“Can We Talk?...It’s Early!” (Part Three)

By AngieHott

2 min read

Read part two here.

It’s 3:17 a.m….again! Sorry to bother you; but the love of my life has Parkinson’s disease and, although it comes with many physical symptoms, the non-motor issues have me puzzled tonight as I am lying wide awake...again! Why are you up, if you don’t mind my asking? Because sometimes I feel like it is important to recognize the normal and talk about everything but Parkinson's disease - do you?

Go ahead, tell me

Could it be that your PD partner just jumped out of bed with a cramp? Or maybe mobility issues caused him or her to drop their meds all over the bathroom floor? No worries. It happens at my house all.the.time! I hope you find just the tiniest bit of comfort knowing that this 53-year-old-all-too-soon-gray-haired-mama-of-four is awake too. And I'm right here with you to pass the nightly "medtime" fluctuations that go hand in hand with people with Parkinson's.

We'll get through this night too...together!

Because believe me: you are not the only Parkinson's care partner awake at the moment! I am too! And, let me tell you what is going on over here at my house on Hott Mountain, WV. Tonight is a little different; and, frankly kinda sorta refreshing! It is not the typical painful encounter of a severe leg twisting cramp, nor is it the sudden violent outburst of a frightening nighttime visitor from a Nightmare on Parkinson's Street! Instead, I am finding myself awakened by an eruption of the most beautiful sound I have heard in quite a long time!

Giggles!

That's right! Just now a melodic roll giggles just fell across his pillow. It washed over to me like a fresh breeze entering the opened window on a cool summer night: GIGGLES!

My curiosity overtook me! At first, I was certain that there was a late night movie playing on the television where something funny just happened. Fearing I missed the joke and wanted to laugh too, I woke up to our dark bedroom when once again, it was like music to my ears: more giggles!

Just what in the world could be so stinkin' funny?!? I can hardly stand it! So, I wait for more; hoping that whatever is making him laugh will be remembered the next morning. And out of the blue and clear as the night time stars in the sky, he says, "That's funny!"

Wake up!

Actually, no. I couldn't wake him (even though my curiosity got the best of me)! He continued to enjoy whatever scene was playing out in his dreams. As I wondered what the joke was, I was thankful for this exact moment because for whatever reason, perhaps a good batch of clonazepam did the trick, he was finally resting and, apparently enjoying his sleep. For all the times PD gets the credit for disturbing the love of my life, tonight it all goes to something simple as a a happy dream that has him laughing out loud. I celebrate the small normalcy of this night and am thankful that he is pain free and I got to witness his peaceful slumber.

Your turn

Go on Parkinson's care partner friend, tell me. I'm not going to sleep anytime soon. What's on your mind at this hour?

Read part four here.

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mnwi6 Member
My heart aches to see how my husband has lost ally of who he was......he just mentioned the other night that he probably will not hunt this year because of his shaking.....also he doesn’t want to wound a deer and not be able to track it......this is one of his first loves and it’s being taken away from him. He also goes through the giggle dreams, but he has a lot of yelling and screaming dreams which are very frightening. Those night I hardly get any sleep. Being a caregiver is a very sad thing to have to be to your spouse. But we hang on and keep taking one day at a time.
1. mnwi6 Member
 I sure have been off the grid for the last few months.....it really didn’t seem that long, but I guess so much has happened that my mind has been in a whirl wind storm. I almost lost my husband to heart disease which was all caused by the chemo he went through for 8 months 4 1/2 yrs ago. Everybody kept saying his breathing or I should say the lack of breathing had nothing to do with Parkinson’s. Won’t go into the whole thing, but we all know that it’s not the Parkinson’s that’s going to take our loved ones.....it’s the other diseases that will keep pounding at the door. So we have gone through a gall bladder removal, but still has all the stomach issues.....5 stints to take care of the 99% blockage of the heart and my loved one that is so unhappy and just wants to leave this world. My heart aches for him because he is having a hard time accepting all of these things that is tearing him down. Oh he knows he has Parkinson’s since his 40’s and he is 69 now, but it wasn’t bad until he got cancer 4 1/2 yrs ago. He won’t take a depression pill he won’t go to a therapy group so he just takes it all out on me that he’s not who he used to be. I go to a therapy group and I am on a depression pill so I can take care of me which my doctor prescribed. My question to anybody out there that has gone or is going through the same thing as me is.....how are you handling it?
2. AngieHott Member
 <inline-mention user-id="3077891" username="mnwi6"/> Hello there, I have been thinking a long time about your question, "how do you handle it?" (handle the caregiver stress)? For me, I find that I just keep on, keeping on.... I know that may sound strange; but I have a busy caregiver plate to also juggle in a full time job and raising our young teens. In a way, having children later has helped us both because there are so many demands and needs to keep us both busy with them that in a way, it preoccupies us, and those stupid Parkinson's symptoms just have to deal with our busy lives. Sure, PD manages to get in the way every day. When PD does something awful like make him stumble and hit his head two days before his DBS surgery, I try my best to remain positive and realize that he is his healthiest this very day. I've learned that I know to expect tomorrow to be somewhat worse than the day before (which really sucks, doesn't it?); so, for today, I will celebrate and find every opportunity to cork some wine and say to PD "Hah! Not today, you S.O.B!" Does that make sense? And prayer...I constant stream of communication between me and God, not always pleasant, but always present, gets me through another day. Stay strong, my dear fellow PD caregiver! You got this! And, for those moments when PD brings me to the verge of a meltdown, like it did this week in the grocery store parking lot. I just slammed my cart into the rack a little too hard and it made a huge noise. I turned around, brushed my hands, and thought, "damn, that felt good!" Just remember, it's ok to be upset too.
recondoc Member
Well written, but where do you find one and two? I would love to read the prior posts made by Mrs Hott.
1. AngieHott Member
 Hi! Thanks for reading! Here is a link to the prior posts which describe a number of mornings when I was, lol, awake: <a href='https://parkinsonsdisease.net/author/angiehott/' target='_blank'>https://parkinsonsdisease.net/author/angiehott/</a> Just roll down and you will find all of the "parts" listed among other stories. Hope you find some comfort if you are also awake! I am learning that many others with Parkinson's Disease have similar nights as I! And, if you're up....send me a message! I may also be up as well! Take care, Angie
2. Chris H. Community Admin
 Thanks for pointing this out, <inline-mention user-id="3068476" username="recondoc"/> ! I went ahead and added links to this series of articles in the beginning and end of each article. Take care. - Chris, <a href='http://ParkinsonsDisease.net' target='_blank'>ParkinsonsDisease.net</a> Team

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