Saturday, April 18, 2020

The Presumption of Caregiver

The fact is when you are single
Parkinson's is not the same disease
We need to be in the mix. We're not.
So will you share this poem, please?

Back in the dark ages, 
When I was diagnosed with PD
There was no social media, no webcasts 
(Yes, there were computers and TV!) 

To learn about Parkinson’s disease
We went to conferences for education 
Where real live people were brought together 
Often by the Parkinson’s Disease Foundation. 

Most every presenter 
Polled the audience to see 
Of those attending, 
How many had PD? 

I would raise my right hand 
(My left one would not pay attention) 
Put it down, ready to raise it again 
Anticipating the next question. 

"Those of you here today 
Who take care of a loved one with PD, 
Please raise your hands up high.
Awesome, now I'll tell you a little about me.”

I would raise my hand for both
I am a patient and my own caregiver, too 
No one ever discusses how we will manage 
Like, what if we got the Coronavirus flu? 

Parkinsons patients managing PD & life on their own
Are more anxious, understandably so 
We have to rely on an unreliable body 
Every where we go.

Think about how your life would change 
Without the help you get every day 
Simple perks you may take for granted, exhaust us 
Whatever we take out, no one else ever puts away. 

No one else makes meals or beds, 
No one hears or helps us if we fall
No one to assure us we will be okay
If we hit the wall.

No one we can talk to each day 
Our voices get extra weak 
So when we get on the phone
We can barely speak.

We have no one to accompany us
To our endless doctor visits 
No one to validate for us
The small animal in the corner is fictitious. 

No one objective 
To track our decline  
No one who knows 
What we were like at baseline.  

No one to help us reach way up high 
To get what we are after. 
Small tasks like that, gone wrong for us 
Can end up in disaster. 

It is dangerous to live alone. 
We would not know if our house reeks. 
We could be living with toxic fumes
I've lived for days with a gas leak. 

No one to help us make an exit
Fatigued and needing to go back
Meds off, freezing alone in public
Results in a massive panic attack. 

We have the same challenges as others 
But our thoughts have an added layer 
Thinking how hard a particular symptom is now
Worrying about how we will manage it later.

We are at higher risk 
For life to prematurely end. 
Last year it hit close to home
When I lost my best PD friend. 

The problems we have are left out 
Of virtually every conversation 
Especially when strategies are given 
At the end of webcasts and presentations. 

Maybe there are no solutions
To the conundrum we are in.
Including us in the conversation
Is a good place to begin.

 If you work with PD patients 
 Please don't make the assumption 
 We all have someone in our lives, 
 The Caregiver Presumption.



  1. This is a situation that I have been aware of for many years. My wife has a condition called Huntington's Disease - of which about 1/3 the symptoms are similar to Parkinson's. I have often wondered how people who are in this situation manage, sometimes while taking care of other family members that are more symptomatic that they are.

    Then I realized that regardless of where you live with someone or not, you are not every really alone. You always have someone with you, a caregiver.

    A lady in our church had PD, and whenever she was having particularly stressful time, she would always see a man (and always the same man) standing in the corner smiling at her. She said that although he never said anything, but whenever she looked into his eyes, she always felt warm, safe and comforted. As you might expect, her daughter (who never saw the man) announced that her mother had started "hallucinating" because "everyone knows" hallucinations are a symptom of PD.

    Just like how "everyone knew" the earth was flat, and "everyone knew" the sun spun around the earth, and "everyone knew" that there were canals on Mars. (I particularly like that example because when I was in school we had a science textbook that even had pictures of them taken through a telescope!)

    So, which of the two, the mother or the daughter, do you see as being right? Well that sort of depends on your view of reality. If you buy into the idea of a democratized reality where we all get to vote on what is "real", you will likely side with the daughter. If not, you will support the mother's position. For myself, as an engineer, I am firmly in the Mom's camp. I hope that isn't to surprising, but I believe in evidence - data. I have heard of too many situations where "imaginary" things turned out to be very real indeed. For example, microbes. People who saw the first bacteria under a primitive microscope were deemed to be insane, ditto the inventor of the vacuum tube.

    So I say again, no one is alone - even you. If you disagree, fine, show me the data...

  2. I'm so sorry you are alone! I'd LOVE to come see you.... but alas we can't. DANG IT. Please know I am thinking of you and praying for your safety always