(Or…” Are you done with that yet?”)

During this COVID lockdown I’ve found a lot of time to read. And most PD groups (i.e. Michael J. Fox Foundation, Parkinson Foundation, American Parkinson Disease Association, etc.) have been sending out loads of information about research, interesting articles, webinars and Zoom programs. Several of these have focused on how to be a good caregiver. Recently a recurring topic has been patience. Some helpful tips which have been offered include:

1. Wait for your loved one to ask for help before you jump in to do a task for them.

2. Do not rush your loved one, it will only make their tremor, dyskinesia, anxiety or other PD symptom worse.

3. Allow your loved one to live as “normal” a daily life as possible.

Clearly, the only conclusion then is that I’m an over-bearing, pushy daughter who can not do this caregiver thing correctly. Or patiently. Because after nearly seven months of being stuck at home every single day, all day long, hour after endless hour together--my patience is a very thin thread.

After having perused one of these caregiver’s articles, I was eating lunch with Dad. I had everything on the table and decided that instead of offering to fill his plate for him, I’d wait to see how he did on his own. I told him he could ask me if he wanted any help. He obviously wanted crackers in his soup. The crackers were in one of those bags with a zip lock opening. He’s trying to find the opener. I’ve already finished my soup. He’s still tying to figure out where the zip lock begins. I’ve now made myself a sandwich. I’m pretty sure all the crackers are now cracker dust from being man-handled. I ask Dad if he’d like a hand. He passes me the crackers. One obstacle overcome. I’ve now finished eating my sandwich and my fruit. Dad’s looking at me. I ask if he’d like something else to eat, a sandwich, some potato salad? At this point I just go ahead and put what he asks for on his plate. I’m clearing my dishes when I notice that he is struggling with the pickle jar. My husband was the last one in that jar, which means he tightened the lid with his super “manly” strength. There is no way Dad will get it open. I can barely open it. Everything seems to be on his plate now. So, I wash up my dishes, put away the food he no longer wants, put in a load of laundry, vacuum the living room (not seriously, it just seems that long!). I come back to sit with Dad to see if he wants any dessert. He decides he’d like a cookie. When I get out the cookie bag, he just looks at me. Will you just open it, he asks? I decide my “experiment” with allowing Dad to get everything himself was an abject failure. My blood pressure was up the entire time as well. I almost chewed my own hand off trying not to say, “Just let me do that”.

The next day I go back to our usual routine. I put everything on his plate that he asks for and set out all items opened. This way we can eat together, sort of (I’m still way faster that he is). And that afternoon I see an article stating that all caregivers have to find their own rhythm, one which fits their loved one’s needs and the caregiver’s abilities and style. I think Dad and I have a pretty good rhythm actually. Most of the time. Even though patience can wear thin at times.

I thought I would share something from the Alzheimer’s Association. My Dad does have dementia. I know not everyone with PD does. But I think this is a good set of goals for all caregivers.

1. Agree, never argue

2. Divert, never reason

3. Distract, never shame

4. Reassure, never lecture

5. Reminisce, never say “remember”

6. Repeat, never say “I told you”

7. Do what they can do, never say “you can’t”

8. Ask, never demand

9. Encourage, never condescend

10. Reinforce, never force.

Remember my courageous caregivers, there is no one right way to do this. And caregivers need care too!


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