- Get help
early -- counselling, assistance with caregiving duties, etc.
- Involve your
family from the beginning by sharing your concerns with them.
- Access all
the information you can about the disease and educate yourself as much
as possible about its progression.
- Have an awareness
of the losses to come, such as incontinence, inability to dress, etc. ,
so they are not totally unexpected.
the hidden grief component of your anger, anxiety, guilt and depression.
Expect adaptation, but not resolution, of your grief.
your grief and seek out someone who understands it.
the signs of denial: for example, you insist, "I don't need any help."
"Nothing's wrong. Everything's okay." "The doctor has made
a mistake she doesn't have [HD]." "He's fine today, so he's getting
better." "No, we don't need power of attorney." "Placement
in a nursing home is not an option; I'm keeping her at home.
your right to feel emotionally off-balance.
- Learn to
"let go" from the start and share your caregiving burden with
others. Your loved one can survive a few hours without you.
- Forgive yourself
for not being perfect.
- Stop trying
to be perfect: caring for someone with a chronic illness means your world
has been turned upside down and you will probably have to compromise some
of your personal standards of housekeeping, etc.
- Join a support
- Take care
of yourself physically and emotionally. Have regular check-ups. Get as
much rest and respite as possible. Eat well-balanced meals. Give yourself
time to cry. Don't be afraid to acknowledge your feelings of anger, anxiety,
helplessness, guilt and despair.
- Hang on to
your sense of Self. Keep up your regular activities as much as possible
to help preserve your identity.
- Take one
day at a time. but don't neglect to plan for the future. Good planning
can include getting a power of attorney, accessing community care early
and filling out placement papers.
- Be kind to
yourself. Remember you are experiencing normal reactions to abnormal circumstances.
- Learn how
to communicate differently with your loved one if cognitive and language
abilities decline. Good communication strategies help to avoid frustration.
- Make sure
your family doctor is someone who is willing to listen and understand.
- Accept yourself
for being human; even if you "lose it" sometimes, give yourself
a pat on the back for doing the best you can.
action plan to help avoid caregiver burnout.
support Counsellor for Caregivers of people with dementia.
Adapted for Caregivers coping with any disease. [as published
in Horizon (quarterly publication of the
Huntington Society of Canada) No. 78
To Other Dementia Directories
to Huntington's Directory