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I realized that when I asked how we can make caregivers life easier, I may have been unclear. I was asking about what we talk about & questions. I also feel that there are conversations & questions that caretakers don’t realize how it makes it harder for us.
Neither position is easy at all. Also what you read helps one person may harm another. The best thing is to ask what you can do or say with one another & be prepared for an honest answer
@A MyParkinsonsTeam Member, I have been on both sides of this question, or at least I worked closely with my great grandmother for days and at times for weeks. I understand how different that is from being a caretaker of someone with Parkinson's. Neither am I inexperienced as I spoon-fed my great grandfather, helped to make his meals, and often entertained him. I don't know how cognizant Grandpa Harry was of all that Grandma Amy did for him. Whenever Whenever he wanted anything that he couldn't do himself, he would call her name. If I was there, and she was busy, I would ask him if I could get something for him. I was glad to accommodate if I was able, or I would convey the message to Grandma if I couldn't help.
My close proximity to both situations, allows me to compare the vast differences between Grandma Amy and @A MyParkinsonsTeam Member.
They were born in different centuries. Grandma Amy was born in 1895; Bart in 1954.
Grandma Amy was the oldest daughter in the family so when her mom died, my grandmother only 16, it was expected of her to assume the household duties as "the lady of the house." She took care of her 4 younger siblings, cooked and cleaned for the household until she married and cared for her own home. She worked as a nurse, caring for wounded soldiers that came home from both World Wars. Grandma Amy also cared for her father when he could no longer live alone. Grandma, therefore was an experienced caregiver by the time Grandpa was diagnosed with Parkinson's.
Bart had no such preparation, and I am in no position to teach him. I do appreciate that he reads everything he comes across about Parkinson's and doesn't mind when I share useful information with him. He has pulled back on any church activities in which I can no longer participate. He tells people that I am now his ministry, which is bitter-sweet to hear. I hope that when I can no longer attend church, nor be left alone long enough for him to attend, that some of the ladies at Little Band would offer to sit with me once in a while, so he can attend at least once a month.
I don't know if this was the response you were looking for, but it's all I have for now.
What a thoughtful and important point. The relationship between someone living with Parkinson's and their caregiver is deeply personal, and communication really is at the heart of making it work for both people.
You're absolutely right that what helps one person may not help another. There's no universal script for these Show Full Answer
You shared your heart- thank you
Cindy, Bob understands what you mean now, and you make an important point. You were not only asking how to make the physical work of caregiving easier. You were asking how our conversations, questions, and words can make life easier—or harder—for both the person with Parkinson’s and the person providing care.
Neither position is easy. The person with Parkinson’s may feel frightened, frustrated, dependent, or misunderstood. The caregiver may feel exhausted, worried, unappreciated, or afraid of saying the wrong thing. Sometimes words intended as encouragement can sound like pressure. A question meant to help can feel like criticism. Advice that comforts one person may upset or overwhelm another.
That is why your suggestion may be the best starting point: ask each other directly.
“What can I say or do that helps you?”
“Is there anything I am saying that makes this harder?”
“What do you need from me today—advice, help, encouragement, or simply someone to listen?”
Both people must also be prepared for an honest answer without immediately becoming defensive. Honesty should be offered kindly and received as an effort to improve the relationship—not as an attack.
Caregiver and patient are on the same team, but they do not always experience the same game. Neither can read the other’s mind, especially when both are tired, frightened, or overwhelmed.
And Bob says:
One person wants questions; another needs space.
One wants encouragement; another a quiet place.
One may want advice; another needs an ear.
The best way to know is to ask and truly hear.
Long before Parkinson’s entered our days,
we worked through life’s troubles in many different ways.
We learned to survive by speaking what was true,
and listening with care to what loved ones went through.
Communication is not a new lesson to learn;
it is one of the tools to which we can return.
We can use those same skills as we travel this road—
sharing our feelings and lightening the load.
Ask with some kindness, and listen with care;
speak what is honest but always speak fair.
No perfect words work for everyone we meet—
so, ask what helps, then adjust your feet.
Neither side is easy; both carry a load.
But honest communication can soften the road.
And when the wrong words accidentally come out,
say, “Let’s try that again”—that’s what teamwork is all about, my friend!
Mine were from Holland ❤️
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