|
[From
the Shared Experiences: Suggestions for those with
Alzheimer Disease booklet and audiotape by the Alzheimer
Society of Canada. To get a copy, contact your local
Alzheimer Society.]
Telling
People
Each
person reacts differently to the idea of telling people
about living with Alzheimer's disease. Some people may
want everyone to know. Some may want to tell only a few
people. Others may not be sure about whether or not to
let people know.
By
speaking out, people with Alzheimer's disease can help
others understand what it is like to live with the disease.
In turn, this may encourage people to learn more about
Alzheimer's disease and what they can do to help.
Who
to tell
The
people who are closest to you are the people to tell
first. You would likely want them to be aware of this
change in your life, just as you would with any major
illness. Tell the people with whom you are most comfortable.
Tell the people who need to know.
What
to tell
Tell
people as much as you are comfortable with. Let people
know what you need and how you want to be treated. If
you need assistance, ask for help. If you need family
members to leave you alone, to give you some space, let
them know. Speak up. Encourage people to learn more about
the disease.
Talking
to family members
Just
as you are coping with the physical, emotional and behavioural
changes brought on by your Alzheimer symptoms, your family
members also have to adjust. You may fear losing your
independence and worry about becoming a burden to your
family.
Talk
to family members. Tell them how the disease affects
you. Help them see that there are things you can do for
yourself and that you can still make many of your own
decisions. Discuss what you can do to help and support
each other.
Talking
to your doctor or health-care professional
You
may have questions about Alzheimer's disease. Make a list
of the questions you want to ask your doctor on your
next visit. Take a family member or friend with you to
take notes, help clarify information and provide emotional
support. Ask that the information be explained to you
slowly and with diagrams.
In
addition to your family doctor, you may be referred to
a specialist or to other health-care professionals. Together,
they make up a care team to monitor all aspects of your
health. Communicating your health concerns and wishes
to everyone is important.
Some
questions to ask your care team
- Where
can I go in the community to get help?
- What
kinds of activities can I do to keep active?
- What
kinds of changes should I expect over the next six
months or 12 months?
- Would
any of the current treatments for Alzheimer symptoms
be suitable for me?
- What
can I do to lessen the side effects of my Alzheimer
medication?
- When
should I come back for my next appointment?
Talking
to friends and neighbours
Friends
need to know how you are doing. Talk to them. Stay in
touch. Friends and neighbours often want to help in any
way they can.
Talking
to other people with Alzheimer's disease
Talking
to other people with Alzheimer's disease will put you in
touch with the only people who know first-hand what you
are experiencing.
Contact
your local Alzheimer Society to
see if there is an Alzheimer's disease support group in
your area. If not, you may be interested in helping the
Society start one.
Talking
to other people with the disease:
- puts
you in touch with people who know first-hand what you
are experiencing
- provides
a unique opportunity to talk with people who are sympathetic
and understanding
- enables
you to talk about your feelings
- ensures
that everything stays within the group
Another
option may be to have the Society put you in touch with
someone who can provide one-on-one support.
|
