Good morning (or whatever time it is as you read this.).
Today's entry here has questions from caregivers who are asking about the details--the day-to-day of PD caregiving.
The thing I like best about writing for caregivers is the community - the chance to reach out to caregivers. So ask away. Let's see what we can learn together.
Dear Terri,
My husband was diagnosed with PD about 18 months ago. We have always been very private people, and we’ve decided that we are going to handle this Parkinson’s by ourselves. That means that we have not let any of our friends and family know about his PD. I want to keep things as familiar and normal as I can for as long as I can.
However, I’ve learned that things can get difficult as PD progresses. That is making me rethink our plan. I am now questioning whether that’s the best thing to do.
Do you think it is a good strategy to keep his Parkinson’s diagnosis to ourselves? I want to help him continue to seem like his usual self for as long as possible.
Signed,
SHHH
Dear SHHH
I get it—this whole Parkinson’s thing is a tough pill to swallow. Your partner might choose to ignore it for now, just to keep life "normal." And you can certainly help him with that. But at the same time you have another job.
Think of it like this: You're planning a road trip around the world. Starting on a sunny day in Cali, you might think, "It’s warm and clear, so I'll pack sandals, a light jacket, and an umbrella." Sounds good, right? But if you both only plan for today’s weather, you’re likely to hit some serious trouble along the way.
Just like a smart traveler checks the forecast and packs for all kinds of weather, you need to prepare for what's coming.
There are several areas for you to address, even before your HWP is ready to think about his future.
Learn About Caregiving: Start understanding what it really means, and begin to ask yourself what your own limits are.
Don’t Push People Away: You’ll need them later. Stay connected to the people you might need to turn to in the future.
Get Your Systems in Place: A visit to an Elder Care attorney, can help you understand the financial options you will have. Other paperwork, like Powers of Attorney, will make it easier for you to have access to his financial medical information and to take over financial issues if that is needed.
Build Your Team: Family, friends, medical providers—get them on board now. Find the best doctors and plan for out-of-home care, just in case. Making a broad promise that they can always be at home may not be realistic.
The start of this journey is the best time to prepare. Don't wait until you’re knee-deep in problems to start thinking ahead.
Remember, you don't have to be alone in this. Start building up your own unique approach to caregiving today.
Hugs x4,
Terri
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Dear Terri,
My husband with Parkinson’s has always been rude to me. He talks to me like I’m crap. It’s getting worse. Today I so wanted to get in his face. I just want to run away!
Signed,
I’m sick of it
Dear Sick of it,
Your message shows how tough your situation is. It sounds like your husband’s been rude for a long time, even before Parkinson’s. No one should have to live with that.
Maybe he has always behaved like this, or maybe this behavior is a symptom of his illness. But let's focus on today and your well-being.
Parkinson’s will make him need more care from you over time. But he is harming you more and more. You cannot keep living like this.
At one time you might have thought you just had to tolerate his behavior. But that has to stop. You can’t change him, but you can change how you handle things.
When he’s rude, don’t react. Get up, make sure he's safe, and say “no.” Then walk away. Don’t engage with him. As I described in an earlier message, Don't Yell. Tell.
He has a brain disease, so it's hard to know how getting in his face would help. It may release your anger but won’t make your life better. Removing his target is a way to protect yourself.
Just say "no" and disengage. Now, I know, some people just need permission to do this. So, here it is. You have my permission to say "no."
If you need extra support, consider a therapist, pastor, or PD support group, or some of my other programs. Your needs matter too.
Hugs x 4,
Terri
P.S.
Whether you are a new reader of this blog, or you have been a fan, you may not know that I write a column for caregivers every week. You won't see all of them here, but you can subscribe to my emails, which is the sure-fire way to get every Q&A I write. And, when you sign up you'll also get my free guide for new caregivers; Your First Steps.
Come on in - you deserve it.
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