Caring for an Alzheimer's patient is extremely difficult at times. There are ways to make both your lives easier, and organizations to help you do it. Here are a few tips on handling challenges and finding help.
Alzheimer’s disease has a profound impact not only on the life of
the patients, but also on the lives of the people around them. Watching
my grandmother’s quality of life diminish has motivated me to change my
own lifestyle in order to prevent the possibility that I may someday
have this disease. Not only do I eat healthy, I exercise my body and my brain.
By
far the biggest impact on my life has been my relationship with my
grandmother. She has lived with Alzheimer’s for two years, and in that
time she has become a different person. The jolly grandma I remember
has deteriorated into an extremely confused and dependent stranger.
Helping to care for her is difficult. I experience a roller coaster
range of emotions: profound sadness, frustration, and even anger. There
are many resources out there for caregivers. I have found some great
tips on dealing with some of the challenges associated with Alzheimer’s.
Handling delusions
My
grandmother, like many Alzheimer’s patients, experiences delusions. She
often believes that people who have died are still living. On bad days,
she will ask to call her sister (who died 7 years ago) 4 to 5 times an
hour. Telling her over and over again that her sister was dead was
frustrating for us, and upsetting for her. Her doctor suggested we
explain the reality only once, and then try to distract her.
Distracting an Alzheimer’s patient with activities and conversation is
difficult. The Alzheimer's Disease Education and Referral Center
(ADEAR) website has some good advice on coping when your loved one
experiences delusions. You may need to change their surroundings. Go
outside to sit in the garden, or simply move to another room. Give them
simple and familiar activities such as folding clothes, polishing
silver, or peeling vegetables. Don’t expect too much from them, and
help them to move away from the task if you see them become frustrated.
In order to get my grandmother’s mind off upsetting delusions, we often
take her out for ice cream or go for a short walk. (www.alzheimers.org).
If
you keep answering the same question, you will not be able to avoid
becoming annoyed or even angry. The best way to keep yourself under
control while helping your patient is to only answer once. The second,
third, and even fourth time your patient asks the question, do not
answer. Don’t ignore them either! Involve their attention elsewhere.
Ask them to tell you a story about their wedding day or a school
experience. Point out some pretty flowers or a painting and ask if they
like it and why. Hand them a picture book, magazine, or family photo
album. Don’t give up, keep talking about another subject or asking
questions until they answer you.
Keep a journal
I
am convinced that my grandma’s good and bad days have something to do
with the weather. I notice that on cloudy, rainy days her memory is
worse, her attention span is non-existent, and her mood plummets. I’m
not sure that there is any medical evidence about Alzheimer’s and the
weather, but I do know that many factors affect whether or not a day is
good. Stress, fatigue, and activity level affect the Alzheimer’s
patient just as they affect you.
Keep a journal and make notes on
your patient’s memory and mood, rate them from 1-10. Make note of the
weather, how much sleep your patient got the night before, whether or
not it’s a holiday or day of some significance, and what your patient
ate. Eventually you may see a pattern. You’ll know which days to expect
more memory lapses or mood swings.
Even if you don’t find a
pattern, a journal is good for many other reasons. It will help you
vent your frustrations and feelings on paper, clearing your mind and
keeping you sane. You may also make note of things that are important
to tell the doctor. Certain hallucinations and delusions can be a sign
of medical problems.
Take Advantage of Services
There
are many resources available to caregivers of Alzheimer’s patients. The
Alzheimer’s Association (www.alz.org) has local chapters which provide
services such as a helpline, special events, support groups, and
educational programs. Many chapters also offer respite care services to
give the caregivers short term breaks from full-time care (respite
guidelines available at 1-800-273-2555).
Hospice Care is also a
service which can aide Alzheimer’s caregivers. Hospice Care is often
understood to be a place where terminally ill patients go to die. In
fact, Hospice Care is a service, provided to terminally ill patients
and their families. While you may not need help with obtaining
medications or getting to doctor’s appointments, you the caregiver may
need a break every once in a while. A volunteer can come and sit with
your patient while you spend with your family, running errands, or just
enjoy being alone.
The Hospice Foundation of America website
(www.hospicefoundation.org) will help you find a hospice program in
your area. Volunteers and staff are trained to help you with the needs
of a terminally ill patient. They provide a wide variety of services,
not the least of which is a sympathetic ear.
Have a Sense of Humor
Alzheimer’s
is a devastating and heartbreaking illness. Don’t let the seriousness
of the situation envelope your life. It is almost impossible to care
for an Alzheimer’s patient when you feel sad and hopeless. It’s ok to
laugh sometimes.
Sometimes, my grandmother does some funny
things. She thinks my cat waves at her, and she waves back. In reality,
my cat is scratching at the glass door to be let in. Every time my
grandma waves at the cat, I laugh. I share the joke, and say “That cat
must like you, Grandma.” She laughs with me.
You have to look
on the bright side. Never make fun of your patient; however, when funny
happens, have a chuckle, and bring them in on the joke. Alzheimer’s
patients need to laugh. So do you.
Talk about the past
When
it comes down to it, most Alzheimer’s or dementia patients remember
their childhood better than they remember 5 minutes ago. So give in to
them, talk about the past. I have learned so much about my grandmother
that I never knew. She had a donkey named Kate, she played basketball
in high school, she was a flapper in the school play, and she was
valedictorian.
When my grandma is upset; repeating herself,
confused, I ask her questions. Did you ever win a basketball game? And
she tells me a whole story about a particular game. What kinds of
animals were on your farm? And she can tell you all about the animals,
and all of their names. She loves to remember good times, times when
she was healthier and happier. Doesn’t everyone? Distract them from the
confusion of present life, and learn a little of their history and your
own.
Being a caregiver is very difficult; at times you may feel
overwhelmed. The way to keep your mood up is to keep looking for ways
to help your patient. Try as many different activities as you can to
keep them busy, and you will benefit as well. Whatever you do, don’t
let your Alzheimer’s patient sit for most of the day. Try not to let
them turn inward. Involve them in cooking, cleaning, reading, simple
crafts. Talk to them.
There are so many people dealing with
this devastating disease. Remember that you are not alone. Use the
resources available to you to care for yourself as well as your loved
one.