Friday, April 11, 2014

Kinfolks, Kisses and Knocked-down

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!

Kinfolk come and kinfolk go.
I don't know why.
I need them so.
Some are missing from my life.
My kinfolk are either here or not.
They either support me or stay away.
The same can be said of Richard's.
It's like we never had them in the first place.
Just because we share the same genes
Doesn't mean they will be here for me
When times get hard
Some come and some stay away.

But I have lots of kisses.
More kisses than I can count.
His short term memory is short-term.
He often forgets what I have done.
He says I didn't kiss him.
When I know that I did.
But rather than argue I get up again
And kiss him over and over.

It is not what makes me feel knocked-down.
It is not what makes me cry.
It is the tiredness that seeps into my bones.
The things that make me sigh.
The times where I lay awake and watch.
To see his chest rise and fall.
The times I watch and wait and cry.
Before I can walk I learn to crawl.
The journey is a lonely one. 
I feel I am walking all by myself.
I feel I have lost the battle.
The book will soon be on the shelf.
The bell will ring and end the final round.
The one where he will leave and I will be knocked down.


  1. Are there any support groups you can go to with other care givers? I know sometimes having the support of others walking the same road you are can be helpful in this lonely journey of yours. It is sad family is not rallying around you all during this time.


    1. Most of my family does rally around me. The important members like my son is here. No I don't have time to go to support groups. We have hospice services.

  2. Hi Paula - you are letting lots of thoughts out and that is good ... and yes, you will be knocked down, but you will rise again .. it's this really sad and challenging period as you watch that is understandably getting to you ... perhaps you can just talk through with someone ... knowing that it's a period in life ... and you will live again - differently ... changed, but so satisfied that you've coped .. your strength will see you through .. with a lot of thoughts and hugs from here .. Hilary

    1. I know that I will get back up Hilary. It is just scary to think about it!

  3. (((HUGS))). Your poetry is beautiful even if the story is sad. I admire you for talking about it, things bottled up eat away at a persons soul. I'm sorry you and he have to endure this, watched a friend and her husband struggle through it. I know the pain is real. Enjoy the moments, the good moments will be your strength. Here for a-z
    Traveling Suitcase A-Z

    1. Hello Sandy....long time since I have heard from you. I will be over to check out your A To Z. Thanks for your comments.

  4. Oh how sad - your poetry is beautiful and it made me cry and made me think who am I not going to see or who could use some support today .... I'm so happy to have visited your blog today. Send you hugs from Ireland.
    Fil at Fil's Place - Old songs and Memories

  5. Haven't closed any blogs, not sure why you would get an error message. Which blog did you visit? So sorry to hear about leaving your journal on the plane....wouldn't you think they would have a lost and found?
    Traveling Suitcase

  6. It happens when I click on your name....they did have a lost and found. I also left some makeup and sake cups from Japan. We contacted the lost and found and they described my journal to a tee but of course the rest of the stuff wasn't found. I was thrilled about the journal but they called back to say they had misplaced it and then it was never found again....I always said that I will read a best seller someday and it will be all about my trip!!

  7. I'm so sorry your spirits are down today, Paula. It's certainly understandable; just wish there was something I could do, aside from sending hugs!
    When Tom was diagnosed last year we found out in a hurry what kin might be counted on; and more importantly, who couldn't. His daughter's trying to make amends, but I'm kaput ... finished. Sooooo glad your son is there .... for all 4 of you!

    1. Thanks Myra. I am really not down today. I wrote that post a while back. Getting ready in advance for the A to Z. But I accept your hug anyway.

  8. Surely there are some support groups that can help you through this journey Paula. My niece just went through it. Her husband battled cancer and put up a good fight. He died a few months ago. She would know exactly how you feel. I cared for my mom when she was dying. I remember slipping in her room to see if she was breathing. It was hard for me but not as hard as going through it with a husband would be. My heart goes out to you. Hugs from So. CA.

    1. We are in Hospice Grammy! They provide me with what support I need, when I ask for it. Thank you for your kind words and for the hugs

  9. Oh honey, what you're going through.I think it's good that you have a place to share and vent. People cannot always be there for you, even families, maybe especially families. You have to get support where and how you can. I hope you are also getting some nurturing and care, like flowers once in a while or caretaker's day off (where you can take your husband to an adult care center for the day) and do something fun for yourself, getting rest and sleep, making sure you don't burn out.

    Aloha! Maui Jungalow

    1. I think unless someone is going through this with a loved one they have no idea of what it is like to be here 24 hours a day, seven days a week....thus families don't really see it all. I do buy myself flowers and tell him that they are from him. He really likes that.

  10. Once again - sending hugs. I'll let Richard handle the kisses! (that is so sweet!)


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