Friday, April 25, 2014

Wacky, Whiny, and Worn-Out

Here is My A To Z Challenge. An adventure. My attempt at telling you my story. I care for my husband who has end-stage Parkinson's disease.
We have good days and we have bad days. Hope you will follow along....A TO Z!

If you have ever lived with dementia.
You'll know exactly what I mean.
Some days everything is funny.
And other days you just want to leave.
Sometimes I can laugh out-loud.
When he is crazy as a loon.
Other times when he's repeating things over and over
I want to take a trip to the moon.
He's wacky as wacky can be.
Especially as night draws near
We call it 'sun-downers syndrome'
It's good that I am not standing
With him at the end of a pier. 

Worse are the days when he is whiny.
Those are the days that I hate.
The days that I wish I could leave
And be done with it all finally.
He's needy and whiny and crazy.
I can't sit around and be lazy.
As soon as I sit there's another need.
His demands are wearing me out.
Get me this, get me that, where is it at?
Where did you go? Sit me up. Lay me down.
And on he goes, round and round.

Wacky and whiny are wearing me out.
But there's no one here to hear me shout.
They tell me "he doesn't mean it."
"Give him what he wants."
"His days on earth are numbered."
It all makes me want to disappear and pout.
No one cares that I am exhausted.
As long as his needs are met.
For to others who aren't here for 24 hours.
Have no idea how hard it can get.
I'm worn out and I know it.
But I need to take care of wacky and whiny
And then I'll go out for a bit.
But I'll be back again soon.
It's a make-believe trip to the moon!

(I know that all of this sounds depressing and whiny to those who are reading my A to Z posts but in reality for the most part our life is not all that bad. Yes, I am tired. Yes, he can be demanding. But would I have it any other way.....well, maybe! No, of course I wouldn't. I just have to come up with words that work for A to Z. So I am NOT a strong WONDER WOMAN in any way...I am just doing my job as his wife)


  1. Well, I suspect at times you ARE 'wonder woman. I know I would stick by my guy too in similar circumstances, but it doesn't mean it would be easy. You have shown that! I wish you could get more breaks, Paula. Maybe you do, but it seems you could use some more. Almost done with the A-Z, aren't we? What a whirlwind month it's been! Sharon

    1. Thanks Sharon. No, I really don't take very many breaks. Just the way I am. When my son comes on the weekend I usually get a bit of free time. Now that summer is here I will have the teens to help me more.

  2. I think you are realistic in your writing; care giving is hard work and very demanding and can be very lonely. I admire you for being willing to tell you story through this challenge.


    1. It was hard to chose a theme. Last year I wrote about places that Richard and I have visited and it took a lot of research and time, which I just didn't have time for this year. So I wrote what I know about. And I have been happy to meet so many neat people, like you!

  3. Hi Paula - can quite understand you feeling whacked and out of sorts ... but as you say - you are coping and being together .. difficult it obviously is .. tiring it most definitely is ... good luck and let's hope tomorrow is an easier day ... with thoughts - Hilary

    1. That is my prayer each night....that tomorrow is an easier day!

  4. You know, whiny is such a whiny word. I would call this letting off some steam in a well-deserved manner. Actually, in a very much needed manner. In a situation like yours, you have to scream out loud sometimes, you have to let out your frustration, your tiredness, you feelings of hopelessness. There is a young woman in England you may enjoy meeting, she suffers from a debilitating illness, but is so wonderful about it all. She needs friends online as she often cannot get out of bed. We have become a lifeline for her in many ways, but she is also very courageous. I will be back with her link.

    1. I have been known to step outside and scream on occasion but we live with close neighbors so I don't need the police checking me out. I will go check out your friend. Thanks Inger.

  5. that's the link to Hayley-Eszti's blog.

  6. Wendy you know how easy it is, as a caregiver, to not give ourselves the credit we deserve. I am afraid that so much of the time when I am short with him and lose patience with him on the parts that I tend to focus on later when I am beating myself up. I need to try to be better at patting myself on the back

  7. I don't mind whiny... as long as I can have a glass of wine with it.
    Katy Did

    Life's Ride In Between

  8. Oh ya, I remember my mother asking me the same questions over and over (and over) until I wanted to scream. I need to acquaint myself more with sundowners syndrome. Looking back, the late afternoons and early evenings were the worse, but I just chalked that up to the fact neither one of us ever cared for that time of day.
    I SO hope your son's there tonight, and you've time to hang out with "Army Wives" then get a good night's sleep.

    1. He is Myra and that is my plan.....Thanks for visiting!

  9. We all deserve to be whiny every now and again and if it helps you get out of bed tomorrow morning and face a new day then all the better. Do you have moments when you can laugh and be wacky as well?

    1. My grand kids would tell you I am 'wacky' as he is :)

  10. You are definitely a Wonder Woman and a Great Wife.
    All your posts were well woven, and our prayers with you always :)

  11. Sounds to me like you are handling a tough situation with humor and grace! I have to admire you for that.

    1. I try with the humor...I am not sure I have that much grace Thanks for visiting me

  12. I like at the end how you stated you are just doing your job as his wife. While you are a strong woman and even a wonder woman, he's your husband and you took vows. So it's almost have to take care of him... you told him you would even if it was a really long time ago. But not only do you have to take care of him you want to because you love him so therefore you can do it with love.

    Sometimes people tell me I'm amazing because I'm Marie's mom. But I'm really not. She came with Jon and that was that. It wasn't my idea but I'm STILL working on accepting it and trying to be better every day.

    1. That is exactly how I feel. I don't feel at all amazing. I love my husband and then Parkinson's came along. That is the good with the bad. Would I have chosen this for my life...possibly, possibly not! I love how you understand!!

  13. Paula - you are above and beyond "doing your job". None of us who offer you platitudes can possibly imagine the toll on you if we haven't walked a similar path. I learn so much from you, but fear I wouldn't have nearly the patience, understanding and grace in your place. My prayers continue to be with you both/

    1. Believe me when I say that all that comes out on paper might now be what is going on behind the scenes. some is just too "ugly" to talk about


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