Sunday, April 13, 2014

Laughing, Learning, and Lonely

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!

There are days when all I can do is laugh.
Otherwise I would just cry.
Sometimes the days are so funny.
And he can be so cute.
His toothless smile lights up his face.
And makes my day complete.

With this whole process I am learning
That there is much to learn.
I haven't mastered patience
Of that I've continued to yearn.
But I can quickly clean a spill.
And make him feel okay.
For it's not his fault his hands shake
Or that his arms don't bend.
It's not his fault his legs won't work
Or that he cannot stand.
It's not his fault his voice is so soft
That I have to ask him twice.
It's not his fault I am impatient
And sometimes not so nice.

My days are often lonely.
He hasn't much to say.
We sit together in the same room.
Yet I feel he is miles away.
I wonder what he's thinking.
As he stares so long at nothing.
I wonder where he goes.
I wonder what he sees out there.
I wonder if he feels alone.
We often talk.
But we don't say much.
I keep him oriented as much as I can.
I want him to feel that he is still 'the man.'
Yet I long for the other times
When we talked and dreamed and planned.
For we are now living what we never thought would be.
And I just wish that I could see what it is
That he sees!


  1. Wow... life is a strange transition sometimes isn't it. We are given what is thrown at us and then we have to make due with it. It teaches us new things about living it every single day. You are teaching me...believe it or not to live it each day. We never know do we? I sure am glad I am able to receive some of your strength here and have crossed this blog to do just that. You have to know how strong you are and I hope you realize it. Hugs,

    1. I don't have a choice. I have to be strong. But there are many days that I don't feel it at all! Thanks for your kind words. They are what keep me going

  2. Hi Paula .. very heart-wrending .. laughter and crying go together so easily in this sort of situation .. and the loneliness ... I wonder what he sees .. are you able to read to him ... giving yourself something to read too - perhaps look at pictures at the same time ..

    And you're right it is easier to get up and do .. my mother used to say please sit down - to give her peace I guess .. though she could talk ... but she didn't need to be 'buzzing' as I was 'doing things' ... I did sit, but it's difficult.

    As KT Did says above .. you are teaching us and you are on the journey of life that we don't expect, yet somehow cope with ... with many thoughts .. Hilary

    1. He still reads...the newspaper! Sometimes he can spend 10 hours reading the newspaper. He have terrible short term memory loss so he will read it several times a day. He used to watch Tv (he still sits in front of it) but I don't really think he follows along anymore. Thank you Hilary for coming back everyday!

  3. When you ask him does he tell you? My Pops hesitated to tell us what he saw because he thought we would think he was crazy. Then he finally told us about 2 children that were always with him. He knew we couldn't see them but he could describe how they were dressed and the color of their hair but their facial features were indistinct. I think it was very appropriate that Pop's Guardian Angels were children....He and kids always had a special relationship.

    1. Yes Richard has hallucinations as well. He often sees a man with a clipboard in our house. He says the man is recording all of our possessions. At times he describes a woman. I, too, think they are angels!

  4. I would imagine it could be lonely, but I am glad there are times of laughter; just wish there were more of those and less of lonely. I think wew all do continue to learn throughout our lives; I am learning so much about your journey of care giving through the words you are sharing here on your blog.


    1. Thank you Betty. It is a journey that none of us really expect or plan for. But it could happen at any time in our lives. ....whether it be our parents or our spouses.

  5. Paula, you are so strong! I can't imagine how difficult this is for you. I think of you often, please know that! Hugs!

    1. Thank you Elena! You are one of my inspirations!

  6. I think this one is my favorite. You said it all perfectly! Yesterday mom came out of a few different silent moments with comments that made it clear she had been somewhere else, seeing something none of us saw, talking to people long gone, but she was happy. I worry if I ask too many questions it will spoil her happiness. I would like to know what's in her head...

    1. I don't ask too many questions either Lisa. I let him have his peace. Sometimes he shares where he is, but usually he just stares off in space.

  7. Aloha Paula, I'm glad you found a supportive community online. This is some tough stuff.

    Maui Jungalow

    1. It is my life. I made a vow. I will stick by him! Thanks for the visit

  8. Oh! Your last sentence really hit me ... so damned poignant, Paula.

    "It's not his fault, it's not his fault" - were you talking to me, perchance?
    I read that passage, then read it again ....and felt so ashamed for my impatience w/ Tom's hearing loss, or his short-term memory loss.
    ... So we remind each other.

    1. No Myra, I wasn't talking to you at all! But we do need to remind ourselves that they didn't ask for this. They don't want it this way either. I am often ashamed of my impatience as well....

  9. This is beautiful and you sound patient to me. Reading through the other comments got me thinking about angels in our lives and I just want to send a prayer that you get a few extra to help you through the hard times.

    1. I do believe there are angels in our lives. Some are here on earth and some have passed. And both will help us when the times get tough. I am NOT a patient person at all and I have lots of guilt because of it. But I try...

  10. Hi Paula,
    Thank you for coming by my hammock blog. I wanted to come by yours, and 'landed' on this post. It touched me so much. What a story of love woven in with the loneliness that can be felt in this post. My heart goes out to you and I will pray for strength and times of refreshing, and times of connection with your sweet husband. What a true testament to love you have shared with us. Thank you.

    1. Thank you for stopping by and for the prayers!


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