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
- Have the ability to be interrupted without question.
- Humor is important.
- Always be positive.
- Be able to answer the same question over and over as if it was asked the first time.
- Handle hallucinations as real, but don’t dwell on them.
- Relieve fears with simple explanations. They become fearful when they don’t understand.
- Don’t talk about what is happening tomorrow; it creates anxiety during the night.
- Be prepared to switch tasks without prior notice.
- In later stages of Parkinson’s, be prepared for falls and spills. Shakes and loss of balance become more prominent.
- 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).
- 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.
- Become a pro at changing the subject or diverting the thinking process.
- Create a simple routine to be used every day. It helps maintain a constant in their life.
- Use satin sheets and satin gowns or pajamas. It helps to get them in and out of bed.
- 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.
- 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.
- 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
- 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.
- 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.
- 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).
- 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.
- 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.