As one of my sister Bev’s caregivers and a former nurse, I try to educate family members and friends about Parkinson’s disease (PD) to increase awareness and understanding and advocate for my sister. Bev was diagnosed in 2017. She’s now 83 and has stage 3 PD.
I am especially interested in learning how to deal with Bev’s cognitive issues. Her son, her daughter, and I become impatient at times and struggle with these changes in her. Although Bev has balance, walking, hand tremor, and swallowing issues as well, it seems that her decline in memory is one of the most challenging issues for her and us.
According to the Parkinson’s Foundation, “Cognitive impairment is different from dementia, which is when cognitive impairments occur in more than one area of cognition, leading to more severe loss of intellectual abilities that interferes with daily, independent living. While approximately 50 percent of people with PD will experience some form of cognitive impairment, not all lead to a dementia diagnosis.”
People with Parkinson’s may experience different types of cognitive changes. This could be caused by several factors, such as a decrease in dopamine levels or abnormal protein deposits on the brain known as Lewy bodies. Some researchers believe that changes in the chemical messengers acetylcholine and norepinephrine may also be associated with memory loss in PD.
Bev’s neurologist orders a brain MRI and cognitive assessment tests about every six months to check her cognition and look for any changes in the amount of protein deposits present on her brain.
Bev is still able to carry out daily activities, including dressing, bathing, cooking, and baking, but she struggles with memory, concentration, and some tasks.
She says, “I am forgetful, have poor memory with names and numbers, and it is difficult to remember and focus on things. This is not only frustrating for me but for my family.”
I wanted to know how we as Bev’s family and caregivers could reduce the frustration for her and us in a manner that maintained her dignity.
To offer guidance on caring for someone with cognitive issues, author and caregiver Jo Huey shared “Ten Absolutes” for the Alzheimer’s Caregiving Institute. Following are several I have found helpful. I shared them with Bev’s daughter, who lives with her, and her son.
- Never shame, instead distract.
- Never lecture, instead reassure.
- Never say “remember,” instead reminisce.
- Never say “I told you,” instead repeat/regroup.
- Never say “you can’t,” instead do what they can.
I’ve made several suggestions about how Bev can manage her memory issues but am ultimately leaving the decision up to her.
Bev writes down her appointments and daily tasks in a notebook. She says, “After I feed Izzy [her dog] and Malachi [her cat] in the morning, I sit down, have a cup of coffee, and look at my notebook to see what I have to do for that day. I also put names and phone numbers in a separate part of the notebook.”
It helps Bev to have everything written down in one place.
The following tips have benefited Bev and reduced our stress as caregivers. It’s important to figure out what works best for each individual.
- Keep things in consistent, easily reachable places.
- Use a pill dispenser to ensure medication is taken on time. Bev sorts her medications into a container with morning, afternoon, and evening sections for each day.
- When the person is searching for a word, provide a cue, such as, “The word you are looking for probably begins with ‘D.’” This has been very helpful, and it doesn’t embarrass Bev.
- Don’t finish the person’s sentences. Bev usually needs more time to put her thoughts together. It is very tempting for us to finish what she is trying to say. We are learning lessons in patience!
- When presenting the person with a list of actions to take when making a decision, it’s helpful to write everything down. Usually, when I discuss something with Bev or provide her with information, we talk, and then I have her write it all out in a way she will understand.
- Ask questions to ensure the other person understands you. Bev’s thought process is slower because of PD, so we all need to check if she is following along and slow down our speech. She once told me, “You talk so fast, I can’t keep up with what you are telling me.” Lesson learned, but I am still working on this one!
It’s important for people with Parkinson’s to maintain their dignity and be the best person they can be while adjusting to and overcoming the cognitive issues that can occur with PD.
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