The Caregiver's View: Part 2

To read part one of The Caregiver's View, a personal and in-depth interview of the caregiving journey of two of our patient advocates, Angela Robb and Angie Hott, click here!

What’s your favorite activity to do for some “me time”?

Angela: I’ve got a tie for first place on this one: Going to the gym or getting a coffee/tea then driving the car playing 90’s rock music, loud!

When I go to the gym and work out my body, I find it’s a moving meditation! No cellphone and no care partner responsibilities – just me time. As for the coffee and the music – it’s a great way for me to decompress and have necessary caffeine, minus the hearing damage of playing 90’s rock music loud with the windows up, it’s great! :)

Angie: Honestly, my favorite "me time" is a complete and total absence of "activity". I don't need to go anywhere at all. Instead, I much prefer and enjoy stealing a moment at home to put some show tunes on Pandora, crank up the music super loud, and sing along.

Frankly, "me time" doesn't come often enough. Dan calls me a weirdo. And, if his meds are working, I can sometimes get him to dance with me!

What’s one thing you want other people to know about being a Parkinson’s care partner?

Angela: I have two things, sorry:

Every moment is different and complex! The balance between thinking about yourself, then your loved one, then back to yourself means always being on your toes. We navigate all the obstacles plus wear a lot of different hats/roles – all at the same time.

Making time for ourselves is different than caring for ourselves. Please understand that we need to set aside time to care for ourselves.

Angie: The one thing I want others to know about being a Parkinson's care partner is that no matter how crazy your day gets, no matter how much this disease steals away the love of your life, no matter how sad it is to watch him/or/her's health deteriorate, no matter how hard it is do all those tiny daily tasks like helping with buttons to slicing meals when meds decide not to work, no matter how often you have to ask him/her to repeat themselves because their voice is too soft, or silent, and no matter how little sleep you get because you also wake up multiple times, again, last night with another nightmare, cramp, trip to the bathroom, or even fall, being a "partner in care" for your spouse, family, or friend is, for me, the most valuable gift we can give each other.

What’s one thing you and your partner do together to help keep the spark alive?

Angela: We both do our very best to tell each other, multiple times a day, that we love each other, especially letting each other know at unexpected times!

Angie: Oh, I LOVE this question! You see, ten years ago, when Dan was diagnosed with Parkinson's disease, he found a used hot tub for sale. You know, of course, that a hot tub is extremely therapeutic for muscle cramps and a symptom of PD is muscle rigidity. Soooo.....we have a tradition. Every year on the first day of school (did I mention we have four children?), Dan and I have the whole hot tub to ourselves. Just him, me, and a mimosa....or two! ;-)

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.
poll graphic

Community Poll

Have you taken our Parkinson's In America Survey yet?