December 01, 2023
Good morning, Carers – care partners and caregivers all,
With all that you do I am impressed with the number of you who found the time to write with questions for the new column that---drum roll---starts today!
Of course, all your questions will be posted anonymously.
To start I’ll respond today to a pair of very general questions. General, because they apply so broadly. Important, because they frame the whole way we respond as caregivers.
Really, these are two most common questions of all.
1. How can I do this as well as I can?
2. How can I cope?
So, channeling Ann and Abby, let’s start.
My husband was diagnosed with Parkinson’s very recently – just in the last month. Of course, we are shocked. He’s been fairly stoic, saying that he will find a way to manage. I’ve been the one to read and research online and in books and, frankly, I find it daunting.
How do I do this? What do I do?
Perplexed and overwhelmed.
Dear Perplexed and overwhelmed,
Yes, a new diagnosis of Parkinson’s is a jarring disruption to the life you are living now, and to what you hoped and expected for your future. And I know that if you have been reading online and trying to wrap your head around what this means, you may indeed be feeling swamped by the sheer amount of information and advice about PD itself.
My response to you, since you are early in this process, is to take a step back.
You may be feeling your own unique combination of relief at getting a clear diagnosis from your husband’s doctor, and dismay at the huge job you have discovered.
But for better or worse, Parkinson’s is most often a long game. You don’t have to do anything right now to fix things, or to make it all right. PD doesn’t give us many gifts, but it often gives us the gift of time.
I suggest that, for a day or two, you close your computer and your phone and just take stock. Find out what is affecting YOU most right now. You’ll have plenty of time to develop the knowledge, and resources and skills that a loving partner employs to support their PWP. And there are very many resources to help people with PD (PWPs) to manage their own condition.
I have gathered one small section of my book to make it easier for you to find a path into the essential knowledge. You can download it here. And, if learning online is easier for you, the Davis Phinney Foundation is a great resource.
But please, Perplexed and Overwhelmed, start with you.
Before you look for the one right answer, take the time to learn what your own reaction is. And please, don’t think that doing this is selfish. There are two people in a PD relationship, and I believe that your self-awareness, giving equal weight to each of your needs and reactions, will be a source of strength over this long process.
And look at my response to the second letter in today’s column to find some more of my thinking about coping.
Take your time, take a breath.
Hugs x 4,
Can you tell me how I deal with the feelings of frustration for what I have lost? How can I accept that my loved one is the center of focus but still maintain my own feelings of worth?
A new caregiver
Dear New Caregiver,
The questions you raise are so pressing, and I sense that you are feeling pulled in two directions (at least). You say that your loved one is the “center of focus.” And yes, he or she is the center of their own focus ( I still haven’t figured out how to be gender-neutral in the way I write – so I’ll use “they.”)
They have their own unique way of responding – and that will change and develop, grow and shrink, over time. But your answer really lies in the last part of your message.
You want to maintain your own feelings of worth, and yet I wonder if you think you aren’t really entitled to do that.
I sometimes have talked about the voluntary sacrifices that we caregivers make. And that’s what I think will guide you now. Making a voluntary sacrifice starts, I believe, with knowing what you feel you are relinquishing. So, let’s start there.
What will you lose? You can probably make a long list of what you think is gone, and what you know is gone. But please start with recognizing that the idea that things will not change is in many ways a false idea. What did you think would remain the same? And how important is that to you?
And once you’ve gotten some clarity on what you see slipping away, let yourself get mad. This thing is not fair. It’s not. So give yourself the gift of understanding. You may find it hard to say these things to even your best friend, or your therapist or pastor. So tell you.
I know that the day I looked at myself at a mirror and told myself the truth about something important that was lost to my husband’s PD, I was able to really experience a loving and full-on cry. I felt clearly that my sadness was real. Real, and important. And when that time was complete (And trust me. You will NOT cry forever), some of the weight had shifted. And that made room for me to start looking at how I might be able to build a future that included me, my needs, my wants, my value. Let the expectations be real. Say their name out loud as you think about letting them go, if you can find a space and time to do that. And then let them move aside to give you room to construct this new future.
And, as I said in my response above. Take your time. Give yourself the time you need to be sad, and then, there will be room to learn what’s next.
Hugs x 4