The following was taken from the journal of Vernon Gokey, caregiver to his wife Marianne:

Lessons Learned About Caregiving for a Person With Parkinson’s and Alzheimer’s Disease

  1. Patience!!
  2. Have the ability to be interrupted without question.
  3. Humor is important.
  4. Always be positive.
  5. Be able to answer the same question over and over as if it was asked the first time.
  6. Handle hallucinations as real, but don’t dwell on them.
  7. Relieve fears with simple explanations. They become fearful when they don’t understand.
  8. Don’t talk about what is happening tomorrow; it creates anxiety during the night.
  9. Be prepared to switch tasks without prior notice.
  10. In later stages of Parkinson’s, be prepared for falls and spills. Shakes and loss of balance become more prominent.
  11. Eliminate cleanup by using a towel under the chin when brushing teeth or giving pills. Use straws for drinking (I drilled a hole in some sippy cups to insert straws).
  12. When chewing becomes a problem, prepare food that can be eaten with a spoon, such as chicken a la king, chili, soup or food that can be cut bite size like pancakes or omelets.
  13. Become a pro at changing the subject or diverting the thinking process.
  14. Create a simple routine to be used every day. It helps maintain a constant in their life.
  15. Use satin sheets and satin gowns or pajamas. It helps to get them in and out of bed.
  16. Install handicap bars in front of toilet if possible. This allows them to hang onto the bar while you are taking down their clothes or pulling them back on. They also help when you have to wipe them and or have to apply medication.
  17. If the car has cloth seats, use a garbage bag on the seat. It makes it easier to get them in and out of the car. The bag helps to rotate them.
  18. Parkinson’s slows the reaction time. When asking a question or giving a direction, allow time for them to process the request. It may be 3 to 6 seconds before they answer
  19. Take care of legal affairs early in the progression while they still of sound mind and they can still write and sign their names. Their hand writing will keep getting smaller and because of the shakes it will become illegible.
  20. A wheelchair and a lift chair will become necessary to save your back and your time. Wheelchairs allows mobility so you can take them out of the house to socialize at grocery stores, restaurants, or malls. When I took her to the grocery store, I bought a small basket to sit on her lap. We put the light items in the basket and the heavy ones went in bags I hung on the handles.
  21. Install toilet seat hinged elevator lifts under the seats. It makes it easier to sit them down and to pick them up also saves having to buy a handicap toilet (saves money).
  22. Hire care givers to come in a couple times a week, or more often if you wish. I found the agencies could not guarantee the same person every week. And also don’t allow caregivers to lift patients. I feel that consistency is very important so I went with private care givers, one of the best things I ever did.
  23. Build ramps to the outside for the wheelchair (I built ramps to the garage, the lanai from the kitchen and the bedroom. I also built ramps into the shower for the shower chair). 

Vernon Gokey was caregiver to his wife, Marianne, for several years after she was diagnosed with Parkinson’s and Alzheimer’s. He kept a journal during this time, and  kindly gave us permission to reprint the tips that appear in this blog.

Posted: 5/9/2011 8:23:20 AM by Cathy Whitlock


Browse current and archived blog articles written by caregivers, for caregivers.

March 2014
Adult Swim

February 2014
5 Disability Insurance Issues Worth Talking About

December 2013
DBS: How it changed darkness into light

November 2013
Family Caregivers Deserve Special Recognition

September 2013
Saving $49,500 for a Good Night’s Sleep

August 2013
Growing Up with Parkinson’s

July 2013
Moments

June 2013
I Wish I May, I Wish I Might

April 2013
5 Grab-and-Go Healthy Snacks for Parkinson's Caregivers

March 2013
5 Caregiving Tips for Lewy Body Dementia

January 2013
Lewy What?

November 2012
How to Support a Caregiving Spouse: Three Tips from My Other Caregiving Half

October 2012
Bobcats and Turtles

August 2012
Build a Ramp

July 2012
A Bathroom That Works

June 2012
Lessons in Care, Lessons in Time

May 2012
Welcome to CareZone

April 2012
Dignity and Empathy in Caregiving

March 2012
Notes from "Movers & Shakers with Parkinson": How You See Your Changing Roles

February 2012
PD Inpatient "Care": Inept, Indifferent, Incompetent, Insufficient, Injurious

January 2012
Caregiver Isolation as Cultural Disease

November 2011
How to Take Care of the Caregiver

September 2011
The Disregarded Costs of Agency Care

August 2011
7 Tips for Hiring Good Caregivers

July 2011
Parkinson's and Your Voice: The Essence of You

June 2011
7 Ways a Care Recipient Can Help Alleviate Caregiver Burnout

May 2011
Lessons Learned About Caregiving for a Person with Parkinson's and Alzheimer's Disease

April 2011
Communicating With Your Partner When Speech and Voice Are Declining

March 2011
Long Distance Caregiving

February 2011
Financial Planning Webinar for Caregivers

January 2011
Caregiving Tool: A Home Healthcare Management System

December 2010
Caregiver Sanity: Three Things I Try to Remember

November 2010
Appreciating Family Caregivers

May 2010
Good Body Mechanics for Caregivers by Kevin Lockette, PT

March 2010
Taking the First Step in Your Own Care by Carol Levine

Currently: 0 (0 ratings)

Print

Each month, we will feature a new column by caregivers on topic important for caregivers of people with Parkinson's disease. Read the latest column now.

Subscribe to this blog

RSS