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How to Cope With Parkinson’s as a Caregiver

Research from the National Alliance for Caregiving shows that when caregivers are asked what they want, the majority respond saying they want information about coping with being a caregiver. This information takes several forms, including knowledge about Parkinson’s disease (PD), comfort with the caregiving role and managing stress.

The following tips can help you cope:

  • Forgive yourself for not being perfect. From the day your loved one was diagnosed; your world has been turned upside down. Your daily routine will change, as may your personal standards of housekeeping and other tasks. Accept your own humanity.
  • Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety A feeling of nervousness, worried thoughts and physical distress., guilt and depression A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities.. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.
  • Determine your limits. What is your comfort level providing care? Some caregivers feel they can provide care at home as long as others in the family can put up with the disruptions.
  • Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
  • Seek out joy in your relationship with your loved one. Your hands-on duties, such as dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
  • Read all coping tips in our Caring and Coping guide book (page 27).

You may remember caregiver Jane Davis from her My PD Story. Jane wrote about her introduction to Parkinson’s starting when her husband, Gary, was diagnosed. This National Caregivers Month, we wanted to share the poem Jane wrote about where she currently is in her caregiving PD journey titled Watching.

Watching 

I watch
your body slowly deteriorating
not daily, not weekly,
but it is there.
I compare to a year past
and then I know,
your body is betraying you.

Friends notice
family too,
our children don’t want to admit.
To them, you are the superhero
one that can do anything
build anything
fix anything.
Maybe that is how it should be.

I watch you move and sway,
Darn medications.
Darn disease.
I watch you struggle to button,
Darn disease.
I watch you walk with your bent back,
I watch you grimace in pain.
Darn disease.
I watch your hands tremor,
Darn disease.
I watch those many trips to the bathroom
Darn disease
I watch you take your medications
throughout the day
too many to count.
Darn disease
I watch you keep going
fighting back that pain and stiffness

I love your drive
I love that you never give up
I love that you refuse to slow down

I watch you with admiration and love.

Call our free Helpline at 1-800-4PD-INFO (473-4636) today to ask our PD specialists your caregiving and Parkinson’s questions.

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