SUGGESTIONS FOR
FAMILIES
About You
Your loved one has CJD or is
suspected of having CJD.
This means you are a
caregiver. As such, you have
many things in common with
others in this situation.
The following is a short
list of possible concerns
you may have.
FEELING OVERWHELMED
This feeling is very real
and common for most people
dealing with CJD. CJD can
move rapidly and the change
in symptoms can be too rapid
to understand. Questions
with no answers can only add
to the feeling of being
overwhelmed.
For answers, if there are
any, call Florence at the
HelpLine at 1-800-659-1991.
Let the CJD Foundation help
you with information and
support.
LACK OF OR MIXED
INFORMATION
Relatively little is known
about CJD. Because of this,
many of your questions may
have to go unanswered.
Researchers are working to
find answers but research
takes time. The CJD
Foundation has a
comprehensive pamphlet that
may help you understand the
disease. We can send it to
you or you can download it
from the website
www.cjdfoundation.org.
For a hard copy call or
email us and we'll mail a
copy to you.
There are many
unsubstantiated theories
that pretend to answer
questions. These theories
and the lack of information
cross the spectrum and may
be confusing. You do not
need to live in confusion.
The CJD Foundation HelpLine
will give you the most
current information.
FRUSTRATION
Frustration exists. How can
it not exist when you have
so little information and
are watching helplessly as
your loved one is changing
before your eyes?
As difficult as it may be
and as much as you may hate
this, the situation is out
of your control. You can
only control how you
respond.
The following
suggestions may be helpful:
-
Call the CJD HelpLine 1-800-659-1991. We are available to listen anytime. We can offer up-to-date information.
-
Find someone who will stay with your loved one so you can take a walk. Even if it is only for 30 minutes, that time alone can help clear your mind.
-
Find someone to talk to who will listen without judgment, suggestions or more information.
-
In the midst of your exhaustion and confusion you have this moment to be present with your loved one. Love them; be with them, even if its to sit quietly together. Do what you absolutely must do and let the rest of it go. This time is precious.
-
When someone offers to help, give them something to do. They need to help.
ASK FOR HELP
We all hate this one. Very
few people ever want to
admit that they need help.
Many people fear that they
are weak if they ask for
help.
We are not meant to be
completely independent all
the time. We have
relationships because we
need people. During this
difficult time, it is vital
to take care of yourself and
understand your needs.
Ask yourself this question,
"What would happen if I
caught a cold and could not
care for my loved one?" It
is an important reason to
take care of yourself. Now,
let others know how they can
help.
When people offer to help,
give them the opportunity to
feel useful and to help you
by running that errand or
picking up something from
the grocery store. You have
enough to deal with at this
time. Let others help you
and your loved one.