Saturday, April 5, 2014

Early, Eating, and Emotions

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 used to be a night person.
He was always days.
I got up in the evening.
I worked all night.
He stayed home and slept.
Now we've had to adjust.
And get up with his needs.
Sometimes it's just too early.
But I have to think of him,
Not me.

And then there is eating.
It always brings 'the cough'.
A difficult time of day.
It is part of the disease.
A part that I hate.
He takes a bite.
And then he coughs,
He takes a drink.
And coughs some more.
He can't help it.
It is the way it is.
His esophagus has slowed.
Like everything else.
This is one of the biggest challenges
In facing this disease.
For if he swallows wrong, it can go
Into the lungs, you see.
And then he develops pneumonia.
And a bout with that can kill.

Our emotions are not alike.
And yet they are the same.
Does that even make any sense.
To those not in the game.
I am sad, and glad, and sorry, and blue.
He is the same, you see.
His emotions are all over the place.
I just want one more good day.
And he just wants to stay.
We laugh together.
And we cry.
We joke and try to forget.
Some days we feel elated.
And other days I am damn depressed.
But all days I have to go on.
For he needs my care.
So on with getting up early and eating.
And don't let the emotions get in the way.
I must continue on with this affair.


  1. There's love there Paula it shines thru all of your words and worries. I pray it will carry you both thru this difficult journey.

    1. I think it will. I have said it many times before: When I think his time has finally come I am NOT ready. When the job is so hard I don't think I can go on I feel ready. It is such a journey.

  2. All the best to you-- this is an emotion-filled poem.

    Damyanti Co-host, A to Z Challenge 2014, Daily (w)rite Latest Post

    Twitter: @damyantig

    1. Thank you for your visit. Now I am off to find you.

  3. I have experienced the emotions and the early. I did not have to worry about the eating until recently. Fluids are the biggest problem right now. She doesn't cough. She holds the fluids in her mouth until she thinks she can swallow. With the dementia her brain has started to interfere with the swallowing signals and it is an effort which sometimes ends in coughing. I guess as her dementia progresses she will have trouble with other types of food as well.

    There should be a law .... End of life, a long life,should be comfortable and dignified.

    I am so enjoying and relatiing to your series of posts. Just when I think my experiences are unique I discover I am part of a very special caregiver club. It calms my soul. Thank you.

    1. I have a couple of other friends that are writing about caregiving Visit them here:

      Tell them I sent you. How is your mom doing?

  4. I can think of other E words for you and Richard....Everlasting (as in your love), Endless ( as in your faithfulness to his care) and Euphoric (as in your memories that you keep). God's blessings Paula.

    1. Wendy you are a jewel...You are going to make me think it is not all negative. I love that about you

  5. Hi Paula .. I can hear you - and you are coping so well .. I feel for you too ... My thoughts ... for some relief however brief .. that good day you wish for and hope for (expect, perhaps, even) ... i love the way you are setting the posts out for this A-Z series ..

    With thoughts and hugs - Hilary

    1. Thank you Hilary. I wanted to try something different. Not prose but not really poetry either. It is good for me to write

  6. Filled with emotions! Loved the poem! :)
    Cheers ~ Kaushik

  7. My heart is heavy for you right now and hope there are some moments of relief for you in this. It is hard. I can tell you with a brother, father and mother gone through diseases, it is not easy...but life will make you go on. You are normal with emotions like this. Just keep telling yourself that...
    Katy Did

    Life's Ride In Between

    1. I know that I am normal! Thanks for dropping by

  8. I so appreciate both the love and the honesty in these pieces, and the way you tie the words together without forcing a link between them. You sound eminently sane, despite all the struggle. Clearly you have deep inner resources, both individually and together. Thank you--I will be able to come back to these when I am tearing my hair out!

    1. You are more than welcome. I hope you are never tearing your hair out.

  9. I think at the end of the challenge, you should find a way to put this into some type of book form or pamphlet form; I think a lot of people who care give see themselves in your writing; I think it could be therapeutic and helpful. I think the eating would scare me too not knowing about whether your husband will aspirate, etc.


    1. It used to be pretty scary but we have all gotten pretty used to it. I just make sure the bites are small and soft!

  10. I applaud you for having the courage to blog about your trials. Both of my teenage sons have special needs. One is an invalid and the other is autistic. My heart goes out to you over the medical issues. Aspiration pneumonia is one of the biggest threats to my older son's health. I'm also in the A to Z Challenge. Nice to meet you!

    1. I don't know that it takes so much courage. I just vent more or less. I would love to hear more about your sons. That has to be heartbreaking!

  11. I understand how you're feeling, maybe not to the same degree, but I do understand. My husband is a brittle diabetic and I've nearly lost him on several occasions over the years. I am his caregiver...but he is also mine. I am having memory lapses that may or may not be something that I am terrified to face...Alzheimer's like my grandma had. We're doing what we can to take care of each other. It can be very frustrating, but it is what we signed on for "in sickness and in health, till death do us part"...always hoping that we'd have the "in health" part and none of the sickness and death parts.

    I am sorry for what you and your husband are going through. You're both in my prayers.

    1. I understand Suzanne. My mom was diabetic. That is a rough disease. I pray your memory lapses are nothing big. Thanks for the prayers and for stopping by

  12. I was just thinking along the same line as Betty! These chronicles, peppered with both of your emotions and hopes are surely book-worthy!
    .....Meanwhile, life happens and you go on and on.
    Sending prayers and wishes for an evening of undisturbed sleep

    1. Thank you! I will sleep wonderful tonight. My son is here and he takes over and I go back to my bedroom , close the door, pop in Army Wives DVD and sleep well all night long.....

  13. I will follow your journey. This post touched my heart and brought tears to my eyes. The love in here is so strong.

    1. Thank you Inger. There is certainly a lot of love here among our grief!

  14. I completely understand! Yes, your emotions are different yet the same. As are mine. Any caregiver can understand this. Know you are not alone! <3
    Jamie Dement (LadyJai)
    My A to Z
    Caring for My Veteran

  15. Replies
    1. Well, thank you Lass. Good to see you again!

  16. The emotions are definitely the hardest.


I love to hear what you might think. Leave me a comment. I guarantee though that I will delete your comment if you are just here to cause trouble. So tread lightly!