Here are seven things to keep in mind if
you’ll be visiting someone with
Alzheimer’s or dementia in the coming
weeks:
Understand why you
feel the way you do. There’s nothing
joyous or merry about the fact that
someone you love has a degenerative and
ultimately fatal disease. So even though
this is supposed to be “the most
wonderful time of the year,” it’s
completely normal for you to feel sad,
confused, worried, or even frustrated by
the prospect of coming holiday
gatherings.
Especially if the
diagnosis is fairly recent, family
members and friends tend to feel some
mixture of fear and dread as the season
of celebration approaches. That’s
because we know on some level that
things have changed forever. We are
losing the holiday experience and
beloved traditions as we’ve always known
them, so of course our emotions are
going to take a hit. It’s very important
to admit and articulate to yourself—as
well as other family members—why you’re
feeling uncharacteristically stressed
and upset.
Manage your
expectations. We live in a society
that’s inundated by Hallmark holiday
images: families gathered happily around
the menorah or Christmas tree, laughing
around the dinner table, or singing
favorite holiday songs. Even if you’ve
somehow managed to achieve this type of
complete holiday bliss in the past
(which is unlikely), you need to know
that this year will not be the same.
Don’t set yourself up
for disappointment by dwelling on the
past. Even if you have spoken to Dad
recently and he sounds good, realize
that celebrating with him will not be
like old times. Alzheimer’s and dementia
will dramatically and permanently change
aspects of your father and his behavior.
So trying to force him—and your family
as a whole—into a pre-disease holiday
template is like trying to fit the
proverbial square peg into a round hole.
While it might sound Scrooge-like, it’s
wise to hope for the best while
preparing yourself for the worst.
Acknowledge the
elephant in the room. For all families
with a loved one suffering from
Alzheimer’s or dementia (especially if
that person is nearing or in the late
stages of the disease), there is an
800-pound elephant standing in the
middle of the room, right next to the
stockings, garland, and snowglobes.
What if Mom dies on Christmas or during
Hanukkah? That’s the worst thing that
could possibly happen—it would
absolutely ruin this year, and it would
attach bad memories to the holidays for
the rest of our lives.
I don’t doubt that
the thought has occurred to you, and I
bet that you feel guilty and selfish for
considering it. You’re probably
reluctant to express this worry to your
family members for fear of being
perceived as depressing or morbid. But
the fact is, you have to deal with
reality—a death on Christmas could
happen. You don’t need to insert this
dreadful “what-if” into every
conversation, but it might be helpful to
discuss it with a few close loved ones.
You might be surprised when they admit
that they’ve been considering the same
possibility.
Don’t expect family
dynamics to change. Consider this
scenario: Grandpa has been diagnosed
with dementia, and he wasn’t in the best
of health to begin with. Realistically,
this might be his last holiday, and
everyone knows it. So of course your
brother will tone down the
passive-aggressive jabs, and Mom will
refrain from openly criticizing your
decisions so that everyone can enjoy
this time as much as possible…right?
Unfortunately, that’s highly unlikely.
A family member with
Alzheimer’s doesn’t prevent everyone
from reverting to their old roles. So if
your cousin has a tendency to ask
inappropriate financial questions,
she’ll probably continue to do so this
year even if you expect her to be on her
best behavior around Grandpa. If you
know this going in, you’ll be much less
frustrated when your family acts like,
well, your family.
Be sensitive to the
needs of the patient and the caregiver.
If you don’t see your loved one and her
caregiver on a regular basis, you might
not be aware of just how much their
daily lives and needs have changed.
Before visiting or hosting, check with
the caregiver to make sure that you
understand the “new normal.” For
instance, maybe you’ve always brought a
bottle of wine to the big holiday
get-together for toasts. But this year,
sparkling grape juice might be better
since it won’t interact adversely with
Aunt Penny’s Alzheimer’s medications.
Take extra care to
think through how you do things and make
decisions based on reality. For example,
if you have small children whose
exuberance might overwhelm Grandpa, talk
to them beforehand about how to behave.
If you have a cold, reschedule your
visit so that he won’t catch it. Don’t
decorate with poinsettias since they are
poisonous. And realize that this year,
maybe your visit should end after two
hours instead of eight. What’s
appropriate will vary from family to
family, so stay in the loop with yours.
Arm yourself with
knowledge and meet your loved one where
he or she is. If you are unfamiliar with
Alzheimer’s or dementia, you might be
reluctant to interact with your loved
one. That’s normal. Most people who
aren’t the primary caregiver are unsure
of what Mom is capable of doing, how to
approach her, how to make her feel
comfortable, etc. That’s why it’s a good
idea to have a basic understanding of
how patients at different stages of the
diseases will be able to handle
different levels of interaction and
activity. Everyone is best served when
you meet Mom where she is instead of
walking on eggshells or trying to force
a conversation that’s no longer
possible.
Here are some basics
to keep in mind:
In the early
stages:
• Don’t be afraid of Uncle Joe because
he has been diagnosed with Alzheimer’s.
He has a disease, but he is still the
same person. Be yourself around him. If
he has always complimented your smile or
your sense of humor, display those
things!
• Don’t wait for Grandpa to feel
comfortable enough to join the
conversation or activity on his own.
Make a point to include him. Ask,
“Grandpa, I know that you love your
keepsake ornaments. Would you like to
help me hang some of them on the tree?”
• Ask specific yes and no questions—they
will be easier for your loved one to
understand and answer. For instance,
“Would you like me to pass you the
gravy?” would be more effective than “Is
there any dish you’d like more of?”
• These are diseases of forgetting, and
memory loss will include words
and—eventually—the fundamentals of
communicating. When conversing, it’s
okay to offer a word or phrase that Mom
seems to be searching for—as long as you
do so kindly.
In the moderate
stages:
• Eventually, many dementia and
Alzheimer’s patients have trouble
remembering names. Even if you’re close,
it’s a good idea to start conversations
with an introduction such as, “Hi, Dad!
It’s your oldest son, Nathan. It’s so
good to see you!” If you have to
re-introduce yourself mid-conversation,
try to work your name in without
embarrassing the patient; e.g., “My
friends are always telling me, ‘Nathan,
you are the funniest guy at work!’”
• Patients often feel anxious or on edge
because they’re confused about whom
they’re with, what’s going on, or where
they are. It’s best not to startle them
unnecessarily so approach them from the
front and make sure you don’t initiate
physical contact until your loved one
knows you’re there.
• Especially as these diseases progress,
patients feel uncomfortable and
overwhelmed by crowds. Remember that
one-on-one conversations in areas
without distracting movement or sound
will be most effective.
• If you’re having trouble talking to
Grandpa, keep in mind that he is likely
to remember older memories as opposed to
newer ones. Remind him of those things.
You might say, “I drove through Illinois
on my way here to see you, and I know
you grew up on a farm there. Will you
tell me what it was like growing corn?”
• Dementia and Alzheimer’s patients are
known for being repetitive. (Partially,
that’s because telling a familiar story
is comforting to them.) It’s natural to
feel somewhat bored or annoyed when Aunt
Sue tells the same story five times in a
row, but remind yourself that this
repetition makes her happy—and it
doesn’t hurt you. Be patient. If
possible, you can steer the conversation
to another topic by saying, “That
reminds me…” or, “I know what you mean!
Last week I…”
• Your loved one might not remember your
name or all of the memories you once
made together, but he will still
appreciate hearing sincere compliments
about himself. Even if a behavior is
unnecessary, you can still say, “Thanks
for checking the locks—it makes me feel
good to know that you’re helping to keep
us safe.”
• If there’s going to be a large crowd
of people at an event, ask someone
capable to stay near Mom at all times.
This person can help her interact and
feel included, as well as make sure that
she and others don’t feel needlessly
uncomfortable. Remember, if interactions
become too stressful, take Mom back to
her room. There is no reason for
everyone—Mom included—to be subjected to
an uncomfortable situation for the sake
of “being together.”
In the late
stages:
• In the late stages of the diseases,
Alzheimer’s and dementia patients might
not be able to carry out a simple
conversation. If that’s the case, just
sit near your loved one. A hug or a
squeeze of the hand can still be
meaningful and comforting.
• Long after many memories, skills, and
abilities are gone, patients can still
appreciate (and often respond favorably
to) music. Play favorite holiday songs
for your loved one and sing along!
And for caregivers:
Let yourself off the hook! The holidays
can be especially trying for
primary caregivers. After all, you’re
responsible not only for yourself but
for your loved one every day. It’s
crucially important for you to make time
for yourself in the midst of the holiday
bustle (read: chaos). Start looking at
your schedule, deciding what you want to
do on your own, and making plans now
because holiday schedules fill up fast.
If you want to renew spiritually, for
example, arrange for someone to watch
Mom while you go to temple or Mass. The
same thing applies if you need to do
some holiday shopping or attend your
spouse’s company party.
Most importantly,
caregivers, manage your expectations. I
used to absolutely dread the holidays
because I’d try to host the perfect
family gathering in addition to taking
care of Mom, and they never lived up to
my Hallmark-level expectations. If
you’re hosting and have formerly prided
yourself on your Martha Stewart-esque
abilities, let yourself off the hook. I
can’t stress that enough! Things have
changed, and you have to adapt. For
example, maybe this year you buy
pre-prepared food or turn the gathering
into a potluck. Overall, think about the
time together and not the meal, décor,
and trimmings.
When you know what to realistically
expect, the time you spend with your
loved ones this holiday season will be
greatly enhanced. And remember, don’t
push yourself too far or beat yourself
up for not living up to “how things used
to be.” If you remain positive and
adaptable, I promise this season can
still be full of celebrations to
cherish.
