Friday, April 4, 2014

Dreaming, Demanding, and Dying

Here It 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 also have two teenage grandchildren who reside with us.
We have good days and we have bad days. Hope you will follow along....A TO Z!

I remember dreaming.
Of what my life would be.
We have always done it.
Him and me. 
We dream.
We have to have our dreams.
Sometimes all we are dreaming for
Is the day to be good to us.
The sun to shine.
For good times.
And good memories. 
And to remember our dreaming.

But there are demands.
Many demands.
Demands for this.
And demands for that.
Drinks of water.
More blankets.
Help me stand.
Lay me down.
Get me up. 
He demands.
And I demand.
And there are 'the demands.'
We are powered by demands.

But it is the dying that I most fear.
What will I do?
Where will he go?
What if I go first?
Is he weaker today?
His heart is irregular.
The breathing is shallow.
The nail-beds are blue. 
Will he have pain?
Will I be strong?
Will I be able to continue?
To carry on?
So much dreaming, demanding and dying
Is going on. 


  1. It is hard when our dreams don't quite go the way we want them to go, it can be disappointing. I would imagine it is demanding work for you as a care giver as you "cater" to the demands of your husband's needs. I think all of us that are married do wonder about dying, who will go first, that sort of thing. I know of a man who was a care giver for his wife for over 20 years as she had MS and he ended up dying just this past November from lung cancer. I know one thing I prayed for my mom as she got older was to have a peaceful death and she did, perhaps that could be a prayer you pray for your husband?


  2. Hi Paula .. Dreaming - but there's never much time, when you're caring ... especially for a loved one at home; demands - yes .. always. Dying - it comes when the time is right for whatever reason .. unexpected too .. but for us - it's having faith .. my mother had faith and trusted in me, my uncle had faith he was going to meet his beloved wife again and trusted in me being there ... your husband does have trust in you ... and your trust will come ..

    The unknown is the challenge - but what will be will be ... we can only do so much ... it is I think usually restful and wanted ... so all will be well - with thoughts ... Hilary

    1. Thanks for your words...I'll keep dreaming!

  3. I couldn't imagine not thinking of those things, worrying about those things as a caregiver, a person who loves so deeply, Paula. Sometimes I wonder what's harder, dying or surviving after the person we love most in this world leaves us. These are such hard things to cope with, but in the end, we do we live on.I did and I pray when the time comes you will too...hugs again :)

    1. Thank you so much Jen! I know that what you went through was horrible and you are an inspiration to me!

  4. Just dropping by exploring on the A to Z Challenge...I'm a few blow you on the list. You writing shows strong emotion. I sensed the frustration, pain, and love. I hope you have support as a caregiver. That's a tough job to do day after day. Hang in there!

    1. Thank you so much #1Nana. You are reading me right. I do have pain, frustration and love. And luckily I support. Most of the time. Thanks for dropping by

  5. Dear Paula,
    I feel your pain but also your strong resolve. I hope that you have family or friends who can help you carry this burden. I cared for my mom the last year of her life. I know it is not the same as caring for a husband but I still had many of your same concerns. I am not afraid of death because I know we will be returning to our loving Heavenly Father.... it is the dying that is hard to face. I know that life is eternal and our loved ones who have passed on are still near to us. It is the saying goodbye that is so hard. My best wishes are coming your way. I will pray for you. Hugs, Lura

    1. Thank you so much for your kind words. Yes, it is the saying good-bye (over and over and over). He is up and then he is down and that is what is the hardest part.

  6. Sounds like a rough day for both of you. Since mom moved in, I wonder if my husband looks at me and thinks... is that what my future holds? Is that how I am going to have to spend my retirement - caring for someone who doesn't even know me... I hope not, but we'd both be foolish not to consider the possibility. It's got to be so much more difficult when it's your husband, your best friend, your soul mate....sending hugs, Lisa

    1. Thanks Lisa. I don't know if it is any harder because he is my husband. I am thankful that it isn't Alzheimer's and that he at least knows me. It is the physical part of taking care of him that is so hard for me

  7. Wow. So intensely written.

    I am lucky to have found your blog.

  8. Your day seems so predictable, Paula, and yet it really isn't, as you never know just how bad or good it will be. I can see why it is so frustrating. I wish it could be different for you. One thing is clear is your devotion to your husband. It's the 'for better or worse' clause we all sign into when we marry...but try not to think about. Here, as you face things head-on, we are learning from you. If I could give you a hug, I would!

    1. That is exactly what I say to my sure when you say "I do" that you accept and mean every single vow. Grandma is living it!

  9. This is such a hard road that you're both traveling. I am thankful that you have each other. I can't imagine facing such a scary illness all alone.

    You're both in my prayers.

    1. It is a hard road, but it is the road that was chosen for us...


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