Latino man shakily speaks words in the shape of hearts to his caregiver

Ask for Help: The New Normal Solution

When my wife and I got married way back when in 2009 (yes kids, that really was a year), our wedding officiant assigned us to read Gary Chapman’s book, The Five Love Languages. The point was to read it together and figure out our love languages.

We were to share openly since the other person needed to know if our primary method involved stated words, time together, physical affection, gifts, lots of flowers, a PSA8 Roger Maris rookie baseball card, a bundt cake made with love, or 3-hour back rubs. Here, the central theme is you should ask for what you want.

Ask for what you want

This applies to people with Parkinson’s and caregivers as well. If we don’t ask, we often will not receive or the giver may not be showing it clearly. For instance, one person may be working overtime for vacation money while the other person wants to spend time together now. Hence, friction occurs.

If my observational research is correct, the “I’m not getting enough support” post accounts for a solid majority of problems that could be solved if one person were to ask the other person for support in this way. Here are some examples of asking for help:

  • Can you help with chores?
  • I need a hug.
  • Will someone listen to me?
  • I don’t know who can take me somewhere.
  • Why don’t I feel important to you?
  • I don’t understand what my doctor is saying.
  • I need time alone.
  • Can I go home to decompress from my anxiety?
  • Will you pick me up something from the store?

Set personal boundaries

Do we allow people to feel sad around us? For instance, will we get upset if someone says something like, “I’m sorry you’re going through this” or if they become teary-eyed in our presence?

I can make arguments for and against this, but knowing your boundaries is a good thing. Are those we interact with aware of what we are going through? Do they attempt to empathize by saying, “I’m sorry you’re going through this”, or do they diminish our personal value by saying, “I’m glad you’re not going through XYZ”?

Do we allow our companions to joke with us about our condition? Do we have limits on who can joke and how? For instance, when my wife and I were considering board games to buy, my wife laughed at how Operation wouldn’t be a good choice. Here, I was able to laugh with her. This is different from having someone insult me with a nickname like “Mr. Butter Fingers” when my tremors cause me to drop my electronic device.

 

 

Communication problems

As an adviser at a college, I often find myself trying to help students discover electives that will be valuable to them. Right now, these include Abnormal Psychology and Emotional Intelligence classes. Simply put, we never run out of instances where we could learn how to communicate better (from education to health to retail to law to family and friends).

Sometimes, people are just standoffish from the hurt they have experienced (nurture). Other times, biology (nature) is affecting them. Knowing how to deal with this is essential to all of us becoming better people.

The key is learning what affects us and others. Sometimes medicine may make us woozy (a technical term), tired, and disinterested. Glazed over eyes don’t convey I’m happy to see you, especially with our Parkinson’s monotone voices.

Here, we need the listener to understand us on a literal basis or catch our nonverbal cues since we might not appear to mean what we say.

Learn through experience

Real-world training is necessary. Otherwise, we have to rely on our ability to pick things up on the fly. For instance, I used to work with a young boy, who was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified.

On some occasions, he would experience emotional overload. He would lose control and eventually start crying hysterically. I couldn’t help but feel his sadness and need to resolve his pain. By experiencing and learning from a kindergartener, I was able to figure out how to deal with my Parkinson’s anxiety meltdowns.

For me, it took years and personal experience to connect the dots between his plight and mine. Now, this helps me teach others how to help people in need. I can only hope someone has taught him how to find a safe space, to breathe, or let the tears out.

Help others in difficult situations

Nevertheless, in a perfect world, it would have been better for my training to be theoretical, but wishful thinking isn’t real - emotional problems are. Thus, we need to prepare for the what-ifs. Some people pick this up on the fly as neurological and emotional trouble is a day-to-day reality. Other people struggle through the static and become embedded with chaos - this hurts them and others.

Thus, for those of us who know, we have to teach, help, and encourage learning. If we don’t acknowledge our role and responsibility, things aren’t getting better.

Anything that helps us through our “non-OK” moments (such as dealing with angry people, helping people deal with their depression, or managing our own depression) is a big help for a better world. From here, we can assist difficult situations with a toolbox of useful skills.

Know what works for you

For the situations I can control, I will line up my ducks. I know what response will work best for me. For instance, my wife knows about my sleep issues, so when I wake up from a bad dream at 1 AM, she’ll be there.

She might not understand what it’s like to have nightmares that make me feel like I’m awake. My wife may not understand the glitch in my head that defeats my dream world test (if I can feel it, it’s real AND the reverse) or that my mind can repeat bad dreams endlessly. However, she is there with a hug and comfort when I'm afraid to go back to sleep.

By letting her know that pushing my shoulders down isn’t helping, she can avoid something that makes me conscious of my jacked-up action figure look. Besides, it actually hurts more to push them down. Just getting mad isn’t helping it. The same is true for letting uncomfortable behaviors persist since silence is complicity.

Listen to others

In the end, the greatest lesson I ever learned was how to empathetically stop talking and listen when I truly want to help someone. There’s a time for advice and a time for hugs, solidarity, and affection. It’s amazing how much help not directing all the answers has to offer.

Another thing I've learned to do is to step back when Parkinson's is making me a grouch. I can override the system that causes me to feel that others don't do what I need them to, or that people don't understand my condition. I try to excuse myself to my office to listen to my angry music and iron.

I can then decompress and get work clothes ready while thinking about what people put up with and do for me. Really. When it's over, I can reenter the world and not apologize for additional problems that I unnecessarily made. Sometimes we have to ask ourselves, too.

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