragile and vulnerable as we once were as
infants.
Alzheimer’s and dementia stack the deck against
us, as they rob us of the people we knew growing
up; the people we have known throughout most of
our adult lives, as our parents slowly become
someone we learn to know anew -- often on a
daily basis.
Alzheimer’s and dementia are
massive storm fronts that slowly dismantle the
infrastructure of the brain, and with each storm
surge more and more pathways to cognition,
emotion, speech, executive functioning that
allows us to access information and
problem-solve, the ability to read and
understand social cues and the like become
distorted, eventually resembling bombed out
bridges with no way to get information from one
area of the brain to another.
Alzheimer’s and dementia take from us, and there
is no way to prevent the onslaught of decline,
which can last years.
It can be heart-wrenching beyond belief to watch
Mom no longer understand the dynamics of
shoelaces, or the importance of brushing her
teeth; or Dad, as he struggles with
comprehending conversations, or losing the
ability to read while he holds the newspaper
upside down.
In the beginning is when I believe life must be
the most difficult for the person diagnosed with
dementia. At that stage, they are still aware of
who they are, their life story, and have some
idea of the journey before them. The denial
fear, anxiety, anger, depression, and any other
emotions that become daily occurrences while Mom
or Dad struggle with the simple activities of
daily living begin to take their toll as
cognitive functioning begins sliding on a
slippery slope to oblivion; and there is no way
to stop their chaotic slip-and-slide -- it is
inevitable.
Oftentimes, family steps in and monitors Mom and
Dad, usually at home. Sometimes, home health
aides are hired to assist our parents at home,
or we somehow manage to take care of them
ourselves, as children sometimes do. Sometimes
our parents move back home with us, too.
Caregivers deserve a special place in heaven
when they take on this role for their parents,
or spouse. I cannot fathom where any of them
summon the energy to manage the 24/7
requirements of this population; yet thousands
of them take on this task without a second
thought, and often with inadequate support.
In some cases, the remainder of the family seems
to have headed into witness protection and are
nowhere to be found. I am not condemning family
members for their choices, merely pointing out a
situation that is not uncommon.
Sometimes, other family members are too
overwhelmed by the diagnosis, or are estranged
from their loved one to participate in their
care. The caregiver is then left alone in the
decision-making, not only in managing the
day-to-day-needs of their loved one, but in
deciphering what their long-term requirements
will be, because at some point, despite all the
love you squeeze into Mom or Dad, the decline
usually requires something more than one person
can manage.
Mom forgets she’s got something cooking on the
stove, and nearly burns the house down; Dad
becomes more confused and forgets where he’s
driving and ends up in another town. Your
husband climbs up on the roof to clean the
gutters and forgets where the ladder is. Mom and
Dad fall for a scam and lose most of their life
savings. Grandma just spent $1,200 on dolls at
the store.
The scenarios are as endless as humanity and the
outcomes can result in trips to the ER, hospital
stays, or worse.
This is a tremendous responsibility placed on
caregiving shoulders that eventually stoop and
bow under the pressure; again, on one hand I
cannot fathom where someone summons the
emotional resources to take on something as
devastating as the needs of a loved one with
Alzheimer’s or dementia; yet on the other, I
grasp that it is done out of love and
compassion.
I’m just not so sure that if it were me if I
would have the emotional and physical energy
necessary for the job. That does not make me
inhuman, or uncaring, but merely honest in my
assessment of self, and this is an assessment we
all need to take if we are planning on taking
care of a loved one with dementia. Don’t get me
wrong, if I was needed, I would step in and
provide caregiving for a loved one without
hesitation; I’m just not so sure if I have the
superhuman powers to maintain that role
indefinitely.
Do you have the tolerance to manage difficult
behaviors? Can you cope with the incessant
demands of an adult that is cognitively a
toddler? Can you manage changing, bathing, sleep
and behavioral disturbances with a calm
demeanor? Can you handle the 24/7 demands, often
without assistance from others? Who do you have
for support, that you can turn to if you need a
break?
This undertaking is difficult at best, and
without any sort of support system, it will take
a toll on you like nothing ever has before.
Behavioral disturbances run the gamut with
dementia.
Mom or Dad may become fearful as everything in
their world becomes new. They become combative
while showering, maybe due to sensory
disturbances, or fear of water. Stripping off
their clothes is another behavior, whether
brought on by sensory and tactile overload,
feeling constrained, or they are simply
overheated.
Colorful, abusive, vulgar language is not
uncommon. I’ve heard, “She never swore when we
were growing up.” And “Dad, has always been a
Christian, and never hit anyone, or said
anything bad about anyone.”
Please don’t apologize for the behaviors of your
loved one. Those behaviors are not a reflection
of you!
However, they are a reflection of the diagnosis,
and Mom stripping down to her underwear in the
living room or Dad swearing worse than a sailor
at no one in particular are showing us that
their brains are failing.
It is ridiculously hard to not take these
moments personally, so please hear me when I say
this: Mom, Dad, or your spouse’s behavior are
not necessarily indicative of who they were in
the past, nor a reflection of them or you in the
present.
They are dementia’s ugly stepchild coming out
for a visit, and we must mitigate them to the
extent we can, but be prepared that these
behaviors could remain around for the
foreseeable future.
While there are negatives to a diagnosis of
Alzheimer’s and dementia, there are a multitude
of positives.
Each stage of progression brings its own losses,
yet there are rewards as well. We have the
opportunity to repair broken relationships as
the person we had issues with has changed. We
await those crystal-clear moments when Mom, who
had forgotten who we are, says, “I love you,” or
Dad inexplicably climbs out of his recliner and
walks for the first time in months.
We hold out for and embrace hope, because it is
all we can do. Those bright, shining moments
when clarity returns, and we catch glimpses of
the person that used to be in the mirror that is
now dementia. We revel in their story-telling
and hang on to every word because we do not know
if our loved one will speak coherently again. We
polish Mom’s nails, or talk about the family
with Dad.
I love the sparkly, child-like innocence that is
so apparent with this population and how simple
things bring out smiles wider than the moon,
eyes glittering with joy over someone singing,
and the “real” thank-yous of appreciation.
In some ways, there is a genuineness to this
diagnosis, as our loved one is very real in the
moment, albeit a combative bear in the next.
How someone lives with a brain in such a
constant state of chaotic flux is something only
those with this diagnosis know; and they cannot
share that with us because they have lost the
cognitive and verbal acuity to do so. Instead,
we monitor them, watch their behaviors and look
for clues.
I always say that negative behavior is a result
of not being heard, and we often learn the
answers from those least equipped to tell us.
As for the stress placed on caregivers, it is
absolute and unequivocally present all … the …
time.
They hold their tears back, then let them gush
in private, because they believe they must
remain strong “for them,” their loved one. They
rail at God, question their own spirituality,
demand answers. They give up everything for
themselves to remain something for someone else.
They become exhausted to the point of oblivion,
yet they endure, and they almost always respond
with, “I’m fine,” when we ask how they are
doing.
Caregivers endure because they have hearts of
spun gold up to the task of loving someone
utterly and completely to the end, because they
take their commitment to others seriously. But
most of all caregivers endure because of those
beacons of hope, for the shining brightness of
humanity that peeks through a beatific smile, a
gnarled hand reaching out, or that flicker of
recognition.
Caregivers remain because they recognize that
humanity exists until the end, and that all
human beings deserve to retain their dignity, to
experience love and compassion, and be at peace
in their final days.
I challenge everyone reading this article to
either give a caregiver a break, or spend time
at a local facility during this Christmas
season.
The last thing a brain with dementia retains is
music, and as this is the season of giving and
music, come and belt out Christmas tunes for
others! Honestly, they will not care if the dog
burps better than you sing; but they will be
everlastingly grateful that you cared enough to
visit.
Lana Galbraith has an extensive background
in crisis intervention, case management, working
with at-risk teens and their families, and
program development, as well as eight-plus years
working in skilled nursing and assisted living
facilities with a resident population that
includes Alzheimer’s, dementia and traumatic
brain injuries. Lana is currently taking a
much-needed break from her doctorate in forensic
psychology, while pursuing options to complete
her dual licensure in mental health and
substance use disorders. |
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